My BRCA Journey
2017- I learned I was BRCA2+
I ordered a home test from Color Genomics, created an account, and submitted my saliva samples, which I then shipped back to the lab. When my results arrived online, I was advised to consult with one of their Genetic Counselors. Emotionally unprepared for the conversation, I found myself in shock. Soon after, I met with a friend who is a Genetic Counselor and she sat me down and gave me a full overview of what to expect. She referred me to one of her colleagues and this marked the beginning of a series of consultations, which involved in-depth education on genetics, blood tests, and a thorough exploration of my family history. I gathered details from my parents about the various cancers and chronic illnesses on both sides of the family. While my mother had experienced breast cancer, my Genetic Counselor recommended that both of my parents undergo genetic testing. It was ultimately revealed that the BRCA2 mutation had been passed down from my father, who also tested positive for the mutation, while my mother tested negative (my father had two siblings pass away from cancer, so this was alarming). My genetic counselor then created a plan for me to begin screening. Per her instructions, I met with my primary care physician who referred me to a breast surgeon and gynecologic oncologist.
2017-2013- Screening
I scheduled mammograms and pelvic ultrasounds every six months, along with annual bloodwork that included the CA-125 tumor marker test. Later, I transitioned my care to Memorial Sloan Kettering Cancer Center, where my medical team enhanced my screening regimen by incorporating contrast MRIs. Following a consultation with my breast surgeon after my MRI in November 2023, I decided to proceed with surgery. I felt it was the right time, considering I was done having children and I was past the stage of “physical Momming”- I no longer had to lift my children, car seats or strollers, and they were all at the age to help me around the house if needed. The timing worked schedule-wise, and the stars basically aligned.
Prophylactic Double Mastectomy
When I met with my breast surgeon in November, we booked my procedure- a bilateral nipple sparing mastectomy with reconstruction, for January 18th, 2024. I also met with my plastic surgeon, who explained that my reconstruction would be a two-phase process; after my mastectomy was performed by my breast surgeon, he would place expanders under the muscle to prepare for my implants. The implant will be placed in a second surgery, combined with removal of my ovaries and fallopian tubes. This was a lot to digest before the craziness of the holidays.
I delved into online research and discovered the Previvor website, which offers detailed information for BRCA carriers and shares stories of previvors—those with a genetic predisposition to cancer who take proactive measures to reduce their risk. I found comfort in reading about others' experiences and sought to connect with a community. That’s when I found the Breasties app, where I connected with seven women, all preparing for mastectomies. We noted the dates each of our surgeries and showered each other with encouragement as each date approached. We cross checked our surgery and recovery shopping lists to make sure we had everything we needed for our procedures and recovery. Of the seven surgeries, I was the third to go.
On the morning of my surgery, I felt strangely calm. I didn’t expect to get emotional, but I was a big ball of tears when I saw my breast surgeon. While I’m sure I was nervous, I think what I was feeling was an overwhelm of gratitude for her adding years to my life. She gave me the greatest hug and I thanked her for doing what she does. The anesthesiologist came in and it was lights out.
I don’t remember waking up in the hospital after surgery or how I got home. I imagine there was some lifting involved by my dad and husband. My mother, a retired RN, quickly shifted back into nurse mode and teamed up with my husband in managing my pain with my meds and keeping me on a schedule. The first three days were blurry, slow moving and fragile. Nurse Mom was on drain duty. I was an “octopus” with one drain running across the top of my expander and one below it on each side, a total of four drains hanging from my pink velcro surgical bra.
I began to notice darkening skin on each side so I contacted my surgeon, and that’s when I received a referral to begin hyperbaric oxygen therapy (HBOT) in an effort to prevent skin necrosis. My first week, I was assigned a two- hour session, twice a day in a pressurized chamber, followed by two weeks of single daily treatments. For each session I watched a movie while I sat in scrubs and a clear hood and breathed in purified oxygen. I was under the care of the most wonderful and empathetic team of doctors, nurses and technicians and I became friendly with my fellow “chamber mates”; one was also on the Breasties and was under the care of my surgeons :). HBOT is a facinating treatment for infections and wound healing. In three weeks I was able to regrow capillaries and resolve the necrosis by simply breathing in purified oxygen.
With the removal of my drains and the completion of HBOT, I felt close to my normal self. The weeks following HBOT I experienced occasional nerve shocks in my chest and alternated between having bursts of energy and extreme exhaustion but was able to ease back into my normal routine. After two fills of my expander, I reached my size. Once this was done, we planned for my exchange surgery and ovary and tube removal for September.
Exchange and Bilateral Salpingo- Oophorectomy
Over the summer, I met with one of my gynecologic surgeons to discuss the details of my upcoming surgery and the potential use of hormone replacement therapy (HRT). She explained that the salpingo- oophorectomy, the removal of my ovaries and fallopian tubes, would induce surgical menopause, so we explored options for managing this. We decided on an estradiol patch for estrogen and a Mirena IUD for progestin, which would be placed during the surgery. My doctor reassured me that the hormone doses could be adjusted if needed.
We also considered removing my uterus during the procedure, but I opted against it. This might be something to explore further if you have a history of endometriosis or abnormal Pap smears. This will be the second part of my surgery, done laparoscopically. My next appointment was with my plastic surgeon, and we discussed the first part of my surgery: exchanging my expanders for implants. Due to significant rippling with the filled expanders, my surgeon recommended using a solid implant combined with a fat graft to create a smoother result.
The procedure was done on an outpatient basis, so I was able to go home the same day. I stayed in my room for the first two days but managed to move around slowly on my own. By day three, I could walk up and down the stairs. Unfortunately, I developed a fever of 101.7°F, which turned out to be COVID, so back into my room I went. Recovering from COVID was more challenging than my surgical recovery, but it gave me time to start this website! Aside from the COVID setback, I’m happy to report that this recovery was much quicker than my mastectomy. I felt comfortable moving around after just one week. I began using my estradiol patch one week post-op and have felt well since.
I’m completing this entry after my follow up visit with surgeon’s physician’s assistant, who assured me that I was healing well. I was instructed to wear a compression garment for the next six weeks and will be able to ease back into exercise soon.