There are so many stories on FORCE and so many members willing to share their experiences. We hope these profiles can help you connect with our community and get advice from people like you!
I'm BRCA1 positive and had DCIS at age 35. After undergoing a mastectomy, DTI reconstruction, and a total hysterectomy and BSO, I am finally starting to feel less afraid.
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Because my mom died from triple negative breast cancer at age 40 and her mother had breast cancer and died from ovarian cancer at 60, I was urged by my mammogram specialist to have genetic testing done.
I was diagnosed with BRCA1. I immediately started researching and planning prophylactic surgeries. I knew I wanted the 'time bombs' removed. I ultimately chose to fly out to NY to have my double mastectomy (PBM) with Dr. Ashikari and direct-to-implant reconstruction with Dr. Salzberg (both are amazing surgeons and I can't say enough nice things about them). I also scheduled my TAH/BSO (total hysterectomy including ovaries and tubes) for about two months away from my mastectomy to squeeze it all on one deductible (sad I even had to do that).
So about a week before I was scheduled to fly out for the mastectomy, I had my pre-op MRI. And then BAM!!! It came back suspicious. The surgeon called me at home that evening to tell me it didn't look good and they had to cancel my surgery so they could have time to have me do a biopsy where I lived. So here I had to reschedule my flight, my hotel, AND my surgery!!! I was scared to death and beyond stressed out. I had booked this flight so far ahead initially, so now that I had to rebook it last minute, it cost me an extra $250!! Complete nightmare! Plus, I was convinced I was dying and would have to tell my two girls that mommy won't be around much longer.
I had the biopsy and it came back showing I had DCIS. I had already researched and diagnosed myself with this based on looking at the CD for the MRI. But it still hit me like a ton of bricks to hear them say the words 'cancer', 'carcinoma', etc. I rescheduled my surgery and flight. Luckily this didn't delay things too badly, but I did have three weeks to wait. And, considering the circumstances, it felt like three years.
I flew out to NY, had the surgery, everything went relatively ok. I was fortunate that it was non-invasive and my lymph nodes were clear. I was very pleased with my surgeons. Although, I do feel that the hospital's nursing staff could've been much more sensitive towards my pain. They treated me as if I just had a boob job. (And so what if I had?? Would my pain not matter then?? Who are they to judge??) But I didn't. I had cancer!! They initially refused to give me flexeril to stop the muscle spasms. Once I had that, it helped a bit and at least made the pain tolerable.
Next I had my TAH/BSO. It seamed to go well at first, but the next day I was diagnosed with a pulmonary embolism and was put on blood thinners. I had to give myself shots in the leg twice a day. I was covered in bruises and running out of room to stick myself. I started my estrogen patch about 2.5 weeks out. Within a week, I was rushed to the hospital with internal bleeding and was septic. Everything snowballed from there. I had acute kidney failure from the vancomycin and radioactive dye from the CT scan. I had 2 blood transfusions and plasma. I nearly died several times.
As if that wasn't enough, I was diagnosed with hospital induced pneumonia. That got so bad that I developed a collapsed lung and severe pleurisy; they had to do several lung procedures on me. I realized that I had become immune to local anesthesia. I was awake the entire time they were down in my lungs and when they had to insert a tube between my ribs.
Ultimately, they had to do thoracic surgery on me. A third surgery!! That luckily went well and I slowly regained my health. My kidney function returned. At this point I had been in and out of the hospital for a total of 4 months. All of these complications for what was supposed to be a prophylactic set of surgeries. All of this because of one little gene mutation.
Having to lose 4 months of my life, but most importantly 4 months of my kids' lives. I couldn't lift my last baby until recently. I'll never have any more kids. I'll never have her be 18 months again. I missed out on months of her cuddly stage. I still can't have her lay on me. I still can barely lift her, as she's grown so much since my first surgery. My older daughter is 16 and had to watch me go through all this. She felt the pain of knowing her mom might die, several times. She has no one without me.
If I could do anything differently, I would've gotten tested sooner, but then I might not have my youngest daughter. So I don't know. I certainly wouldn't have had my two surgeries so close together. If I could go back, I would have said, to heck with the deductible and just spaced them out 6 mos to a year apart.
I've met so many wonderful women through FORCE. They all are an inspiration to me. I'm also grateful for the knowledge I've gained through this. I feel so empowered!