Is her2 breast cancer hereditary

MichelleMoon · 11-03-2006, 01:08 PM

Seven years ago when I had genetic testing, counseling was a mandatory aspect of the process. If it isn't now, you should insist on a lengthy conversation with someone specializing in oncology genetics (I had my testing at Univ. of Chicago).

My 2 cents on preventative measure: I learned after my BC about my status. I opted not to pursue a prophylactic mastectomy on the other side, but I'm monitored very closely with MRIs and mamms. I felt the chance of catching it early in the breast was pretty good and didn't want another surgery, emotional drain, etc. I personally feel keeping the ovaries is much riskier. The testing methods aren't reliable. I am monitored with ultrasounds and CA-125 blood tests. I had full intention of yanking those things out (I'm finished with my family) when I turned 40. Low and behold on my 40th b-day I learned about my lung mets. So...I'm dealing with that for now.

Best of luck in your decisions,

Michelle

rinaina · 11-03-2006, 01:13 PM

sorry to hear about your lung mets. this her2 breast cancer really bites doesn't it? thanks for your response to my post. so much to think about. you mentioned that you went to u of chicago to consult with onc genetic specialist. are you in chicago area. i live in northshore suburb. may i ask who your specialist was at u of chicago?

MichelleMoon · 11-03-2006, 01:14 PM

Oh, and to my knowledge BRCA 1, 2 and HER2neu status are all separate issues. They can all act independently of one another (and do!). Your BRCA 1/2 status never changes...it's in your genes. If you have the mutation, it was given to you be a parent (not the kind of inheritence I WANTED!!!) and you can pass it to your kids...yuck for me.

My mets biopsy came back HER2 positive, although my original tumor was triple negative. That said, I am glad to have herceptin as a treatment option now.

Michelle

MichelleMoon · 11-03-2006, 01:16 PM

I'm in Naperville, but I received my initial treatment in '99 at Univ of Chicago. I received AWESOME care by Dr. Philip Hoffman (oncology). I forget the names of all the genetic counselors, but Dr. Olepodi is the main genetic doctor. It was worth the hellish drive. Too bad my insurance doesn't carry U of C any longer.

Good Luck!!!

karenann · 11-03-2006, 01:56 PM

When I was tested for the BRCA 1 and BRCA 2, I was told that with this gene mutation you usually find that the cancer is triple negative and premenopausal. I am sure there are exceptions to the rule.

Karen

rinaina · 11-03-2006, 02:17 PM

Isn't that just like insurance? As soon as you find and like the doctors and hospitals, they switch their coverage. Sorry to hear that MicheleMoon. Karen, I am er/pr negative but her2 positive so I am interested to see what my gene test results will be. Not too sure what I will do with the info but it will be interesting to see.

panicked911 · 11-03-2006, 02:20 PM

I too was told that her2 is not hereditary ( Brac 1/2 ) however with that said for those of us who are triple positive and strongly so ( er/pr) all bets are off on that one and a gene test should be done.
If it comes back positive for braca 1/2 then taking the ovaries out is a "no brainer" to use the oncs language. If it does not come back positvie then the choice is not so clear.
these are the exact isues i am wrestling with now.
Also, there is only one lab in the country ( out in colorado, I beleive ) so it does ot matter who draws the blood - however the counselig which is mandatory does matter.
there are alos other inplications to thik about when doing the testing. if it comes back positive -life insurance? medical insurance etc.

Susanne

Becky · 11-03-2006, 05:41 PM

I went to ASCO with our site and attended a genetics seminar. BRCA1 women tend to almost always be triple negative. BRCA 2 is 50:50 triple negative or hormone positive. It is very, very rare for those who are Her2+ to be BRCA 1 or 2. The triple negatives are high on both lists.

I was tested and tested for no mutations.

Kind regards

Becky

SusanV · 11-03-2006, 06:32 PM

Hello to all,

Just received my BRAC 1 & 2 results about a week ago. The lab, (which is the only one that completes this test) is in UTAH. I met with a genetic expert, before the blood draw, and had to go in person for more conversation with the same genetic expert to receive the results. I was negative for the gene by the way... In my mind, this still offers no guarantees even for my family. Modern day science can only test for the genes that they are aware of.. There are plenty of genetic mutations that they don't know about yet. There is however an enhanced test that Myriad lab (The lab in Utah) provides now standard for all blood samples sent after August 2006. My blood draw was in Sept, and was subject to this latest testing. It is a more complete look for the BRAC 1 & 2.

Love to All