Hi @kathomaha55
thanks for bringing this information from the UNMC panel talk back to the group. I think the members taking part in this discussion might appreciate knowing about risk and mastectomy:
- Preventative double mastectomy https://connect.mayoclinic.org/discussion/preventative-double-mastectomy/

@sparklegram here are some discussions about Tamoxifen:
- LCIS: should I take Tamoxifen? https://connect.mayoclinic.org/discussion/lcis-should-i-take-tamoxifen/
- What problems have you had with Tamoxifen? https://connect.mayoclinic.org/discussion/what-problems-have-you-had-with-tamoxifen/

I have already responded to this thread I think. DCIS in 2007. IDC in 2018. Both were treated with lumpectomy and radiation. I took tamoxifen the first time and am taking anastrozole now. I did genetic testing after the second occurrence, and have the CHEK2 gene mutation which increases my chances of getting BC again. I also have a family history of BC. Anyway, I have been trying to decide what to do and have decided on bilateral mastectomy with reconstruction. My oncologist told me that if I got it again, it might be triple negative BC which is much more aggressive because I have been taking the anti hormone drugs. I spoke with a plastic surgeon yesterday. These people do not know each other and do not work in the same hospital system etc. He told me that if I got it again that it would probably be more aggressive and that I would probably need chemo. I had spoken to a breast surgeon who I disliked very much because of her attitude, and she informed me that she had never heard of that. She also told me that I could not have nipple sparing mastectomy with reconstruction using my own tissue because I am too old. The plastic surgeon I saw yesterday said that I was not a candidate for nipple sparing mastectomy because I had had radiation, but that I am a candidate and I am not too old for using my own tissue for reconstruction. This bothered me because, both the first and second time I had it, they just automatically put me on the lumpectomy, radiation and drug regimen. I was never given a choice or offered anything different. If I had not had the radiation, I could probably have gotten the nipple sparing mastectomies. The first surgeon also told me getting lymphedema from BC treatment was a fallacy. The genetic mutation was really the deciding factor for me as it increases my chances of getting BC again. Lots to think about. If I had had the genetic testing after the first cancer, I would have had the bilateral mastectomy when I got BC the second time. Also, I was told that there is a slight chance that I could get it again, but being that there are so many fewer breast cells left, that it would lessen my chances. What bilateral mastectomy does not stop is getting BC somewhere else in your body. I feel that I am making the right decision for myself and that I am less apt to get it again with the mastectomies. Another thing I have to point out is that this breast surgeon with what I will call misinformation bothers me. My oncologist is the head of oncology at a large health system in the adjoining state and the plastic surgeon had good information and can in fact do the reconstruction as requested. He says that even though I am 69, I am healthy and a good candidate. He also said that I would only need the normal pre op testing...blood work, chest X-ray and urinalysis and that I do not need a stress test as the first surgeon said. I have learned from this that you do not have to take a doctor’s word as gospel. You can question anything and you have a right to change doctors. Also, doctors may not like their patients studying the computer looking for answers, but you have a right to....maybe you will find as I did that the first surgeon should be stayed away from. Also, if you do not want radiation and do not get it or if you do not take the medicine, that is ok. You may find that down the road things will play in your favor. My cousin has had bilateral mastectomy and has not done radiation nor meds.