When I was 30, my PCP suggested that I meet with a genetic counselor, given the family history of cancer. I found the process to be quite enlightening, as I had never met with a genetic counselor before. I did qualify for testing, a decision I wrestled with, because I was still grieving the death of my mom from metastatic breast cancer. The impact of that loss really had me questioning a lot of things about life and trying to figure out major questions, like whether or not to try to become a mom, knowing that I could also die young from cancer.
One of the factors that tipped the scale for me, was the strong possibility of having an ambiguous result. Since I was already grappling with trying not to say no to major life decisions, I determined that it was not in my best interest. I decided to move on and I was fortunate enough to become pregnant and have two children.
When Angelina Jolie underwent a preventative double mastectomy, a little voice inside me pondered revisiting the genetic testing. The reasons that prevented me before had passed, and I was coming closer to the age in which my mom and her sister were both diagnosed (42). I never followed up with that thought, in part due to having crappy insurance at the time.
Ultimately, I did find out that I am positive for a BRCA2 genetic mutation, which we discovered after I had begun chemotherapy for triple negative breast cancer. While I was determined to not second guess my choices, I did have regrets.
I think it is such a brave act to undergo genetic testing, because it means that you are staring straight into the web of possibility, having to process a probable reality of something that still has yet to occur. And then of course comes the decisions of what to do if you do have a mutation. On one hand, having choices is a privilege yet on the other hand decisions made on possibility or probability meaning that we are having to predetermine our own fate.
The reality is, even if you make calculated choices for prevention, they still don’t guarantee outcome nor do they prevent you from having many thoughts and feelings to cope with.
There is still loss for previvors, loss of innocence, loss of opportunity, loss of our body as we know it. There is pressure to determine if you should have offspring, because that means that you are putting them at risk of receiving the genetic mutation and/or having to face having a parent with cancer or getting cancer themselves. Last time I checked, this isn’t an openly discussed topic amongst people who are trying to get pregnant or who have become new parents.
The decision to have children, whether it is a previvor or a cancer survivor, is a touchy subject. There are those who judge parents who make the decision to have children, even though there are risks ahead. To be fair, none of us have any guarantees in this life, so in my opinion we need to stop living life as if we can control it.
Our previvors are brave AND they still face the “What ifs” that the rest of us do. Our previvors confront their own form of survivor guilt, knowing they had the chance to do something we wish we all had. There are support services for previvors, but they tend to be more of a hidden subgroup. If you have been reading my blogs for a while, you know how I loathe the impact of silencing. Silencing leads to isolating, which leads to more complex issues.
HBOC, a society dedicated to supporting previvors list the following on their website:
At any stage of a previvor’s journey the road is difficult, especially for young previvors who have not yet had their children or are in a committed relationship. A typical previvor journey includes several or all of the following:
■ a childhood fraught with the loss of loved ones to cancer
■ a realization that cancer could also happen to you
■ the decision to go for genetic testing and the lengthy wait for the results
■ confirmation of a genetic mutation or a family history worthy of you being deemed an HBOC syndrome carrier
■ constant fear that you or a loved one will be next
■ adulthood with more loss of loved ones to cancer
■ increased screening starting at the age of 25 for breast and ovarian cancer which includes a variety of tests, some invasive
■ chemoprevention drugs that reduce estrogen, thus causing chemical menopause
■ all of the fear, appointments, tests and surgeries associated with preventative-double-mastectomy and in some cases, to remedy complications
■ all of the fear, appointments, tests and surgeries associated with breast reconstruction
■ all of the fear, appointments, tests and surgeries associated with preventative salpingo-oopherectomy (fallopian tubes and ovaries) and in some cases, to remedy complications
■ surgical or chemical menopause and the resulting side-effects that usually include hot flashes, mood swings, cognitive issues, and long-term side-effects that may include bone loss and heart health
■ body image issues, loss of feeling and reduction of sexual function
■ loss of fertility
■ relationship issues
So to the previvors, I honor you and want to send you love. You are deserving of the care and consideration you need. Together we are stronger.
– Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages. Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.