I am pleased to feature another guest post during HBOC Week written by a young previvor who made some big decisions that no one her age (or any age) should have to make. Thanks for sharing your story, Carly. Women like you and Helen might not be celebrities, but your stories matter just as much – maybe more.
What Does It Mean to Be A Previvor?
by Carly Surber
Growing up I never knew much about cancer and I certainly had no idea that cancer ran rampant in my own family. When I was in elementary school, I remember driving to Los Angeles regularly to visit my maternal grandmother. I always saw her prosthesis and bra sitting on her dresser and never questioned the fact that my grandmother did not have breasts.
After all, didn’t all older women lose their breasts?
When I look back on my naivety, it is sad and somewhat scary that my life was so inundated with cancer that I thought it was normal. My grandmother survived breast cancer twice. She lived 30+ years following her second diagnosis.
In 2007 cancer hit my family again and it hit hard.
On Christmas Eve my mom broke the news. She always says that she knew she would get cancer; it was just a matter of when. Following a bilateral mastectomy, my mom was diagnosed with stage 3 breast cancer. That was when we learned about BRCA. My mom was tested first and her results were positive for the BRCA1 gene mutation.
Before long I, too, was sitting in the lab giving a tube of blood to be tested. At the time of my genetic testing, I was very reluctant to talk about it. I saw no need to discuss the implications of a positive test result; I either had the mutation or I didn’t and if I did have it, there was nothing I could do to change it.
What else was there to talk about?
Fortunately, my genetic counselor was fantastic. She was able to provide me with literature, suggest ways to deal with my health moving forward and advise me about my options following my positive test result.
Genetic counseling was invaluable.
Initially I opted for surveillance, mainly because of my age. I was only 19 at the time and did not feel I was at a point in my life to make such a big decision about a prophylactic surgery. I performed monthly exams on myself and saw my doctor every 6 months for a breast exam and once a year I began to see a gynecological oncologist to oversee my ovarian health. Both of those visits were incredibly stressful. I always thought to myself, will this be the time they find something?
A few years later I began law school. I was 23 and really starting to think about my future. Like my mom, I knew breast cancer would likely be in my future, so I decided enough was enough. I could not handle the anxiety of semi-annual exams and waiting to receive “the news”. I decided if I was going to lose my breasts, it would be on my terms, not cancer’s.
I had my prophylactic bilateral mastectomy (PBM) the summer of 2012. Making the decision to have this surgery was extremely difficult, but at the same time it was easy. With the knowledge that I faced an 87% risk for developing breast cancer during my lifetime, the decision for me was almost a no-brainer. Still, I poured over research. I talked to other women who were BRCA+ and those who had had cancer as well. I weighed all of my options. I knew the surgery would be hard physically and emotionally. But I knew if I heard the words you have cancer down the road, I would be so angry with myself.
This is not to say that active surveillance is not a viable option; it is, but it just was not the one for me.
From the moment the thought to have a PBM popped into my head (January 2012) it only took about 3 weeks for me to make the final decision. I am a very analytic person. I looked at everything, considered my options and made the best decision for me. I knew this was what I wanted to do; the fact that I had to sit around for 6 months and wait for my surgery date to come was much more difficult.
My decision boiled down to two things, statistics and my health at the time. I knew that by having the PBM my likelihood of later being diagnosed with breast cancer was substantially lower. I also knew that having the surgery while I was young and healthy would make it a somewhat easier process.
I have been extremely lucky to have a great deal of support from my family, my boyfriend and my friends. I am well aware that not everyone agrees with my decisions and I have had people say some awful things to me and about me. I have definitely felt judged and would be lying if I said my feelings have not been hurt from time to time. One person even remarked that I was sure going about “getting attention” the wrong way.
I have heard others explain it as a choice made out of fear.
Well, I did make the decision out of fear; not completely of course, but I would be lying if I said I was not scared.
No one wants to get cancer and no one wants to lose her breasts.
I loved my breasts. They were perfect because they were mine. As a young woman constantly dealing with the pressures of others, I finally felt confident in my body, so it was very difficult to part with one of my more feminine body parts. However, I have grown so much in the last year. I feel more beautiful, more comfortable and more feminine today than I ever have. Being empowered is incredible and peace of mind is priceless.
So what about ovarian cancer?
I practice active surveillance regarding my ovarian health. I felt “comfortable” removing my healthy breasts, but not having children yet and being so young has stopped me from having an oophorectomy at this time. When I am more ready, I may choose that surgery as well. Until then, I will continue to remain vigilant and take care of my body as best I can.
My advice for other women (and men) affected by BRCA and/or a strong hereditary cancer risk is in addition to listening to medical professionals, do your own research.
I spent years researching BRCA and trying to understand all of the risks associated with the gene mutation. I also spent years researching options for prevention. I learned the risks and benefits of surgeries, hormones, surveillance, etc. I was able to make an informed decision.
Speaking with a genetic counselor is a great place to start, but you must do more for yourself.
And when navigating the healthcare system, always remember that you are your own best advocate. You do have choices and your opinion does matter. I went through a few doctors before I decided on my final team of surgeons and they have made this process so much more tolerable.
Most importantly, when you make your decision, stand by it and do what is right for you. I have had some tell me they would have the surgeries and others tell me I am crazy. Maybe I am crazy, but I did what was right for me.
For me, the hardest part of this whole process has been the recovery. I have a pretty high pain tolerance so that has not been much of an issue. I struggle with the down time associated with surgery. I am not very good at sitting still and being told I cannot do something has been quite frustrating. There have been days when I just break down. Between my hectic schedule, the pain and all the adapting that’s been required, it has been trying at times.
However, through the struggles I have learned about the resilience of my body and of my mind. I did this, I got through it and I am alive and healthy today.
To me, being a previvor means many things. It means that although I do have an increased risk of a cancer diagnosis, I feel empowered and less fearful now. I have information that my great grandmother did not have before she died of ovarian cancer. I have information that other women in my family did not have before their breast cancer diagnoses.
I feel lucky to have had choices and I also feel lucky to now be in a position to advocate for others who are also dealing with hereditary cancer risk.
Carly Surber, 25, is from San Diego, California. She is currently in her third year of law school at Thomas Jefferson School of Law in San Diego. Carly learned that she carried the BRCA1 gene mutation in 2008 at the age of 19, shortly after her mother was diagnosed with Stage 3 breast cancer. In 2012, at the age of 23, she underwent a prophylactic bilateral mastectomy and reconstruction. Carly has almost completed the breast reconstruction process and is also completing her final year of law school. Carly’s personal journey is documented in the book titled, The Pink Moon Lovelies: Empowering Stories of Survival, by Nicki Boscia Durlester, released in early 2013.
Have you had a prophylactic surgery of any kind?
Would you consider taking such a step if facing a strong hereditary cancer risk?
- “My Previvor Story” – A Guest Post by Helen Smith I am pleased and excited to...
- Guest Post – Missing Them This is the first guest post...
- “Shrinking My Grief” – A Guest Post When I began my blog last...
- Musings from a Lymphedema Lady – A Guest Post by Jan Hasak The following is a guest post...