Anyone have DIEP at John Hopkins?

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julz4
julz4 Member Posts: 2,490
edited January 2019 in Breast Reconstruction

I had Triple Negative bc 6 3/4 years ago. I had micro invasion so only had RADS. I was 45 & was diagnosed with BRCA2 sequencing L3011P (9260T>C) Favor Polymorphism. Which might not be a cancer causing variant. 11 months ago I was diagnosed with Thyroid cancer & now I'm thinking about reconsidering my options. I now have about 6 Drs visits a year for Drs appointments & another 5/6 for testing because of the 2 different cancers. I travel to Hopkins because of my BRCA2 variant. Extra testing, money will go on for another 20+ years. I can't help thinking that some cancer might show up again. Much higher chance with the boobs. Anyway this is my only way & it would be a complete double with DIEP if I can. Much to think about.

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  • Dm39
    Dm39 Member Posts: 32
    edited January 2019

    Hello. I have not gotten treatment at John Hopkins although I hear they are great. I did however have a double mastectomy with implant exchange surgery. Breast cancer unfortunately is an ongoing process. I have multi focal invasive ductal carcinoma and additional insitu. I decided to do double mastectomy. I am glad I did both sides because I'm not sure I would like one side normal and the other side fake. I also had multiple cysts in both breasts. I have now had a recurrance and will need more surgeries. I originally went with the mastectomy to avoid treatment and additional surgeries. Now my diagnosis has advanced to stage 3 even afterwards. In retrospect I probably needed the mastectomy but maybe if I had done a lumpectomy with radiation, I might not have had the recurrence. We can't predict the future. My suggestion is to save the mastectomy as a last resort. You will be ok if you decide to get one. But it does change your life. You can't go back. You can always decide to get one later on if need be. If it was a sure way to give you piece of mind, then I would say do it. But the reality is you cannot predict your ultimate outcome. My genetic testing was negative and I still got cancer, and I still had a recurrance after the mastectomy within a years time. I have now undergone 4 surgeries on my way to rhe 5th next week and know I will have at least two more this year. Do what is best for your health including your mental health. But decide today that you will not live in fear of what could be. Talk to as many people as you can to get feedback but ultimately know that you already know what the best decision is for you. Hope this helps. Love and light.

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