Thinking about "Late Recurrence"

Have you wondered what "status" I am. What women are who have finished treatment for breast cancer? Well, until a scan or test shows otherwise, I am considered NED (no evidence of disease).

I am not cured, none of us in my position can say that. Some of us, maybe me, will be lucky and will live a long life, never seeing the disease come back. Others of us will have local recurrences, which means the cancer will come back in the same breast or breast remains only. Still others will experience a spread of the disease to distant organs, including bones, putting us at stage IV, which will eventually kill us.

So much about breast cancer, and all cancers, depends on the specific characteristics of your tumor. One of my characteristics, being ER+, carries an insidious risk--a risk for late recurrence. This means people can be NED for years and then have the disease recur. No rhyme or reason at all, to the disbelief of all.

This hasn't happened to me. I'm seven years out from diagnosis. It has happened to others who are seven or eight or 15 or 20 years out.

Cancer is never "over." You are never "done" with this particular illness. That's a good awareness message.

So is

Cure NOW! 

You Wouldn't Think This Would Be So Hard

This recommendation on tamoxifen followup from the ob/gyn council confuses me. Basically it says to watch postmenopausal women on the drug carefully but to ignore premenopausal women who also take it.

Premenopausal women don't have problems with it, they say. Or they might say that endometrial overgrowth is expected and not to worry about it. Honestly, I'm not sure.

But either one of those readings doesn't bring me any comfort. I'm a premenopausal woman who had ovarian cysts--simple and complex--and an extremely thickened endometrium throughout my four years on tamoxifen.

Now, almost two years past stopping the drug a year early because of these problems, I still have them.

What does it mean? There is little to no information to help me understand this, it seems.

After burning through ob/gyns whose answer is to take hormones to regulate the cycle, I'm finally self-referring myself to my town's only gynecological oncologist to see if that doctor can shed any more light on what might be going on and what is the best course of action.

Taking hormones when my breast cancer responds to hormones is not the answer for me.

So we need another course of action, because all the research I can find says it's not a good thing to walk around with a constantly-building-up endometrium. If that doesn't indicate cancer today, it's at least a breeding ground for cancer to grow. Not to mention it has to be a sign of whacked-out hormones that I assume have to be affecting me on a daily basis in terms of mood and general functioning ability. And the fact that any period I ever do end up having is a tsunami that makes me immediately anemic.

This isn't a good way to live my life. So here you go, ob/gyns, this can happen in premenopausal women who take tamoxifen. I honestly cannot believe it is such a rare thing. But I guess if no one is watching us closely, we'll never know that. It will continue to be chalked up as "being near menopause" (all my bloodwork says I'm nowhere near that) or "a lingering effect of chemo," etc.

I'm looking for something better than that and a way to really deal with this.  

An Easy One

Have you noticed all the articles debating if you should take social security at 62 or wait until your "full retirement age?"

There are a lot of them. And the most interesting reading always comes from the reader comments that follow the article.

Folks are outspoken about taking the money the moment they can, before they die early or it all disappears because of government mismanagement.

Other folks are equally outspoken about waiting and getting an 8 percent return on their investment for each year of doing so.

Then there are those who trot out mathematical equations and probability tables to show that people might have to live to 80 to break even if they do wait over taking the money right away. And others who use the tools to show that if you've made it to 65, you'll likely live into and possibly past your 80s, so you'll want a bigger check to last the long haul.

It's clearly a big deal for a lot of people, and something more and more people are thinking about.

As someone who has had breast cancer, I feel that I get to avoid complicated analysis on this one, for which I am relieved.

Should I be lucky enough to make it to 62, I will take it the first day I can. And I'll be happy for every month's check I get to cash.

Not such a hard decision. I wish others were so easy.

Out of the Reference Range

My oncologist's office doesn't include a reference range with bloodwork results. This means patients can see their complete blood count results but will have nothing to compare them to. If a result is flagged as high or low, there is no way to know how high or low it might be.

Useless, no?

Apparently the front office people at this office think it makes perfect sense and told me so. That's the way they do it, they said, and if I want the range, I can go over to the hospital and request it from medical records.

What? A range is not protected information. It is vital information, however. And it is information I need right alongside my bloodwork. I'm not going anywhere else for that information. It needs to come from my oncologist's office at the time I'm presented with the results.

Even doctors and nurses wouldn't know what to do without the range.

But I was laughed at for insisting that they give me the range and for asking them to pass along my suggestion that they provide this information for every patient--that bloodwork never go out without it.

After I didn't leave, they finally checked with a nurse. Apparently, nurses can print a version of the results that also lists the range. Just like I, and any other person in the world, would or should want.

What this tells me is that most oncology patients, maybe most patients, don't actually ask to see a printed copy of their blood results--or any test results. Most of us, I guess, are happy to wait until that postcard either arrives or doesn't arrive in the mail to tell us we're good enough.

Sorry folks, I'm here to tell you that doctors don't always follow up. Sometimes they forget you and your test completely. So to assume it's okay because you haven't heard is dangerous. And to think that a postcard tells the whole story is misguided as well.

I've had too many tests that matter too much to leave this in anyone else's hands but my own. I always want all the results, and I'd suggest others think about it, too.

Along those lines, I have a call in to the office manager to make sure that everyone who does take an active role in their health has the correct tools for the job.

Message from the Elite, Hard-Bitten

Doctors and medical professionals, listen up: I am not your ordinary patient. I am most likely someone who has seen, first-hand, more than you.

Your experience with disease has most likely been across a wide swath of people; mine has been personal.

That experience should give me a better seat to all things medical and me.

So when I stop by the office to pick up the results of a test that the tech said would be ready, I expect to leave with the written report.

I do not wish to hear that my doctor will be out for the week, and I can leave her a message, which she will return after she returns.

I know enough to know that message will never be returned. The best that will happen, should I follow that advice, is I will have to call upon her return to make my request again.

But I should not have to wait a week for results that are available today. Not me. I am part of the medical elite, the hard-bitten, who have lived through medical bad news. That bad news is often the reason you keep on seeing me under these circumstances--wanting the results of some test or other that is always related, in some way, to that first ominous result.

Front desk people, please learn to recognize my face and do not attempt to tell me to wait a week. Instead, make the offer to do what you should so I don't have to ask.

Because I will ask. 100 percent of the time. I will say that there's no reason I should have to wait a week. I will ask you to ask the on-call doctor to approve releasing those results. I will ask for a call today.

And I will expect a call today, or I will call and follow up. 100 percent of the time.

And doctors, if you are the one on-call who inherits me, don't ask your office person to call me and tell me to wait until the lab results come back and I can get everything together--when that might be you will never mention.

All I hear when you instruct someone else to tell me that is that you're punting and don't want to be troubled to do your job. Yes, this is also part of your job. 100 percent.

The only other thing I could hear is that something is wrong, according to the test. If it's all good or nothing significant, why wouldn't you just let someone call and tell me that? They're going to make the call anyway.

So either you're lazy, or I'm in trouble. Don't play it like that with the medical elite, the hard-bitten.

What Isn't a Risk?

This article about radiation being a threat to heart health even years after treatment has made the bc rounds. I've commented on it in a few places and knew I wanted to write about it, because the topic is important.

It's not new news that nuking the chest would possibly affect the heart. In fact, it's more along the lines of common sense.

It was a concern of mine as I struggled to make the decision about radiation, which was the hardest decision I made regarding treatment.

Thankfully, my radiation oncologist was also concerned about my heart and tried to design the radiation path to miss as much as he could. Also thankfully, my treatment center used the "gated" machine that this article mentions--one that is synced to zap at a certain point in your breathing to shield the heart as much as possible.

But I'm sure I got the highest dose they mention in the article, because my treatment involved daily regular doses and then weekly boosts of intense doses. I suppose you could say "Just don't give me the boosts," but that would risk losing the full benefit of the treatment. I'm an all in kind of gal once I decide to be all in.

I think getting radiation was a very good decision for me. In fact, I have come to think it might have been the thing that made the difference and is the reason I am still here, cancer-free six and a half years later. I'd love there to be more research on this exact point.

But that doesn't mean I don't have a risk for heart problems down the road. My heart took a measurable hit from chemo drugs and from Herceptin. But time and exercise have reversed that.

I file the heart risk away, along with all the other health ailments I may one day face because I had breast cancer and chose aggressive treatment for it.

It's a long list.

To say I don't worry about those things would be a lie, but it is true that I prefer to focus on something certain. That is the knowledge that I have had more than six years past cancer to mother my son, and I anticipate many, many more years to come.

If heart problems or other complications from cancer--or cancer itself--should come back, it'll have to catch me, because I'm already up to a sprint past that whole noise.

If Only It Were This Simple

As simple as this headline claims, then most of us who have cancer wouldn't. Or if we did, we could somehow "get better" short of chemo, etc.

I support healthy eating, living and exercise. I do it, for the most part. Always have, always will. Didn't stop me from getting breast cancer at 37.5 years old. Doesn't stop a whole bunch of other people from getting diseases either.

The message to do your best for yourself where your health is concerned is good. The undertone that we who are unlucky enough to get sick big are at fault is not.