I never thought I would know what it's like to be a woman who has the BRCA mutation for a high risk of breast and ovarian cancer. I always thought I was going to dodge these fierce health issues because somehow I would be lucky, healthy, or just not someone that has a health issue like this. Well, I have the BRCA mutation, I've had the really aggressive type of breast cancer that everyone is afraid of and I'm a survivor.
Honoring National Hereditary Breast and Ovarian Cancer Week
National HBOC Week starts on 9/30/18, and every woman with the BRCA mutation has a different story. The stories are epic, heart wrenches. Most have mothers, sisters, aunts, and grandmothers who died from cancer too young. Most have lived life under the fear of a Cancer Cloud, never knowing when it will rain down on them, raising children, loving family, all while watching loved ones go through the horrific cancer battle - surviving – or not.
Mine is different. Our family is small, and we don’t know our relatives (that’s another story). My maternal grandmother died in the 1950s of some sort of cancer. I never met her. My mother had prickly feelings about her Mom and rarely talked about her. Little sorrow or fear was shared.
My grandmother, Martha, was a nurse anesthetist who served in France during World War I. She went on to be a nurse anesthesiologist for the VA hospital in Oakland, California until her death at the age of 55 – the same age I was diagnosed with cancer. She was the only medical professional in my family other than me. She was also the only career woman I knew I was related to.
My grandmother Martha’s death certificate says “abdominal carcinomatosis.” It was probably BRCA ovarian cancer.
This means that she died with a tummy full of some type of cancer. As a doctor, I know that means her abdomen was distended, riddled with tumors and full of fluid at the end, and she suffered horribly – and she knew all too well what was happening to her. A doctor or a nurse would.
My mother always said that Martha’s cancer came from her colon. That’s what I believed all these years. In retrospect, it was probably a BRCA cancer like ovarian, fallopian tube or peritoneal.
I think I got the BRCA gene mutation from Martha, my nurse anesthesiologist grandmother that I never met.
All these years, no one knew that my Mom had the BRCA gene. She had her first breast cancer well before the gene mutation was known about. She survived it, thanks to chemo and a single mastectomy.
Cancer formed in her other breast 20 years later. But, again, this was before the gene was really on the radar or every oncologist. She survived with chemo and a second mastectomy. I saw a geneticist because of that, and the fact that my Dad’s large family was riddled with cancers, but of a different type.
The conclusion of my genetic consultation was that my chances of BRCA were low because I really did not know enough of the accurate details of my family's cancer history.
I decided that my anxiety was getting the best of me and never sent in the test kit that sat on my bookshelf for several years – it was about $4,000 to be tested. Time passed, and I finally threw the kit away.
Was it a big mistake?
From a purely scientific perspective, yes. I could have avoided cancer and chemo. Chemo left my nimble surgeon’s hands numb and uncoordinated. I can’t perform surgery anymore. Surgery was a part of my medical career that I’ve loved, so yes, that cost is really high.
But, back when the test kit sat on my bookshelf, I was in my 40s, and my life was not ready for something as life-shaking as knowing that I carried the BRCA mutation. It takes a lot of support and fortitude to face being BRCA positive. Support from family, friends – and yourself. The test was also expensive and insurance did not pay for it.
People who have known me personally know that in my 40s I was an unstoppable, working machine. Career was everything.
Being a hyper-perfect mother and wife was everything. My days included cramming in cardio classes at the gym followed by hours at the office and non-stop Martha Stewart-level domestic accomplishments at home. I packed in Mom stuff, like classroom volunteering, dance rehearsal for my kids, helping them with homework, and making the most perfect school projects, hosting mega birthday parties or sleep-overs, etc. I never stopped and never let myself stop until a job was done to perfection.
Emotionally supporting myself was not on my radar in my younger, adult years. In fact, during my 30s and 40s, I had back problems and eventual surgery for a ruptured disk – a calcified fragment the size of my little fingernail that sat directly on my sciatic nerve creating unbelievable pain – and that I refused to let stop me.
I worked "that" into my schedule, living with pain from the final ruptured disk for months before having surgery because I had a big community project I needed to finish first. Patients never knew. I can put on a good face.
In retrospect, I should have been kinder to myself.I have no idea how I would have responded to knowing that I had the BRCA mutation and that I needed my breast off, ovaries out even before menopause, and whether I could have asked for, and let myself, receive help.
At 55, when I was diagnosed with breast cancer and the BRCA gene mutation, my support system was better. I was nicer to myself. My husband and I had spent quality time in therapy, and we were nicer to each other. My perspective on life and my career was more balanced.
When I was told I needed the most horrible chemo on the planet, I gave in.
As a doctor, I knew how bad it was going to be for my body... like my nurse grandmother knew about her abdomen full of cancer. I submitted to the horrific chemo regimen, and I took time off from work to care kindly for my body.
The good self-care helped me tolerate chemo without side effects, nausea or any problem that would cause my doctors to lower or delay a dose.
My body and I handled chemo really well. The strategy worked. When removed, my breasts and lymph nodes were pronounced NED (No Evidence of Disease) when they were taken off five months after the cancer diagnosis – that’s like winning the lotto for high grade, triple-negative breast cancer.
I took time off for all the surgeries, too.
Frankly, I had no real choice; I was in no shape to work. I waited until I was physically ready to work before returning.
The old me would have never been so wise. When I did return, I listened to my limits, testing them with kindness and listening for the answers. I learned that my hands are numb, my brain processes slower than before, and my stamina has no reserve tank – I really crash if I go over my limit, so I don’t.
I know my limit, and I adjusted my work accordingly. In my 40s, I doubt I would have been so wise. As a BRCA mutation carrier, I still have parts that have higher risk of cancer, like the lining of my entire abdomen (peritoneum) and pancreas. I need to be kind to this physiology.
I never saw this BRCA mutation and breast cancer experience as my future.
Life is indeed an adventure.
Both what happens to you and how you respond are big deals. At 55, cancer turned me inward. I evolved. It would have been harder to do that in my 40s. I wonder how I would have handled it.
In my late 50s, I asked for more than to survive cancer, I asked myself to be kind to myself going forward.
I let the experience help me figure out what I needed to thrive. For the woman I used to be, that means setting limits on myself! This includes limits on how much I ask my body to do in service to my goals, learning to be sensitive to my physical, emotional and spiritual needs, and allowing time for rest and rejuvenation.
My life as a BRCA post-cancer woman is very different than it was before.
This is partly because cancer treatment left me with side-effects, and partly because I am kinder to myself. I’ve made it to the five-year mark so I appear to be here for a while longer. My family story is different than many women with the BRCA mutation. But, I think many of us find that knowing we carry the mutation is life-changing.