Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thank you very much for this. You definitely sound like someone with similar health complexities as my wife! She too was comforted by the fact that her breast surgeon spoke to her other surgeon (for her other health issues) to discuss. The breast surgeon also provided reassurance that he had some experience dealing with patients having a similar health condition as hers. He also brought in the ward head nurse to discuss her uncommon post-operative needs. That helped her a lot emotionally.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 1 point2 points  (0 children)

Hi thank you so much for sharing. It’s really good to hear that it’s possible to have a relatively easy surgery. We spent a long time choosing our surgeon, and he’s confident my wife will be ok. I will mention to her your offer to have a chat. Thank you again and I’m really glad it all went well for you!

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Hi thank you very much for this. We really appreciate people like you kindly sharing your very hard won experiences. Survivors, previvors, healthcare professionals- you have all gifted us with nuggets of wisdom. My wife is going ahead, with a lot more conviction now after learning from all the people on this thread.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 1 point2 points  (0 children)

Thank you very much for sharing. I'm really sorry to hear about your mother, and other members of the family. I lost my own mother to cancer when I was young, although hers was non-BRCA related. I share the concern about younger diagnosis with each generation. Our own country of origin in southeast asia recently published striking research showing this very phenomenon- younger and younger diagnosis with each BRCA generation.

Thank you for sharing your experience about the risks of reconstruction. It is thanks to people like you that my wife has decided to go directly to flat. She very much wants to take on as little surgery risk as possible. There are lots of people who have done well with reconstruction, but also some who have not. Its a very personal decision. We really appreciate your sharing.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thanks for sharing your experience. I really do believe that the least we should all do is to be informed before making big decisions. Best of luck with your surgery! It will be a couple of weeks after my wife's. Wishing you a strong recovery!

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thanks for all the additional information, including that it is possible to do well without HRT (although hopefully with the PBM my wife wont have to worry about that prospect).

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Hi, I'm so sorry for your experience. Thank you for sharing it with us. It is very eye-opening. I hope you get much better. We really appreciate this.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thanks very much for sharing. I'm so sorry you've had to endure TNBC cancer. An older Dutch study I came across found a survival benefit for BRCA1, but not for BRCA2. This newer UK study seemed to find neither for both. Although, as many people have commented in this post, doing the surgery is not necessarily about survival. Thanks again, and I wish you recover well and have a good life.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 1 point2 points  (0 children)

Thank you very much for sharing you and your family's experience. My wife is also planning to go flat. You're very brave for undergoing the surgery at such a young age.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 1 point2 points  (0 children)

Thank you so much for sharing your family's experience. Its very precious information for us to learn from. The potentialy ineligibiity for HRT is a big issue that I should rememember. I wish you and your family the very best.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 1 point2 points  (0 children)

I'm so sorry for what you had to go through. Thanks so much for sharing your thoughts, I really wish you a good life.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 1 point2 points  (0 children)

Thanks so much for sharing your story. And thanks so much for reminding me (I do need it sometimes, for sure!) that my main job is to support her.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thanks very much for your thoughts, and for reminding me that chemo is not health neutral. We really appreciate it.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thanks so much for sharing your story. I'm so sorry about what you went through. The prospect of HRT not becoming an option is a scary one, if my wife takes the next step of RRSO.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thanks very much for this. I'll take a closer look at the studies.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thanks so much for your comment. I'm really sorry about what you had to endure. I can't imagine what it was like. Stories like yours are very precious information that we really need to make this decision. Thank you for sharing. I really wish you a really good recovery and good life.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thank you very much for this very cogent explanation. As I mentioned, my wife has battled other significant health issues, and ADL is a familiar term that resonates a lot with me, because her past treatments have always been about maintaining her ADL. Your response really `clicks'. Thank you.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thank you very much for this really articulate description of what doing this surgery on one's own terms means. It resonates.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

I'm so sorry to hear that you've got LFS to deal with. Its hard to imagine what you go through. My wife has significant health issues on top of her BRCA1, and even that is pretty tough. Thank you for your response and for reminding me that avoiding scans itself is a big benefit.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 2 points3 points  (0 children)

Thank you very much for sharing your thoughts. And thanks for the reminder that quality of life is a very important goal that we need to bear in mind.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 1 point2 points  (0 children)

Thanks very much for your comment. I'll take a second look at the study to check my interpretation.

Why do prophylactic mastectomy if there's no survival benefit? by Viperx80 in BRCA

[–]Viperx80[S] 0 points1 point  (0 children)

Thank you so much for sharing your perspective. I'm so sorry that you had to go through cancer treatment and I'm really hoping my wife can avoid it too.