Just Biding Time, I Guess

I cancelled my gyn onc appt this week. I just had enough with all the medical bills and having to work so hard to figure them out and make them right that I couldn't face opening that door yet again with a specialist who is the only of his kind in the whole city.

Bet he'd charge way more than the $575 my onc charged. And I'm not convinced he'd really have any answers for me beyond what I already know--that dr's don't have good answers for women who've been negatively affected by tamoxifen.

It's not something they follow, watch or really know how to respond to with nuance. Which, of course, is wrong and everything else, but I doubt I can change that.

I can only control how crazy I let it make me.

So, why would I let it me make me crazy in the first place? Why should I even care?

Mainly because all the symptoms I am having could either be effects from tamoxifen or cancer. Tamoxifen is known to cause all these symptoms. It's also known to cause cancer.

There are some tests they can run to shed a little light. One is an endometrial biopsy, which I've had five months ago. That involves ripping little bits of your endometrium out and studying it to see if it's cancer.

My biopsy was negative for cancer, which is good, but they sampled maybe 1% of the horribly thickened endometrium stripe. Cancer could be anywhere in there and not just confined to one of the little pieces they grabbed at random. I've read reputable studies that say an endometrial sampling biopsy like this isn't good enough for women who have had breast cancer.

That's because another cancer is more likely for me because I've had a first cancer and because I've taken tamoxifen, which is known to increase my chances. That way of thinking just makes sense to me.

Furthermore, cancer can occur at anytime. It might not have been there five months ago at biopsy time; it might be there now.

So I've had a test that turned out good, but I wouldn't say that's good enough and I'm done. A more thorough biopsy could be obtained via a D&C procedure, which would basically scrape the lining out and biopsy all of it that they could get (probably could never get 100%).

That's put-you-out-for-it surgery, which I detest. Also my ob/gyn's first question to me after suggesting this procedure was, "You don't plan on having any more children, do you?" There's a strong chance of messing up the reproductive stuff with this procedure.

I'm probably not planning on having any more children (which is never a question to be asked glibly or off the cuff or as if of course you know--anyone would know--the answer!!!!!!!!!!!!!!!!!!!!!!!!!!!! to any woman, and especially not to a woman who's been robbed of that chance by the very breast cancer whose treatment now brings her to this point with no good answers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)
but I'm not rushing to sign up to foul new things up that might then cause their own problems down the line. Seems to me like that would be a possibility.

Soooooo, what I think I need, what I want is a dr who will follow up with me on this. Let's put in a plan to deal with the anemia that is likely to be an ongoing thing as this (hopefully) works itself out over a long cycle of hellish periods.

Let's devise a schedule of ultrasounds and endometrial biopsies to keep a check on the status of things as they do (hopefully) work themselves out. Let's talk about what things will look like if they are working themselves out; let's also talk about what they will look like if they aren't.

If it's looking more likely for things to be cancer at some point, let's have a plan for that, too. Let's talk about a D&C, really talk about it, all the risks put in context so I can decide on that rather than being so angry that a health professional would stomp all over what has to be a very serious and delicate subject for patients in my situation.

But first, I must go interview new ob/gyns, because this whole not even seeming to think we'd need some followup here, along with the insanely stupid "no more kids" remark tells me I've not yet found a winner.