I’m pleased to share the next #MetsMonday featured post by Mary S. Foti. This one covers a lot of ground. Mary shares about being a caregiver for her mother, being diagnosed with breast cancer herself, discovering she is BRCA2+, loss, survivor guilt, her advocacy work regarding EOL choices and yes, being told she had the “good kind” of breast cancer. Thank you for sharing, Mary. Be sure to leave a comment and/or ask Mary a question in the comments.
“The Good Kind”
Mary S. Foti
When diagnosed with breast cancer almost eight years ago, I was not only overwhelmed by the diagnosis itself, but also suddenly found myself immersed in a crash course in oncology, pharmacology, surgery, reconstruction and genetics. There was so much to learn, too much to process, too many decisions to make, and little time to do any of it.
My mother had gone through breast cancer twice herself, so at the time of my diagnosis, I wasn’t really surprised when it happened to me at age 41. To be honest, I expected (and dreaded) it for years because of my family history.
What I quickly learned is some types of breast cancer are considered “worse” than others, at least from a prognostic standpoint. My surgeon seemed happy to tell me the pathology report indicated I had what was typically considered the “good kind” of breast cancer: early stage (1), lymph node negative, and estrogen-positive (meaning estrogen was what made it grow).
This combination was supposedly easier to treat and had an excellent long-term prognosis.
After a biopsy, I had two unsuccessful lumpectomies (cancer still remained in the margins) followed by a single mastectomy, expander reconstruction, swap surgery (to take the expander out and put a silicone implant in its place), and several minor reconstruction procedures.
I had decided not to proceed with genetic testing until after my surgeries were behind me, and when I finally got tested in spring 2011, I found out I was carrying a BRCA2 mutation.
Everyone has BRCA genes, which act as tumor suppressors when functioning normally. But if a mutation is present in the BRCA1 or BRCA2 genes, the risk of breast, ovarian and other cancers rises drastically. My mother was retested for the same BRCA mutation and, not surprisingly, came back positive.
Having a BRCA2 mutation meant I was not only high risk for developing breast cancer in the first place, but I was also at high risk for developing another cancer in the other breast, as well as ovarian, fallopian and/or other cancers, such as melanoma and pancreatic.
To reduce my future risk as much as possible, I had the other (healthy) breast removed, as well my ovaries, fallopian tubes, uterus and cervix. Not everyone chooses to go this route, but having witnessed my mom deal with two breast cancers and my aunt dying of ovarian cancer years earlier, I wasn’t taking any chances.
It all had to go.
Having shared the same disease, my mother was invaluable to me. She listened, commiserated, and loved me more than I ever thought possible. We were even able to joke about the unsolicited (and unsubstantiated) advice friends would give us – Have you tried eating lemon peels? Drinking baking soda water? Eliminating sugar? Eating organic foods? Juicing? Becoming a vegan? How about the keto diet?
The devastating losses my family endured (including my father to brain cancer), however, were anything but funny. We were already too familiar with the reality that bad things happen to good people. We also knew our numerous relatives who died of cancer over the years had positive attitudes and led healthy lifestyles, but their “good behavior” did not spare them.
Things would be different now, I thought.
We were both survivors. We were strong, the mother-daughter team that had done everything “right”. We got our screenings, went to our doctor appointments, followed all the doctors’ recommendations for surgery, genetic testing, treatment and follow-up care. And we were alive and well, stronger through adversity, shining examples of the Early Detection Saves Lives! mantra.
I began volunteering for the Susan G. Komen Foundation. I walked in a “Race for the Cure” event in 2011, proudly holding a “Survivor” sign. (I haven’t been to one since.) I even spoke at a local Komen event about the importance of mammograms and early detection. I loathed the pink ribbon messaging, but I truly believed in – and embraced – the positive, brave, warrior mentality.
And then, in 2012, that all changed.
Around Valentine’s Day, Mom called to tell me the routine blood work ordered by her oncologist showed her liver enzymes were “off”. Further testing revealed her second breast cancer – the one that supposedly had such a “great prognosis” when she was diagnosed four years earlier – had metastasized to her liver and bones. She was now stage 4.
Although her cancer was not curable, she told me it was treatable, and if it responded to chemotherapy, she could have “some time”. She never told me what her prognosis was, and I was afraid to ask. I was heartbroken, skeptical and disillusioned. Was I going to lose her? How did this happen? What went wrong?
When I first found out about my cancer, I prayed my mother would not survive me, because I did not think my mother could bear to lose a child. But now, not quite a year and a half from my diagnosis, I suddenly felt an overwhelming sense of guilt.
Was God answering my prayer now by having my mother die? Why was I still fine, and my mother so gravely ill? If she died, did that mean I was going to die too?
Survivor guilt is very real with cancer. You feel so grateful to be alive, but you’re always conscious of the fact so many others aren’t.
I was blindsided by my mother’s metastatic diagnosis, but I also began to worry more about myself, and then I felt guilty about that too. If my mother’s “good kind” of cancer was suddenly no longer “good”, then would mine come back as well?
Early detection saves lives my ass, I thought.
How could my mother have done anything else?
She had been through lumpectomies, mastectomies, chemotherapy, radiation and countless medications. None of it worked. I had also done everything medically possible to reduce my risks. Would it do any good?
That was, perhaps, the hardest lesson for me to learn about cancer: no matter how many treatments, medications or surgeries you endure, how “good” the initial prognosis might seem, how many vegetables you eat or how positive your outlook is, sometimes cancer kills you anyway.
It’s a reality not many oncologists will discuss. It’s nobody’s fault, and often there’s just no easy explanation for it. That is why it is such a complex disease; cancer will behave differently in every single person. Statistics are just averages, and now they were meaningless to me.
My mother died September 9, 2012 at age 73. Ultimately, she developed over 20 tumors in her liver, which grew to the point where it could no longer function. Her death was a horrible experience, and scared me beyond anything I can describe. I sought counseling to deal with my grief and accept that what happened to her wouldn’t necessarily happen to me.
I still have occasional nightmares about it. In one recurring dream, Mom is being wheeled around the hospital corridor on a stretcher. She is going too fast, always just ahead of me, and I can’t keep up as she disappears around corner after corner. When I finally catch up to her, she has already died; I am too late. I reach for her, but she dissolves into sand, blowing away while I scream, my fingers still trying to hold on to her.
As the years have passed, my emotional pain from losing both parents to cancer has subsided, but it’s never gone.
I have managed to find peace by connecting with and helping others in similar situations. I volunteer as a Peer Navigator for FORCE (Facing Our Risk of Cancer Empowered), a nonprofit serving people with BRCA and other hereditary mutations associated with higher risks of breast, ovarian, prostate and/or other cancers.
As I mentioned, my mother’s death experience was far from ideal, so I also support Death with Dignity, Compassion and Choices, and do advocacy work for Ohio End of Life Options. I discussed my experiences in a previous Death with Dignity article that can be viewed here.
I no longer have a constant, paralyzing fear my cancer will return, but it is still in the back of my mind every day. Thankfully, my checkups continue to be good, there is no evidence my cancer has come back, and there is every reason to hope I will have a long (or at least normal) lifespan.
The ever-praised five-year mark, which for years stood as the milestone when one would be able to state with confidence that he or she had been “cured” – is a myth.
Yes, the likelihood of recurrence goes down after five years, but there is never a guarantee that you are cured. Slowly but surely, I have learned to live with this uncertainty by compartmentalizing it, putting it in a mental filing cabinet of sorts where I keep all the other unpleasant and unthinkable possibilities I can’t control – dying in a plane crash, car accident, natural disaster, etc.
Like most people, I don’t take care of myself as perfectly as I should, but I am sure of one thing: nobody, no matter what their behaviors, habits or attitudes might be, deserves to be blamed for getting or dying of cancer.
My mother lived her entire life – even during the last six months – with grace, dignity, humor, and deep appreciation for the gifts she had been given. Like me, she hated the battle/warrior mentality. She specifically told me not to say she “lost her courageous battle with breast cancer” in her obituary. My mother did not consider herself a warrior or a loser when her cancer returned. Cancer didn’t win when she died, and it didn’t matter if she was courageous or not.
People don’t go through all these treatments because they’re courageous; they just want to live.