If you knew that I don’t have cancer, you might find it strange to hear I have regular appointments with an Oncologist. You might also scratch your head as I throw around terms like transvaginal ultrasound and prophylactic salpingo-oophorectomy.
You see, I wait for appointments in the same waiting area with people who are suffering from cancer. Most of them are older than me, their frames look far more fragile than my healthy athletic build. My skin is brighter, and in most cases, I have way more hair. As I sit there I can feel their eyes looking at me, trying to figure out what it is I have, while I sit there, trying not to have eye contact so they might see the fear in my eyes, trying to breathe into the beautiful reality of what I don’t have.
I undergo many of the same tests and wait for the same results as they do, realizing that the call with results could have information that changes everything from that moment forward.
While I have thankfully not worn these peoples shoes as cancer patients, my experience as a caregiver to both my mom and sister as they faced cancer left me positive I wanted to do whatever I could to avoid the same fate. When a genetic test result confirmed that I too was likely to get breast cancer, I knew immediately that prophylactic double mastectomy was what I had to do. Seven years ago I literally cut that risk from my chest and dropped my risk of ever being diagnosed with breast cancer by 90%–making my chances of getting breast cancer half that of the average lady sitting next to me.
While it felt freeing to go from being the most likely to get breast cancer to the least, the threats did not end there. I am also at increased risk for developing invasive cancers such as melanoma, ovarian, stomach, pancreatic, and colon cancers. The only good news of being a BRCA carrier is the hypotheses that BRCA mutations might have evolutionary advantages, such as higher intelligence.
All jokes aside, it remains true that although I don’t have any actual breast tissue left (replaced now by an implant on one side and tissue from my abdomen on the other), I still have to have a clinical breast exam once a year and an MRI of my non-breast tissue boobs every few years to check that my implant is intact. Also, since ovarian cancer risk is also higher among people with a BRCA mutation, I undergo surveillance for that by getting a CA125 blood test and a transvaginal ultrasound (yep, a medical dildo!) every six months. While these are no party physically, the real problem with these tests is that they are imperfect. Even at a rate of every six months, you could have a clear result in March and a “Stage 2” tumor by September. Ovarian cancer is a doozy, and these tests are more helpful for knowing that cancer is there, than for prevention or early detection.
However, while it was a no-brainer for me to have a mastectomy after watching my sister and mother suffer and die from breast cancer, the decision to remove my ovaries has not come as easily. I remember when I met my friend Teresa, also a Previvor, and she had recently gotten her ovaries removed, but was intrigued by my motivation to have a mastectomy. Teresa had watched her mother die a fast and difficult death from ovarian cancer, was not planning to have children, and was over the age of 40, so she removed her ovaries without much indecision or struggle. However, when she heard my story of removing my breasts she could not relate.
To me the opposite is true. Ovarian cancer is not a part of my life story so I am not driven toward making hard choices in that area of prevention. What I knew of having a prophylactic salpingo-oophorectomy is no party. Before your surgery you are hormonally your own age, in my case, 43. But when you are rolled out of the OR you are a woman in her 50’s. This is surgical menopause and potentially side effects include vaginal dryness, hot flashes, mood swings, insomnia, weight gain and lack of sexual desire. Who is going to run toward that list? So for now, I keep my ovaries. They are likely protecting me from early onset bone density loss and heart disease which makes worth holding on to them. But I think their time is near. I don’t want to be the dummy that cut off her breasts and then dies of ovarian cancer because I was too afraid of the potential side effects.
Yet, even with all these challenges, for me, the hardest part of living with all this is the feeling that I may have passed this along to my own daughters. It feels horrible to think about them having to live with these same choices to consider.
I make myself feel better about all of it by trying to make a mark on the science of genetic cancer by participating in research. Just the other day I was packing my things up to leave my family for 36 hours to travel to San Francisco to do my Year 2 health assessment as part of a study at UCSF. My 9 year old daughter Ruby asked me where I was going, and when I explained she asked what the test was for.
“It’s to help the scientists learn a bit from me since I have the breast cancer gene,” I said. “They look at what happens to people like me, who did what I did and had a surgery to see how they compare in certain areas of their health and wellness in time.” I was happy with my reply and thought this would all certainly make sense to Ruby, having grown up the past 7 years with conversations about my surgery choice. Instead she reminded me that none of this really makes sense when she said, “But they plucked the gene out of you so you are not a person who is living with the gene.”
Ah, how I wish it were true Ruby—that they could pluck this thing right out of me, and potentially out of you and Marley too. Instead I continue to hold hope, each and every day that by telling my story, by being part of research, and by reaching out to others who are in the same boat, that before you need to worry about it, we will have a way to pluck it out. Just like that.
If you are a woman who has BRCA mutation and you are willing to give one day of the year of your life to travel to San Francisco and have a few non-invasive tests done in the name of science – they only need 9 more women for this study. I was told on my last visit that this last 20 has been the hardest to come by – so I wanted to do my part and try to help round up a few more of you! If you are interested please contact Lynette Gonzalez at firstname.lastname@example.org