Getting BRCA test when no one else in family is tested

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  • Daudine
    Daudine Member Posts: 221
    edited July 2009

    The test must be done on someone who has cancer. They find the gene that has the mutation that caused cancer and then they can look for the same gene in your blood.

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  • cbm
    cbm Member Posts: 475
    edited July 2009

    Mutd--I can't thank you enough.  I've never been told those things in a way I could understand;  that really helps.   No other endometrial cancer in the family and while Mother's father might have had colon cancer (no one seems to be able to confirm), he was in his late eighties if/when he did.  And believe it or not, as they aged my grandparents tended to make stuff up or get it very wrong. Also, my dad's parents died of coronary incidents at 63 and 76 respectively and who knows what else they might have had.  Mom took DES w/6 kids in ten years and lots of birth control pills in high dose form back then--she always assumed her b/c at 43 was from that.  Interestingly, Mother's family is Croation/Lithuanian and Father's is German; I remember my maternal great grandmother very well and was in my teens when she died at something like 101. 

    The early onset just isn't there in my family--w/ both BRCA and Lynch you would expect something to be present young in one of the six of us but sis is the first and was 54 at diagnosis. I couldn't believe b/c post menopausal; thought I'd dodged the bullet when I sailed through menopause getting clean mammo after clean mammo.

     You are so generous to put so much time into responding, again, I really appreciate it and plan to talk to my onc about testing armed with new understanding.

    C

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  • Mary22
    Mary22 Member Posts: 779
    edited July 2009

    Hello ladies I am new to this board. I just tested + for BRCA2. My mother died in 1977 at the age of 29 from ovarian cancer. There is also alot of cancer on my father's side of the family. In reading the literature givne to me today, I discovered another gene mutation(from FORCE facing Our Risk of Cancer Empowered). In reading the posts I noticed many were - for BRCA, however there is something known as Cowden Syndrome(it is inherited and caused by PTEN gene mutation). It links some unrelated cancer's together. BC, thyroid, uterine, pancreatic,polyps, lipomas(fatty lumps),fibrcystic breast changes. Families that have these cancers and test -BRCA should maybe be tested for PTEN mutation. This information can be found FORCE Volume 4 Issue 2 Spring 2008. Or you can go online to www.facingourrisk.org, or you can call 866-288-RISK. They are located in Tampa FL and have been around for 10years. I did a little research and found their website to be confusing(but I am computer illiterate) I just received this information today, so have not had much time to really look at the website.

    I hope this helps somebody, anybody!!!!!!

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  • LISAMG
    LISAMG Member Posts: 639
    edited July 2009

    Hi Mary & others,

    Sorry to hear about your BRCA2 mutation, but glad you found FORCE, a 10 yr old organization devoted to increasing awareness for families with a hereditary pre-disposition to breast/ovarian cancers. I have belonged to FORCE for 3 yrs now and we are an amazing community. The support and women I have met are immeasurable. We have local outreach programs all over the country, quarterly newletters, messageboards, hotline for help, and an annual 2 day conference held each year in Florida. I am also the outreach coordinator for Long Island and you may reach me anytime thru FORCE email for assistance. I can connect you with other outreach coordinators as well. Breastcancer. org is amazing and I just recently found myself here too.

    Please visit the messageboards of FORCE where you will find lots of BRCA positive women.. Best wishes to you.

    Lisag@facingourrisk.org 

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  • Mutd
    Mutd Member Posts: 148
    edited July 2009

    Cbm, just noticed this on faceingourrisk.org forums. Staining breast cancer tissue for mismatch repair proteins (which is what exactly the same kind of analysis as with your sister's endometrial cancer tissue) has just been used to link breast cancer to Lynch syndrome. Some additional details on the morphology of these breast tumors, too.

    http://www.facingourrisk.org/messageboard/viewtopic.php?t=32396

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