Statistically, 1 in 8 women will be diagnosed with breast cancer in their lifetime. Per the Breast Cancer Research Foundation, breast cancer is the most common cancer globally and represents 1 in 4 of all cancers in women. It is the second most common form of cancer in women behind nonmelanoma skin cancer. In 2020, about 2.3 million women were diagnosed with breast cancer worldwide and 685,000 died. Every 14 seconds a woman is diagnosed with breast cancer somewhere in the world.
Around 3% of women who have been diagnosed with breast cancer will be diagnosed with a second breast cancer after about seven years. 8-10% of women who have been diagnosed with breast cancer will be diagnosed with a second breast cancer after about 25 years. (Susan G. Komen Foundation, “Personal history of breast cancer or other cancers”)
The lifetime risk of women in the general population getting an initial breast cancer diagnosis is 13%. For women with the BRCA 1 or 2 gene, this jumps to 60%. The risk of a second diagnosis of breast cancer in women in the general population is about 5-10%. The risk of a second diagnosis of breast cancer of women with a BRCA 1 or 2 gene mutation is 10-30%. (Susan G. Komen Foundation, “BRCA1 and BRCA2 inherited gene mutations in women”)
Ladies, when was your last mammogram? And if there is a history of breast cancer in your family, do you know your BRCA status?
I was diagnosed with Infiltrating Ductal Carcinoma in 2011. I was young, fit, and healthy, and so it was shocking, but I cannot say I was entirely surprised–my grandmother had had breast cancer, my aunt on that side of the family had had breast cancer, and my father had had prostate cancer. I didn’t get genetic testing at the time because . . . my grandmother had had it, my aunt had had it, my father had had a related sex cancer; what could a genetic test tell me at that point, that I had a risk of cancer? That ship had sailed. The reason given to me to undergo the testing (which my insurance didn’t cover and which was very expensive for a teacher’s salary)– if you have the gene then your children will know to be vigilant–didn’t seem especially compelling, particularly when, in the United States at the time, you could be denied health insurance coverage for a pre-existing condition. Genetic testing telling you you have a gene that statistically places you at greater risk of cancer seemed like a terrible thing to saddle my children with under the circumstances, and further, seemed like it would serve no other clear purpose–I had already had cancer, and would be vigilant about screening going forward; my kids could start receiving mammograms earlier than would ordinarily be the case. Why test now? I declined because of the expense and the implications for my children regarding their future health insurance coverage (neither of which should have been a deterrent because this kind of screening support should be routinely and affordably available to help people manage their health, insurance companies should want their policy holders to be able to make preventative choices that will improve their health outcomes [and expenses] in the long run, and I’m glad things have changed somewhat for the better in this regard.)
Fast-forward 10 years. After a lumpectomy, four rounds of chemotherapy, and a radiation regimen I had been on the hormone blocker Tamoxifen as a pre-menopausal woman. Tamoxifen is only prescribed for ten years; no studies to date had shown it to be effective beyond that. This past December, exactly one year after I went off of Tamoxifen, I went in for my routine annual screening mammogram, and it came back with suspicious things in both breasts that needed to be biopsied. (My oncologist: but don’t worry, most of the time things are benign. Only 20% is cancer. Me: not in my experience. And what are the odds *both breasts* are benign in someone with a personal history of breast cancer? My oncologist … Me: yeah, there it is.)
At first we thought it was a relatively simple case; the radiologist doing the biopsy thought we were looking at a teensy in situ cancer on the left and a slightly larger tumor at the outer 10:00 position on righty that could certainly be benign, as it didn’t look like a cancer tumor on initial inspection. We learned via the results phonecall that this is because while it is Infiltrating Lobular Carcinoma, which grows recognizable tumors, mine is pleomorphic, which creates strings of cells more than formal tumors, harder to detect–we were lucky mine had formed a mass to one end. This means I have two different cancers, one to a side. One is “”in situ,” “Ductal Carcinoma In Situ,” or DCIS, meaning it never left the milk duct it was developing in. The other infiltrated the regional lymph node system, with 3 nodes of 13 testing positive. So lefty is stage 0, and righty, stage 1A. Both are hormone positive, HER2 negative–the “good” kind, that responds to hormone therapies.
Importantly, this is not a recurrence of my first cancer, which was Infiltrating Ductal Carcinoma. I say importantly, because I went off my hormone inhibitor in December 22 after ten years, the recommended course of therapy, and exactly a year later my body is feeding cancer again. There are no studies yet concerning the effectiveness of Tamoxifen past 10 years. My oncologists are unanimous that they believe the Tamoxifen was likely suppressing the development of these cancers, in essence “keeping things asleep.” Because it’s two new cancers and both different from the first time around, before proceeding with a treatment plan my oncologist recommended BRCA testing, which my insurance did cover; and yes, I do have the BRCA2 gene.
After a series of meetings with medical oncologist, surgical oncologist, and two plastic surgeons and a physical therapist to finalize my treatment plan, I underwent a double mastectomy with direct to silicone implants surgery at the end of February, working with HR and my admins to allow me to shift my on- ground classes to asynchronous online the week of the surgery, which I was able to schedule the Monday before spring break, capitalizing on that time off, and then I taught synchronously online the following week, returning to the classroom on week 4.
Reader, it sucked.
(The surgery, not the teaching, which preserved some semblance of normalcy amidst the madness. And not because my surgeons were not excellent, both were, as were their teams. It’s just that this surgery is a beast.)
In March, once I had healed enough from the first surgery, I underwent axillary node dissection because the sentinel node my surgical oncologist pulled during the mastectomy tested positive for cancer. (Me: what are the odds that’s the only one? SO: actually, pretty good in your case, we got clear margins. I’m not expecting any unpleasant surprises. Me: … )
Sometimes I really, REALLY hate being even partially right.
The results in, we sat down with my medical oncologist, who said with 3 nodes positive of the 14 pulled, that makes her nervous, and even though my Oncotype and node involvement don’t technically meet the benchmarks for chemo, she is just nervous and thinks I should do it. Me: okay but what is the science saying about benefit and deficit, now and long term? Because last time chemo left me with broken teeth, among other effects, and we know it does long-term harm to bone density, etc. And then you want to put me into medical menopause again, which is more long-term damage, right? That was the point where she recommended seeking a second opinion.
The second opinion came from a top-10 nationally ranked cancer research and treatment center significantly closer to where we live, so after a lot of discussion–I really liked my team–in the end, because my case seemed a LOT more complicated than we had thought, and because of the convenience of location, given radiation is every day for multiple weeks, we switched care to the research and treatment center.
My new oncologist agreed with my former one on treatment plan, long-term effects notwithstanding, and laid out the science of it–that while generally ILC doesn’t respond well to chemo, mine was exhibiting characteristics of more aggressive cancers and possibly, even likely, would; more importantly, with BRCA and a cancer history, getting cancer again so soon after after going off Tamoxifen suggests cancer cells were “sleeping” and coming off the hormone therapy allowed them to wake up, and while my scans are all clear they can’t be certain there aren’t other cancer cells hanging out elsewhere, so in my case despite all signs (Oncotype score, number of nodes involved, absence of mets) pointing to not, chemo is in fact warranted as the best option to HAVE long-term effects, because, still alive.
Well when you put it like that …
And so I have just finished the first of six doses of chemo (TC). After that, I’ll undergo a course of radiation, and after that, oophorectomy, throwing me into menopause permanently.
That’s right, folks, I get to experience both breast cancer AND menopause twice and all before age 50. I AM WINNING THE WRONG DAMNED LOTTERY!
And then, Tamoxifen again, followed by aromatase inhibitors, TBD. There is at least one medical trial concluding in the next few months that could inform that choice, and this is precisely why we elected to switch to the research center (well, this and it is only 4 miles away.)
So in all, while I am hopeful in my prognosis, I am also having All The Feels: hopeful yes, but also angry–SO angry!–shocked, stunned, anxious, strangely and preternaturally calm, spiraling into dark and twisty land, overwhelmed, impatient, patient, short-tempered, happy, sad, positive, uncertain, determined, afraid, melancholy, grateful, exhausted, pessimistic, optimistic, frustrated …
It’s been A Lot, and I still have A Lot to get through and A Lot to process; even though I’m a few months into it already, this health journey through this diagnosis is really just beginning. But I am doing it with punk hair (until this weekend, when I’ll shave it off in advance of its falling out), and a really wonderful support system.
Obviously, I have been incredibly busy and at times overwhelmed with juggling surgeries, consults, appointments, and chemo, while teaching throughout the semester, which has all left very little time or energy to write. I am happy to say I have managed to place a few poems and stories, and that this week I have felt substantially better and been able to get back to actively working on a few projects that were delayed over the past few months. I’m learning as I go that I have to be gracious with myself–“I’m doing the best I can, and I’m always trying to do better, and that’s enough,” is the mantra my therapist and I came up with to help me navigate all of this. (I am very grateful for my therapist. There is nothing like a good therapist to get you through the hardest things.)
Where it comes to breast cancer, please, be vigilant in your screening practices. Early detection is essential to successful and positive outcomes, and even a few months can make a difference in prognosis. And if there is a family history of cancer, I strongly encourage you to get the BRCA testing. If I knew in 2011 what I know now, and things operated then as they do now, armed with that positive test I would have done all of this the first time around and maybe–just maybe–not be going through a second bout of cancer a decade-plus later. I truly hope sharing this has made even one reader decide to go ahead and schedule that mammogram they have been putting off, or go ahead and do the genetic testing they have been on the fence about.