I could not have picked a better time to have a double mastectomy, because October is Breast Cancer Awareness Month! This likely means that you've seen a pretty horrendous shade of pink just about everywhere, adorning anything from donuts to watches and skin cream. Ah, the wonders of late-stage capitalism.
Through the course of a few conversations since my diagnosis, I'm realizing that many people in my network don't have a great comprehension of my type of cancer, my treatment, and what comes along with a breast cancer diagnosis. This is all totally understandable, as I had very little knowledge of this stuff before being thrown into the lion's den myself.* So this bonus post serves to educate you all a bit- consider it your guide to what those dollars from pink-adorned food and retail are for.
So let's start with the basics- getting breast cancer at my age is pretty rare. 1in 8 American women will be diagnosed with breast cancer in their lifetime. The median age at diagnosis is 62 years old, and only 5% of cases are diagnosed in women under the age of 40. In 2019, it is estimated that about 42,000 women will die from breast cancer in the US.
Now let's get a little more specific- what types of breast cancer are there, and how does that impact treatment? As far as researchers know, there are three main things that fuel breast cancer: estrogen, progesterone, and HER-2 proteins. Upon diagnosis, a surgeon takes a biopsy of a patient's tumor, and a pathologist takes a look at the composition of their cancer cells under the microscope. In my case, my cancer is Estrogen receptor (ER) positive, progesterone receptor (PR) negative, and HER-2 receptor negative. Estrogen-fueled cancers are among the most common of breast cancers, though the majority of ER receptor positive cancers are also PR positive. They don't really know what the PR status means for treatment, so they also don't really know why I'm an outlier in that regard.
In any case, my treatment has been the same as someone with ER+/PR+ cancer. This begins mostly the same as other types of breast cancer at similar stages (in my case, stage 3), with a combination of chemo, surgery, and if necessary (and true in my case), radiation. But when all of this wraps, this is where treatments to try and prevent a recurrence begin to differ. Women with HER-2 positive cancers take a drug called Herceptin to block the proliferation of the protein that fuels the cancer, whereas women like me take estrogen suppressants for 5-10 years after wrapping treatment. This is called hormone therapy, which is great because it's proven to significantly reduce the chance of a recurrence. BUT it also sucks because it puts me into temporary menopause, i.e., hot flashes + Greg and I can't have kids (at least via me) while I'm on it.**
So why are doctors so worried about preventing a recurrence anyways, especially when they take out all of a patient's breast tissue through a double mastectomy? Even with a double (also called bilateral) mastectomy, what is called a local recurrence can still surface in your nearby lymph nodes or in your chest wall. This is generally treated with additional surgery or radiation. What is most worrisome, though, is what doctors call a distance recurrence, aka stage 4 or metastatic breast cancer (MBC). That is when breast cancer cells spread to bones, lungs, brains, or other organs. Even though it occurs somewhere else, the cancer cells are still breast cancer cells and are therefore treated as such, so doctors still refer to it breast cancer.
Anywhere from 20-30% of individuals initially diagnosed with stage 1-3 breast cancer are later diagnosed with stage 4 breast cancer. This can occur anytime from the immediate few years after treatment, to even 20 years after a patient's initial diagnosis. Unfortunately, there is currently no cure for stage 4 breast cancer, and in the US, roughly 75% of women will die within 5 years of their breast cancer recurring. A patient's prognosis (likelihood of survival) is usually tied to the size of their initial cancer and the presence of cancer in their lymph nodes.
These statistics have been pretty rough to digest, and somedays are harder than others in coping with the unknowns that I have in my future. But research is getting better each day, and organizations like Komen (despite their rough histories, see book rec below) have set goals to reduce breast cancer-related deaths by 50% by 2026. For instance, being a carrier of the BRCA2 gene mutation is oddly somewhat reassuring, as there is currently a fair amount of research on ways to manage MBC in BRCA mutation carriers. I take some solace in realizing that it is more likely than not that this course of treatment will leave me cancer free. But when science fails to reassure and I do feel incredibly overwhelmed or like my mind is going to its darkest places, my go-to is hug my Grisha, go for a walk, or to listen to Better Things by the Kinks.
Despite the anxiety around a recurrence, like the PhD student that I am, I also like to be informed. While recovering from surgery these past few weeks, I read an excellent intellectual history of breast cancer in America:
The book is written by a woman who was diagnosed with HER-2 positive breast cancer at the age of 35. It's a super interesting read, and I would highly recommend it to anyone interested in the social, political, and scientific evolution of this nasty disease and in learning more about how the current standard of breast cancer care has been established. It is chock-full of interesting facts, like how west coast oncology differs slightly from east coast oncology (what the director of breast oncology at MSKCC, where I'm getting my treatment, describes in the book as akin to the difference between "east coast jazz and west coast jazz.").
And to not end on a total serious note, how about them Nats?! From the fairest of fair weather fans, we're going to the series for the first time ever:
*When I was diagnosed, I actually thought that there were 5 stages of cancer!
**Doctors don't really know the long-term impacts of stopping hormone therapy and restarting it in order to get pregnant and have kids. There is currently a clinical trial examining the impacts of interrupting hormone therapy on what doctors call "disease free survival rates," but unfortunately he results won't be available for many years.
Comments
Post a Comment