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May 28, 2017 01:28PM
May 28, 2017 01:31PM
I hadn't seen any recent stories in here so I thought I would post :)
What led you to doing the testing?
My paternal grandmother died of breast cancer after being diagnosed in her late 40s. While we didn't think much of this for years, my dad's cousin reached out about 6 years ago to say that she had been tested and was found to be BRCA2 positive. She and her mother (my grandmother's sister) had both gone through breast and ovarian cancers.
What were your results, and what choices have you made based on the findings?
My dad was tested and was positive. I was 24 at the time and also tested positive. My sister tested negative. After consulting my doctors (general, breast oncologist, and gyno) I decided to continue monitoring and have my breasts removed by age 30, I'll have ovaries and uterus removed by 40. Preventive monitoring was nerve wracking every 6 months (MRIs, ultrasounds, mammograms, blood tests) and resulted in one breast biopsy. In September of 2016, at the age of 29, I had a nipple sparing prophylactic bi-lateral mastectomy with alloderm and tissue expanders put into place immediately after. 6 months later I had sub pectoral silicon implants put in.
Was payment an issue?
I was tested for the gene when Myriad still had a monopoly on the test, so it was quite expensive, but I had help from my family to pay for it. My cousin had pinpointed the exact gene we were looking for so I didn't have to have a full gene panel done which made it less expensive. As for surgery payment, since I had the blessing of knowing about these things in advance, I saved for this surgery with my husband knowing that I would be out of work for a few months over the year. My family has also been helpful in supporting us through all of this both in person and financially. Costs that I didn't foresee have been physical therapies beyond what my insurance was willing to pay for (massage, acupuncture, and physical training to regain muscles) and mental therapy for the stress/anxiety/and loss.
How have you discussed these decisions with your family?
Decisions were discussed with my family and my husband. We talked about timing. We interviewed a handful of oncologists and plastic surgeons in advance until we found the ones we really liked. I really felt grateful that we didn't have to rush this experience and could feel confident about the decisions. While this is not an option for everyone, I was also able to discuss my decisions with my employer and work out time away from work as well as a plan for transition back. My coworkers have been supportive and understanding and I've made it a point to be very open about my progress so that they can manage their expectations of me.
What suggestions would you have for others?
Getting tested and knowing in my early 20s was a blessing and a curse. There was a lot of waiting and worrying about test results, but it also gave me the time to do things the way I wanted with the people I wanted in the time that I wanted. I felt confident about my decisions and my plan. I was able to make sure that my work, my house, my personal life, mental health--everything was prepared and ready if/when I needed it. That is really the benefit of being a previvor, something that my grandmother and all the other cancer survivors out there don't get to do--PREPARE. It didn't take away the painful parts and the emotional struggle about losing a piece of myself, but it does make it so much easier in a lot of ways and I'm SO grateful for that. If you suspect a family history, get tested. I do not regret my decision whatsoever.
I did have trouble with getting life insurance after I was tested. They kept deferring their decision until my next appointment, which I pointed out to them would never end until my breasts were removed, but they were very rigid about it. I would suggest talking with your genetic counselor about the risks and benefits of genetic testing and perhaps what to do or look into before you are tested.
9/1/2016 Lymph node removal: Right, Underarm/Axillary; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
3/1/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant