Death of a Mom, Birth of a Diagnosis
My breasts have served me well, but after 32 years together, this year we say farewell. That sounded poetic, but the reality of my situation is far from. A few months ago I found out that I tested positive for a BRCA1 mutation. I wish I could say that I received that news while my husband held my hand; that we squeezed each other knowing we could and would get through it together. But I was back in the home I grew up in, the info delivered while my mom battled end-stage kidney cancer just down the stairs, surrounded by my dad, brother, and Hospice.
I was alone with my newfound knowledge, crumpled and crying on the floor of the kitchen where my mom had served thousands of meals over my lifetime. A place that symbolized sacrificial love and time spent together was now the place where I received my own life sentence. She passed the next day.
Nothing prepares you for the death of your mom, and certainly nothing prepares you for life after her death. And when it comes to genetic cancer, you get to thinking about death quite a bit. If you aren’t familiar with the BRCA gene, the most talked about, pop culture-y thing to have happened in our unfortunate club was in 2013 when Angelina Jolie published an op-ed in the NY Times. It recounts her choice to undergo a preventative double mastectomy after her BRCA1 mutation diagnosis, and how her mom’s premature death from breast cancer was a determining factor in her decision.
It was the first time the majority of people were hearing about and discussing hereditary cancer. Even more controversially, she introduced the practice of removing your breasts/ovaries/fallopian tubes/uterus as a preventative measure before cancer occurs.
The BRCA Gene
While every person carries the BRCA gene (it’s actually a tumor suppressing gene), some people have a mutation of the gene which causes damage in cells that multiply and cause cancer. It’s believed that 5-10% of breast cancers are due to gene mutations, like BRCA1 and BRCA2. An average woman faces a 13% lifetime risk of developing breast cancer, usually occurring after age 60. A woman with a BRCA1 mutation has between a 55-85% risk to develop breast cancer in her lifetime, and at a younger age.
The risk of ovarian cancer is also exponentially increased. What’s normally a 1.5% risk, ranges anywhere from 10-60% lifetime risk for a person with a mutation. There’s a slight increase in pancreatic cancer and melanoma as well. Men can also carry the gene; their cancer risks are increased, (namely male breast cancer and prostate cancer), though the increase and risk are fairly small.
My mom had breast cancer at 38. She found out she had a BRCA1 mutation at age 63. I’m 31 and some change. It’s a gift that I have this information at my age; some people don’t find out about it until it’s too late, and others find out so early they have extremely tough decisions to make, before a life partner or kids ever come into the picture.
What’s At Risk
It’s not just a decision of, hey I’ll have these surgeries and my risk for cancer will decrease and all will be dandy. If you’re single, losing your breasts affects self-image, dating, and finding a forever mate. If you want kids but haven’t yet, losing your breasts means the loss of breastfeeding. And If you have kids, it means difficult surgeries that limit your ability to care for them, lift them, snuggle them. If an oopherectromy/hysterectomy is in the cards, you can’t carry your babies in your own uterus, and you will face the life-altering effects of early menopause.
As a previvor (the name coined for those of us with hereditary cancer risk who haven’t developed cancer – catchy, aye!) in my particular situation: married, pregnant with my third, and done with childbearing, I have two options. I can have heavy surveillance for the entirety of my life, or undergo surgeries to significantly reduce my risk of developing these cancers (double mastectomy and an oophorectomy/hysterectomy). You can bet your buns I am having those surgeries, and asap. I’m confident it’s different for every woman and her personal circumstances. But I know for myself, having agency over my life is a non-negotiable. The powerlessness and fear that come along with constant, lifelong surveillance is just not for me: a Type-A worrier.
And how are my beautiful, bright, joyful kids affected… This is the part of the mess where I get a bit weepy. Just as my siblings and myself had a 50% chance of inheriting the gene from my mom, my kids now have a 50% risk that they’ve inherited it from me. I’m hoping that since they look like mini-clones of my hubby that they also were gifted with his healthy BRCA genes.
As if there isn’t already enough guilt surrounding motherhood, now I face the thought of being the reason my kids someday develop cancer. And there are options now for IVF where you can choose only healthy, normal, BRCA-mutation-free embryos for implantation into the uterus. I could have chosen a different path: IVF, adoption, surrogacy… But as my fellow parents know, once you have kids, you can’t imagine life without your kids. While these aren’t realistic scenarios to me, they’re certainly realistic options for many.
Spreading the Message
So what’s my message? I can assure you this is by no means a pity-party. If anything it was a wakeup call to prioritize my health and well-being; to surround myself with friends who lift me up; to take on a matriarchal role earlier than expected so that I can keep my family united after losing my mom. And my larger responsibility is to speak out about hereditary cancer. As the president of a business that works with many local women in varying capacities, I have a platform to continue spreading the message of breast self-exams, annual physicals, healthy eating and exercise, and the importance of genetic testing. You should contact a genetic counselor for testing if you have:
- Ovarian cancer;
- Breast cancer;
- Prostate cancer
- Pancreatic cancer;
- Have relatives who tested positive for a gene mutation; had rare or early-onset cancer, or multiple types of cancer;
- Are Jewish or of Jewish ancestry.
And if you’re considering getting tested, waiting for results, a previvor, a survivor, or anywhere in between… you are not alone. There is a village of peers out there who are ready to embrace you, cry with you, grieve with you, and surround you with support.
For more info check out: Facing Our Risk of Genetic Cancer Empowered (FORCE), and Bright Pink, and locally, The Cleveland Clinic’s Genomics Institute.
*All statistics taken from FORCE, www.facingourrisk.org