DISCLAIMER- Mario writes about her personal experience with breast cancer and is trying to articulate the struggles she has with medication side effects, survivorship decisions, and mortality. Many people tolerate hormone blockade without significant side effects. She absolutely believes in the very best medical care being offered to everyone, encourages everyone to try the best agent for their own disease, and encourages close consultation with an oncologist when making treatment decisions. This article should in no way be construed as anti-medication or anti-treatment. Each individual needs to make informed decisions for their own particular circumstances.
That’s roughly 3420 days.
This is what it takes for me to be a “breast cancer survivor.”
The offending drug contained therein, I have (not so) affectionately named I’m-A-Mess-Tane (Exemestane). It’s my second drug in the class of 3 available hormone therapy drugs I have tried. The other one, I named A-Nasty-Zole (Anastrozole).
I’m an early-stage breast cancer survivor. I hate the word “survivor” because it makes it sound like my life with cancer is over.
My friends say, “You look great!” and “You kicked cancer’s butt!”, and “I’m so glad it’s behind you!”
Yet here I am, psyching myself up for another day of torture by this medicine I need to take for 10 years to give me a somewhat reasonable chance of staying alive to see my 60s. This doesn’t feel like a cancer survivor- this feels like I’m still actively in treatment. In fact, the hormone-blocker medicine I take is almost as bad as one of my chemo drugs as far as side effects go. But instead of taking it every other week for a finite period of time, I need it daily for a decade.
If I don’t take a hormone blocker, I will feel great, but my very aggressive, poorly differentiated breast cancer likely will metastatically recur in the near future.
But taking the hormone blockers to prevent my cancer from coming back has proven to pretty much make my life miserable with crushing hand and foot pain, debilitating headaches, nausea, and profound fatigue.
And I’m not alone. Many women stop this class of hormone-blocking treatments to prevent breast cancer recurrence due to debilitating side effects. Some switch to tamoxifen, which is in a different class of hormone blockade drugs, if they are candidates for it. Others go unprotected. These are not decisions to be taken lightly.
Stopping my specific treatment increases the published risk of breast cancer recurrence by 50%. Are the side effects I’m dealing with worth the benefit of potentially extending my life? I say potentially, but the benefits are real. The 10-year risk of breast cancer recurrence for me goes from 75-80% with no hormone-blocking therapy, to 38-40% risk of cancer recurrence if I take hormone blocker medicines.
I could change the class of hormone-blocker I use, to one that might not make me so sick every day, but that would statistically not be quite as effective at preventing my cancer from returning. How can I make a choice like this? If I change medicines, and my cancer comes back, will I wish I had stuck torture out with the more effective but also more debilitating hormone treatment? If I stay on the most effective therapy and recur anyway, will I regret that I wasted my “healthy” life incapacitated by side effects?