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!
Learned I was BRCA2+ 2/2012. DIEP Prophylactic bilateral mastectomy 6/2012 and Oophorectomy 9/2012.
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I was recently divorced and working as a contractor and didn't have any insurance benefits anymore. My usual mammogram place called to remind me I had missed my yearly mammogram (I started having mammograms every year since I was 30 because of family history of BC: Mother, Paternal Aunt, Paternal Grandmother). They told me there were places that would do mammograms for free and gave me a list of numbers. I called one which was through UT Southwestern and they set me up with an appointment through their mobile mammogram unit. About a week after the mammogram I received a call stating they would like my previous records because they saw something suspicious. I have had to go back for ultrasounds, etc. several times because of "suspicious" findings. I've had a surgical biopsy at one point but it was found to be a clogged milk duct (my biological mother had DCIS and had a double mastectomy). In the back of my mind I was hoping the reason they were asking was from something that had already been checked into and dismissed.
About an hour after that call I received a call from the genetics department asking if I'd ever considered testing for BRCA. I have actually thought of it many times but never acted upon it. I decided I would this time. We set up an appointment for a few days later. Because I had received this call not an hour after receiving the call about the suspicious mammogram, I was scared out of mind. I mean they must have found SOMETHING since the genetics department called so quickly after the radiologist called?!?!
I had my prior films sent over and thankfully, it was something that had already been seen in my films and dismissed. In gathing information for the my genetics appointment, I found out my Paternal Great Grandfather also had BC. At my genetics appointment they felt that I was a good candidate to be tested based on my family history however apparently I earned too much money. I was very upset because I didn't have the thousands of dollars to be tested. When I was about to leave, one of the counselors checked on a grant for people who used the mobile mammogram service and thankfully, it worked! I received a grant to get my testing done and it may have saved my life!
I started a new job (with benefits!) on February 20, 2012. I tested BRCA2+ February 21, 2012. Not through my mother's side but through my father's side. I encouraged my Paternal Aunt (who had already had breast cancer) to test as well. She did and indeed was BRCA2 + with the same mutation. Her daughter, my cousin, then went and tested and unfortunately she tested positive with the same gene as well.
Since my new insurance wasn't effective until April 1, 2012, I had to wait...and I researched my options. Many years ago, after being called back again after a "suspicious finding" from my mammogram, I made a statement "I wished I could cut my breasts off and do reconstruction so I don't have to go through this stress anymore!" Well, my mind was made up immediately as to what I was going to do. The questions now were: Who? When? Where? What kind? Thankfully I had the total support of my family who would do anything they could (donating flight miles, hotel points, come with me, etc.)
I met with a breast surgeon and plastic surgeon and was told I wasn't a candidate for DIEP because there wasn't enough fat and that really my only option was for expanders/implants which would take about a year from start to finish with surgery/fills/exchange. I started crying immediately. That wasn't what I wanted. We went ahead and scheduled the surgery for the beginning of the following year so I would have some PTO built up from my new job.
In the meantime, I started viewing the FORCE website. This is where I learned about The Center for Restorative Breast Surgery (NOLA) and PRMA. I called both and found that my insurance didn't cover PRMA but NOLA would work with what I had. I filled out my questionnaire and sent my pictures in. I WAS a candidate for DIEP and we scheduled the surgery for June 28, 2012. The reason we scheduled it so quickly is because my employer was looking at changing insurance providers and we knew what to expect with the current provider. A new provider may be worse. And although I didn't have ANY time built up from my new job, they let me take a leave of absence albeit it would be unpaid. I sold my house on Monday, left for New Orleans on Tuesday, pre-op on Wednesday and surgery on Thursday. Talk about one of the most stressful weeks of my life! But it all worked out.
My DIEP was performed and recovering wasn't nearly as bad as I had prepared myself. The drains are probably the worst part. My mom and I stayed in New Orleans for 10 days and then I flew home to finish my recovery.
I went back for my revision surgery/Oophorectomy on September 26, 2012. The recovery from this surgery was a little harder I thought. They had warned me it would feel like I was hit by truck because of the liposuction. It was true.
One of my breasts didn't heal as nicely as the other one and because of this, I'm going back for my 2nd revision surgery on December 13, 2012 (gotta get it within this year's deductible!)I'm confident this will be the last surgery and my journey will be over. Emotionally, I haven't cried about it as much as I thought I would. I think because I've always had it in the back of my mind that it made it easier to deal with. Most of my crying has been about feeling like I'm putting others at an inconvenience because you really have to rely on others during this whole process!
Insurance co-pays/deductibles as well as time off from a new job!
I would do everything the same, exact way.
FORCE directed me to my doctor! The message board has been a Godsend. The women on it are extremely brave and helpful.
The work FORCE has done to educate/promote/empower those that are BRCA+ is absolutely wonderful.