Beyond Breast Cancer

Yeah, Getting Breast Cancer When You're Young Does Suck

2012-01-22T01:42:00.001-06:00

But as someone with the inside track on this one, I don't think being selective about who gets chemo is going to solve the problem, as this article suggests.

Finding a cure, though, that might help.

You see, if you get cancer before you're 50, it's most likely an advanced and fast-growing cancer that will require the most aggressive chemo treatment and everything else modern medicine has in its toolbox.

Treatment lite is rarely an option for this population.

And if by better personalized adjuvant therapy they mean adding a yoga class, that also isn't going to cut it.

A cure? Now we're talking.

This article gets it right when it reports that many, many studies about breast cancer in young women indicate that the experience especially sucks for them. Breast cancer treatment does destroy fertility, cause weight gain and can push women into immediate, premature menopause.

It's hard to argue that any one of those is not hell to deal with.

Recognizing this is good. Let's not play around about the answer though.

There's only one--Cure, cure, cure, cure, cure, cure, cure, cure, cure, cure.

NOW.

$575

2012-01-22T00:38:00.003-06:00

That's what my new medical oncologist charged for my new patient appointment a few weeks ago.

He met with me for about 25 minutes and went over my cancer status to-date. I helped him out with the several things he got wrong about my diagnosis and filled in the things he didn't know. So I'd say I did at least some of the work at this appt.

Then, after I got the $575 bill from the billing people with no indication what it was for, I had to make two calls. One to the billing people to find out what the bill was about and give them my insurance information so it could go through those channels since it hadn't, and one to his office to give them all the insurance info that I'd already filled out at my new patient appt. and that should have accompanied the bill to the billing people.

So now I've got about 45 minutes in on this.

My bill--$0.

Newsflash: There Is No Overreacting Once You've Had Cancer

2012-01-19T16:23:00.000-06:00

Ughhhhh!!!! Let me tell you that you are on your own if you develop problems from taking tamoxifen. Honestly, there is no doctor who really looks after this type of issue, even though it isn't a rare occurrence.

There's your ob/gyn, but they specialize in babies and don't really have the expertise or experience to guide you in determining--via the least invasive way--whether you have tamoxifen effects or endometrial or uterine cancer.

You see, tamoxifen can cause all of these, and it's impossible to distinguish among them without a D & C and/or full-blown surgery--both of which are too invasive without a darn good reason, in my opinion.

So what I'm looking for is someone who's seen a large number of women who have taken tamoxifen, ended up with ill effects from it, and can speak to the odds of it being one way or the other--crappy side effects of the drug or actual cancer.

For that, I'm thinking I have to go up a notch for my second opinion, to a gynecological oncologist. A second opinion from another ob/gyn who hasn't seen situations like mine in great number doesn't really give me any greater insight, in my opinion.

Funny though, neither of my ob/gyns have suggested this. In fact, when I asked for a referral to a gyn/onc, my current ob/gyn gave the impression I was overstepping.

Gyn/oncs only like to see you once someone else has certified you a cancer carrier, it seems. It's actually the same with oncologists who treat breast cancer. You only see them once it's proven that you have breast cancer.

The difference, however, is that you see a breast surgeon along your path to being definitely diagnosed. They are the reigning experts on breast lumps and help in those judgment calls. They have seen a lot and can talk odds.

There is no such doctor to deal with the grey, might-be-endometrial-or-uterine cancer cases like mine.

And that's frigging annoying. There should be one, and I've decided it needs to be someone with more specific expertise in my situation than an ob/gyn.

I've decided it's going to have to be a gyn/onc. Because really, "We could just cut you open," is not a good answer.

Neither is possibly walking around with a new cancer from treating the old one.

Not a Laughing Matter

2012-01-19T03:16:00.000-06:00

There's a pile of medical bills on my dining room table. They are from physicians groups, hospitals, radiologists, doctor's offices, lab facilities and pharmacies. I incurred most of them from one trip to the emergency room as a result of my tamoxifen-induced anemia.
Our insurance says a trip to the ER will cost $100. My question is how does that work? Do the 5 different billing sources know it and divvy up the money? From the looks of the bills, no. Everyone wants way more than $100.

Of course I need to account for the deductible, the co-insurance and the fact that there's obviously an upcharge if anyone does anything for you in the ER, like bloodwork or an exam or test, etc.

Why would I go to the ER and not want people to run tests, etc. to figure out what the heck is wrong? Who goes to just stop by and pay $100?

The most frustrating thing is that some of the bills just arrive demanding you pay a large sum. There's a ton of information about doing so pretty darn quick or they'll send you hither and yon to mean people who will ruin your credit rating. But there's no breakdown of how they got to that big number or if and how much your insurance has paid.

For all I know, some of these bills aren't even legit. I could envision a scam where someone steals the names of people recently admitted to ER and sends them bogus bills. They'd look no less real than the ones I'm getting by the day over here. And I'm sure they'd make no less sense.

This getting bills from many sources is new to me. Back in smallish town, healthcare was monopolized for the most part. Even though billing there was fractured and a mess, at least every bill came out under the same recognizable name.

Having to pay one company for the facilities, one for the doctor, one for the tests, one for the reading of the tests, one for the lab work and another for the medicine is just overwhelming. I'm having trouble remembering the names of my new doctors; I'm really not up to understanding the labyrinth of their billing procedures.

But too bad, I'll have to figure it out. It's not like anyone else will do it for me. This thought was confirmed as I went to my first appointment with my general practitioner today. A stack of papers in the middle of the reception desk informed patients that we are not to call their office with any billing questions; we must handle those ourselves with our insurance.

I imagined everyone else in the waiting room--alone, at home with their own piles of medical paperwork. It was funny, in a very unfunny way.

Bad News

2012-01-04T00:51:00.002-06:00

My husband's aunt has had a spread of her cancer. It's either breast or ovarian that's metastasized; she's had both and been cancer free for about six years.

She and her family live many miles away from us now, and I'm watching my husband's family try to get and understand the news. Distance has a way of distorting or complicating understanding.

As they struggle to pass along the facts, you can feel the unanswered question--but will she be all right?

I can't help knowing some of what I know. And I guess people can't help looking to me or looking away from me when this is the subject.

I thought about what to say, because it seems like I should say something.

I came up with: "This is bad news." I can't imagine that's overstating the case, and if it encourages people to do that thoughtful thing they're not quite sure they should, then it's good.

My husband and I will send a card. We also invited anyone who wanted to go in on a plant or dinner for the family to let us know.

And I'm definitely hoping and praying for the best.

Zero Tolerance

2011-12-23T18:09:00.000-06:00

I'm sure by now most of you have read or heard about the 28-year-old beauty contest winner who died from breast cancer. And I'm sure everyone has thought, "How could that happen?"

I'm thinking, "We need to make it stop happening. NOW!!!!"

Mostly because one day I could be one of those "poor people."

A good step is putting more money, focus and research into discovering how cancer works in young people. It's different--more insidious, more deadly.

And since the incidence of cancer is growing the fastest among young people (at least for bc, and I'm guessing this holds up across many others as well), that's where we should be exerting the most dollars and energy. Yesterday is not soon enough.

No one should get cancer. Young people, who are just getting underway with families, careers and untold contributions, should get to banish the thought.

Right now. Today. On the double. And all that....

Not Uncommon but No Good Answers

2011-12-17T04:53:00.006-06:00

I found this great article about the challenges of managing the wide array of gynecological issues that premenopausal breast cancer survivors can face.

Well call me affected. According to the article, more than half of women taking tamoxifen experience abnormal bleeding issues.

That seems like a lot. Enough to expect that some good, non-invasive, non-steroid solutions would be on the table.

But that's not the case. As I was presented the options by my ob/gyn yesterday, I can have a D&C operation to get rid of the 2cm abnormally thickened endometrial lining that still remains; I can get monthly Lupron shots to shut down my ovaries for a time; or I can do nothing and probably have to go through more episodes that bring on/prolong anemia.

So no especially savvy choices. Nothing that makes me say, "Look at the wonders of medicine!"

Nope. I'm saying, "How the hell did they let me get to this place, and why are there no good options for putting things right?"

Very annoying. Very, very annoying.

There are a couple other options, but they involve doses of steroids, "just for short periods of time" my gyn assures.

Listen, chick, no steroids are good steroids for an ER+ PR+ bc gal. That's right, in dealing with this, I found out that I'm actually 30% ER+ and 5% PR+. My path report listed PR- because they considered the percent to be low. But there's research out that says any little bit counts, and I feel I should know about it at any rate.

The article does mention some newer non-steroid drugs that might also help, but here's where I come down on taking those or Lupron or any other drug to treat this: It would be taking yet another drug to try and fix problems caused by a drug in the first place. My fear is things would go crazy in yet another, possibly worse way.

And then what? Would they have a drug for that? Probably.

My position on surgery is likewise negative, because it's surgery, which always carries risks.

But feeling like shit until this clears itself out and things get back to normal--it took four years to get this messed up, there's no saying it won't take that long or a good part of it to get fixed--is sounding absurd too

I'm anemic and new to a greatly elevated land where oxygen is scarce to begin with--the combo is hell, just hell I tell you.

I've decided I'm going to make an appt with a gynecological oncologist to talk the options over.

Here's something I've come to realize: ob/gyns are all about delivering the babies. I need to see someone who's seen something like what I have.

It'd be nice if that dr also had a good plan for where we go from here. I hope she/he has at least read the article.

Five Year Anniversary=Anemia

2011-12-08T02:36:00.003-06:00

Somewhere here in early December I've passed my five year mark. Living five years past the date I was officially diagnosed with breast cancer.

As far as anniversaries go, it's a biggie in cancer survivor land. I suppose party hats and cake were in order. Instead I'm forced to mark the occasion with anemia, caused by my four years of tamoxifen treatment.

That means I'm tired. More tired than at any time over the past five years, in fact. If I ever felt sick with cancer, now is the time.

And this makes absolutely no sense to most people. They say: "What do you mean you feel bad now? The five-year clock just struck, you're supposed to be dancing in the street and what-not."

Well, let me remind you again--as I have been reminded again--that cancer doesn't follow the Hallmark Channel script we've all internalized.

It's a bitch for a long, long time. If you're lucky enough to get that time.

Healing, One Way

2011-11-30T14:49:00.007-06:00

I'm the only one,
my plastic surgeon says,
whose navel does this:

closes up.

Everyone else's, I'm supposing then,
heals precisely right--
suture lines fading quietly from red
to white

to gone.

Not like the heavy keloid scars that expand
in the middle of my belly,
threatening to eventually

shut off this opening.

It actually happened twice
after two surgeries
to me alone, the doctor says.

I don't believe it. Can't fathom
there are no other women
walking around with belly buttons
growing shut as a result
of surgery to replace a breast or breasts

lost to cancer.

You see, I've learned from growing older
and from this disease
that I am not unique--
unfathomable, inexplicable things happen
to everyone,

sometimes more than once.

And, if I am so solitary, why
would the cure seem so simple,
so common
as a marble to anchor the place

where one begins?

Expecting the Best

2011-11-04T17:01:00.003-05:00

My new gyn seems pretty good. They got me in for a next-day appt even though her next available was in August. It always amazes me how booked up drs are!

She started with a sit down in her office to go over my issues, definitely not what the average patient gets. But then, the average patient isn't toting around tamoxifen issues.

All of which could be something or nothing--but that will require checking out. That meant an exam today, a bunch of bloodwork and a fancy ultrasound a month from now with the possibility of an even fancier ultrasound if we still have no good answers.

I'm happy she suggested the fancy ultrasounds that I'd read about on the web and my drs back in smallish town either don't have access to, don't know how to use or don't care to offer as options to a patient such as me.

Which brings me to my question: Who else would be a better patient to offer these to? Giving an as-far-as-anyone-knows entirely healthy 42-year-old woman a choice of surgically removing everything or taking your chances can't be the best that can be done.

And I expect the best that can be done for me, especially for me and for anyone else who's already had to have body parts removed through no choice of their own. The fact that treating breast cancer has led to all these other issues is just not acceptable.

I expect my drs to realize this and offer me treatment accordingly. I expect to hear, "We will give you whatever tests that are available in an effort to give you enough information to make a sound decision on what you need to do, if anything, about your gyn issues that are almost undeniably a result of bc treatment.

"For you, we will spare no cost, no technology. It is entirely wrong that a woman should deal with bc at 37.5 and absolutely unconscionable that treatment for bc should have her facing gyn issues at 42."

Yeah, it'd be nice if they threw in an I'm sorry, but I don't expect that, because it's not their disease and they don't get it like those of us who get it do.

So, so far, this onc seems to get it enough to be someone I can work with and that makes me happy.

The time, energy and cost I'm going to have to spend on this, not at all.

Don't feel sorry for me, get mad with me. Mad for me and for all the other women who will have to deal with this until we get a cure for bc and treatments that don't bring on other horrific problems.

I expect better.

I expect the best.

Made the Right Call on Radiation

2011-10-25T01:03:00.018-05:00

Almost five years after I had to make my decision about having radiation or not there is finally some research that would have offered guidance.

Turns out I made the right decision to have radiation, since I have four of the five risk factors they say would benefit from radiation after a mastectomy. And especially since I have the two risk factors that seem to matter most--extracapsular extension (the cancer not only invaded lymph nodes, it also burst out of them into surrounding tissue) and grade 3 aggressiveness (the highest there is).

Making this decision was one of the most difficult of my treatment. As this article states, there has been controversy on this issue. After all, radiation carries risks as well as benefits.

I believe I solicited 5 different opinions--from oncologists and radiologists alike. One glibly told me I was lucky, because with 3 positive nodes I wouldn't need radiation. This has been US standard of care.

Luckily, I also found some doctors who pointed me to studies from other countries that showed there was benefit in adding radiation after mastectomy, especially for younger women with aggressive disease like me.

I've written about this before, but one paragraph in those articles convinced me that I needed to do radiation, even though signing up for 35 nuclear blasts was the last thing I wanted to do.

I will always remember the numbers in that paragraph--women alive 5 and 10 years after bc treatment--were shockingly low. Even with radiation.

But this study points to some good outcomes, of which I am actually one.

I sincerely hope this research gets out there and informs the way drs treat young women with this disease, because it is different for us in so many ways.

Good News but not Done Yet

2011-10-18T11:17:00.001-05:00

No cancer, according to the endometrial biopsy. It's great news, but now I have to figure out what to do about the 10 centimeters of cysts on my left ovary and an endometrial stripe that's three times larger than normal.

I've stopped the tamoxifen, so hopefully there will be some resolution. My onc says it takes at least a few weeks for tamoxifen to clear out of one's system, so there's really no telling how long the do-nothing approach will take to "reset" things.

Other options include taking progesterone or having an operation. I'm not loving either of these, since my cancer reacts to another hormone, estrogen, and I'm totally anti-operation.

I'll ask my new onc about it when I see her next week. I'll also ask her for references to an onc and a gyn onc. I think I might go see both to get a couple opinions on what to do about this.

Ahhhhhhh cancer, the gift that keeps on giving.

Too Much Pink

2011-10-11T23:22:00.004-05:00

Have you noticed that you can not buy anything right now without being asked--either by the cashier or via the electronic pay systems--if you would like to donate to breast cancer awareness?

I have, and it annoys me every time. I consider my response amazingly civil, considering what I would like to say.

I just reply, "I already gave at the office."

I get a lot of puzzled looks, but it usually makes me smile.

Part of Here I Will not Miss

2011-10-05T14:23:00.005-05:00

I have some advice for you--don't get cancer. Or any disease that will make you use health care facilities and providers and cause them to bill you.

It can be a circus. A full-out clown car, three-ring festivity with no one accountable.

Here, in my case, you can't even personally visit customer service and settle your bills. The customer service agent has to literally move between computers for the three different billing systems they use--one for the hospital, one for labs and one for physicians.

And even after all the aerobics they can't always find all your accounts. To cut out the crazy, let's just say my husband and I both recently tried to settle all our healthcare bills, even though some were still billing incorrectly.

Pay it and be done with it, right, so we could move the hell on?

Even though we were both assured there were no more bills anywhere, anyhow, there is still a bill.

So I call about it, but do you think I received apologies for my inconvenience?

Of course you don't, you know how this works--I was told how everything is my fault because I didn't ask to pay the specific bill I didn't know about and the one they obviously couldn't find those days we each went in, checkbook in hands.

Really? First, where is the customer service? Second, what kind of billing manager (who I requested to work with when I insisted they check absolutely everything and have someone who knows more doublecheck everything again) doesn't take all the money due when the person (people) were right there twice trying to give it.

Really!!!!!!!!

I complained about the rude way I was treated to the hospital ombudsman and the cancer advocate. So far haven't heard back from either.

We leave tomorrow, and I have a bad feeling this won't be settled even after I take it on for the fourth time this afternoon--in the very tiny window I have between movers leaving and picking up my son.

Big scream, curse words, all of it.

Done with Cancer Treatment!!!!

2011-10-01T17:41:00.004-05:00

It's technically a year early, since my five years of tamoxifen would have been up next October, not this October.

But I've called it quits, with my onc's blessing, because the benefits of tamoxifen were being outpaced by the possible harm.

One of tamoxifen's known negative side effects can be to increase the endometrial lining. This can lead to cancer.

An ultrasound last week showed an increase happened to me, as well as showing I have two new large cysts on my left ovary.

I requested the test because of pain in my right hip. I thought maybe I had some cysts on that side. Nope, but all these other problems are now revealed, which is a good, though annoying, thing.

My ob/gyn said they don't routinely give these scans, but she's happy I had one done.

Yes, no thanks to her or anyone else on my "medical team."

And they should give these scans, routinely or otherwise.

So now I wait for the results of my endometrial biopsy and push ahead to figure out what is causing the pain on my right side.

I'll keep you posted.

One to Fight Again Another Day

2011-09-21T21:52:00.002-05:00

It looks like I won't be the first person ever to get my ins co to cover an out-of-network ps for breast cancer reconstruction at an in-network rate.

Things were on course for this to happen--eventually. The ins company was promising to piece meal out the coverage and my ps has grown very popular, so getting on her schedule would also be a challenge.

But I was going to do it. No matter what. And maybe especially because the ins co was making it so hard. What's right is right. Right? Right!!!!

But all that is moot now, because we're moving far away for my husband's new job, which is fantastic news.

Less wonderful is knowing I'll likely have to pick up this battle again after we get settled and are under still a different insurance. But I'll deal with that later.

Right now it's all about the packing and the cleaning and the moving.

I am looking forward to having a new crop of oncs to interview in this much bigger city. I want to find one who I believe is looking out for me.

That's their job right? Right!!!!

Cancer Is Never Past Tense

2011-09-19T01:15:00.005-05:00

I just read a great post in reaction to journalist Andrea Mitchell's announcing she had breast cancer.

Sorry, but you don't get to use past tense with cancer. You have it, then you hope you don't, but you don't know until you die of something else or you turn up stage IV.

My pet peeve is people who say, "Aren't you so happy you're all done with cancer."

Get a clue!!!!!

Pink Daisy Project Helps Young BC Patients

2011-08-06T14:20:00.004-05:00

Here's a great story about a woman helping out young women facing breast cancer by providing them the help they need right now.

What a fabulous project!

Yes!!!!!!!!!!!!!!!!!!!!!!!!!!!

2011-08-03T11:38:00.004-05:00

"Brawley said people believe mammography is better than it is.

"I think that the belief is actually hindering our ability to find something better, and we desperately need to find something better,"' he said.

I love this quote and the opinions by this source from today's article about mammogram recommendations.

You'll remember this issue flared about two years ago, as it does every so many years. There was huge outcry over a government panel's recommendation that mammos don't show as much benefit for women under 50.

The suggestion was that women should work with their dr's on the best screening routine, which might be not start until 50 and then have one only every two years rather than starting at 40 and having one annually.

This resulted in many groups screaming "Don't take our mammos away!!!!!!"

Which I think is entirely missing the point. The point that the above source makes perfectly.

I'm one of those who had no identifiable risk factors who nevertheless developed aggressive bc before age 40. I'm also one of those for whom mammos don't work at all.

Yes, yes, yes, Mr. Brawley, we need something better, and we need it now!!!!!!!!!

When the System Fails

2011-07-26T15:00:00.004-05:00

As far as they can tell my lump is nothing suspicious.

The radiologist said they didn't see anything abnormal in that area in either of my last two MRIs. This is slightly odd to me since my onc pulled up an image from the last MRI that showed an area in red right where this hardness is. I guess that red isn't necessarily something worrisome then....

I'll have to make an appt with him sometime here to review the new images and compare them myself. I'll also ask him if my assumption above is the correct one.

So, nothing they think, but still some questions. Really, no one explains this crap to you very well. More accurately, they don't expect you to want to know anything beyond their telling you "it's fine."

There's just no way that could ever fly with me. And it's not that I'm deliberately wanting or trying to be a rebel about it.

The thing is, I crashed this party--term used sarcastically, of course. It was supposed to be "okay" that no one was keeping very close tabs on my breasts, because I was younger than 40, didn't have obvious risk factors and had no family history of breast cancer.

The only reason any dr cared at all about my breasts was to make sure they were working for breastfeeding my child. That was mightily encouraged for as long as I could do it. I made it two years. During that time, issues would come up, and I took them to a breastfeeding clinic dedicated to answering questions about breastfeeding but not particularly concerned about breast issues.

I asked my husband many, many times during my son's first two years who was really looking after my breasts. There was a pediatrician who encouraged breastfeeding, the breastfeeding clinic which did the same, my own gp doctor who deferred all ob/gyn/breast stuff to the ob/gyn, and the ob/gyn who never in all my months of pregnancy or at the six weeks' followup asked about my breasts, gave a breast exam or told me that you're at an increased risk for breast cancer after pregnancy, especially if you're over 30 and it's your first pregnancy.

The emphasis was clearly and solely on were they producing enough milk for my kid. My questions like why was one producing so much and the other practically nothing weren't considered beyond--is he still getting enough?

Then don't worry about it, I was told.

But when the nonproducing side was the one that showed up with multifocal cancer 6 months after I finished breastfeeding, it had me thinking someone probably should have been worrying about it--someone beyond me, because I did my part by asking the question.

Nevertheless, I got myself into breast cancer treatment in enough time to prevent the unthinkable. I did that--there were no tests to save me or medical professionals looking out for me or anything to put this on anyone's radar, including mine, or I would have found it sooner.

Next, the holy grail of screening failed to offer any help in diagnosis. A mammogram didn't see either of my two large lumps. I have to write off that test for the rest of my life, even though it's the only one many of my drs want to offer me.

So what about this system has helped me? What in it can I trust? Who in it is more of an expert about my cancer than me?

No, hearing a medical professional say, "you're fine" doesn't cut it for me. It never will again.

I'll keep you posted.

Nice Girls Do Argue with Their Oncologists (and Insurance Companies)

2011-07-13T01:03:00.006-05:00

Quoting chapter and verse from the Women's Health Act is a good way to get some action from insurance companies. I faxed in my second letter in the late a.m.; I heard back from the ins company early the same afternoon.

Except I wouldn't call it a complete victory. They approved one consultation with my ps and made it very clear that any scans she wanted would need to be preauthorized. I had been trying to get the entire next stage of my reconstruction approved.

What they want me to do is go see her so she can send in a detailed plan of exactly what she will be doing during the surgery.

Except it's not that easy. She's out of network--really out of network, as in several states, a planeride, away. Because we're unemployed and underemployed around here, I'm thinking we can pull off traveling one time, for the surgery itself. Traveling hundreds of miles and spending hundreds of dollars for a 20 minute appt seems like a waste of time and money.

Plus, my ps is booked full, so much so that I can't get the surgery for several months. So the plan now is a phone consult, then she'll do a peer to peer with the ins co to see what she can get approved.

But it will likely come down to having to go see her before the surgery. She's not back in my neck of the wood until November, so I guess I'll make an appt for then. I could schedule surgery for December, but I don't want to travel for this over the winter, so I've decided I'll just wait until next summer for the surgery. But since I've done so much work on this already, I'm just going to keep things moving forward and try to get it all approved as soon as possible.

I also talked my onc into an MRI to see what the new lump is (hopefully). This scan is even more important since I can't get into see my ps for surgery until a year from now.

If the lump doesn't appear any different or bigger when compared to my last MRI six months ago, I'll be okay waiting that long to have all these hard areas removed during the next stage of reconstruction. But if things have changed and grown, I'm going to want a biopsy before then.

Hopefully that's not the case, because it'd be a bitch to figure out how to get it done correctly.

Something I'm still scratching my head about is my onc's surprise that I would want tests for more information and would be willing to consider a biopsy.

Does he not realize that I've had cancer? Cancer that felt like a hard lump in my breast. Can it really come as news to him that I have a 0 tolerance policy on unidentified breast lumps??!!!!!!!

I'll keep you posted.

Questions I'm Taking to My Appt Tomorrow

2011-07-06T22:39:00.004-05:00

I think the best way to get some answers is to ask the many questions I have at my appt tomorrow. Here they are:

1. Can ultrasounds miss cancer?

2. Aren’t ultrasounds operator-dependent? Could it be that the operator just didn’t find the lump?

3. Can an MRI pick up things that an ultrasound misses?

4. When something doesn’t show on an ultrasound but does show on an MRI, which is considered more credible and why?

5. What is the abnormal area from the Nov. 2010 MRI that appears exactly where we feel the lump? When I asked this of the radiologist, I was told that it would be included in the ultrasound report. Where is it?

6. We agree that there is a lump. An ultrasound says it is normal breast tissue, even though I have had a mastectomy and two reconstructive surgeries, which would make that hard to believe.

7. If that is the case, why am I only feeling it now and why is it only starting to show up on imaging now? If it is breast tissue, why is there something hard in it? Isn’t that even more reason to get this checked out, considering my history?

8. The radiologist says it might be related to fat necrosis. I don’t even know what that means. I can’t imagine it’s an answer that would bring anyone peace of mind. What is that estimation based upon?

9. Why did you initially want to do an MRI on this, and then when an ultrasound didn’t pick anything up, decide that test wouldn’t be helpful, even though my last MRI clearly shows there is something there?

10. Why wouldn’t it help to do an MRI and compare today’s (6-month later) results with the last MRI results? It might not tell us what it is, but it could tell us if it’s growing, which would definitely help with peace of mind and would offer one piece of definitive evidence that we don’t have today.

11. What definitive evidence do we have today?

12. Why didn’t you tell me that it was an either-or choice between an MRI or an ultrasound?

13. Why does it have to be an either-or choice between an MRI or an ultrasound?

14. Your nurse told me that you said, “We’ve done all we can for you.” How do you come to that conclusion?

15. What is the standard of care for a breast lump? If it’s palpable but doesn’t show on a mammogram, I know they go to ultrasound because this is what it took to diagnose my original cancer. If it’s still palpable but doesn’t show on ultrasound, what is standard of care? What if this lump also showed on a previous MRI, what is standard of care? What is standard of care if this happens to a 42-year-old woman who has had Grade 3, node positive, multifocal, Her 2+++++ cancer?

I'll keep you posted

I Had a Lumpectomy. . . and a Mammogram in 1920, or So They Say

2011-07-06T14:42:00.006-05:00

I could understand if people reading my blog might wonder if health care providers could really be so inept.

Let me just present the facts and let you be the judge:

I found a lump on my reconstructed breast. A new lump, well away from the area of probable fat necrosis that's been a headline recently. My husband agrees it's a lump; my onc agrees it's a lump.

Onc checked my latest MRI, dated Nov. 2010, and there was an area of abnormality--showed in red instead of nothing--right where this lump is. But there were no comments about it on the MRI.

Onc checked with radiologist who read that MRI. She said if we find a lump, we should image it.

Onc called to set up a breast MRI. I really hate breast MRIs. They have to be the most annoying test out there--and I've sampled enough of what's available to have an opinion.

So I asked if we could start with an ultrasound and do an MRI if the ultrasound doesn't show anything.

Did the ultrasound. The report from that states: "Patient is status post left lumpectomy..." It also says they did a comparison between a "mammogram dated 10/08/1920." No those aren't my typos, aka big fat errors, they are my health care professionals'.

Can I really take this report seriously?

No, because it gets worse. They determine from the ultrasound that "only normal appearing fibroglandular tissue is seen..."

Fibroglandular tissue is not fat; it's breast tissue, which might be expected in a woman who had a lumpectomy.

Hello, first big fat error--I had a MASTECTOMY!!!! You know, the surgery where they cut off the whole breast so there are not hard lumps of breast tissue left!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I had this mastectomy almost four years ago now. And I've had two reconstructive surgeries after that. I've also had regular mammos, ultrasounds and MRIs. Breast tissue has never shown up during any of this, and I've never felt this lump before a month ago.

So while the rad's impression is "unremarkable left breast ultrasound," I have to vociferously and vehemently disagree. Finding a hunk of breast tissue in a woman with a mastectomy is most assuredly remarkable.

If there's any breast tissue in there and if this tissue is getting more noticeable over time, it needs to be checked out. It can't take a rocket scientist to posit there might be a growing tumor, because you know, breast cancer likes breast tissue.

I give that theory as much and probably more weight than the rad's conclusion: "The area of palpable concern may be related to fat necrosis." Remember--fibroglandular tissue is specifically not fat.

And by the depth and path of their reasoning, it may also be related to a gold fish swimming up there.....

The sloppiness and contradictions within this one short piece of paper are astonishing and disturbing to me.

That they're trying to use this crap of paper (typo is mine, and intended) to refuse the MRI or that was previously offered--or any other followup here--is downright wrong.

I cannot say it enough. If you feel a new lump in your breast, make them find out what it is, not what it may be.

And keep on them because sadly, that is what it takes.

Sending Another Letter

2011-06-23T23:36:00.004-05:00

I had a very disappointing call with my ins co yesterday about getting preauthorization to see my ps to finish reconstruction and address some complications that have arisen.

While it's been more than a month since I started trying for this, I was told there is no date by when they might have a decision.

Actually, their own policy states they have 30 days after the appeal is submitted to decide. The appeal went in June 5, so I see an end in sight.

But since I want to get this figured out before then, I did a little research that led me to write this letter that I will fax tomorrow. It might help; it might not. But I'm happy to have the information, and really it should count for something.

June 23, 2011

Re: My appeal for authorization to return to see Dr. Marga Massey, an out of network doctor, for complications of reconstruction and to finish reconstruction after breast cancer.

Dear Dr.:

I believe it is imperative that you have this information from the Women’s Health and Cancer Rights Act of 1998:

“Under WHCRA, group health plans, insurance companies and health maintenance organizations (HMOs) offering mastectomy coverage also must provide coverage for certain services relating to the mastectomy in a manner determined in consultation with your attending physician and you. This required coverage includes all stages of reconstruction of the breast on which the mastectomy was performed, surgery and reconstruction of the other breast to produce a symmetrical appearance, prostheses and treatment of physical complications of the mastectomy, including lymphedema.” (source: US Department of Labor website)

The emphasis is mine, and I hope it reminds you that a woman’s reconstruction options are not to be determined by the solitary decision of an insurance company.

I need to further note that your insurance company has a network deficit of physicians who can perform a stacked DIEP reconstruction—the precise type of reconstruction that I am trying to complete.

Because the law requires you to listen to my three doctors’ recommendations as well as to my own wishes, and because you have a network deficit of doctors who can perform a stacked DIEP, I am asking that you immediately preauthorize me to see Dr. Marga Massey to complete my reconstruction and to resolve the complications of fat necrosis that have arisen.

Please send confirmation of this preauthorization to me and to all doctors who have contacted you on my behalf.

New Subhead

2011-06-18T21:25:00.005-05:00

Turns out there are two talking points I'm really all about on this blog--we have to do better than mammograms and after successful cancer treatment, there should be yearly scans for those who want them.

I think I'll rotate them up there, or maybe I'll play around and find a way to emphasize both but not clutter things up too much.

Anyway, you'll remember from an earlier post that I'm not much on slogans for breast cancer, but the writing teacher in me knows that you need to be able to make your point in one sentence.

And that new sentence is pretty much where I stand on scans after effective cancer treatment.

By all counts, I had aggressive cancer, but the followup for that is the same as the followup for every other type of breast cancer--scan if you present with symptoms as defined by your onc.

So basically your onc is your gatekeeper. I guess that works fine if you see eye to eye; I know it doesn't when you don't.

So what I want seems pretty simple and is something that I can not believe is not standard in cases where a person had aggressive cancer--a yearly MRI or PET scan to see where things stand.

I'm tired of hearing reasons why this isn't a good idea--I'd worry too much, it might lead to unneeded biopsies and follow up--and those are the only two that I think are out there. Oh, except the big one no one says--it costs so damn much.

Whatever, I'm only concerned about my one reason for wanting a yearly scan: it would catch any changes sooner than anything else we have can.

Honestly, so many recurrences present no definitive symptoms that they go undiagnosed for way too long, in my opinion. Long enough, in my opinion, that you might die sooner than you would if they were discovered via regular scans.

We all know way too many people whose cancer recurrences were found accidentally or incidentally when checking something else out. I personally know waaaaaay too many cases like this to think one-size-fits-all followup, where that followup amounts to nothing, is not good enough.

Don't worry about my feelings or my ability to decide what to follow up on or ignore. And please get past the cost.

Let us have a yearly scan if we know that's what's right for us.

Clear X-Ray

2011-06-14T21:28:00.002-05:00

My primary doc's nurse called this am about my chest x-ray: all clear. So that's good news. I wonder if it means I don't have pneumonia or that I could, it just didn't show up on this x-ray?

At any rate, my doc still wants me on antibiotics, and I'm pretty sure this is more than a common cold. My son and husband are both telling me not to cough so loud. As if I can help it!

I'll keep you posted.

Not My Idea of Vacation

2011-06-13T23:11:00.004-05:00

I'm lucky enough to have a job where I get the summer off. I wrapped things up at noon this past Wednesday and spent a lovely night with my two guys. Then I went to sleep, dreaming about my next two months of freedom.

And woke up Thursday with every flu and cold symptom in the book. I was sick; I felt sicker than I've ever felt in my life.

Somewhere over the weekend I became convinced it was pneumonia. I lived through the weekend and made an appt today with my primary doc.

He also thinks my lungs and my story sound like pneumonia. So he gave me some antibiotics and took a chest x-ray "to be sure we're not missing something" and because "if it doesn't go away, we'll know what things looked like at this point in time."

The ex-cancer patient in me knows what he's saying there, and I'm glad he did the x-ray. I'll be interested to see what it shows tomorrow when I call for the results.

But most likely I just have pneumonia, which I think is odd, but maybe not so odd. I had it once before, during chemo and radiation. That was a picnic--the rad techs would get very testy when I had a coughing fit just as they finally had me in position for a zap.

At least this time I don't have those worries. I also hope it clears up quicker this time. Last time it took months to get better. They didn't give me any medicine at all last time...makes me wonder what they thought it was or wasn't back then....

I'll keep you posted.

My 2 Cents, Sorry It's All I Can Afford Now

2011-06-12T22:52:00.012-05:00

Jeanne Sather, author of The Assertive Cancer Patient, a blog I check daily, was kind enough to give me a mention the other day. In blog world, that's very flattering.

I've written about her before. She's the woman who's lived with metastatic Her2+ cancer for many, many impressive years.

Lately she's making news by getting a big drug company to make "the T drug" more widely available so women for whom it's working can receive it at facilities closer to their homes instead of having to travel to distant trial sites.

Makes sense, right? Of course it takes an assertive cancer patient to make it happen.

But even though they're rushing this approval, it's still going to take several months to shake out. In the meantime, she and a companion will need to continue to fly and stay at a hotel for a couple days every three weeks so she can receive the drug.

Of course, all this takes money. She accepts donations and sells some fabulous jewely at her site.

My husband and I made an anonymous donation early in her fundraising efforts, before we had trouble on the employment front.

One way I plan to celebrate the good fortune of righting that ship (it will happen, it will happen), is by making another donation when it does.

All the slogans and pinkness are for crap; what counts is helping women like this live!!!!

Ugh, Another Night Spent on This!!

2011-06-02T19:31:00.007-05:00

Here's my letter added to the appeal pile, as requested by insurance:

June 2, 2011

Dear Dr. XXXX:

You have requested that I help you understand my medical concern and the reason that two of my doctors have referred me to an out of network physician—Dr. Marga Massey.

I believe the letters from my doctors explain this clearly, but I’m happy to further clarify their words.

First, my primary care doctor is referring me to Dr. Massey for the next stage of my breast reconstruction after breast cancer and mastectomy. I have had the first two stages of a stacked DIEP reconstruction and am now ready to pursue the third stage, which involves reshaping the breast mound, creating a nipple, scar revisions and addressing the hard spots that have appeared and are getting larger, as well as other issues that might need to be taken care of in working toward completing my reconstruction process.

In his letter, my primary care physician stressed the importance of going to Dr. Massey for continuation of care, and I agree with him 100%. No other doctor in this area can do a stacked DIEP. Both my safety and successful reconstruction are clearly optimized by staying with Dr. Massey to complete the reconstruction she has worked on to this point.

You asked in your letter how this will benefit my health. All I can say is that federal law addresses breast reconstruction after breast cancer. Its benefit to my health is both implied and protected.

Second, my oncologist is referring me to Dr. Massey so she can positively identify the hard areas that are growing in the reconstructed breast. As these numerous hard areas are exactly where my original two cancerous tumors were, I am trying to do what every responsible 41-year-old mother of a seven year-old would do: find out for sure that they are not cancer.

Since certainty requires a biopsy and removal of a rather large area of my flap, my oncologist is also following continuation of care guidelines when referring me to Dr. Massey. As he wrote in his letter, she is in the best position to assess and repair my flap because she is the surgeon who did the work in the first place. Any other surgeon would not have this insight.

I do ask that this matter be decided quickly as I am anxious to move ahead with my reconstruction process in hopes of finishing it up very soon. It has been a long four years trying to put my life and body back together after cancer; the sooner I can complete the journey, the better—for me and my family.

Maybe Stage 3

2011-05-25T22:35:00.003-05:00

I'm in full appeal mode to get another stage of my reconstruction done with my ps this summer. I've had my first two reconstruction surgeries in June/July, and if all goes well, it looks like that may be the case again.

The ins co that denied my onc's referral to my ps now has appeal letters from my onc and my primary doc and a copy of the one my original bs wrote to initially get the DIEP. This only required too many calls, a half day off work and collecting and faxing everything in my free time.

Basically it's a continuity of care issue, and I can't see why my finishing up the rather small stuff that's left (compared to my other surgeries--both around 10 hours) with the ps I've used to this point is such a big deal.

In the denial letter, they admitted they don't have a dr in-network who can do a DIEP, but said I needed to choose between two drs a state over in an extended network. I know from previous research that these drs do DIEP, but they don't do a stacked DIEP, which is what I had.

So let's suppose I think for a minute that swapping out ps's halfway through any job is a good idea....I still don't want to let any dr who isn't highly skilled at my exact form of reconstruction anywhere near me.

This hunk of belly fat and skin is my one shot at reconstruction. I've put major time, effort, inconvenience and money into getting to this point. I'm not just going to say, "Okay, it's all the same. Send me to whomever you got on your list."

My reaction was more like: "What the hell? How crazy are the men and women who have never had breast cancer and never needed reconstruction but who still make these kinds of decisions?"

So if you think breast reconstruction is always protected by law or something, I think it's more like "kinda protected."

So much, of course, depends on the insurance cos.

And I Expect an Answer!

2011-04-08T21:34:00.005-05:00

I love when I read great blog posts like this one that asks where are the bc screening tests for young women?

Where indeed?

Where is the test that could have caught my cancer before the two tumors were large enough for me to easily feel when I rolled over in bed?

And after I pointed them out to everyone, and they marked them with tape, where was the test that would have spotted them, unlike the mammogram that showed nothing because I'm young, and like many young women, have dense breasts?

It's a not-well-enough-known fact that mammograms don't work well on dense breasts. But mammograms are the best we have right now--at least the best most of us have access to because insurance co's aren't going to cough up for MRI's until you come in with lumps and mammograms fail. And sometimes only then if you're obnoxious enough to insist.

Thank God I'm obnoxious.

And thank God other people are asking this very important question because what we have now for young women is nothing, which is just not good enough!!!!

Assinine Study

2011-03-30T20:40:00.007-05:00

All I can say is this article couldn't have been written by someone who is young and has experienced bc.

Why?

Because if you get cancer when you're young, it's going to be more aggressive, and there is an exponentially greater chance that it will recur.

I remember being excited to find a bc magazine among the popular tabloids on my supermarket's shelf. But I didn't buy it, because the first two articles I skimmed included parenthetical notes about sources having died before press time. Those who died had all been younger than 40 when they were diagnosed.

I also know way too many young women from support groups and elsewhere who have had recurrences or who are battling metastatic disease.

Unless they are not in touch with reality, young women have every reason in the world to worry.

What would they worry about?

Pretty much everything I write about in this blog--insurance, job security or lack thereof, reconstruction, finances, family, kids....

All the usual stuff that keeps people up nights in the crazy-busy middle years--plus a disease that you never get to know you're free of until you die of something else.

Know what would let me stop worrying?

Find the cure! NOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Maybe It's Time to Try Something New

2011-03-17T19:29:00.003-05:00

So I'm starting to pursue finishing up my reconstruction. It's been a long 4-year journey, and I'm ready to wrap things up. I wrote a week or so ago about having to start all over on the out of network exception because I have new insurance.

Early research has me thinking I might also be looking at another doctor. One who seems to be the expert at a really cutting-edge approach to reconstruction that I'm hoping might work to fix some of my issues.

After two stages of the DIEP process, there is a large area of fat necrosis right where I found my two cancerous lumps. This is very nerve-wracking for me, and since there's a good chance it won't soften up, I'd prefer to get it out of there. My ps warns me removing that much will likely leave a deficit. Since it's at the top of the foob, that's especially unfortunate.

I'd like to find something and someone who can fill this back up with my fat but in such a way that it will not become fat necrosis. I had fat necrosis in this area after DIEP stage 1 and it reformed in almost exactly the same way after being removed and refilled with new fat after stage 2. I doubt stage 3 results would be any better using the same process.

I'm thinking I need a different approach. Maybe something like micro-fat grafting as it's done by a dr. in Miami. This guy is a microsurgeon and has done DIEPs. He wanted to find something that would require less surgery and less recovery time than a DIEP.

So he's designed a suction bra that's supposed to prime the skin matrix to become a good host for fat that he liposuctions, then liquifies and carefully injects in a couple visits over many months. The goal is to build entire foobs this way.

This sounds both far-fetched and entirely possible. I don't need to create an entire foob. I need the one I have softened up and the skin on it stretched so things will look more natural, and I won't always have to worry/wonder--is it fat necrosis or cancer?

I e-mailed him a couple questions a couple days ago, and his nurse called me back the next day to talk. I was at work and haven't had time to get back with her yet, but I'm sure I will.

I'll keep you posted.

Work, Work, Work

2011-03-01T18:40:00.006-06:00

I have new primary insurance because of my job. That means if I want to finish reconstruction anytime soon with the ps I've used to this point, I have to wrangle an out-of-network exception for the third time.

So here's another thing I'm sure I didn't think of when I chose to go to a beyond-my-immediate-area ps--though I don't regret doing that for a minute. I can't imagine not doing the research to find someone who is at the top of her game, and then doing whatever I need to get that expertise.

So it's a pain, of course, but worth it. The biggest hurdles now are trying to find time to call and get things rolling and finding the right in-network doctor to give me a referral to my ps.

This all requires everyone calling everyone back and that doesn't fit well with what I'm doing. I was actually quite lucky that I wasn't working during most of my treatment and reconstruction. You just need time to work some of this stuff out.

My insurance is an HMO, which means I need an in-network doctor's referral for most everything. I'm trying to decide which in-network doctor would give the strongest referral and would be willing to fight if I'm denied. I really, really want this to go through the first time, so I'm trying to choose carefully.

However, as you might recall, I had a lot of trouble finding a local doctor who would follow up after my last DIEP stage. Whoever that person should have been is the person I need now....

The way I see it, I could ask the surgeon who finally did see me, the head of surgery who said he would see me, the ps who only does implants, my oncologist or my primary care doctor.

Unfortunately, to fully explain things and gauge buy-in, I think I'll have to make an appointment with whomever I decide to pursue. And if that doesn't work, possibly other appointments.

Which brings me back to thinking it would be nice if I didn't have to work, so I could work on this.

A Little Paranoia Does Me Good

2011-02-03T10:48:00.003-06:00

I am now double-covered with both my insurance through work and as a dependent on my husband's plan.

So what does that mean?

I asked my HR dept. that question and found out that since I now have a job, my insurance is considered my primary insurance and that is what will be billed first.

My husband's insurance is considered my secondary insurance and that will get billed for anything not covered by my primary insurance.

That has to be good, right? Call me skeptical, but I see a chance for both insurances to deny things, saying the other can/should handle it.

Just when I was thinking maybe I was being paranoid, I got a letter from my insurance co., asking for detailed information about my other insurance and everyone on that policy.

It came under the excuse that I didn't fill everything out completely in my application for insurance, but I had, including the couple lines that asked for information about any other insurance I have.

I'm sure that's what generated this letter, the "coordination of benefits" letter that makes a huge point of telling me what happens in the case they are the secondary insurance, but nothing about what happens if they are the primary insurance, which they are. And no help in figuring out which they are and an option to not fill out the form if they are the primary.

I can only see it as a fishing expedition to find out the extent of my secondary coverage. They ask for enough information to find out everything about my other coverage, and I just don't think they should get to know that.

So I called their customer service and explained this. And got transferred to a manager, who quickly backed down and said I didn't have to send back the form; she would indicate that they are my primary and everything can move ahead without delay.

As I was hanging up, I noticed that this form came with a stamped reply envelope. I couldn't help but think that was suspicious. Note to self: think twice about providing any information to insurance companies that comes with a stamped return envelope. What do they want that information for?

I've found that at least with insurance issues, I couldn't possibly be paranoid enough.

A Bona Fide Dilemma

2011-01-21T22:22:00.003-06:00

I've been busy getting used to 40-hour weeks after a four-year break from the paid workforce. I've also been busy sorting out the best way to negotiate insurance for the family after our main bread-winner was laid off.

And it's not especially easy.

For example, we have a short window to decide to take very expensive COBRA insurance. This is good for 13 months, then runs out.

We could instead take insurance through my work. It's cheaper but possibly not as good, at least not out of the area, and I have to go out of the area to finish reconstruction. There's also a short window of time for deciding whether or not to take this insurance. Choosing this option means I would have to keep the job, at least until we find other jobs. And, while it is cheaper than COBRA, it would still take most of my earnings to cover insurance for the family.

I would literally be "working for insurance," which is just depressing.

The most frustrating thing is that you can't revise your decision and take the other option if that turns out to be better for your family. You have to choose one and be committed to either paying huge premiums or committing to a job for the long haul.

Of course my spouse could land the perfect job tomorrow, and I hope he does, but that option isn't on the table right now.

We have to choose from the ones that are, and each has its problems. But, I guess, both are better than no insurance.

You Know You're a Cancer Survivor When

2010-12-27T20:55:00.003-06:00

You spend the week before you start a new job fitting in scans and appointments--especially since you've met your out of pocket maximum for this year and next year's insurance picture is sketchy.

That's right, I start a new job after the new year. It has HMO-type insurance, and we'll have to figure out the quality and timing to decide if we choose that or choose COBRA. But at well over $1000 a month, COBRA isn't an appealing option.

We are a long way from a workable health system in this country. I thought that before my family was laid off; I think that even more now. Almost $2000 a month just to have health coverage, and then you have to pay for your portion of the care. Then, after about a year, you lose the privilege of paying this amount and are left, I guess, with no coverage?

I'll be needing a pacemaker if it comes to that. Maybe I can get into a cardiologist before Friday. . . .

Usual Verdict: Probably OK

2010-12-23T13:27:00.002-06:00

The breast MRI doesn't show anything especially suspicious, so everything's being written off as most likely fat necrosis. This screening business is not for anyone who wants definite answers. . . like me.

But my doctor's not worried, or at least he's willing to say something like "Let's play the odds" and just see you back in six months.

I think that was humor. I know I didn't laugh.

He's also not concerned about the cyst on my hip and back. Apparently, the chance that I might have had a hip injury in the past or been born with the hip cyst is greater than the possibility it could be cancer in his mind.

So that's as good as I get this go round.

I have some thoughts about how it sucks to experience the eternal uncertainty of a possible cancer recurrence and the intense uncertainty of unemployment at the same time. But I'm not going to ruin my Christmas.

It can wait til the New Year.

Happy, happy...

Not What I Wanted for the Holidays

2010-12-17T01:19:00.005-06:00

Well, crap. The adults in my household are now 100% unemployed. Merry frickin' Christmas!

Naturally my first thought is for the insurance. Losing a job is always a huge deal. If you have health issues, it's potentially catastrophic.

My hope with insurance reform was that exactly this type of problem would be fixed, but I don't see much progress on that, at least not anything that will help my family.

And the sad truth is that finding a job out there ain't no picnic.

All I want for Christmas is for one of us to get a job with some good insurance benefits.

I guess the good news is that this motivated me to get my local cancer center to work out a breast MRI this year in my town. Actually it was much simpler than I would have predicted.

I never cancelled my pelvic MRI, so I just asked my onc to order the test and use my standing appt but change it to a breast MRI. Apparently my onc wanted me to have a breast MRI before I see him next week for my every few month check. So we're on the same page about that, which is good.

I'll keep you posted.

Good News and Additional Answers

2010-12-08T13:13:00.002-06:00

I got good news. There's no reason I can't be in the watch and wait category when it comes to the odd ovarian cysts I get. Nothing cancer-looking going on, so just follow up with ultrasounds.

The MRI even showed a couple cysts that have been causing the back pain I've been having for a couple years and the hip pain that's also developed. I'll follow up with my primary care dr on that, but it's also not a big deal.

So it was a good trip. In fact, I think I'll have my breast MRI done and read up there too. Maybe I'll get more of an answer about what the different areas of hardness are. Maybe not, but it's worth a try. And the whole experience just felt more professional than what I encounter locally.

After all, I have answers two weeks ahead of when I'd even be able to get in for a scan locally, and the techs up in big city caught that the scan wasn't ordered right and got it changed so I could have the contrast that can really tell them something. If I waited around for the local test, I doubt it would have picked up the cysts causing my back and hip pain and I wouldn't have that info.

So as annoying time and money-wise as it is, traveling for medical care can sometimes yield more info, which can feel priceless.

Off to the Big City--Again

2010-12-04T20:52:00.003-06:00

It's off to the big city early next week to get the pelvic MRI and then an appt with a gyn/onc who comes highly recommended.

Funny how things start happening when you get away from my smallish town.

My Christmas wish for everyone is that they never need to really use their medical resources. That's when you start finding their limits, and it's not a good discovery.

My Idea of Personalized Medicine

2010-12-01T13:02:00.008-06:00

Well, I am not a platinum member at my local medical joint; there is no interest in moving up the MRI. I've moved on to trying to get a referral to a gyn/onc a few towns over and will work with them on the MRI.

My ob/gyn sees it this way: with cysts in premenopausal women, you either follow them with ultrasounds or you operate and remove the cysts/ovary.

From my reading, I also know you would generally prescribe birth control pills to encourage the cysts to resolve. You wouldn't do that with me because my cancer is estrogen receptor positive, which means it's fueled by estrogen, and birth control pills really mess with estrogen.

So, I'm not the typical patient. Which leads me to say it doesn't make sense to offer me the same choices as a typical patient. I'm a post-bc treatment, premenopausal patient who has taken tamoxifen for three years and will take it for two more years for ER+ bc.

I'll bet my ob/gyn has treated fewer than 10 such patients, and in fact, I might be her only patient with these characteristics.

This isn't especially comforting, but it is important for me to realize, I think.

She might not, and doesn't seem to, realize that there is actually a third option for responding to cysts in my case--get a pelvic MRI to collect as much information as possible about what's going on because this could be bc spread to the ovaries, a possibility that doesn't come into play for the typical patient.

And if you're talking about ruling out a Stage IV bc diagnosis, I think proceeding with some speed is the prudent way to go.

That's what I call personalized medicine. I can't seem to get my dr's interested, but that doesn't mean I can't practice it for myself.

Fundraiser for the Assertive Patient

2010-11-29T22:36:00.003-06:00

Jeanne Sather, the Assertive Patient, has beaten all the odds. She's lived for nine years with metastatic breast cancer, but in the process she's burned through her money.

She needs it now to pay for trips to get a trial drug that's working well for her and that could give her many more years of life.

I'm especially interested in her story since she's Her+ like me, and it's good to know they are working on more and more options for my type of cancer.

She's asked people to post a link to her site if they can. I'm happy to do so because she's a great writer.

What's Above the Platinum Level?

2010-11-22T13:12:00.005-06:00

I admit to having a "frequent flier" mentality when it comes to getting service at my cancer center/hospital/doctors' offices.

I expect a higher level of access and service based on what I've been through with these people.

Some of this is unrealistic and some of it is understandable, in my opinion.

There have been weeks where I've been to daily appointments/scans/procedures and sometimes more than once in a day. I've made use of most of their expensive equipment and have had cause to visit many, many departments.

So there are things that annoy me, like having to pay for parking. It feels over the top with all the money they're raking in from my insurance company and me. I also hate, hate, hate that getting copies of my scan and test reports is more complicated than I think it should be. I believe with my history I should be able to walk into any department and request a copy of anything, and a nurse should be called out, pass it over and answer any questions.

Instead, every time I have to fill out a "request for information" form that basically says I want them to give information to me, which should be obvious by now. I deeply resent this 10 minutes of stall time--add it up and it's taken hours out of my life. What makes sense for someone who might do this once in their life and me just aren't the same things, in my opinion.

Today I'm annoyed with the long wait for a pelvic MRI to see what's going on with complex and solid cysts on my ovary. The first available appointment is a month away, which would put results back right around Christmas. I went through my breast cancer diagnosis and aftermath right over the holidays four years ago, and I know I don't want to do that again. Healthcare the world over becomes a barren wasteland of nothing happening until late January.

Because I know this because I've been through it, I'm thinking my "frequent flier" status should help me get this scan moved up. After all, I'm having it because there's some concern this could actually be breast cancer spread to the ovaries. Like I'd want to wait a month to get more information on this!!!!

But the scheduling tech could only keep repeating that they can do nothing, unless my provider calls and makes the case for moving it up. So I have a message in to her. Hopefully she agrees that I do qualify for "frequent flier" status.

I'll keep you posted.

More on Ovarian Masses

2010-11-22T00:02:00.005-06:00

Here's a link to an article that gives comprehensive information about ovarian masses.

Since most ovarian cancer affects older, postmenopausal women, there's a lot more discussion about what to do in those cases.

Relevant to my case, the article notes that it's not uncommon for breast cancer to spread to the ovaries and that solid masses in premenopausal women warrant surgical evaluation.

Not exactly two things I want to read, mostly because I would first have to find someone to do that surgical evaluation. There is no gyn/onc in my town, and honestly, if surgical evaluation is being prompted because there's a fear it could be cancer, I'd want a gyn/onc doing the surgery.

As I understand it, they have a different protocol that anticipates there could be a problem, so they take special care to explore all the organs, etc. This might put them in a better position than an ob/gyn to get all the cancer if that's what it indeed is.

I've emailed with a woman who had her ovaries out at the same time she had a DIEP revision. This was down in NOLA, where my ps operates. So I have that recommendation of a gyn/onc, but it involves a little more than a little travel for me. I'll have to see if this gyn/onc is covered with my insurance, but since there is no gyn/onc in my town, maybe this will fall into the out-of-network exception process that I used to get my ps.

I guess the good news is I'll be seeing my ps at her Chicago office in a couple days. I can ask her all these fun questions then. She's just expecting a post-surgical check, but when have I ever been so simple?

I'll keep you posted.

With the Ovarian Cysts Again!!!!

2010-11-17T21:27:00.004-06:00

I was getting everything scheduled for my yearly ob/gyn visit and thought maybe we should throw in a pelvic ultrasound to follow up on the complex cysts that went away about a year or so ago.

Then I pushed for it because I felt a pressure behind my left hip if I stretched that way. My mind immediately went to ovarian cysts, though I've never actually felt any before. And my guess was right. I have three complex ovarian cysts on the left ovary.

My ob/gyn gave me the choice she did last time this happened: wait and see or remove the ovary. She said it's whatever I'm comfortable with.

Gah! I'm not comfortable with possible cancer in my body; I'm also not comfortable with taking things out that don't need to come out.

So I did a bunch of reading on the Internet and found three papers from reliable sources that recommended a pelvic MRI as the next step. Anything, I say, to give me some information I can use to make a decision. My ob/gyn warned MRI's will show everything, but I don't see a downside to that.

I chalk this recurring problem up to chemo and tamoxifen and my premenopausal status--at least at the beginning of treatment. Who knows where I am now?

Actually, I know, I'm in some messed-up middle land where I make cysts that I can't get rid of. It's probably a fairly common thing among younger women with ER+ bc that's just not often talked about.

Or, it could be a bc spread to my left ovary. The ER+ bc could have gone in search of the hormones in my premenopausal ovary.

Really, the only thing different this time is that the rad reading the ultrasound called them masses and lesions rather than cysts. Definitely not two words I'm jazzed to read on a report, but it isn't necessarily significant.

I'm waiting for the ob/gyn's nurse to call me with results of the endometrial biopsy I had the other day and to make an appt for the MRI.

Waiting is never fun.

I'll keep you posted.

I Wanted a Second Child; I Got Cancer Instead

2010-11-10T23:23:00.005-06:00

It was a week where family asked me two questions I don't like to answer. That's because most people, even family, don't really want to hear the real answers.

Since most would consider it TMI and they can't do anything about it anyway, it's not really fair to burden them with it. But like I told one who asked, "I blog about all that."

So here are the questions:

Are you going to have any more children?

and

Does it seem like all that cancer stuff was forever-ago now?

No

and

No.

But of course there's so much more to each answer.

I'm not going to have any more children because there's a strong chance I won't recover my fertility in time to have one before menopause hits (if it already hasn't, since chemo and tamoxifen have pretty much knocked it out for a long time).

Plus I have to take tamoxifen for two more years, and it's a drug you cannot take while pregnant. It really is a choice between treating my cancer or having another child, and I have to go with treating the cancer.

Then I don't feel there is the science yet to know if having a child after bc is a good or bad idea. In my opinion, it most likely depends on the specific factors of the cancer and just blind good or bad luck.

But without enough evidence pointing toward this being a good idea, I don't feel right risking my current responsibility to be here for the child I already have, no matter what.

So, no. No, it looks like I'm probably not going to have any more children.

And no, the spectre of cancer never really leaves you. I still have more-regular-than-I-would-like appointments related to the cancer I had or for ruling out its return or the development of a new cancer.

Then I am absolutely livid that there is no good way to find a recurrence. It's just a patchwork of simple and complex tests that might or might not mean something and a doctor's observation, which literally means someone looking at you and asking how things are going. Maybe that doesn't sound so bad, but it feels neither comprehensive nor secure to me.

And, really now that I'm thinking about it, these two issues intersect in a very powerful way for me, as I think they would for most parents who have faced a serious illness that yet has the potential to take you away from your child.

That is the fear; that is the urgency; that is the big goddamn deal that I'm always writing about and thinking about and praying about.

And no, I'm not done yet.

Sorry, There Is No Way to Prevent Breast Cancer (Yet)

2010-11-03T01:05:00.006-05:00

I've read a lot of great posts about idiotic marketing efforts in the name of "breast cancer awareness."

Which makes me wonder, isn't anyone doing it right? Or is "cause marketing" just doomed from the start if anything less than all the money from something goes to the cause?

Surely big companies could do that--give all the money a product brings in--to a cause if they wanted to. So could smaller companies or individuals for that matter.

I guess I need to do some research to see who, if anyone, is doing this.

I did find out something I didn't know before this month: there is a metastatic breast cancer day in October. It seems to me that people living with metastatic disease would be a great cause to put money toward if I had a product that a lot of people wanted to buy.

To me, that's the place where cancer turns into Cancer. I also need to do some research to see if there's a national group for people with metastatic breast cancer. That would be good to know.

I do know by reading the breast cancer discussion boards that many women whose cancer has progressed really hate "Pink October." And I can see why.

They aren't part of the intended audience, and really, neither am I nor other women who had or have the disease.

At some level, I think the pink deluge is a collective rain dance that helps people think we're doing something to prevent breast cancer--a phrase I heard way too many times this past month.

And I get the distinct feeling that I would ruin the parade if I were to pop up in the middle of the awareness celebration and announce, "Boo, I had breast cancer."

Maybe it's the timing of October and Halloween that makes me make this connection, but I think I could seriously scare people.

Maybe I'll do it next year.

I'll keep you posted.

In the Name of Awareness. . .Show the Real Stuff

2010-10-30T19:33:00.006-05:00

I just saw an ad about making a pledge to prevent breast cancer.

There was a button to click to "make a pledge," then you could choose from pledging to do regular self-exams, getting a mammo after age 40 or type in your own pledge.

I typed: "I pledge to tell as many people as possible that you cannot prevent breast cancer."

I wish their campaign had focused on pictures of women who have had mastectomies and mastectomies with reconstruction and didn't include artfully covering the things they're talking about--breasts!!!

Those critiques aside, here is my PSA to wind up Breast Cancer Awareness month: Women with dense breasts (many women before menopause, because breast tissue and lobes, etc haven't yet turned to fat as happens when we age) are at a greatly increased risk of getting breast cancer.

Get a mammo; ask your doctor if you have dense breasts; and, if so, consider also requesting a breast MRI, which can read dense breast tissue, while mammograms have trouble doing so.

Good Results

2010-10-28T23:57:00.003-05:00

Good news on three things.

First, they found nothing on my ultrasound yesterday, so at this point in time, I can say those bumps are nothing to worry about.

Second, I got to see the lab bills the way the billing office people see them, and they make perfect sense. I asked why we, the patients, didn't get that information in our bills and was told something about some future software change that might make that possible.... Interestingly, but not surprisingly, the person in front of me and behind me in line at the billing office were both clutching batches of the same bills that befuddle me.

Third, I emailed my ps to suggest her billing people send in our out of network exception agreement with my ins company with her bills so she has a better chance at getting paid the in network rather than the out of network rates.

And, a bonus fourth thing. I have an appt with my ps when she's in Chicago in November. Since I haven't been able to find a local ps or surgeon to give me a steroid shot to keep my new belly button from scarring shut, she can do it as well as check out the new fat necrosis and give me her opinion on the mass-y area they found on my other recent sonogram. We can also talk about when/where we can wrap things up, I hope.

So--a pretty good week so far.

Body Art

2010-10-26T23:11:00.005-05:00

I have three little circles of permanent marker on my chest tonight. They look like a figure eight with a little cloud floating above.

My husband drew them around the little hard bumps that I tried to get checked out with an ultrasound a couple weeks ago. My plan for tomorrow's ultrasound is to stand when the tech asks me to lie down and only let the tech use the ultrasound wand on the areas in and near the circles.

I want to avoid a repeat of everyone getting caught up in the bigger lumpiness of the DIEP reconstruction below. I want to know what the new hard and growing bumps higher up on my chest are. They're really too high up, in my opinion, to be fat necrosis from the DIEP, which is their best guess on other lumpiness.

I think the million dollar question is: Can you tell the difference between fat necrosis and tumor on an ultrasound (and an MRI for that matter)? I've researched this to death on the Web and haven't found a definitive answer. My own experience tells me the answer is "not really." And I know you have to stick in a needle and do a biopsy to know for sure what something is.

I'm not ready to do that with these things yet, but I do think it's a good idea to start watching them, and this ultrasound is going on record for doing that.

It's also time to make the ob/gyn appointments for the year that will most likely include the added fun of a breast MRI, uterine biopsy (to check for uterine cancer from the Tamoxifen) and ovarian ultrasound (to check for cysts, etc, again from the Tamoxifen).

I discovered my cancer almost four years ago now. I've also found that cancer is not an experience you use up and chuck in a ditch. Mostly because you're never really done with it. I'd say ever since that November night four years ago, I've been either getting something checked out or wondering if I should.

And, honestly, I think that's pretty normal, especially when you're young, the cancer was later stage and aggressive and you're trying to raise a young child.

Tamoxifen: Three Down, Two to Go

2010-10-22T23:27:00.004-05:00

I've decided I'll count it as three years on Tamoxifen this week. That means only 2 more to go!

Really though, having to take something for so long a time is surreal. Five years is longer than it takes to get a college degree; it's longer than I've held all but one of my jobs; it's only one year less than my son has been alive, and I can't imagine a time without him.

But if it's helping keep cancer from recurring or a new one from popping up, then I guess it's a fair trade. I just wonder what they're going to suggest for me two years from now. I have this bad feeling that they aren't just going to let me go on my way.

My guess is they'll want me to stay on the Tamoxifen longer, or assume I'm postmenopausal and then switch me to an AI for five more years.

Hopefully there will be some more science indicating what is the best way to go by then. I, of course, hope I don't have to have any more treatment, ever. As it stands, I rarely consider that I'm still actually in treatment for bc because I'm taking Tamoxifen. And, luckily, I don't have too many of the very many possible side effects of the drug.

But still, having to take that pill everyday just makes me feel like a very old lady, and I'll be happy to ditch it as soon as possible. Too bad that has to be two more years.

I Have Better Ways to Spend My Time

2010-10-20T00:13:00.003-05:00

Once you get cancer (or I would think any other expensive medical condition), you will never fully understand your medical bills again. I have decided it's best not to insist on this, or you will lose your mind.

Mostly, I try for a general sense of what's owed, if it's correct and if we've paid it off. You'd think it would be a simple matter to follow such a path. But it can be a very winding route when you become a medical "frequent flier" like me.

Currently, I need to go into my hospital and have them explain to me their new system of billing each and every lab service individually--and then not identifying the service on the bill. I must have more than 40 bills for "lab services" for the past couple months. Really, I'm supposed to write that many checks for things I can't verify at all?

I tried stopping by the billing office several months ago, when I was there for one of these many procedures anyway, and it wasn't even clear if they knew who could answer my questions--because why would anyone have questions?

I took a deep breath, left and started making a pile of these bills that float in every few days or so, and now that the pile is falling under its own weight, I guess I have to revisit the billing office. From reading my previous posts, you will know that I know a phone call never takes care of anything.

I should also send my ps's office person an email suggesting they submit the out-of-network exception agreement with her bills, since they are only paying at out-of-network rates when they should be paying per the in-network agreement we got after much, much, much wrangling. I called the ins co (even though I know calls are pointless, unless I'm just looking for a fight), and they said they couldn't find anything documenting the agreement.

So I walked across the room, picked up my copy of the agreement and read it to them. They still acted like it didn't exist instead of saying, "I'm sorry, I must be having trouble locating it in our messed-up computer system."

There's also some weird $85 billing thing that my providers and ins can't agree on for every screening test I have--ultrasound, mammo, MRI, Pet, etc. The ins co says they won't pay it and that I don't have to pay it either. Hmmmm, that amount never just falls off my bill without me going into the billing office and balking about it.

Ahhh, the magical messed-up world of medical bills. . . pisses me off!!!!!

It's October, and I Want More Than Awareness

2010-10-18T00:04:00.004-05:00

Breast cancer is everywhere. Pink October definitely makes it seem that way. So does talking to people.

Just this week, I found out two of my neighbors are bc survivors. When one said, "Then when I had my mastectomy...," like it was something all women must pass through at some point, I thought it was both odd and apt, because I answered with something like: "Yes, when I had my mastectomy...."

I can add these "sisters" to a long list of other women I know or know of who have either died from, are battling with or are living beyond bc.

I think the large numbers of us are what draws attention to bc. Unfortunately, a lot of that is diluted and polluted by rampant and sometimes sketchy "cause marketing."

I would prefer we throw out the phrase "breast cancer awareness" because it means nothing and it does nothing.

In my opinion, there's a hell of a lot more people need to be aware of about breast cancer. But, like with most other big-deal things, you only find out once it becomes your road to walk, and sometimes, not even then without a lot of work.

I would like to see our world work together to wipe out all cancers, as well as diabetes, ms, cystic fibrosis, heart disease, the list goes on...

But, honestly, I will admit to this: the first cure I want to see, and I want to see it yesterday, is the cure for my particular, exact form of bc.

The Hair Post

2010-10-15T01:36:00.002-05:00

I have never written about my hair and cancer, so I'm due this one.

Like most other bc survivors, I got to start over from scratch on my hair. I remember that being not fun, especially when I realized that all-one-length hair doesn't work when you're talking mere inches, or even centimeters.

But I got through all that and pretty much just ignored my hair for the past few years as it grew in. Even though it grew long, longer than when I was diagnosed, I still thought of it as growing in.

But recently I decided I wanted to do something with it--either straighten it to knock out the bonus frizz that regrowth imparted or cut it short so I might be able to wear it down again.

Since another bc blogger wrote that straightening didn't go well for her, and I especially wanted to avoid any chemical feeling/smell/experience, I decided to just go for the cut.

So now it's much shorter, and the most positive thing I've heard about it is: "It's a different look for you."

Yeah.

I'll probably grow it out again. But at least I won't have to wear a hat or wig while doing so this time.

Maybe highlights are what I really need....

Mulling Things Over

2010-10-11T23:40:00.005-05:00

I thought of some questions I should have asked the radiologist who did and who read my ultrasound last week. Of course it's too late to ask him now, but I guess I'll try them with my onc when I see him next.

There are many, many lumps and bumps in new girl after DIEP stage II, not that different from after DIEP stage I. However, all four people who did ultrasounds on me zeroed in on the same lump that looked "more masslike"--than the rest of the stuff they saw I'm guessing.

So what does that mean? Does most of the lumpy stuff look one way, and this other mass look an entirely different way? Or is it that this is just a massy grouping of the lumpy stuff, whereas the rest is kind of spread all out. Or something...

It's at the 11 o'clock position, which is where one of my original cancerous masses was. The radiologist guy asked if my original cancer had a DCIS component, and I said it did have a large bunch of that. One tumor was DCIS--ductal carcinoma in situ, or in place, as in it hadn't broken out and invaded other tissue yet--and also IDC--invasive ductal carcinoma, the type that does get out and cause trouble. The other tumor was just IDC.

My guess then is that this new mass doesn't look invasive, but it might look like another possible DCIS brewing. DCIS is actually considered 0 stage cancer because there is no invasion of other tissues, and some DCIS would never cause trouble. (But I'd say history shows that's not the case with me.) When it's discovered, it's still removed but not treated as harshly as a higher stage cancer.

I think I'll ask my onc what's special or different about this one area and if it might be suspicious for DCIS. I'll also swing by my cancer center for the ultrasound report tomorrow--I'm hoping it provides a lot of information, reflecting all four tests I had.

I have actually never considered that a recurrence could be DCIS and not IDC. I wonder if that's possible, and if so, how often it happens?

A Lotta Testing for Not Much Answer

2010-10-09T01:31:00.004-05:00

I got the rock-star treatment today at my breast screening--people calling people on the phone, four people wanting their own readings with the ultrasound wand (one of them was the radiologist who usually just reads the scans, so it was like Great Oz coming out from behind the curtain), jumping to the front of the line in the cancer center, a mammogram on the spot...

After three hours of this, they think it's probably fat necrosis. And they're referring to a "mass area" I hadn't really gone in for. I'm not sure if anyone really ever saw the four or five small hard areas I was most concerned about.

Everyone quickly gravitated to the area below that's lumpy and bumpy after the second stage of my DIEP, just like it was lumpy and bumpy after the first stage. We went two years after the first stage, trying to decide if the hardness was fat necrosis or tumor. Finally, this summer seemed right for taking all that out and doing a biopsy so we'd know for sure. Turned out it wasn't a tumor or fat necrosis--it was declared an inflammation. New fat was pumped into the area to fill it back up, and now three months later, I'm back in the "what is it?" boat.

The radiologist went with fat necrosis partly based on the MRI before my latest DIEP surgery that suggested the hardness was likely that. But all that's gone, so if it is fat necrosis, it's new since my second stage. I mentioned this, and he said, "You've had a history of fat necrosis, though." True. I've also had a history of breast cancer.

So I take this long day for what it is--a best guess of what a new "mass" might be. But since no one offered a definite answer, I'll wait three months and ask for another ultrasound of the area. If the mass hasn't grown or has shrunk, I'll write it off as something other than cancer; but if it's bigger, I'll probably want a biopsy.

I'm not worried enough to jump to a biopsy right now; but I don't feel I can just ignore it either.

Once again, I'm left feeling it would be really, really nice if someone like a doctor or radiologist would come up with a follow-up plan that takes into account the fact that we didn't just solve this mystery, and I still really do care what the answer is.

Instead, if I don't bring it up again, everyone will consider we're done here.

Thinking of Making a T-Shirt

2010-10-08T00:49:00.003-05:00

I get my ultrasound tomorrow. Even though these bumps are probably nothing, having to wait around to find that out isn't fun.

My onc's nurse called about a week ago to tell me the blood work is all normal and there was no sign of tamoxifen toxicity. I guess that's what he was looking for. Then she was just going to hang up and leave things there.

Wait a minute, so now what? What about the ultrasound to find out what these things are? She said she'd talk to the doc and get back to me.

When she called back, she said if they persist, he'd refer me to a dermatologist for treatment.

That doesn't really reflect an understanding of my one and only concern: Are these things cancer or not?

I wonder, does he have cancer patients who have other first and foremost concerns? Did he really think I was most concerned that the bumps looked ugly?

Frustration!!!!!!!!!!!!!!!!! I'm sure it came through as I told the nurse unless the dr could swear this isn't cancer, I'd be needing an ultrasound.

I don't care what it is, as long as it isn't cancer. Obviously I'm going to have to get that on a t-shirt to wear for appointments.

The Goal: End Breast Cancer in 10 Years

2010-10-01T00:06:00.007-05:00

January 1, 2020, no more breast cancer?

Hell yes, I'm in!

The National Breast Cancer Coalition asks all the right questions and gives all the best answers in this powerpoint announcing they've thrown down the gauntlet.

This was just the thing I needed to see on the eve of breast cancer awareness month. Marketing, pink and awareness aside, I want this thing gone. It sounds like this group shares my feelings on the matter.

Their invoking the space race is something I especially identify with because of our summer's vacation to Fla that included a day at NASA.

We did the extended tour and watched the videos declaring that the race to the moon was on. Then we saw the footage of failure after failure and learned that all the best minds were on this problem and the whole nation was behind it.

Then, the images of sweet success.

And I thought--with enough emotion that I almost picked up the phone to call the President--Why aren't we doing this with cancer? Forget all the health care squabbles and let's go cure this blight on humanity.

Such a shared national goal would have a shot at curing this nation's "downturn."

It's the best idea I've heard at any rate.

Mark it on your calendars--breast cancer is done in 2020!!!!!!!!!!!!!!!!!!!!!!!

Lumps and Bumps

2010-09-28T01:08:00.003-05:00

Not exactly two things we bc survivors like to find on our bodies, especially not on the used-to-be cancer side of the chest.

I've been following a grouping of little hard bumps under my skin for several months, and I think there are more of them and/or they are getting bigger. My husband thinks he might agree with me.

I think they warrant an ultrasound, and the nurses at the Image Reborn retreat agreed with me. However, they said they probably aren't anything serious.

To my surprise, my onc actually took the time to feel them and said, "Yep, that's a change there." He ordered a lot of blood work as a first step--the usual complete panel stuff and some tests to judge inflammation as well.

His opinion is they are milieu caused by wearing clothes--actually clothing that rubs on the skin and irritates it.

Honestly, I almost laughed when he said this. I expected him to come out with a "just kidding" at any moment. I mean, I've been wearing clothes for over four decades and nothing like this has ever happened. I thought he must be making it up.

But I guess not. So that's one possibility. I asked him if it could be anything else, and he said, "Oh yes, it could..." and then started writing down tests on his ordering tablet. When I asked about an ultrasound, he said let's wait to see the results of the blood tests. I didn't ask what else it might be, because I've found he doesn't like to go there, and I'm not sure I want to either.

It's most likely nothing serious. Maybe even something as silly as irritation from clothing. But I still have to check it out.

Take 88 or so on this cancer parade.

I'll keep you posted.

I Agree, Mammograms "Aren't a Magic Bullet"

2010-09-23T00:41:00.004-05:00

Here's another study that says "mammograms aren't a magic bullet" for surviving breast cancer. I know that because my two, 2.5 cm lumps weren't detected on a mammogram at all.

Which isn't odd for someone who was only 37.5 at the time. Many, many, many younger (premenopausal) women have dense breasts--where the ducts and lobes and connective tissue haven't turned to fat, as happens when you age. On a mammogram, you can distinguish between fat and tumor easily; finding cancer in all the other stuff is difficult.

The article says more people are surviving breast cancer primarily because of better treatment, not because of better screening.

So I say what I always say about this: Let's get better screening methods!!!!! Something that works for dense breasts as well as less dense ones; something that insurance will cover for all women; something that doesn't expose women to radiation.... And let's get it out there now!!!

This isn't about keeping screening recommendations status quo; this is about needing something better.

NOW!!!!!!!!!!!!!!!!!!!!!!!!

A Place Like Cheers for Breast Cancer Survivors

2010-09-20T23:47:00.010-05:00

We were nine women who had experienced some of the bad that life can throw--a breast cancer diagnosis, seemingly endless scans, tests and surgeries as well as the eternal fear of recurrence.

But this late summer weekend in the mountains of Utah was about seizing some of the good that also abounds--breathtaking views, scrumptious food, total relaxation and most of all, a chance to commune with women who already know part of your story.

Beautiful, honest, strong, funny women who were busy living life when the brick that is breast cancer sailed through our windows. Some learned the news as they were putting their kids down for a nap, were alone at home or driving down the road. But no matter how the word came, our images of our lives and ourselves was destined to change.

That's why Image Reborn, the name of the group behind these no-cost healing retreats, is fitting.

"Living Beyond Breast Cancer" was engraved on the wine glasses we toasted each other with, and that's what we talked about and celebrated for 2 1/2 days.

Many of us are in the process of rebuilding our bodies after beating the disease--some for more than one time. I'd say we're also working on incorporating the ways our experiences with breast cancer have changed us.

Some farther past treatment said their experiences made them better people--more empathetic, less self-centered and more grateful for the gift of each new day.

Some had dug into advocacy by mentoring newly-diagnosed women and taking leadership roles in research and support groups. Others were eager to find ways they could also help.

But helping others would have to wait, because as our gracious hosts repeatedly told us, "This weekend is about you."

They didn't just say it, they showed it with one fabulous treat after another. An accomplished chef prepared healthy and creative dinners; lunch at a nearby resort restaurant was al fresco with views of the mountains and ski runs; facials, massages and advice from a lymphatic specialist filled an afternoon; and two nurses from the Huntsman Cancer Hospital answered all our bc-related questions.

Side highlights included soaks in a hot tub, walks around the neighborhood and into the mountains and lots of time to share our stories, compare notes and get advice.

Mother Nature even cooperated by sending along a meandering moose and a spectacular night sky show.

We didn't have time for a session on journaling, but the night before we left I started writing this in the beautiful journal we received because writing is what helps me make sense of events in my life.

For example, I heard a lot of us talk about how others were impressed by our strength in dealing with cancer. But we didn't see it that way--after all, we were only doing what we had to do to survive, doing what anyone else would do.

I'm thinking about that now. My surgeries, 14 months of treatment and constant vigilance are requirements for being here for my six-year-old son. And I'll do whatever else I have to do for that reason.

But while I'm not always impressed by my own story or my own strength, I am awed and inspired when I hear other survivor's stories. And I heard enough fabulous accounts this weekend to make me consider that maybe I'm doing a fairly good job myself.

I think it takes others who have been there to help you spell it out--We are SURVIVORS!

Ahhh...A Weekend of Pampering

2010-09-16T00:45:00.004-05:00

There are many benefits to reading around on the blogs--you get informative, relevant, witty and interesting updates on other people's lives. And of course, you can learn a lot that way.

I first read about Image Reborn on another breast cancer survivor's blog. She described a mansion in the mountains where they make you gourmet food, take you out to lunch and give you massages and facials. Best of all, you get to leave your wallet at home because it's all paid for, including the airfare.

How could I say no? How could I not fill out the online form and see what happened? I was hoping to make one of the young survivor weekends, but those were all filled for the year, so my weekend will be with survivors of all ages. I'm sure I'll learn a lot from those ladies, too.

Maybe some of them will even let me write about our experiences on this blog....

Couple Updates

2010-09-09T04:34:00.004-05:00

After my appointment with a local doctor who does breast surgeries, things turned around. She was interested in the DIEP and asked a ton of questions. She offered to follow-up on anything I needed and even offered to do a skin biopsy of the area that wasn't healing, if I and my ps thought that was needed.

Luckily, that area has healed so no biopsy required, but I can most likely use this local surgeon as my "helper doctor" for any other reconstruction stages I need.

I would have scheduled this appointment before my second stage if I hadn't been so busy running around getting cardiac clearance and bloodwork for my surgery. Silly me, I thought a phone call would take care of it.

So that's one downside to not pushing right through to finish reconstruction--the doctors you saw for your cancer treatment might move on or retire and it can be hard to find someone to fill their shoes.

I also spoke with my ps, and she suggests that I get some type of steroid shot to stop/lessen the scarring around my belly button. I'm getting the big old keloid ring around the button again, just like last time. My ps said I am the only one of her patients to get this--and twice!! I actually think it's because I'm allergic to the nylon stitches. Most of the other stitches were much smaller and dissolved easily. The belly button ones were huge and hung around for a long time, though they too eventually dissolved.

So, anyway, I have to find a local doctor to give me this shot, or wait until October when my ps will be back in Chicago and can do it herself. This seems like a job for a ps, so I'll see if my "helper doctor" a couple towns over, who is a ps, is willing to do this. My ps said to give the doctor her cell number and she can help them with getting the right dose and the proper administration of the shot.

My ps also thinks we should wait about six months for the reworked new girl to settle before adding the final touches. She's a perfectionist, and I really do appreciate that. It was the reason I chose her, so I'll listen to her advice and push next steps off for a while.

As for the bruising and hardness on new girl, I think that's just something that can happen when doing DIEP or any kind of reconstruction on radiated skin. It's disappointing, mostly because I didn't come across this possibility in my research, so I'm making a point to mention it now.

But I don't regret having had the radiation. I'm young, my cancer was multifocal and very aggressive--which all means I had to throw everything at this. Like my rad onc said: "If you use radiation now, you have a chance for a cure. If you don't do it now and the cancer comes back, you'll just be using it to keep things under control."

I'm assuming I got the cure. I just wish I had the great skin too.

If They Stopped Freaking Out, They'd See It's Really Pretty Simple

2010-08-25T22:48:00.007-05:00

The letter I wrote to the head of surgery and ps at my local hospital was misdirected until I called asking for a response.

Once the appropriate people read the letter, it was decided that the head of surgery would follow me. From what I can gather, this person is more an administrator than a practicing doctor, but I could be wrong. At any rate, I can contact him anytime by calling the hospital's operator and asking for him to be paged.

Hmmm..... I guess that's something, but it sounds way more complicated than I'd like and sure isn't setting an especially workable precedent for women who come after me.

So I'm working other avenues. I asked my primary doctor to get me an appointment with a breast surgeon to check out the infection on my reconstructed breast. (You have to be referred by a doctor to see a ps or surgeon.)

When I go for that, I'll take in the papers that explain what being a "helper doctor" after DIEP reconstruction means. And I'll make the case for someone to work with women to help them get the reconstruction that's best for them, even and especially if this means the women have to travel for it and they will require local follow-up care.

I think I might even take in the article about the NY law; it couldn't hurt.

The cute thing was the lady at the "action line" said I really expressed myself well in the letter, and I should think about keeping a journal of my experiences.

I might just do that.

New York Passes Key Law

2010-08-21T22:49:00.003-05:00

New York State passed a law making doctors and hospitals tell bc patients about their reconstruction options before patients have a mastectomy: http://www.nytimes.com/2010/08/19/nyregion/19surgery.html

Too often this doesn't happen. My first breast surgeon referred me to the ps after I asked many, many questions about options, results, etc. I doubt I would have had that referral if I hadn't asked so many questions.

I think this law is right on--but the key ? I have is one not answered by the article--do they have to tell patients about all their reconstruction options, or just the ones they offer?

It should be all the options, and after my recent experience of no local ps or surgeon wanting to serve as a follow-up "helper doctor" for my DIEP (which they don't offer locally), I'd also want the law to say they need to provide support for all types of reconstruction, even ones they don't offer.

Seriously, my town offers only two reconstruction choices--implants and pedicled tram. It only takes a little research (once you know to look) to learn that there are many other options that might be better in many cases.

I can't believe mine is the first letter local docs have gotten saying they aren't doing enough to support the full range of reconstruction options for bc patients.

This law tells me that this is indeed a problem everywhere.

Dropping the C-Bomb

2010-08-11T00:12:00.005-05:00

Here's a crazy thing I never thought I'd have to think about: after you've had cancer, how and when do you bring it into a conversation with someone who doesn't know that story? Or do you?

It's been almost 4 years since my cancer parade started, and I'm done with treatment (except tamoxifen) and more than half-way put back together, so there shouldn't be anymore to talk about, right?

Of course you know that answer since I'm still doing this blog.

Having had cancer is a huge thing. I'd rank it up there with college, marriage, new houses and having kids. I talk about all those things with people. So to never talk about bc seems ridiculous--like I'm ashamed of being so unlucky or something.

Naturally, it's not something you'd pop into a conversation. But when I'm having trouble getting me and the house together for summer play dates because I had reconstruction surgery a month or so ago, it seems legit to mention it as my reason for hoping someone else will host.

But then I open my can of cancer into social circles who are really very surprised to hear about it. I've had practice talking to other cancer survivors about cancer--that's what support groups are for, and they are very important. But it's different talking about it to people who haven't walked that walk.

It can make things awkward. It just can. But making a point of never bringing it up, when it is a big deal and will always be at least a deal in my life, actually feels more awkward.

It's just one more of those after-cancer things no one tells you about.

Not Smooth Sailing Yet

2010-07-29T23:55:00.005-05:00

There's a small spot on the top incision of new girl that is infected. I saw my gp about it, and I'm back on the antibiotic I took for two weeks after surgery. Hopefully it will clear up quickly and not cause any further trouble.

It just popped up out of nowhere--kind of like most of my problems after surgery this time. It makes me realize how lucky I was after the first stage of my DIEP. Then I was dealing with big wounds to two areas of my body, and I had no problems at all.

This time, not so much, but still nothing really bad yet. I'm crossing my fingers it stays that way.

My followup dr is two towns away and that is just too impractical. I can't really call in and run over there for an appointment, and I don't want to wait two weeks to get in when I'm dealing with something like a potential blood clot or definite infection.

So of course I'm still pushing the local surgeons and plastic surgeons to work with patients who have to go elsewhere for reconstruction options they don't offer locally. This is huge, in my opinion.

If no is their final answer, it limits the reconstruction choices for women in this town. Either some won't be told about the options beyond the limited ones offered locally, or many won't want to put up with the cost and inconvenience of traveling for treatment--especially when they can't even stay local for the routine followup stuff.

We have a beautiful new breast cancer center, but if women can't get reliable access to all forms of reconstruction, including support for methods that aren't offered locally, it means nothing. In fact, it's misleading.

I'm sure women who haven't had to go down the bc path are reassured by such a grand building; I would be. You'd think, "Oh, they have that covered" if it ever became your problem. In fact, they do advertise comprehensive care--something like "Going the Distance."

They don't mention that the trip doesn't include DIEP or other microvascular flap surgeries for reconstruction. They won't even take you to the airport or call you a cab for that ride.

Yet.

I'll keep you posted.

Indecent Exposure or Just Exposure?

2010-07-26T11:44:00.004-05:00

Here's something I've wondered since getting new girl:

If I were to flash new girl, say at a Mardi Gras parade or on a bet or something, could I be arrested for indecent exposure? She's all belly fat and skin, what's illegal or untoward about that?

It would make for an interesting case in the courts. But as much as I love an interesting situation, I'll wait for someone else to see where it leads.

Maybe I'll write a short story about it, though.

Update on the Girls

2010-07-23T09:41:00.005-05:00

I messed around with the new templates again, and since I don't know how to change things back, I'll go with this look for awhile--until I decide to tinker around again.

A recent comment--thanks for checking in--made me realize I should update on the actual resuls of my surgery. So how did the girls come out?

Like with stage 1, it's hard to say right now. Things look different and possibly better, but I'll have to wait way longer than I'd like to know for sure. Right now there's lots of bruising and hardness, that might or might not go away, just like with stage 1.

I think the belly button won't scar closed this time, which is an improvement. But even that needs to heal before I know for sure.

I know a lot of women give glowing reports of their new girls just days or weeks after surgery. Either they heal way faster than I do, they are much better at seeing the possibility beyond the scarring or they aren't working with radiated skin and trying to match an original to a new girl. Those two things make my reconstruction more difficult and less pretty as I move through the stages.

I know my ps did great work, as good as could be done. I'll just have to wait to know how things turn out. She did tell me I'll probably need two more revision surgeries from here, so one more than I was planning on. But it's not unusual to need four from what I've seen on the bc message boards I follow.

So looks like I'll be "in the reconstruction process" for a while longer. I honestly had no idea this could take so long or be so difficult. But, like most things when you actually have to do them, it does and it is.

I'll keep you posted.

Go Key and Ben!

2010-07-14T20:54:00.005-05:00

I've never felt alone in this breast cancer battle. It seems everywhere I look there are pink ribbon magnets on cars, "Mammograms Save Lives" license plates, t-shirts and of course products galore.

Of all the cancers, I'm sure mine is the most publicly supported. In fact, when I was in Charleston for my reconstruction surgery recently, I met two guys who gave me a business-size card.

My husband and I were in Walgreen's, filling the raft of prescriptions I had after surgery, and I was wearing my statement tee: "Cuck Fancer." I wore it into and out of the hospital because it just felt appropriate.

No doubt that's why they gave me their card, which reads: "keyandbenwalk.com 1300 miles in 50 days to fight breast cancer."

I looked up the site the other day, and sure enough these guys are walking from FL to NY in an attempt to raise $20,000 for breast cancer.

Very cool--we met them on their way though Charleston.

It's Nothing Bad for Once!

2010-07-09T18:26:00.003-05:00

I've had a tightness/pain my my left calf since the second stage of my DIEP last Monday. When I wasn't worried about my arm or my high blood pressure (especially alarming for me because I always have low blood pressure), I would try to think if it felt odd enough to possibily be a blood clot--a risk of long surgeries like the one I had.

I guess I ended up deciding that would be a long shot, since I was wearing the air pressure booties that are supposed to prevent this, and because I was as active as I could possibly be, which is also supposed to prevent blood clots.

But since the tightness/pain hadn't left since and has in fact gotten worse, I decided to call my onc's nurse about it. I decided there's no way I could tell if it was a blood clot or nothing without a professional opinion and test. And since I don't have the time or the money to go to the ER about something like this (which I would have had to do over the weekend), I needed them to get back to me pretty quick.

Two hours later, I still hadn't heard back. So I called again and asked if my onc's nurse was out for the day. She was, but it was on "everyone's list." I told the receptionist my concern again--I had a 7 1/2 hour sugery a week ago and have had a pain in my left calf ever since that seems to be getting worse. I want to know if it's a blood clot or not. Then I asked her to read what was down from the first time I called, because I couldn't believe medical professionals would let that kind of call sit unanswered for hours.

Anyway, I got everyone calling me back quickly and went in for the veinous doppler test, where they do an ultrasound of the veins in your legs to see what's going on.

I do have a blood clot, but it's in a vericose vein, not in a deep vein, so not the scary DVT that can break off and kill you instantly.

So that's obviously good news. The technician said it looks like it's been there awhile, possibly a week from when I first felt the oddness. Basically the treatment is take some pain meds and it will eventually break up. Of course it will hurt until that happens, but it's nothing I can't live with.

I'm actually deliriously happy it isn't DVT, the worse-case scenario. We cancer patients feel really, really lucky when we find out we do have something, but it isn't an especially bad thing.

Like winning the Lotto. Really.

Check IV before and after Surgery

2010-07-07T14:27:00.007-05:00

There's a Catch-22 for women who have had breast cancer that involves taking out some lymph nodes.

Since you've had cancer, you'll now need tons of tests that involve placing an IV, but you'll be limited in the veins they can use because you want to avoid lymphedema (a swelling of the limb where lymph nodes were removed; can be caused by almost anything, but needle pokes are especially high risk.)

Women who have had lymph nodes removed on both sides have it especially hard; I find it difficult enough being able to use just one arm--my non-cancer side right arm.

An incident during my most recent reconstruction surgery reminded me that cancer patients facing this issue need to be hyper-vigilant about protecting themselves.

I've found that you'll probably be in surgery longer than anyone's estimate--for me it was 9 hours DIEP stage 1; 7 1/2 hours DIEP stage 2. Then you will be wanting pain medication and needing antibiotics, etc. for several hours afterward.

In other words, you need an IV ensemble that will hold up to these demands, a placement that will encourage this and nurses who are constantly checking that everything is in good working order.

I suggest that either the patient or someone who will be with the person all the time remember to check these things.

There are several different size IV catheters--the tubes they insert into veins to deliver your medicine during and after surgery. There are sizes that are better and worse for various uses. Ask your doctor, nurse attending you and anaesthesiologist which will best handle the big use you're going to give this piece of equipment.

You don't want it breaking off and misdelivering fluids and medicine into surrounding tissue. It's basically a piece of plastic, and it can malfunction, which can cause other medical problems, raise your anxiety level, slow down your receiving the right medicine, cause nasty swelling in your good arm and otherwise screw the pooch.

I also suggest paying attention to where they insert the proper-size catheter. I was told it's best if this is inserted in your forearm--between wrist and elbow. If the nurse seems to be going for the hand (not as secure a place, I was told), I suggest asking for the person who is a crackerjack at doing this and telling them you want a secure insertion of the right-sized equipment in your forearm. I've found there is always someone who is the most talented, but you have to ask for them.

Finally, ask the nurses who are following you after surgery to check that your IV is functioning properly before they deliver any medications through it. They will be checking a lot of things, so this could fall through the cracks if you don't actively remind everyone to keep an eye on it.

I know that people like me, who have limited options for inserting IVs, can be a challenge. I also know that this isn't a reason for going with less than the optimal option.

My message is this: whatever we have left after bc might be a nuisance to deal with, but that's even more reason to protect the real estate at all costs.

Running for Life

2010-07-05T12:51:00.003-05:00

I was checking out some of Melissa Etheridge's new songs and loving them. Then I remembered she had breast cancer.

I was sure she would have written about it, and this web search turned up the perfect post at http://cancerspot.org/tag/melissa-etheridge/.

I'll have to get busy downloading some of this to my MP3 player. I'm back to walking my 3 mile trek so new tunes are just the ticket.

Found My Marbles

2010-07-03T17:44:00.002-05:00

This morning my mom and I went shopping to Toys R Us for the economy size $1 pack of marbles--for my new belly button.

In what has to qualify as a bizarre yet handy household hint, marbles are useful for keeping the newly moved belly buttons of DIEP patients open. I wasn't privy to this advice during my stage 1 surgery, and my belly button healed practically closed.

My ps said this rarely happens, but of course I'm lucky that way. So in her 7 1/2 hour stage 2 revision surgery (a record for length, according to my ps), she gave me a new, new belly button. The only thing we're doing differently this time is the marble. I soak it in alcohol then insert in button while I sleep. I hope it works!

We also shopped for various restrictive girdles to handle the swelling over the next few months as the button and other areas heal. I settled on a "waist cincher" that basically just deals with the whole midsection up to the new girls. This was the "most comfortable" of the torture devices that I could find locally, so it will have to be good enough.

Tomorrow we'll have to go return all the ones that didn't work and get another one that does, so I can switch them out and wash one everyday. I'm absolutely religious about keeping everything clean so I hopefully won't have to deal with infection.

I'll keep you posted.

2nd Stage Done!

2010-06-30T20:46:00.002-05:00

I'm sitting here on pain pills with my second stage DIEP finally done! I'm very happy to have the operation over; now I'm anxious to get on with the healing so I can push ahead and get the final touches on these two new girls. I see my ps one last time tomorrow am and then head off to fly home. I can't wait to see my little guy and get home to my own house!!!!!

More details later.

More Calls and Laundry

2010-06-24T11:12:00.003-05:00

My onc stepped up and said he'd be willing to take out drains after my DIEP stage 2. And if I need anything further than that, he could send me to the health care center's wound clinic.

So that's a good backup plan if I can't get to my ps two towns over. So one more thing settled.

Now I'm calling my insurance co to have them fax me letters documenting approval of my ps for in-network benefits and for what all they're covering for my surgery. They're supposed to mail these things, but I rarely actually get them. I want to make sure everything's in order (as far as I can understand, anyway) before we get on the plane.

I'm also finally finding time to clean the house like mad and do laundry so we can all pack, which is one of the next things on the agenda.

Keeping busy is at least helping me not to think about the surgery. I've never had a one thing I hate worst in the world before bc. Now it is surgery, without a doubt.

I'll keep you posted.

Can I Get a Little Help Here? Guess Not

2010-06-22T11:43:00.003-05:00

I need to be cleaning my house like crazy, packing and making reservations for hotels, etc. in preparation for the second stage of my DIEP reconstruction in S.C.

It's less than a week away.

Instead, I've been on the phone for the past three days, trying to find a local "helper doctor" who will follow me after I've gotten cleared to return home from the surgery. My ps will see me in her office, check to be sure things are ok, maybe remove a drain, give me instructions, etc. and then I'll board a plane and come home.

Where I will need a dr. to check on my healing periodically and possibly remove a drain, if any are left.

When I had stage I two years ago, my breast surgeon served as my local helper doctor. He was also the one who wrote the letter helping me get in-network approval for this procedure that isn't offered locally.

In addition to being a great helper doctor, he was interested in the procedure because they had done it at the place he worked before here. He was enthusiastic about seeing me and following my progress, and I think this helped me to have a good recovery.

But that great guy is now retired, and for some reason, my local health care center can't seem to come up with a Plan B for me. In fact, all the surgeons and plastic surgeons associated with our brand new breast center have said they won't serve as my helper doctor.

This from the place that has received hundreds of thousands of dollars for my surgeries, chemos, scans, checks, etc. over the past four years.

No one there is willing to be a helper doctor. I think that says it all.

I called the other health care outfit in town, and a surgeon there actually got on the phone to yell at me, saying I should just have the tram procedure they offer here. (Ironically, this was the same surgeon who used my belly as a table for paperwork when I saw him for my mastectomy consult.)

So I called one town over to a surgeon who had been recommended. He also prefers not to do it.

So I called two towns over and a ps there, who assists on DIEPs and who I considered for the DIEP initially, will be my helper doctor. The reason I opted not to have the DIEP done by this team is they only do about 20 a year, and they didn't have any pictures of DIEP patients in their view book, though they had many photos of implants and trams. Most importantly, they weren't planning to do a stacked DIEP, which is the best chance I had for a match in size. Their plan was a DIEP plus an implant on top, which was not my plan.

As I suggest in another post, you really want to go with a doctor who does 100 DIEPs a year, so I did that. But using this other ps as my helper doctor is about the best team I can imagine.

Of course finding someone who cares locally would have been best, because now I need to drive about 250 miles round trip each visit for followup care. Not the best thing for someone who may still be dealing with pain meds and who has a young child to plan around.

But I'll take this hard-won Plan B. And I will let my local healthcare center know they really dropped the ball and that's not good enough.

Having a beautiful building means nothing if women can't get the care they need!

I would say this especially applies if someone is forced to go elsewhere to get a procedure because they don't offer it locally. The least the local facility/drs can do is care enough to do any routine followup. I mean, what if I got in a car accident while vacationing in California, would no one local follow up on me once I came home with my healing wounds?

Back at It

2010-06-17T09:45:00.004-05:00

The lab tests, etc. found their way to my ps thanks to a call and some firmness on my part. I've found if you repeat what you want enough times, no matter what they say on the other end of the phone, people finally start listening to you, and you even get it your way some of the time.

I didn't have to go in to fill out forms--yay, because I actually had other things I needed to do instead.

Like laundry.

We're back from vacay, and it was fabulous. My little guy loved every part of it. He loved finding all the critters on the beach, seeing the big animals up-close at Naples Zoo (a fabulous place), really tried to learn about the rockets at NASA and then Disney--he's now a convert and a walking billboard for their fabulousness.

Dad and I enjoyed it all, too. I'm realizing tiny sir is at the perfect age for these vacations, and we shouldn't miss a chance to build some memories that he'll hopefully remember for a long time.

Today I'm trying to track down a local helper doctor, who I will see after getting back from my procedures in S.C. That person will check to make sure the healing is going okay, and his/her nurse will remove my drains.

I really wish my original breast surgeon, who served as my helper dr for stage 1 hadn't retired. He was fantastic, and actually interested in this procedure they don't offer locally. But, things change, so I'm trying to hunt down an adequate replacement.

I'm also trying to work out some possible snags with the precertification/ins company stuff, but I won't go into detail. Really, I do spare you some of this so it doesn't sound like it's a constant drag in my life, though it pretty much is.

Back to laundry, etc.

I'll keep you posted.

Guess This Makes Me Bridezilla

2010-06-14T20:54:00.004-05:00

Today I was supposed to call the department at the hospital that draws your blood and does the urine tests and ask them again to fax the results to my plastic surgeon so I can be cleared to have surgery in a couple weeks.

Instructions to fax results to the ps were on her orders for the tests. I also pointed this information out and asked that they indeed be faxed asap. "If that's what it says on the orders, that's what we always do."

Right.

My ps's office person tried calling to get them when they didn't show up, and she was told I had to come in to the hospital where I had the tests done and fill out a release so they could fax the results to my ps.

Crazy, right? She was the ordering doctor!!! Don't the results always go to the ordering doctor and then that person calls the patient with the results? Why does the patient have to come in and fill out a form to give permission?

Unless I'm missing something, I thought I gave permission to give the results to the doctor who ordered the test when I walked the orders in and sat there letting them have a jab at me.

I've said this many times before, but I'm thinking it again. It sucks to live in a smallish town when you need biggish medical attention. It's like planning a long-distance wedding, where your local medical outlet is a spurned mother-in-law who won't understand why the local offerings aren't good enough for you.

So she makes things hard when they don't need to be.

I will make a call about this tomorrow (I said that today and then forgot, because I was busy living my life), and I predict once I figure out who I even need to speak with, I will be transferred to medical records and told to come in to some remote part of the hospital and fill out forms.

Like this is some complicated thing that's never happened before instead of what it is, someone needing a couple tests for a procedure that a doctor elsewhere will perform because they don't offer it locally.

My question is where would these results be sent if I didn't intervene--to me? nowhere? I'm sure they will charge my insurance for them. I'd think actually getting them to the ordering doctor should be included in that charge.

If I got paid for the time I spent straightening simple things out related to bc and beyond, I might actually have some money, or at least some time.

Round Two

2010-05-26T23:43:00.003-05:00

When it comes to reconstruction, I guess I'm just a two-year wonder.

I started the process about two years after my diagnosis. Now I'll be doing stage 2 almost exactly 2 years later. At this rate, my boobs will look perfect in time for the nursing home.

The PET that I finally had showed what could be nothing or could be something. The hard area of my reconstructed breast that I've been waiting to soften lit up on the exam. There's a bruise there and the skin around it is looking odder over time, in my opinion. However, this is my original breast skin that's been radiated, and there's no book on how that will react to a DIEP. So this could be weird or it could be totally normal for me. It's also the precise area where I had my cancer the first time, and also near the area where my ps hooked up the DIEP flap vessels to the vessels in my chest. So again, maybe weird, maybe not.

The only way to know is to biopsy the area and take a look. (First though, everyone wants to see the results of a breast MRI that I had today. What a horrible test that is to endure!!!!!)

So we'll do that, and also do stage 2 of my reconstruction at the same time. Turns out I do have to travel to South Carolina for this. I had hoped I wouldn't, but my insurance company wouldn't approve my doctor's preferred facility closer to my home, so S.C. it is, because the hospital she prefers to use there is in network.

I'm assuming the biopsy will show just scar tissue or fat necrosis, and then my ps can move on to the more routine parts of the procedure--lift the good girl, revise donor site and belly button and clean up fat necrosis/inject fat into new girl.

I'm told there will be drains and I'll get to wear Spanx for a few months. Oh goody, just in time for the hottest months of the year!

The short timeframe before surgery puts me at the same place I was when I did this the first time two years ago--running around like crazy scheduling and showing up for preop appointments and requesting scans and reports to get to my ps.

Then I have to arrange travel, a place to stay, someone to watch the kid while I'm gone and some type of child care when I get back and might want a second to recover.

Yeah, that all sucked last time too.

I guess the good news is I've earned the money to pay for this little adventure by working overtime in a temp job the last several weeks. I was thinking of taking a little trip with the funds, but this wasn't what I had in mind. Ahhhh cancer and cancer etc.

I Am Dense--Are You?

2010-05-22T17:40:00.002-05:00

I found out about this group focusing on dense breast tissue from joinourloop.com. It sounds like CT has it figured out, with laws requiring doctors to inform you about your breast density and to cover the additional sonogram if you do have dense breasts.

I don't know what my state does about this, but I know what I'm doing. Because a mammogram missed my two very large, easily felt tumors, I insist on a yearly MRI after my yearly mammogram.

It's good to see this issue getting some attention, and kudos to those behind the laws in CT!

If Only It Were So Simple

2010-04-29T21:42:00.002-05:00

I was waiting for this article about the KFC Buckets for the Cure Campaign. Let me just say that there are many, many, many reasons to eat healthy and maintain an appropriate body weight. Then let me stress that doing so is no guarantee you will not get breast cancer. Trust me, I know.

Read my breast cancer story and leave a comment--it's worth $1 toward the cure!

Relay for Life

2010-04-24T22:58:00.004-05:00

Last night I went to my first Relay for Life event. It's where a lot of people form teams and stay up all night walking laps around a track to honor cancer victims and survivors. Another goal is to raise money for cancer research.

Our big local college invited my Young Survival Coalition group to a survivor's dinner catered by some yummy local restaurants and then asked us to walk the first lap.

Having all these college kids--hundreds of them, and I didn't know a one--smiling and cheering for you was both embarrassing and very touching.

Last year this college group raised $155,000 for cancer research. I was very impressed at the turnout and the effort. Plus the dinner was good, I got a free t-shirt and I bought another statement t--Cuck Fancer!

Go college kids against cancer. You rock!

A Key Phrase

2010-04-22T23:49:00.004-05:00

Since I was successful in getting an out of network exception for my plastic surgeon to do the next stages of my DIEP surgery, I wanted to share some of the language the insurance company used in approving this request.

Maybe it will help someone else who is trying to do this.

They wrote: "We will allow (in-network) benefits because there is a network deficiency for surgical providers who perform the reconstructive procedure you require."

I think that "network deficiency" phrase is probably key to getting an out of network exception for the DIEP. Getting one of these is key for two reasons: the work will be covered at in-network rates and go toward those deductibles instead of triggering separate out of network deductibles, and you won't have to pay any costs over the "reasonable and customary" charges determined by your insurance.

You will have to find a plastic surgeon who will work with you on this because they must agree not to "balance bill" you for the amount over reasonable and customary. And they have to submit documentation and some good reasons why this is needed in order for you to prevail.

You also need to write a letter, and you need to get a referring physician (such as your breast surgeon or a local plastic surgeon who doesn't do DIEP) to write a letter in support as well.

So it's a little bit of work, but entirely worth it if it means you can go to a plastic surgeon who really specializes in DIEPs and does at least a hundred of them a year. When you're talking surgery for breast cancer--both the initial lumpectomy or mastectomy and reconstruction--you want to go with someone who has the numbers. Lots and lots of surgeries under his/her belt.

It makes all the difference in the world in terms of what's possible and your recovery.

When? NOW!

2010-04-18T15:14:00.005-05:00

Thank you to everyone who's posted to the story about my breast cancer. Every comment is worth $1 for the cure. The best part is that it doesn't come out of our bank accounts! Give generously when someone else is paying, I always say.

Thanks also to bloggers like This Eclectic Life for such good posts on the topic and for driving more folks to visit and post.

I was walking my shopping cart back to the cart stable at Walmart the other night, and I was thinking about what a waste diseases like cancer and diabetes are. No one should have to even think about them, much less have to live with them. NOW is the time we need a cure.

NOW, NOW, NOW, NOW, NOW!!!!!!!

Peer to Peer Results

2010-04-15T12:02:00.003-05:00

The result of the peer to peer review is that I can get an out-of-network exception to see my plastic surgeon for the next stage of my DIEP, but I can't get one for the surgery center she prefers to use in the town where I prefer to have the surgery.

She does have privileges at another hospital in this preferred town that is in network, so that's an option, or I can travel back to Charleston, SC, and she can do the work in the hospital she prefers to use there. I did that for my first stage, because she wasn't up and running yet in this other town that's much closer to home for me.

The thing I need to resolve is my plastic surgeon's office person said she thinks I'd be "more comfortable" going to SC for the surgery. Now there's a loaded statement. What does it mean?

Does she mean she thinks I'm a snob and the second-choice hospital in the town close to me isn't all ritzy-ritz, or does she mean my results and health would fare better if I flew to the other town?

The answer kinda matters from where I stand. If everything were equal, I can't imagine suggesting that someone spend oogobs of money flying and staying somewhere else for surgery. That just doesn't make it on my financial and practical scale, not to mention my pain-in-the-tail scale.

I can meet with the ps in late May to go over what she can do about beautifying my girls. I'll have to ask her about this then, because ultimately her answers are the ones I care about.

At any rate, I have my first new appointment for stage 2 finally--only five months after I first tried setting one up.

I'll keep you posted.

Sharing My Story--Let's Raise Some $$

2010-04-12T12:32:00.004-05:00

I'm trying something new and sharing my breast cancer story to raise money to find a cure. I've never told the story of how I found my cancer on this site, so I appreciated the chance to do that.

Please click over here, and if you leave a comment after my story, BlogHer will donate $1 to help find a cure. KFC is also partnering with Komen and offering Buckets for the Cure. Like I say in my post, we need this cure NOW! Please share the post if you can. Thanks!

Running Music

2010-04-10T03:53:00.003-05:00

I was searching the web for some good running music and came across the Podrunner site. A lot of people out there seem to love it.

I'll give this week's mix a try tomorrow and let you know what I think. Right now I think it would be a good thing if my race were a lot farther off....

A Start on Breast Cancer Awareness

2010-04-07T13:36:00.008-05:00

I've been thinking about "breast cancer awareness." Many, many (marketing) efforts are aimed at this result. But what does it mean?

What should it mean? What would I have liked it to mean back when I heard the words: "You have breast cancer." Are there things it would have been nice to be aware of?

You bet! Let's see if I can do a decent job of listing a few things. Please help me out and add anything I've forgotten in the comments--thanks!

1. If you feel anything out of the ordinary with your breasts, bring it to your doctor's attention immediately. They should not brush you off or dismiss your concerns. They should order tests and maybe even a biopsy, which is the only way to know for sure what you're dealing with.

2. If things do progress to the biopsy stage, think about how you would like your doctor to let you know the results. My doctor's nurse practitioner called on a Friday and told me when I was putting my two-year-old down for a nap. She couldn't answer any of my questions, and I had to wait until Monday to get moving on appts. with oncologists, etc. Needless to say, it was a freakishly stressful weekend made worse by me desperately searching the Web for information. For me, it would have worked better if I had requested that my doctor (ob-gyn) herself tell me the results of the biopsy during an appointment in her office so I could bring my husband. Remember that 80% of all breast concerns are benign, but giving some direction on how you'd like to receive your information can help you take charge of your care from the start, if needed.

3. If you do get the bad news and just can't believe it, it's okay to send the biopsy sample out for a second opinion. Find out which hospitals and clinics in your area are National Cancer Institute (NCI) recognized for breast cancer. They're good places to get a second opinion on your pathology and to make second opinion appointments with oncologists and radiation oncologists, if needed. Even if you've never done a second opinion before, now is the time. It will help you understand your diagnosis and get a better handle on the treatment that is right for you. Check with your insurance company (find your company's HR or benefits person to help if needed) to see what they cover on second opinions. I've found that you can consult with as many doctors as you need once you find out you have cancer. And it really should be like that. But of course, you'll want to see what's covered in your case.

4. Act however you feel you need to. No one should tell you how you should react to this, or really any other news. I remember an article in Parade magazine that advised taking the day off work after you've received such news. That makes sense. Get someone else to stay with you, if it would help. I called my husband at work and told him the news; then I told him he should just stay at work for the rest of the day. I should have told him I needed him at home, and to see if it would work out.

5. If it is cancer, get ready for a slew of appointments. The first will be with a breast surgeon. They are considered the lead doctors in a bc diagnosis, even though you'll likely also meet with other specialists such as oncologists and radiologists. Find out who is the most experienced breast surgeon at your hospital. Who does the most mastectomies and the most lumpectomies? Is there someone dedicated to just these types of surgeries? Find out if there is a nurse in charge of organizing things for newly-diagnosed breast cancer patients and ask these questions. If possible, see if you can attend a breast cancer or women's cancer support group at the place where you're thinking about having your operation, and ask who is the best breast surgeon--generally, these ladies will tell it to you straight. If your facility has a social worker for cancer patients, see if this person can help with these questions, and if they can put you in touch with some women who are in a similar situation as you but farther along the path, then ask them who are the best doctors and why. Make appointments with as many surgeons as you want and see who you feel the most comfortable with (after checking if your insurance will allow this). I was assigned to a breast surgeon because he was the first available to take my case. In our first meeting, he laid out a plan that he later contradicted. This made me nervous, so I squeezed in an appointment with another surgeon. He walked in, told me my story and explained what course of action he would take and why. I simply had to have him operate on me. He was booked, because he was the doctor who did the most breast surgeries. But because I was insistent that he was the right one for me, his nurse pulled some strings to work me in. I'm forever grateful for this. So if you don't feel exactly right about something, make another appointment to get all your questions answered or to check out another doctor.

6. If your breast surgeon doesn't offer, ask her/him for a referral to a plastic surgeon before you decide what type of surgery you will have. Once you've found the right breast surgeon for you, ask if they work with a particular plastic surgeon, and if the two can consult to give you the best outcome. My plastic surgeon designed the incision that would put me in the best shape for reconstruction. My mastectomy scar also looked about as good as it could have during the one and a half years I waited before starting reconstruction. (My oncs and radiologists actually commented on how nice the scar looked, :-#)

7. Realize that plastic surgeons might not tell you about all your options for reconstruction. Sometimes they highlight only those procedures they can do or prefer to do. Ask what are all the types of reconstruction that are available to you--both with them and beyond them. Stress that you are looking for the right method for your particular case. Ask what they recommend and why; why would they not recommend the other options.

8. Ask the plastic surgeon to also help you consider if immediate or delayed reconstruction is right for you. Again, stress that you want this decision based on what's right for your particular case, not what a plastic surgeon can or prefers to do. Not all facilities can do all types of immediate reconstructions. Mine couldn't do an immediate or a delayed DIEP, but at the time I needed a mastectomy, I didn't have enough fat for a DIEP and it was obvious I'd probably need radiation. So having a skin-sparing mastectomy and delaying reconstruction with the eventual goal of getting a stacked DIEP somewhere else was my decision. However, if my body could have produced a DIEP and if there was a pretty good chance I wouldn't have needed radiation, it would have been a good idea to look around and find a place that could do both the mastectomy and an immediate DIEP reconstruction. Aesthetic results are generally best if it's all done at one time, and scarring can be minimized. There are even places now that can do immediate nipple-sparing DIEP reconstructions. A few years ago, no one was doing the nipple sparing option.

9. Do your research. Ask the ladies at local breast cancer support groups for advice. They should be especially familiar with the choices in your area. If your doctors don't do the procedures you want, ask for referrals to ones who do. Check in with online communities such as breastcancer.org. Their discussion boards are very helpful, and the ladies will answer any questions you have.

10. Take someone you trust with you to appointments. There will be a lot of information, and you will want someone else to help you remember it all and make sense of it. It also helps to get someone else's opinion about a medical provider--especially if it's someone who knows you well and who truly cares about your welfare. If you have young children and don't have anyone to watch them for all the appointments, see if you have a crisis nursery in your community. They are often happy to work with families going through tough times like this. Once you establish a relationship with them, they can support you throughout your treatment.

11. This will be hard, and no one should have to spend a minute on it. But you can do it. Take all those talents you so generously give your employers and friends and family and dedicate them to getting the best possible care you can find.

Pushing Off PET/CT

2010-04-05T16:20:00.003-05:00

The doctor's office rescheduled my PET/CT for tomorrow morning, and I just called and pushed it back to the beginning of May.

I'm driving for my son's field trip tomorrow. They say not to be around children after you do a PET/CT because of the radioactivity that's left in your body from the test.

I'm not sure how much radioactivity remains, and I'm hoping it's not that much, but I'm sure it's safest not to be around a lot of kids right after finishing the test.

I decided to wait until after May 1 for the test, because that will be after I run my 5K. You have to refrain from exercising for 24 hours before the test. I'd prefer not to have to do that before the race.

I'll keep you posted.

Some Good Research News

2010-04-04T02:11:00.003-05:00

There's new research that says getting pregnant after having breast cancer doesn't negatively affect survival.

That's very good news for the large number of young women who get breast cancer and have to deal with what that means for fertility and family.

I'm not sure the news pertains to me anymore, since I'm still in chemo-induced menopause. That might change after I get off Tamoxifen in two and a half more years, or it might not.

I'll be 43 when I finish Tamoxifen. My child will be 8.

Definitely not how I would have "planned" my family. But if I were to get pregnant sometime after finishing Tamoxifen, it wouldn't be something to fear because of the cancer in my past.

That's actually a huge relief.

Updates

2010-03-30T23:52:00.007-05:00

One month to race day, and I can run 3 miles straight. My goal now is to do it so the medics don't feel they need to follow me the whole way.

After many hours of research, I put together a two-coast, one-week vacay to FLA for a really good price. Of course we'll still have to add in the Disney--just one day though. (Thanks for the hotel suggestion by the way.)

When I brought up HI, my husband pointed out that we haven't taken any family vacations since I got cancer either. He's right, we should start there, especially since the family's last vacation was really for my reconstruction, and we spent a very, very long 9 days apart.

Next year, though. Next year for sure.

Interesting Research Study

2010-03-29T00:27:00.004-05:00

I didn't participate in a research study for my breast cancer treatment because at the time there wasn't a real meaningful one for my type of cancer. And since I'm young and the cancer was aggressive, everyone was in agreement that I should just stick to the big gun chemos and a dose dense regimen.

But I have taken part in a couple research studies since finishing treatment. One was through Northwestern University about fertility issues and bc, and one was about relationships being affected by cancer.

I'm also going to participate in the following research study announced by the North Central Cancer Treatment Group. I'm very, very interested in the topics they'll cover. Maybe you'll decide it sounds right for you too:

Cancer Survivors Needed: The Cancer Centers at Stanford University and the University of Hawaii are asking cancer survivors to participate in an online study. If you have been diagnosed with cancer in the past 5 years and have completed treatment, you are invited to take part in a free online workshop.

The online workshop is designed to help make life after cancer less stressful and more rewarding. Learn techniques to manage fatigue, difficult emotions, and after effects of cancer treatment. Connect with other cancer survivors to share your experiences. Qualified participants will be randomly assigned to either participate in the workshop immediately or to a control group who will receive the workshop in 6 months.

This six-week program is done entirely on the Internet. You choose the days and times that are most convenient for you. All that is asked is that you spend a total of 2-3 hours per week logging into the site. You don't have to be a computer whiz to join; all levels of computer expertise are welcome.

You will need access to the Internet and an active email account to join. Pre-registration is required and enrollment is limited. To register, visit us at http://hawaiisurvivors.stanford.edu. Enrollment is open to anyone living in the United States and American Pacific Islands.

If you have questions, please email thriving@crch.hawaii.edu

Please feel free to pass this information on to anyone you think may be interested.

Trading in HI for FLA

2010-03-27T18:50:00.003-05:00

Oh yeah, the roof. When I told my husband about wanting to trek away to warm climates, he reminded me we need to put a new roof on our home this spring. As in, tear off all the other layers of shingles and put down a new roof. So it will be expensive.

That means Hawaii is out this year; though thanks for the encouragement and good words and photos about it. It's definitely still on the list for the future.

Right now I'm trying to put together a reasonably-priced vacay to Fla--both east and west coasts--a little calm beaches, a little Disney. We'll take our son because his current dream is to play with his Playmobil pirate ship and pirate guys on a beach. I think we can grant that one.

I've just started looking into how much Disney costs. It looks like a huge money pit, so I'm not mentioning that possibility to him yet.

Has anyone else noticed how time consuming it is to come up with a vacation that includes everything you'd like to do and that doesn't break the bank?

I've spent hours on the Internet for this. It's that old tradeoff--now we can all be our own travel agents, but that doesn't mean we're all good at it.

I'll keep you posted.

We Do the Best We Can

2010-03-24T21:26:00.004-05:00

I called my onc's office again today about getting the correct scan, and again, I've not heard back. So why don't I get a new onc?

I'd love to find one that works better for me, but like many things, it's not as easy as it seems.

There are really only a handful of oncs in this town. I've been to all the ones at my cancer center and chose the one I have because there were specific reasons the others weren't right for me.

It's not just this town, though. I went to a well-respected place a couple towns over, and they weren't treating new patients at the time, so I couldn't have gone there if I wanted to. I didn't particularly want to go there, though.

I even had an appt with an onc at an NCI-designated cancer center. I don't think I'd want to switch to that person either.

There was an onc at another NCI-designated center who I think I'd like to see again and find out more about, but that person is a couple towns away and a 2-hour drive. Definitely more hassle than I'd like with a young child to care for. Just thinking about having to get all my files and scans and test results over to a new dr is a tiring experience. (Last time it took many, many phone calls, filling out of paper work, running around the hospital, and finally picking everything up, putting it in a big box and mailing it myself.)

So I'm not rushing out to switch, because things might not be better. In fact, they could be worse. I'm actually not surprised that it would be hard to find that just-right-for-me onc. It's an important relationship, one where finding the right fit is key. But finding that is never easy, whether you're talking oncs or hair dressers or baby sitters, etc. I've never found my perfect ones of those, either.

It's just more annoying when it's an onc you need.

No Scan for Now

2010-03-22T22:44:00.003-05:00

I struck out on my first question about my PET scan scheduled for this a.m. It was only to be a PET scan, not a PET scan with a CT scan with contrast. So I said I would need to reschedule and put in a call to my onc. I still haven't heard back from his nurse, so I guess I'll have to follow up in the next couple days.

PET, CT and Contrast, Please

2010-03-21T20:15:00.004-05:00

Remember how I complained about the impossibility of getting a doctor to schedule a scan to check out my chest and back pain symptoms?

Well, there's a PET/CT scheduled for tomorrow, very-early a.m. I kept missing the scan scheduling people's call and being too busy to return it. When I finally did get in touch with them, they seemed annoyed that it took me so long, and said they were told to get this scheduled "as soon as possible."

So now it's a priority, and I'm holding things up.

I actually forgot to ask some important questions when we scheduled the scan, and I wasn't able to call and ask them, so it looks like I'll have to show up for the scan at 7 tomorrow and ask them then. Depending on the answers, I'll either have the scan or need to reschedule.

Here are the things I'm asking:

1. What exact kind of scan did my onc order--is it a combination PET and CT with contrast? All three of these elements give the best results, which is what I'm after. I don't want to go through all the radiation exposure and time this test will take (up to 3 hours) and not get it all done.

2. How much of my body are they scanning? I want whole body, from the top of my head to my toes. I recall my last PET was neck down, and I'm not sure if it went below the knees--I've read they usually don't. I've also read too many posts from women on breastcancer.org about scans discovering tumors above the neck and below the knees to not include it all in this go-round. I've also read that mets to the brain are a more common occurrence for her2+ folks like me, so I say let's take a peek in there too while we have the machine warmed up.

3. Which dr ended up ordering the scan? I'm guessing it's my onc, but best to know that now as well as what codes they're using. (174.9 is bc-related, if I recall correctly). My insurance doesn't require preapproval, but if the dr doesn't code things "right," I'll have a fight on my hands. This is a $7,000 test, so I'd prefer to avoid that. I also want as much info as possible in case it can't be avoided.

4. How do I feel? PET scans light up to show cancer; they also light up to show infection or inflammation. The only way to know for sure which you've got is via biopsy. I don't want to stick a needle in anything I don't have to, especially since we'd be talking major organs and bone. So if I feel anything less than 100% healthy, it's best to push back the scan.

I think that's it. I have a feeling I'll have to end up fine-tuning things with my onc before this is a go, but I guess it's good that it's at least on the books.

I'll keep you posted.

Vote for Crisis Nursery!

2010-03-19T22:00:00.003-05:00

If you have a minute, please click through on this link and vote for Crisis Nursery to get an office makeover. It seems they have a space crunch. They are the group that helped us so much during my cancer treatment and reconstruction, etc.

I think just having a place like this in the community is a fantastic thing. The service they perform is very necessary, and even if you think you'll never need to show up at their doors, you could still find yourself there one day. And they will help.

All the Luck You Need

2010-03-17T21:49:00.004-05:00

Happy St. Patrick's Day! I'm some quarters Irish, so today I'm wearing the green and counting my blessings, Irish or otherwise.

First, of course, is my family--the one I was born into and the one I've created through marriage. Both are top o' the morning, if I do say so myself.

Then there are friends. Beautiful, talented people who care what's going on with me, even though I'm not very good at mailing cards on time or keeping in touch properly. I'm blessed they are patient, have a sense of humor and stick around.

And work--I'm unemployed now, but I've gotten to write for good pay for good companies. And though it sometimes doesn't feel like it, I know I'll get another chance, when the time is right.

As for health, I'm lucky there too, except for that brief bit with cancer. But even there I've been lucky. Nothing even close to the worst has happened. We haven't been bankrupt by treatment; I've suffered no loss of mobility or function; I'm on the road to reconstruction; and I'm healthy as a horse and even planning to run a race.

So today, these Irish eyes are smiling. May the road rise up to meet you, too.