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BRCA2+ Update
by trshtwns01 (trshtwns01)
at January 2nd, 2007 (12:32 am)

Back in the summer, Iwrote to introduce myself and get some advice on the suggestions I was getting from my doctors. To recap, I have a VERY strong family history of breast and ovarian cancers, some pre-menopause. I did genetic testing and was found to have a BRCA2 mutation. My mother tested and she had the same mutation. My gyn had done some testing and found that I was already in perimenopause.

With all of these things to be weighed, I went to several oncologists and they all seemed to sway towards a 'best bet' of hysterectomy (we were done with childbearing and I was already going into menopause anyway) and a bilateral mastectomy with immediate DIEP reconstruction. After the third doctor told me that would be my best bet, and I really do want to spend a long life with my husband and our two five-year-old boys, I consented to work with a team at UT Southwestern in Dallas.

They gyn oncologist on the team did a full hysterectomy October 12 here in Dallas and everything went well. I had six weeks off of work, but I probably could have gone back to work earlier no problems.

The next phase was supposed to begin December 13 with the mastectomy and reconstruction, followed by a 5 day hospital stay. Unfortunately, it turned into four surgeries across a 10 day hospital stay. I had to beg to go home for Christmas. We did the surgery, and this plastics guy is supposed to be great. First surgery was 14 1/2 hours, and then I went into ICU. The next day, they found clotting in the right flap, so I was rushed back in for an emergency 7 hour surgery to deal with it. They knew there was only a 50/50 chance it would regain blood flow, and they gave it several days to work. It never came back, so on the 21st, I was taken back in for a shorter surgery where they removed the flap they had put in. They were going to insert an expander, but due to risk of infection, they chose not to. As if things couldn't stop at just three, I developed a softball sized hematoma under my left arm which required surgery to remove and drain.

My begging brought me home for Christmas and it was made even more special as we knew that the main reason I was doing all of this was as a life-gift to my family.

I can't say I've been positive through the whole ordeal. I cried many nights during this last hospital stay because I wondered if I had made the wrong choice. I didn't HAVE breast cancer. What if I was part of that small percentage that never did, despite the risks? This was an elective solution as a preventative measure, and that weighed heavily on me. My husband said the best thing to me when I said that in front of him - 'It's too late to go back. You made the choice based on what you knew, and now you can only move forward'.

True! So now I am looking forward. I'm learning about living life with only one breast, even though it will probably only be a temporary thing. I'm focusing on how much improved my body will be overall when this is over (heck, if a plastic surgeon is hacking on you, you may as well get him to put you back together better than you were *laugh*). Mostly, I am focusing on the fact that when I walk down the path for breast cancer awareness, join the walks, wear my pink ribbons, it will be because I have gone to great lengths to win a personal battle against this disease and I want to make sure that we move towards a world where people don't have to make drastic choices like mine.

That turned out to be much longer than I meant for it to be, thus the cut. However, if any of you are interested in seeing the journey I went through, feel free to check out my journal TrshTwns01 where I talked about the procedures, the choices, the doctors, and my feelings, throughout the process. It isn't ALL of my journal, but the agony over the genetic testing is around June/July and then October - December follow the hysterectomy and mastectomy/partial reconstruction.

A big thanks to all of you who provided support and advice during this time. Please feel free to contact me if there is anything I can answer for you.


Posted by: The Artist Formerly Known as Irish_Lily (kellygreen)
Posted at: January 2nd, 2007 07:35 am (UTC)

Wow. Thanks so much for posting the link about the surgeries. I really want to have them, and so it's nice to hear just what might be in store. It's almost 3am here now, but I plan on reading all about it tomorrow.

I'm glad you're doing well, and best of luck with everything from here on!

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