Not opting for Propylactic BMX with BRCA1 gene.

Hi Sandals.....I am sort of  in the same situation as you,,,,not knowing what to do about carrying this brca1 gene!!   I have not been diagnosed with cancer though.  If I was however, I would just have both breasts removed and reconstructive surgery done at the same time.  I have looked into the DIEP and TRAM flap procedures as I think I would want to use my own tissue.  How old are you?  I am 45 and have been told I should consider having my ovaries removed and PBM .  It is such  a hard decision to make.  My fear is, even though I have been getting excellent screening over the past 8+ years and have never had a scare with any of my mammo or MRI's that there is an off chance there is still cancer lurking in my breasts....  that I will go in for PBM only to find out that I do have cancer!!   Of course the other fear is going into a surgically induced menopause if I decide to have my ovaries removed....very unsure about that too.   I too am hoping to see a response from others on this site as to what they have done.  Great to find something like this on the internet though and I pray all goes well for you and your decisions.  Cheers!!

Well, you have to do what is completely right for you and if you think the diet/lifestyle is your best option then you should keep researching that.  I just started on a vitamin program and am trying to increase my fruits and veggies too.   

I guess some questions to ask is can diet and lifestyle change the genetic makeup we have with the  brac1?  does it respond to that well?  Tough decisions!

Congrats on your recent marriage!  I meant to tell you that my mom was diagnosed with stage 1 cancer when she was 40...she is now 70!!!!  She had one breast removed, and now with finding out that she is brac1 positive she has decided to just keep her one breast and continue with her screening.  She is healthy and happy    So I hope all goes great for you as well!!  Let me know what else you find out about diet etc and the brca1 gene.

Hi sandals,

congratulations on Your recent marriage. It is hard time ahead of You and unfortunately You are the only one who needs and has to make decisions. You can consult Your new husband, Your family, us but at the end it is Your life.

Here is my opinion, please it is just an opinion, most likely what I would do in Your situation. You are BRCA1 gene carrier, just recently married and probably wants to start family. You are also triple negative and unfortunately You are not only carrier of the gene but You do have a cancer.

If You were only a carrier I would say start family, scan Yourself regularly and maybe in several years make decision.

Now, given grade 3 and triple negative I would go for mastectomy (bilateral), wait for ovaries removal so You have a chance of starting family.

I was 42 when diagnosed, and opted for bilateral mastectomy most likely because of my 6-year old son. I wanted to be around him for a long time. I had DIEP done at the same time, which gives You benefit of a tummy tuck and I am very glad with the results. Actually, I kike them much better than original ones (it sounds like I am talking about car). I was DD and decided to go down to B. Easier to carry around. You can also go for nipple sparing DIEP. I only went for skin sparing as I had inverted nipples anyway.

After surgery I opted for chemo 4 rounds of T/C Tx and now I am considering ovary removal. I am highly estrogen positive. In mid-time I changed my diet to prevent reoccurring and I started with regular exercise. There is a good book Eat to live with lost of good suggestions.

Anyway that is my opinion but as i told You what ever decision You make You have to be OK to live with consequences.

Good luck.

" Existing data suggest that preventive mastectomy may significantly reduce (by about 90 percent) the chance of developing breast cancer in high-risk women ."

" Bilateral prophylactic mastectomy reduced the risk of breast cancer by approximately 95% in women with prior bilateral prophylactic oophorectomy ."

I wish I can find some study with the same data on reducing risk of cancer by only changing life stile and diet. I wish, but I couldn't find anything like this, that is why I am now 3 days post mastectomy and have no regrets whats so ever.

I am very sorry you have to deal with this, but BRCA1 is scary and you have to fight it with scalpel ... just my opinion.

 Best of luck to you!

There is no way to reduce your risk to 0 when you have a BRCA mutation. i.e., there is no way to "prevent" cancer, no matter what route you choose.

There is an increasing belief in the medical community that diet and exercise can reduce your risk of cancer.  But no guarantee.  Many very healthy (BRCA+ and BRCA-) people get cancer.

PBM will reduce your risk to the single digits, down from as much as 85%, but it will not reduce it to zero.

Even oopherectomy will not reduce your risk of ovarian cancer to zero. You will still have a 5% risk of primary peritoneal cancer, which has a similar profile to OC.  And 5% is higher than the average woman's risk of getting ovarian cancer.

The choice you make... surveillance, chemoprevention, risk-reducing surgery, lifestyle changes--or a combination of those, which most of us go with--should be made with quality of life in mind. What will be easiest for you to live with? What will allow you to live your life and be happy? Living with it means tolerating what it entails to go through it, but it also means accepting how you'll feel if you do eventually get cancer.  Only you can decide that.

You won't find any studies that guarantee a certain risk reduction with any option, unfortunately. When doctors say "it's a personal decision" they mean it.  There is currently very little research to back up any of those choices. I'm sure that will change in the future, but for now we have to learn what we can from each other and the few doctors who are following us, and then go with our gut.

Good luck with your decision. Take your time (and in the meantime keep up with screenings). Don't go into surgery if you're not confident about it.  It's normal to have some second thoughts, but if you can't trust the process that brought you to the decision for surgery in the first place, it's best to wait until you're sure.

The FORCE website contains a great deal of great information. As others have said, even with screening including MRI, cancer can be missed. Speaking from experience, there is no guaranteed way to prevent BC if you carry the BRCA gene mutation. I had 2 primaries with only 3 1/2years in between. Don't kid yourself. This disease is totally unpredictable. Go to the FORCE website and find out what is happening.

There is no risk reduction option that "eliminates" risk or cause completely. Thus: risk "reduction". "Prophylactic" and "preventative" are misnomers, I never use those words myself.

For many people, what PBM eliminates is the anxiety associated with regular screenings, callbacks, biopsies, etc.  It's about INCREASING quality of life, and the decision should be made in that light. PBM has been proven to reduce risk significantly, but you're correct, nothing eliminates risk completely--including special diets.

Sandals, I would be interested to know more about the gene expression - I am BRCA1+, but have had a BMX due to cancer.  I am now contemplating a complete hysterectomy, but I am so afraid of getting old before I was meant to get old (hope that makes sense).  There are so many serious decisions that need to be made that it can sometimes be overwhelming.

I am facing a similar decision, though I have not been diagnosed with cancer at this point and am BRCA2 +.  I need to do more research, but am leaning toward no prophylactic surgery and changing my lifestyle.  I may consider a prophylactic oophorectomy since it is more difficult to detect ovarian cancer, but as far as I know, my family history is breast CA.  I am trying to research as much as I can before i make my final decsion.  If anyone has info that I can read, I would be very appreciative.  My mom was diagnosed with breast CA 1 year ago and my grandmother died of metastasized breast CA 6 years ago.

I would have given anything to have known I was BRCA1+ before I had breast cancer. I would have had a PBX and ooph immediately. It is no fun to have cancer, as many can attest. No only did my body go through chemo, multiple surgeries, and long term medications, I now fret and worry about stray cells, mets, and who would take care of my girls if something would happen. It's easy to try to  play the what ifs. If it happens to you, it is just the pits.  A genetic mutation is a physical abnormality. While nutrition, exercise and living as stress free as possible can't hurt, they don't change the mutation. I'm not trying to be preachy or push my opinion on others. I am two years out from chemo, and a day does not go by that I don't think about breast cancer. If I could have avoided this, man, would I have jumped at the chance.

Wow, glad I found this. My whole saga began last summer when 2 cousins on my dad's side were tested and BRCA1 positive. (His mom died of ovarian at 54.) one of the cousins had cancer, one not. So my sister ( cáncer 6 yrsago) was testes and she was positive. I then was tested and yes, positive. Had ovaries out (im postmenopausal) and then first screening MRI in Jan. it found an 8 mm tumor. First screening!! So BMX in feb, chemo started in April.

Never felt a lump or anything. Docs didn't either. Sneaky little creep. So much as I am not liking chemo ( third TC4 this week) I hope I've Acted as proactively as possible to get rid if this. BTW, I am pretty healthy lifestyle person. Too bad I didn't know, wouldn't have done low-dose HRT for 3 years for awful menopause. Oh well.

Hi Amy,

Just curious to see what you ended up deciding to do.  I am BRCA2 positive, no cancer yet, 2 sisters recently had BC (both had significant lifestyle risk factors) but no other known BC in our family at all, no known ovarian at all either.  I am a healthy, active, pre-menopausal 48 yr old and my doctors and sisters are pushing me to remove ovaries, but after reading some of the potential long-term side effects, I don't want to.  Doctor strongly encouraged prophylactic BMX too and I won't even consider it, for now I will do annual MRI and mammo.  I want to monitor and wait and not remove body parts yet, is that so crazy?

hi Pamgroth

Did you have the PBM and Ooph after you found the cancer? Did you do chemo first time? Usually PBM and Ooph won't reduce any risk of recurrence but reduces risks of new primiary.