Not opting for Propylactic BMX with BRCA1 gene.

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Sandals
Sandals Member Posts: 104
edited June 2014 in Genetic Testing

Anyone on here not opt to have a Prophylactic Bilateral Mastectomy with the BRCA1 mutation?

I've been reading a lot about diet and cancer and am now getting more convinced the two are linked. 

I have surgery booked for a BMX but am seriously considering not getting it done.

Anyone that has gone down this route of taking their life in their own hands, can you please let me know how it has worked out for you?

Thanks a mil...

Comments

  • ddmotz
    ddmotz Member Posts: 5
    edited November 2010

    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!!

  • Sandals
    Sandals Member Posts: 104
    edited November 2010

    I am 37 years old and only recently married.  I just don't want to take the surgery option (both breasts and ovaries) if I can prevent cancer by nutrition. 

    I am really looking for someone that has dramatically changed their lifestyle and diet and have prevented cancer returning.  I am currently reading books on this and educating myself and my gut feeling is really to follow this route.

  • ddmotz
    ddmotz Member Posts: 5
    edited November 2010

    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.

  • Sandals
    Sandals Member Posts: 104
    edited November 2010

    Thanks very much for your reply.  Really appreciate it.

    Its not that diet can change our genetic makeup, its more that I'm beginning to believe it can build our immune system to enable us to prevent the return of cancer.  To oxegenate our bodies through food/supplements.

  • nikola
    nikola Member Posts: 466
    edited November 2010

    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.

  • LISAMG
    LISAMG Member Posts: 639
    edited August 2013

    Diet and nutrition are always helpful, but will not prevent hereditary HBOC or prevent a recurrence. Take your time, gather ALL the facts, re-examine your family history and age of onsets. BRCA1 triple negative cancers tend to be very aggressive with higher rates for a new primary and a recurrence, especially with a high grade tumor. Please follow the research & consult with BRCA savvy docs to make the best informed decision for yourself. Only u can decide what is best for YOU. What are your surgeons advising you? Have u consulted with a certified genetic counselor? Best wishes to you!!

    Visit www.facingourrisk.org for empowering information where u can meet many Previvors/Survivors with BRCA1 mutation. Explore the web site & visit the messageboards (main forum has the most traffic/info.). You will find tons of support & resources too!

    Have you read the books,  Positive Results by Joi Morris or Previvors by Dina Roth Port?? Highly recommended books, especially for these agonizing decisions.

  • BRCA1
    BRCA1 Member Posts: 78
    edited November 2010

    " 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!

  • MaryMeg
    MaryMeg Member Posts: 88
    edited January 2011

    I'm of the same mind as BRCA1.  (I'm from Toronto too, oddly, but I live in NZ now.)

    Our baseline risk is about ten times the general population.  While diet and exercise may reduce that, it seems very very unlikely that it will reduce it hugely.  Our risk comes from our bodies' inability to repair broken DNA in our breasts and ovaries.  Everyone gets lots of broken cells--ours just don't get fixed.  So even if the number of cells that break is lower, they will still be there, and so will the risk.

    One concern about BRCA1 cancers is that they are frequently grade 3 and spread quickly, so that even with surveillance, a cancer can be well advanced before being found.  

    I had my PBM 4 years ago, because I knew I would hate it if I didn't, and if I then developed cancer.  At the time, my children were 3, 5, and 7, and I just couldn't face telling them that I had developed this disease, when I could have taken steps to reduce my risk by 95%.  Unfortunately, I am in the unlucky 5% (but I am in  the lucky few of BRCA cancers that are neither TN nor grade 3 so maybe it evens out?) I am still so glad that I had the surgery since I know that I did all that I could to prevent it and I don't have to live with regrets and "what ifs".

    As well, BRCA1+ people who get BC have a 26% chance of soon developing cancer in the other breast--that risk obviously goes way down if there is no other breast.  (But it's never eliminated as all cells can't be removed.)

    The most important thing is that you make the decision that seems right for you, but please learn as much as you can about the risks and benefits of the options.   Surgery is huge and scary (although I was so very very happy with my lovely TRAM reconstruction) and you've got to be sure it's the best thing for you. 

    Good luck with it!

  • Del11
    Del11 Member Posts: 944
    edited January 2011

    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.

  • pamgroth
    pamgroth Member Posts: 5
    edited March 2011

    It's amazing to look at those stats because I had a prophylactic oopherectomy and a bilateral mastectomy a few years later after finding a small cancerous tumor. After 2 years the cancer is back in the internal mammary nodes. BRCA1 doesn't let up!!!

  • hrf
    hrf Member Posts: 3,225
    edited March 2011

    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.

  • Sandals
    Sandals Member Posts: 104
    edited March 2011

    Thanks for all that info.  I've been on FORCE a good few times.  I don't see a whole lot more info than I get here. 

    I'm now on a Raw Diet (and about to study more on nutrition over the next year) and have read lots and lots of research on this.

    This is just one I googled just now:

    http://www.edge.org/3rd_culture/ornish08/ornish08_index.html

    Also, the China Study mentions that it is possible to change Gene Expresssions.  I have also attended talks on Cancer and have asked this same question and have been told that it has been scientifically proven that its possible to change gene expression over a period of 3-6 months.

    I can't get my head around cutting off or out body parts, how it will just eliminate the "cause" of the Breast Cancer.  Because even as some of you post above, you did all that and still got Cancer again.  I just don't feel its the answer to it.

    Just my opinion.

  • Del11
    Del11 Member Posts: 944
    edited March 2011

    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
    Sandals Member Posts: 104
    edited March 2011

    Exactly.

    And with being 37 years old and getting my ovaries removed brings on early menopause and that to me is not a good quality of life.   Chemo left me in a bad way, breathing problems, , lack of eyebrows, messed up period, achiness etc  All for a few extra percent that the oncologist said it would give me.

    I just think people talk about not being able to change your genes its not the genes that are the issue, its that the gene was expressed which triggered cancer.  And this has been scientifically proven to be reversed.

  • slinky
    slinky Member Posts: 397
    edited March 2011

    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.

  • Sandals
    Sandals Member Posts: 104
    edited March 2011

    Hi Slinky,

    Yes, it has been scientifically proven that a gene expression can be reversed.  I googled it and came up with this and have read many more articles. 

    http://www.hippocratesmag.org/can-caloric-restriction-reverse-cancer.html

    Have you read the China Study by Colin Campbell?  In particular, note the section on BRCA.  He mentions that other than the options we are currently being given there should be another option which is Nutrition and close monitoring (I don't have the book in front of me so I don't have the exact wording) but check it out. 

    I have also watched numerous DVD's on Cancer with BRCA information on them from the leading natural healing centres in the World.

    For me, its to research this more and more and to turn my lifestyle completely around to study raw food and its benefits along the way.  I wasn't comfortable heading in for a full Prophylactic BMX.  If I was currently not "NED" then I may feel differently but I have to do what feels right. 

    I was put in contact with one particular lady (through a friend) that is BRCA2, she attended the Herzog Clinic in Germany, (I'm not too familiar with the place) and she had no surgery, low dense chemo and no radiotherapy.  She was stage 3 and has been NED since late 2009.  She had a couple of trips to Germany to detox and to have checkups but she's clear now and living on a 50% raw diet (plus lots of other stuff like supplements, lots of exercise etc) and says she's feeling better than she has ever felt.  She is in her mid 40's.  This is the only BRCA lady I have spoken to so far that has gone down the natural path. 

    I don't know what stage of cancer you have as I don't see it on your signature but if I were you, I'd do your research.

    Everyone must make their own decisions on this and there are no guarantees as we know.  You have to do what feels right with you.

  • abr0893
    abr0893 Member Posts: 1
    edited March 2012

    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.

  • kerri72
    kerri72 Member Posts: 69
    edited March 2012

    Hi Amy, I understand this must be a difficult decision and I think you're smart taking time to research/soul search about it. All I can do is tell you my experience - prior to my diagnosis at 37, I had been a vegetarian since the age of 13, ate primarily whole grains, veggies and fruit (quite a bit of soy too), and cruciferous vegetables on a daily basis. I got moderate exercise, a decent amount of sun (vitamin d) and drank moderately, no smoking. The only way my lifestyle could've been healthier would've been if I didn't drink at all. I never used chemical body products or deodorant that had aluminum in it. I got my breast lump checked out three weeks after feeling it for the first time, and by then it had already spread to my lymph nodes. Very aggressive.

    Of course it's your decision and there are many factors to consider. But I wish I'd known my BRCA2+ status earlier and had a prophylactic mastectomy then to spare myself everything I've gone through (chemo, rads, constant fear of death - ha!). Anyway, my point is that I'm just not sure how much a factor lifestyle is when it comes to these mutations.

     Either way, I'm sorry about all the losses you've experienced to BC, and good luck with your decision.

  • Miller1353
    Miller1353 Member Posts: 84
    edited March 2012

    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.

  • Sandals
    Sandals Member Posts: 104
    edited March 2012

    I was also vegetarian since I was about 16 but did eat dairy which is just as bad as meat and I was a stress head.



    Nutrition/exercise/stress management etc does not change a mutation but it can change gene expression which is all you need. So as I said, do your research. Lots of recent studies done on this and some very recent.



    You mention getting an oopopherectomy. I can tell you the hot flushes are no fun :-)



    I see all this as an overall picture. Its your whole body that needs looking at.



    You can be a vegan and still eat badly.....still eat sugar, too much fat etc.



    Maybe chat with a good health institute before you make any decisions.

  • lisa2012
    lisa2012 Member Posts: 652
    edited May 2012

    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.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    You can eat a very healthy diet and still get cancer with BRCA. These genes do not discriminate. It would BE interesting to see if angiogenesis can stop cancer in someone with BRCA. If so, eat your lima beans!

    I did opt for PBMX with fat graft reconstruction. There was no way I would trade one risk for the risk of implants and the chemicals they contain.

  • brca2avoidingsurgery
    brca2avoidingsurgery Member Posts: 1
    edited December 2012

    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?

  • momof3boys
    momof3boys Member Posts: 896
    edited December 2012

    Hi Amy

    I don't think you're crazy. It seems like an impossibly difficult decision to make since you don't have cancer. I did have cancer, and chose aggressive treatment (and will be having a complete hysterectomy on 12/18). I'm not afraid of cancer in my breast, I'm afraid of metastatic breast cancer. I understand about the heavy monitoring, but, still wonder how do you know if/ when you've caught it and it's still just in the breast? That does kind of sound like you'd have to catch it at a perfect time, and cancer doesn't act predictably.

  • tibet
    tibet Member Posts: 545
    edited December 2012

    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.

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