BRCA 1 mutation with much cancer in my family; What to do?

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Frankanaky
Frankanaky Member Posts: 1
edited March 2015 in Genetic Testing

Hi, I am almost 48 and have not had any cancer yet. I have not started menopause. I believe I am a healthy 48. I have had 5 births, breast fed my children..... About 2 months ago I found out I do have the BRCA 1 mutation. I guess I wasn't all that surprised as our family history is really consumed by cancer. My father, who passed away 11 years ago, had 4 different kinds of cancer, his mother and her sister both died of ovarian, several Aunts with breast and ovarian, cousins, my sister died of breast cancer at age 41 and my niece also died in her 30's of breast cancer. I have already been monitored very closely, rotating mammograms and MRI's every 6 months. I am very lumpy and bumpy and I do not even bother to do self exams as I am then sure I have a tumor (they are that bad). I have never needed a biopsy. So, I have scheduled a complete hysterectomy, double mastectomy ( nipple sparing) and reconstruction to be done in one month. I am getting nervous. My husband loves me very much and is somewhat supportive about this decision, but he doesn't believe statistics have a lot of truth or value and makes me question my decision. After all, I could never get cancer. I understand he is scared and doesn't want me to undergo surgeries and pain I do not need. I am just not sure I made the right decision. Am I doing the right thing?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    Only you can make that decision...and obviously it would be nice to have your husband on the same page as you. Cancer can be a total crap shoot. Being BRCA1 positive makes your odds a bit crappier than the rest of the population. As Dirty Harry would say... "Do you feel lucky?". I hope you find comfort whether or not you go through with the surgeries. For what it's worth....I completely understand and support your decision. :)

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  • JJ62
    JJ62 Member Posts: 65
    edited March 2015

    With 5 kids you have an opportunity to enjoy a lot of grandkids! And the knowledge to help give yourself the best odds. If you haven't already been there a good resource is: www.facingourrisk.org/

    It is all very doable and there are lots of great groups on BC.org

    Wishing you all the best,

    J.


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  • inks
    inks Member Posts: 746
    edited March 2015

    I am BRCA1 as well, I breastfed 2 kids and that did not stop me from getting cancer at age 36. I think you are doing the right decision, I wish I had a way to prevent my cancer. I just had a oophorectomy a month ago and it's not too bad plus I worry a lot less now. Just point your family history out to your husband and say that you do not want to be next to get cancer.

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  • sisterofher
    sisterofher Member Posts: 3
    edited March 2015

    Hi, I am also BRCA1 positive. No cancer. All women on my dad's side died of cancer (breast, ovarian, throat). I am not planning to remove my ovaries or breasts. This is my personal wish. I feel it is the best for me. I do not preech that everybody with the mutation must keep their breasts and ovaries - the choice is yours. These are your bodies and if you feel you must remove them - do that. Listen to your intuition. If the decision gives you a peace of mind - then do it. If not, try to find "your way".

    I've learnt (by reading articles and research) that screening with mammograms and MRI are only increasing risks for us ladies with the mutation. Just do the google search about BRCA mutations and danger of radiation. And stay away from x-rays of all kinds as much as possible. Our ability of fixing damaged DNA is poor compared to BRCA negative people. MRIs give lots of false positives, then they need to take a biopsy of smth that is not cancerous, thus increasing one's stress levels. Do you really need that? To be scared even more?

    The best and safest screening methods for a BRCA positive person are: breast/intrauterine ultrasounds and thermography. A combination of these two will give you a peace of mind. An annual CA-Profile blood and urine test to make sure you are not developing cancer may also be a smart choice.

    Another thing I've learnt from browsing scientific studies on hormonal prevention methods, i.e. "the pill" and hormonal IUDs. These are a no-no for BRCA mutations. Being on synthetic hormones with the mutation increases the risk tremendously. It is like a guaranteed ticket to the cancer diagnosis. So no hormones.

    I am also constantly educating myself on the dangers of environment and a wrong diet. Knowledge is power. The more you know on what YOU can do in order to not get cancer, the tighter you'll sleep at nights.

    Best of luck with your decision. Remember that if you are at peace when taking a decision, then it must be the right thing for YOU.

    God Bless!

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    I just saw an article and I thought I posted it somewhere on here that it was important how old your family members were that were diagnosed. If they were over 51, you have not much of a higher chance of getting cancer than the general population but if they were under, you have like an 80% chance. I will see if I can find it.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2015

    sisterof, the FDA says thermograms are not an acceptable substitute for mammograms

    http://www.fda.gov/ForConsumers/ConsumerUpdates/uc...


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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2015

    I did one thermogram and they did it incorrectly and said the bad breast was fine and the other one was in trouble. It had something to do with air flow in the room. So not a fan of the thermogram since it was a waste of money for me. My choice would actually be ultrasounds in the future, but we will see how it goes

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