Trying to figure out what to do

Over this past year I’ve had several biopsies, and although no malignancy there was ductual hyperplasia, complex sclerosis lesion, sclerosising adenosis, and focal atypical. I also have some family history, but negative for two BRCA genes. I felt like my risk factor was too high, and I didn’t want to wait until they found cancer and have to deal with chemo, radiation, lymph node involvement, long term drug treatment, and still have to have MX. I’m having prophylactic bilateral MX next month, nipple sparing, prepectoral TEs with silicone implants. Sometimes I ask myself why I am putting myself thro this, but then I just say that one word - cancer.

This may not be the right decision for everyone, but my drs and husband agree with me. I’m one of the lucky ones -having to option to avoid cancer rather than having it thrust upon them. Good luck in your decision making.

I'm 51 and having double mastectomy in November due to LCIS/ALH, complex fibroadenoma, family history and a load of other things. I will not be having reconstruction. At first I thought I would reconstruct, but when I really looked into it and saw how many surgeries can be involved and the possible complications, I decided it wasn't for me.

Thanks, Catbird. It is a big decision, for sure. My lifetime risk is around 64% according to the IBIS calculation tool, so I'm very sure about the mastectomy, but I must admit, going flat is a slightly scary prospect. For me, though, reconstruction is scarier. I just want it all over and done with as quickly and easily as possible. We each have to do what is right for ourselves. How are you going with your decision?

I'm planning a prophylactic bilateral mastectomy in December without reconstruction. I learned I was BRCA-1 positive when my daughter was diagnosed with BC last year. My paternal gm died in her early 40s from BC and our family has had many other cancers: pancreatic, prostate, lung, uterine and leukemia. I was ambivalent at first but my daughter is so terrified I'll get cancer and she needs me to be healthy and strong for her. The 2 things that really helped me make this decision: reading a study about BRCA+ women who were being monitored and and then got cancer, and my daughter's comment that "once you get breast cancer, you can never go back to a time when you didn't have it."

I went to a well known genetic counselor in OKC. He punched the numbers and then made his own adjustments and came up with 50% lifetime. The high risk screening alone was enough for me to decide on the PBM, long before I got any numbers. I think Color Genomics genetic test gives you a % too, plus you get a consult with a genetic counselor. Last I knew it was $249. Money well spent in my opinion.

Hi, Catbird. I was in a similar situation with family history and had the BRCA testing which was negative. I did however have DCIS in my right breast. My doctor felt that a lumpectomy was best but I decided to have a double mastectomy with reconstruction. Before being diagnosed, I felt like I knew I would get breast cancer, just when? With this surgery, I don't have to ask myself this again so it's peace of mind. Plus, I would have had to do radiation that I didn't want to do. And I also know people that did not have clear enough margins after lumpectomy and had to have the mastectomy anyway. As several posts have said, it's such a personal decision and I was just wrecked for weeks deciding. But I now feel good about it (talk to me after surgery lol). Good luck in your decision.

jamiesue, it is a misconception that you don't have to ask yourself this again. People can and do have local recurrences, even after mastectomy. It is impossible for a surgeon to remove every last shred of breast tissue.