Anyone with BRCA2 decide against preventative double mastectomy?

Dottybird

Hi all, I am 40, recently had my lumpectomy, and am about to start chemo/then rads/then hormone therapoy, when I found out I have BRCA2. There is no know BC in my family, but am jewish. I am torn about getting additional surgery (double mastectomy and eventual ooph) after the chemo or going the path of lumpectomy and lots of screenings. Seems like you need a fortune teller to help guide your decisions and you never know. Meeting with a genetics counselor next week but was wondering in the meantime, if anyone went with the lumpectomy route and how they are doing.

Thanks!

exercise_guru

I am sorry I don't know about this but I have a BRCA2 colleague who had a preventive mastectomy/DIEP etc. It was a tremendously long process so I don't think you should beat yourself for taking a conservative approach. you can revisit whether a mastectomy is right for you later. Its a very permenent decision worth finding out more.

When you are in a good place and can research there is a fellow named Valter Longo who is a researcher who developed a medical fasting mimicking diet. Search for him plus BRCA because there is a study right now using the program. The goal was to provide an alternative preventive treatment for noncancer BRCA individuals who opted out of DBL Mastectomy / oophrectomy. You might find it very interesting. I can't remember the name of the preventive study here is a link to the foundation

Valter Longo Foundation

I myself have Palb2 and had a double mastectomy ( it was not prophylactic as I had double breast cancer) I would have given anything to not have gone through that. A simple lumpectomy would have been a much more manageable choice. Also I had to have chemo and doing reconstruction during chemo was a poor choice. It led to some compromised outcomes for me. If I had a really low oncotype and could have avoided chemo and If the cancer had made it so I could have saved my breast then I would have gone the lumpectomy radiation route. At the very least I would have waited until I was done with treatment and made the decision when I was in a clear place . Then I could have traveled and chose the beat plastic surgeon and weighed my options. I had a lot of.pressure to remove my ovaries as well and I will never know if I made the right choice. That part suckity sucked big time.

Pm.me.if you need support

Even with this I am following a Whole food plant based diet as outlined in "forks over knives" to try to beat my odds of recurrence. I also follow the guidelines on Nutritionfacts.org regarding breast cancer. There is a lifestyle thread in the forums that you might find interesting if this path appeals to you and you need support. HTH

I like these threads

Dr Susan Love BRCA

Veeder14

Hi exercise_guru,

I found out 3 years ago that I am BRAC2 and already had melanoma although I didn't recognize it. Shortly after, I was also diagnosed with BC. I didn't want a preventative mastectomy for many reasons although mostly because I have severe back, neck, and shoulder problems which I think would cause havoc if I had major surgery like that. I decided to get a lumpectomy and screenings. Actually, the surgeon suggested it due to a small tumor but also said that insurance would pay for mastectomy if that's what I wanted.

BC history in my family all related to BRAC2, some relatives choose lumpectomy, some choose mastectomy, and one choose preventative mastectomy.

So far I'm doing ok I guess~breast MRI every 6 months, then Mammogram and ultrasound every 6 months.

Dottybird

Thank you both for your replies! I keep changing my mind day to day. If it means less medications overall, then maybe I will do it now but then again who knows what will happen in 5, 10, 15 years. Who knows what medical advances there will be...Ugh! I start TC next week and want to focus on surviving that first and then will try to find a PS (probably use same BS as for lumpectomy) as I recover for input and additional opinions. One phase at a time...

Best wishes!

exercise_guru

I admire you for taking your time making this decision. Sometimes we get pushed to make a decision before we are ready and the fear takes over us. I wish you the very best in your treatment and blessings in guiding you to a decision that is best for you.

Yogatyme

I have BRCA1mutatation and opted for prophylactic oopherectomy bc I am 68 years old and long finished with anything I need ovaries for. I decided to do close monitoring of breast health and had cancer diagnosed in the right breast with the first MRI. It did not show up on 2 mammograms. Core biopsy confirmed dx. I decided to have bilateral mastectomy bc the risk of recurrence is 85% in both breasts bc of BRCA1. It is a very personal decision and you are wise to be so mindful and for reaching out.

iluvham2003

Hello everyone

I just got diagnosed October 15. I done Genetics I'm a BRCA 2. No family history. I'm ER positive/PR positive/HER2 Negative. Im a stage 1A. Lump in left breast. Drs want me to double mastectomy. I'm only 35. How many have done lumpectomy and done great with BRCA 2?? Looking for more information. Thank you.