Having difficulty feeling 100% certain that I want a prophylactic bilateral mastectomy
Hello and thank you for the existence of this resource
I'm a 40 year old, triple positive, stage 2. I am awaiting my last chemo round on the TCH regimen. I decided to first start with a lumpectomy, as I was hoping at the beginning of my cancer journey that I would not need chemo. I also chose surgery first because it was small enough to operate and the surgeon assured me even with chemo first he would still have to take out as much tissue. Now my issue is that he didn't think I needed genetic testing. I then insisted a bit more with my onclogist and she ordered it. But these type of tests here in British Columbia, Canada, take a long time and I finally received the results after my surgery and turns out I have the BRCA-2 gene mutation.
Now I know that puts me in a high risk category for new cancers and also recurrence of this one and that prophylactic mastectomy is recommended.
But I feel I am still healing from my lumpectomy, it's very discouraging to have to do another anesthesia and surgery.
How much do I let my genetics and the fear of recurrence and/or of new cancers guide my choices. Part of me thinks, well let's get everything done now while I'm already on medical leave. But part of me wonders, inevitably, what if I just stay as is and live my life, it's also possible I'll never get a cancer again.
Such big decisions, with a chemo brain to add some level of difficulty. I'm finding this decision extremely difficult to make.
thank you
Alex
Comments
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Hi @lexa_voltz
Sorry you have joined our club that no one wants to be a part of, but glad that you have found us.
I don't have the BRACA-2 gene mutation, so my decisions don't compare so well to yours. I noticed you haven't had any replies yet, so I decided to respond anyway. The one thing we all have in common is there are always really tough decisions we end up making. I have found that reading and informing yourself as much as possible is a good first tool. Beyond that, follow your gut. Once you make your decision, it is the right decision for you. No regrets. None of us has a crystal ball to know in the future if the decisions we make are going to work out well or not so well. Make your decision, follow up any action needed for it and move on. (Easy to say right?)
You might try using the search tool to find other posts related to BRACA. You could also start another post and specifically put BRACA in the title to attract the attention of others who have had to make decisions related to this genetic.
Best of luck with your decisions.
Take Care.
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You are stuck with a very difficult decision that is for sure. I had my first run in with breast cancer in 2004 and was diagnosed with cancer again in the other breast 21 years later. The first time I had triple negative with a lumpectomy, chemo and radiation. This time I had a high-grade DCIS. I chose mastectomy this go around, and I am 6 days post op. I am feeling way better than I ever imagined. Here is my advice to you. Speak with a couple of plastic surgeons to determine what options are available to you if you were to choose mastectomy with either immediate or delayed reconstruction or no reconstruction at all. My first lumpectomy (2004) followed by radiation has limited my options due to the forever changes made to my skin due to radiation. The more you know that better you are able to make decisions going forward. Good Luck
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Thank you @mandy23 and @Furrow I appreciate your insight
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