HER2 Support Group Forums - View Single Post - Genetic Counseling appt./Which tests to ask for?

AlaskaAngel · 11-19-2008, 11:19 AM

Hi Vic and StephN,

Your question is interesting! My genetic counseling and testing was done some time ago and so I'm not sure what tests the counselors would deal with now other than just BRCA1 and BRCA2, which is all they dealt with when I was being counseled and tested.

Here are 2 past posts I participated in that give some info about BRCA testing. (The first link no longer connects with anything, unfortunately, but at the time I quoted part of what was in it so at least that is still available for consideration although the connection may have been removed because they have learned otherwise since then.)

http://www.cancerbacup.org.uk/QAs/Tr...s/QAs/83663880

"The current research shows that women with the BRAC1 and BRAC2 mutations are less likely to be HER2 positive than women who have what is known as sporadic breast cancer (breast cancer that is not thought to be caused by a faulty gene). Only about 1 in 50 women with a BRCA gene mutation is likely to have an HER2 positive tumour, whereas between 1 in 3 to 1 in 5 women with sporadic breast cancer will have high HER2 levels. So Herceptin is less likely to be helpful for those women who have a BRCA1 or BRCA2 gene change."

http://her2support.org/vbulletin/showthread.php?t=30903&highlight=brca

Debbie,

Because of my broad family history (including ovarian cancer), when I searched for and found a clinical trial for early detection, as part of that clinical trial I was offered free genetic counseling. Even though the first counselor generally advised me that I should have BRCA testing I wasn't convinced, so I put it off. Three years later I saw an onc who specialized in both bc and genetics, and she too felt I should be tested for BRCA. I raised the same question you did about HER2, since I think it is cheaper to have just one of the 2 tested. Both she and the second genetics counselor she referred me to felt both should be tested, even though it is far less common for HER2s to be BRCA1 positive. The other comment I have to offer here is that I learned that it is possible for a person to be both BRCA1 and BRCA2 positive (although unlikely).

I tested negative, but the results by Myriad state that as newer "BRCA's" are discovered they would notify me of any relevance to me. I would love to hear it if anyone has been tested negative and has ever been contacted by Myriad subsequently about a newer possible positive result... After all, it is a $3,000 test in the US that as I understand it is free (or close to it) in Europe due to differences in the laws here and over there.

AlaskaAngel

P.S. Has anyone here had testing recently who could help answer whether or not genetic counseling currently includes such things as counseling for PTEN, or testing such things as AIB1 level, or testing whether or not one is a tamoxifen metabolizer, etc.?

11-19-2008, 11:19 AM	#4
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Catching up Hi Vic and StephN, Your question is interesting! My genetic counseling and testing was done some time ago and so I'm not sure what tests the counselors would deal with now other than just BRCA1 and BRCA2, which is all they dealt with when I was being counseled and tested. Here are 2 past posts I participated in that give some info about BRCA testing. (The first link no longer connects with anything, unfortunately, but at the time I quoted part of what was in it so at least that is still available for consideration although the connection may have been removed because they have learned otherwise since then.) http://www.cancerbacup.org.uk/QAs/Tr...s/QAs/83663880 "The current research shows that women with the BRAC1 and BRAC2 mutations are less likely to be HER2 positive than women who have what is known as sporadic breast cancer (breast cancer that is not thought to be caused by a faulty gene). Only about 1 in 50 women with a BRCA gene mutation is likely to have an HER2 positive tumour, whereas between 1 in 3 to 1 in 5 women with sporadic breast cancer will have high HER2 levels. So Herceptin is less likely to be helpful for those women who have a BRCA1 or BRCA2 gene change." http://her2support.org/vbulletin/showthread.php?t=30903&highlight=brca Debbie, Because of my broad family history (including ovarian cancer), when I searched for and found a clinical trial for early detection, as part of that clinical trial I was offered free genetic counseling. Even though the first counselor generally advised me that I should have BRCA testing I wasn't convinced, so I put it off. Three years later I saw an onc who specialized in both bc and genetics, and she too felt I should be tested for BRCA. I raised the same question you did about HER2, since I think it is cheaper to have just one of the 2 tested. Both she and the second genetics counselor she referred me to felt both should be tested, even though it is far less common for HER2s to be BRCA1 positive. The other comment I have to offer here is that I learned that it is possible for a person to be both BRCA1 and BRCA2 positive (although unlikely). I tested negative, but the results by Myriad state that as newer "BRCA's" are discovered they would notify me of any relevance to me. I would love to hear it if anyone has been tested negative and has ever been contacted by Myriad subsequently about a newer possible positive result... After all, it is a $3,000 test in the US that as I understand it is free (or close to it) in Europe due to differences in the laws here and over there. AlaskaAngel P.S. Has anyone here had testing recently who could help answer whether or not genetic counseling currently includes such things as counseling for PTEN, or testing such things as AIB1 level, or testing whether or not one is a tamoxifen metabolizer, etc.? Last edited by AlaskaAngel; 11-19-2008 at 11:22 AM.. Reason: to add P.S.