‘THE ONLY PERSON WHO CAN SAVE YOU, IS YOU’
-SHERYL CROW on being diagnosed with Breast Cancer
It’s that time of the year that strives to make us women, a ‘titty’ bit wiser…Breast Cancer Awareness month. I wanted to take the time with this blog post to explain why I got tested for the BRCA Gene and why I think all women with a family history of Cancer should be tested. It all started for me about 4 years ago.
I am quite blessed in the fact that my family goes to Mayo Clinic in Rochester for our yearly checkups. It was at this point that my Doctor began asking about family history etc. I started listing off the Cancer history in my family as if it would have no relevance to me:
Dad’s little sister/My Aunt: Diagnosed with Breast Cancer at 32, Died at 39
Dad’s Mom: Died of Colon Cancer
Dad’s 3 Aunts: All Breast Cancer Survivors
My Maternal Grandmother: Breast Cancer
My Doctor became very concerned about a possible genetic mutation on my Father’s side of the family. She began to explain the BRCA Gene Testing (It was pretty new at this point) of course I knew nothing about, and began to make recommendations for me to begin a long process of getting approval for testing. I talked to my parents about it and somehow, at 24 and not having a realistic care in the world, the testing took a backseat until later that year. Insurance at the time also made it incredibly difficult to get tested without spending
I randomly decided to do a breast check in the shower after seeing Giuliana Rancic from E! had been diagnosed. I was really on top of things and doing them almost once a month, a few months down the road, towards the top of my left breast, it felt like I had a little seed under my skin. It didn’t feel deep, didn’t hurt and it moved but I still felt like I should get it checked out by a doctor, because obviously it was a change that I hadn’t noticed before.
I got into my family Doctor that week where they decided to perform a breast ultrasound first based on my age and size of the ‘lump’, before deciding to go forward with a mammogram. Thankfully, it ended up just being a cyst, which my mom is prone to getting as well. Now, breast Ultrasounds as a solo screening today are not considered a good tool, due to the many false positives and negatives. Thankfully, in my case, the ‘seed’/cyst was shallow enough that it wasn’t in the breast tissue, so it was more clear to determine. Today, the Ultrasound is just considered to be a useful addition to other more primary screening methods. As I left the office that day, the screening counselor I met with determined I was ‘high risk’ with my family history, and said I should seek genetic counseling.
My ‘seed’ actually went away a few months later, but I decided after that to stay on top of monthly self-exams and then asked my doctor to continue with her referrals to begin approval for the BRCA testing. I got the initial approval from my Physician, but from there you are referred to a ‘Genetic Counselor‘, who is basically the gatekeeper to getting the test. I had several meetings with my Genetic Counselor. The first meeting, she took me back into a small room where we sat at a round table, with what looked like my overdue homework piled on top from High School. She started with my Mother’s family history (I brought lists I had made with my parents before, you should include: Family member relation, Age of diagnosis, and Age of Death is applicable/if it was or was not from Cancer), after reviewing my Mother’s side, she determined no genetic links. My Grandmother would get Breast Cancer a year later, however, since she was in her 80’s it is not considered a genetic mutation.
The Counselor then asked about my father’s side, she became really concerned with the prevalence of Breast Cancer on his side, and especially his sister’s case with her age and having died from Breast Cancer at 39. I was sitting there pretty much pitting out my sweater as she ‘doodled’ on her pad, of what looked to be playing a game of Hang Man to me, waiting for her response. You know when you give your Doctor or Health Professional your symptoms or background you can tell which they are concerned by? It’s like they’re trained to do the ‘mmm’, ‘oh’, ‘ah’, ‘mmkay’ ‘wow’, after each concerning symptom/health history you give them. So finally, the Queen of doomsday ‘ahhhhs’ and ‘oooo’s’ finally simmered down to explain her plan for me outside of the gibberish I’d been listening to for 4 minutes, that seemed like 20. The conclusion? I needed to have the testing done…should I want it. She asked me to come back for another meeting, but to bring someone with me this time, so she could explain what the process would entail and to prep me for what they would recommend should I come out positive.
My mom was out-of-town for when I could get the soonest appointment, so I brought my then boyfriend, now fiancé Jordan, with me. If you haven’t been dating someone as long as I’d been dating Jordan, or are single, I’d recommend taking a best friend. Even though we’d been together already for years, I think the meeting was pretty overwhelming for him as well. So, same deal different day…only when we got into the small room with the round table, my ‘high school homework piles’ were replaced with folder after folder on BRCA testing, Breast Cancer and Ovarian Cancer. Looking through the folders waiting on the Genetic Counselor to come in, was torture. The numbers for being positive were terrifying, and some of the images of the pro-active surgeries were enough to make you want to cry just looking at them. The fact that I was 24 years old and sitting there in the first place was enough to make me feel nauseas and realize that, this is real life, and life doesn’t care if you’re 24 or 54, shit happens when it happens…and here I was, on the cusp of finding out my future.
The Genetic Counselor came in, and for about the next two hours she went through every piece of information she could possibly give me should I test positive. Just a warning to all of you thinking about getting tested, this meeting is overwhelming, I cried multiple times, and I didn’t even know if I was positive yet. Just knowing that I was close enough that they wanted me to take the blood test to see if this was my future was enough to scare the shit out of me. As I was sitting there, my mind went a little blank, the thoughts of making my body into Sushi over the higher possibility of getting Breast and Ovarian Cancer was horrifying but so was an 87% chance of getting Breast Cancer AND Ovarian Cancer by the time I was 70. She explained that if I tested positive, she recommended having a Double Mastectomy as soon as possible, and an Oophorectomy by the time I was in my early 30s at the latest (I remind you, this was almost 5 years ago, so some of these recommendations could have changed). It made me wonder shallow things like, would my boyfriend be attracted to me with a chest full of scars? Would he want to marry me if I went through with the ‘Oophorectomy‘ and couldn’t have children? Forgetting the shallow thoughts, how was I going to feel if I test positive? Would I just be paranoid all the time wondering if/when I’d get Cancer? Is it better to just live my life and get in the ‘High Risk’ program with extra screening and deal with it if it happened? It was A LOT, especially for someone at my age.
After a long meeting, I decided I would get the testing done because it was better for me personally, to know and be proactive with my options. They took us from the small room to a lab where they took my blood and basically said ‘adios, you’ll get a call in about 3 weeks’. Off to Myriad Labs in Salt Lake my blood went, and off I went home to be absolutely paranoid for the next 3 weeks. It was a horrible 3 weeks. I cried a lot, the thought of the impending results drove me a bit mad, the possible changes my body could go through at 24 was horrifying. 3 weeks rolled around and I hadn’t heard anything, driving me a bit crazier by the day. Finally, the call came and thankfully I was BRCA Negative. Hallelujah. Unfortunately, my negative test didn’t mean a negative for my little sister, she would have to go through the testing herself. Thankfully, my dad ended up being tested before her, which meant he didn’t have the gene to pass down to us.
I’m glad I went through the process. I learned the importance of being proactive about my health, and that the only person who can look out for myself is me. I’ve tried to get better at monthly screenings, I slip up now and then but at least I’m doing them often. Check out this referral site on the best way to give your self-exams and what to looks for: Self Brest Exam…My Physician compares it to looking for a ‘raisin in a bowl of oatmeal’, and I’ve always found the self exam easier to do in the shower.
Obviously, testing negative does not mean I will never get Cancer, let alone Breast Cancer…but, I have a new respect for being proactive about my health after going through the process and being prepared to take action with results when it comes to my health. All in all, whatever your history, whatever your future…stay proactive and informed, take care of yourself the best you possibly can, and always, always, always…’fight like a girl’.
My favorite awareness act to date: The CoppaFeel Flashmob
BLAINE BOWEN PRODUCTS THAT GIVE BACK to Breast Cancer!