So my friends, come on a mystery tour with me. Forgive a little bit of science here, but don’t worry, I won’t cite the various oncology journals I’ve been reading this week. Here’s the thing. There are two drug treatments that get used with hormone positive breast cancer like mine (this represents the lion’s share of breast cancers). Tamoxifen is for pre-menopausal women. AIs are for post-menopausal women. They are both meant to deal with estrogen which, for cancers like mine, is the preferred diet. Cancer starvation is our main goal. (As a note, in cancer like mine, the drug therapy is as important as the chemotherapy to long term survival rates. With surgery only, the 10 year survival rates are less than 50%–low number. Surgery + chemo gets you to more than 60% and surgery + chemo + tamoxifen gets you to slightly above 80%.)
So Tamoxifen hasn’t worked for me, because I got cancer again, so they want to change it to an AI. But I have to be in menopause for it to change. So they took blood to see whether I was or not. One doctor looked at the blood results and said, Nope. Not in menopause. The other doctor looked at them and said, Yep, you’re in menopause. Weird, right?
Turns out there are three things they measure. Two are about ovarian function, one is about the amount of estrogen in the body. The doctors were looking at different parts of those two. My ovarian function is well into the menopausal place. But—here’s the rub—my estrogen is through the roof. Like crazy high, higher than it is for most women even at the height of their cycle. This is bad on so many counts, the most important of which is that high estrogen leads to breast cancer recurrence. What on earth could be creating such estrogen levels?
I scoured my diet. I stopped taking all my supplements, fearing that one of them was creating the estrogen banquet that had fed my cancer. Then I retested. Estrogen still through the roof.
So, I googled. Turns out there was something I was taking that is well researched for creating these super high levels of estrogen—Tamoxifen. Yes folks, you heard that right. The drug that is meant to starve my cancer may well be throwing the banquet instead. And this side effect is well known. Doesn’t this strike you as a problem?
To be fair, Tamoxifen isn’t supposed to suppress estrogen; it changes the way the body absorbs estrogen. But as far as I can tell, it’s still quite a bad thing for it to augment it so much.
But here we are. The doctors didn’t even hazard a guess that it was the tamoxifen, even though it’s well studied that tamoxifen raises estrogen levels. And so, moment by moment, my faith in the medical community leaks away. These lovely people, well experienced and well meaning, somehow aren’t asking important questions. And when I ask the questions, they just don’t know the answers and suggest I get back to doing the typical standard treatment. This typical treatment now means a shot to my belly each month, or another surgery to have my ovaries removed. It means the sudden onset of menopause from the incredibly high levels I have now to none over the course of days or weeks rather than years for most women. It means the side effects of menopause—depression, anxiety, memory loss, headache, sexual and bladder problems, osteoporosis, heart disease (one of the risk of sudden onset menopause is—I kid you not—sudden death. Now THAT’s a serious side effect). These might not be all horrible for me. But they might be.
And they want me to radiate too, with another set of side effects that makes my skin crawl. And I’d do it—I’d do it all—if I knew that these things really were right for me, that people were thinking about me and my body and my future and my cancer and my life. But it doesn’t feel like they are.
So today I am totally bewildered, and totally discouraged. I’ll bounce back. I’ll figure out a way to march toward the future again, loving each dawn and feeling grateful. But today I’m just feeling grey. I was so ready for this to turn to the easy part. I realize I wanted to retire from being a cancer patient, not just from surgery. Turns out, some jobs you can’t retire from…
(The picture today is an almost super moon to remind me that night is beautiful too.)