Listing our BRCA mutations - maybe we can find matches

georgiagator - I don't know how many genetic counselors are in your mother's area. But it might be possible to have her doctor send the referral to another office with genetic counselors. Usually doctors like to stay in their own medical group because it is easier but they should be able to send a referral to a different office and maybe one with less wait times. I have done this before with medical providers. Just a thought.

Thanks anneoftheforest. My 84 year old mom lives in a rural area about an hour from Tampa. Maybe my sister will help her locate a different oncologist at a different cancer center other than Moffitt. I am having PBM surgery with reconstruction a week from tomorrow in Atlanta, otherwise I would get down there and help out.

Thanks anneoftheforest. I'll have to keep reminding myself how lucky I am to have avoided full blown ovarian cancer, especially when I am not feeling my best after my upcoming surgery. It truly is a blessing.

my particular variant is not classified by a very big lab either . so hopefully in the future someone will have information about it .

I also have 8525delC. Irish family, original immigrant names Connelly and Murphy from the West of Ireland

Hi. I also have the 8525delC mutation. It comes from my dad's family--two of his sisters died of OVCA, another had BRCA (treated successfully) and died of pancreatic cancer; one brother died of liver cancer, another had bowel cancer. His dad died of"stomach" cancer, which may have been almost any abdominal cancer--they lived in rural Sask. Canada & it was the 50s. Dad died of lung cancer, but he was a smoker so who knows? My sister died of ovarian cancer and I also have OVCA, though am luckier than my sister--12 years out, and many chemos, 4 surgeries later am still alive and enjoying an unexpected remission (sort of--CA-`125 rising but CT scans good). Two of four kids negative, two not tested yet. Irish family names are Murphy and Connelly--I haven't gone back farther than that, my paternal great-grandparents.

I have BRCA2 ...5104delAA.  I'm 58 years old and just found out last month, so I'm still fact finding.  Any advice?

Tbabe- sorry you have become a member of the brca club... But you are on the right track. I was Dx BRCA2+ in June of this year and just had my mastectomy and BSO in November. I will be 50 in a couple of months.

My advice is if you haven't already, go to the FORCE website. It is totally about BRCA and you will find a wealth of information there. The BCO site we are on is a great place for support. There is also a site called HysterSisters where you will find a lot of support for gynecological issues. Since I had surgery and went into surgical menopause it has been an invaluable source of support for me. Just take your time, educate, ask as many questions as you need to - and know you're not alone. (Hugs)

Are any of you BRCA women aware if the genetic component causes cancer to be more aggressive. I had stage 4 OVCA and now metastatic Breast cancer in my liver...please let me know I do not seem to be doing very well. 2 years from mets dx...

Bestock - I've read different articles on BRCA+ cancers and their aggressiveness. From what I have read BRCA+ cancers are not more aggressive. However BRCA1 cancers can often be triple negative which can be more aggressive especially if left untreated. I know they are constantly doing research so someone else might have more current research.

I'm sorry you are struggling right now. You have been through so much. God bless you.

If anyone understands frameshift mutations and how to read the results, please reply. I am having a hard time remembering all the jargon given at the time I was found to be BRCA2+. My mother is currently being tested for the gene, and I would like to be helpful. Thanks a bunch for your help

My sister and I both are IVS5-11T>G. Thank you very much! We don't know much about our family tree, so this helps me make decisions for my family. Especially my daughter who is 22.

I have the variant c.5937C>G also known as p.Ser1979Arg in exon 11 . My biological mother died of ovarian cancer early. Today my doctor says we should wait until I hit menopause then remove my ovaries. Removal of my uterus is still up in the air . Hoping we might have a few more pieces of information before then. Meanwhile , we watch for 2 years how I am doing. Also, has anyone ever experienced a lump on the breast bone ? I have one under my right breast which does not show up on my mammo but can be felt . I was told today it is not a problem since it is not in my breast . Thanks.

Hello Jean143,

The numbers tell specifically where on the BRCA2 gene the mutation lies. There are many different sets of numbers. As more mutations are cataloged by researchers then they can see what kind of cancers people with these different mutations have.

Now that you know you are BRCA2 you will mostly likely be screened every six months for breast and ovarian cancer as you are high risk. Do you have a family history of cancer? I was just curious why the doctors had you take the genetic test.

Have you been to the FORCE website www.facingourrisk.org? It is a site devoted to BRCA. There is a good forum on there as well where you can meet others as well as info on local groups to meet others face to face. I'm BRCA2+ as well and have found that website very helpful in researching my risks and my surgery options in reducing my risks.

I hope this helps a bit.

Jean143 - As far as I know there isn't any site that shows that info yet. There are some mutations they have more info on than others. I called Myriad and I am the only one with my mutation in their database. Your genetic counselor might have more info on your specific mutation but there are many genes that come into play in each of our bodies so it is far from an exact science. There is also a thread on the FORCE forum where you can list your mutation and search for it as well.

I hope your appointment goes well.