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Any BRCA Variance Result Gals?

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weekender09 View Drop Down
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    Posted: Apr 19 2013 at 6:08pm
Did the testing with the genetic counselor 70% sure I would test positive for BRCA.  Aunt with breast cancer pre 50/grandmother with ovarian cancer.   My results came back with a variance of uncertain significance on the BRCA2 gene.  Anyone else have the variance result?  What surgeries did you decide to do? 

Barb
02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13
BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :)
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2013 at 8:09am
Dear Barb,

sorry for the delay in responding. I just saw this for the first time..

I have had a number of experiences over the years with women with VUS. It is a difficult test result because you don't have the certainty of a positive result. 

The medical professionals I respect, oncologists-both Breast Medical Oncologists, Gynecologic Oncologists and Certified Genetic Counselors/Medical Geneticists seem to feel that in cases like yours where there is a profound family history of breast/ovarian cancer that the family history is extremely important and risk-reducing surgery recommendations are based on that history. I even had a medical geneticist tell me that he had one woman test BRCA negative and she had a sister, her mother and an aunt (mother's sister) all will early-onset ovarian cancer and he recommended the woman have prophylactic oophorectomies. "We don't know what it is, but there is something in this woman's family causing ovarian cancer and we must pay attention to that."

Barb, as you know I am not a medical professional and am not telling you to have surgery. Just passing along some of the experiences I have had and information that medical professionals have shared with me. 

If you haven't already I would try to see a BRCA savvy geneticist/Certified Genetic Counselor and discuss the situation with them. Ovarian cancer is a separate risk to breast cancer and is very hard to detect in an Early Stage. I have seen figures that up to 70-80% of all ovarian cancer is first diagnosed as late stage disease-Stage III/IV with a very poor life expectancy. My grandmother died of ovarian cancer in 1946 when she was 47 years old and I am afraid that even with various screening tools..it has been shown that most of them, including CA-125, are inaccurate.


It has also been shown in studies that a BRCA+ woman when she removes her ovaries prophylactically also reduces her breast cancer risk substantially, maybe as much as 50%. 

I am sending you my contact information if you would like to talk. Also, once we talk I can give you the contact information for a friend of mine who is a nurse and agonized for years about what to do and finally had risk-reducing surgeries. She does not post on this board but she is a dear friend and maybe her experiences will be helpful to you? 

good luck to you!!!

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2013 at 1:14pm
Dear Barb,

I think Barb was scheduled for surgery this week so my intention is not to bother her but was wondering if there are any BRCA VUS women out there who would be interested in participating in a special eventthis Saturday in San Francisco. My apologies for such short notice.

Here is a link that explains what we are doing.

BACKGROUND ON FREE THE DATA: See attached document.  Additionally, here is a great story about the project: http://www.slate.com/blogs/future_tense/2013/06/25/free_the_data_project_seeks_to_collect_myriad_reports_on_breast_cancer_genes.html

I have a very dear friend, Joanna Rudnick, who is heavily involved in the Free The Data project. I will be participating along with about 10 BRCA+ women in the event Saturday but we really need a BRCA VUS woman, if possible.

Here is some more info from Genetic Alliance


If anyone would like to participate here is Joanna's contact info-


email...joannarudnick@gmail.com

If anyone can make it would be a great pleasure to see you Saturday.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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