Is her2 breast cancer hereditary

rinaina · 11-03-2006, 10:47 AM

I thought my onc mentioned to me that Her2 breast cancer is not something that can be passed down to anyone in the family. Is this true? I am still having the gene testing done for BRAC I & II so I am confused. If the gene test should come back positive does that mean I carry the gene mutation that predisposes me to both breast and ovarian cancer and then what....what do you do with that info? Wondering how many of you have then opted to do a double mastectomy and hysterectomy as a precaution due to a positive gene test. Whoa...a lot to think about if test comes back positive huh?

rinaina · 11-03-2006, 10:49 AM

Wondering why the surgeon or onc didn't order this gene test earlier on when I was first diagnosed. I am now done with both chemo and rads and just getting herceptin now for a full year.

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

rinaina · 11-03-2006, 07:34 PM

Then am I to believe that being er/pr- but her2+ means that I will not test positive for BRAC I and II? If that is the case, then my her2+ cannot be hereditary to other members of my family?

penelope · 11-03-2006, 07:42 PM

that is what I have been told.

tousled1 · 11-03-2006, 08:49 PM

Susan,

Glad you tested negative for BRCAI and II. I had the blood drawn for the BRCA testing but have not received the results back yet. There is a very strong history of both breast and ovarian cancer in my family. Even before my oncologist and I discussed the genetic testing she told me that since I have breast cancer the risk of my daughters getting cancer is automatically higher. She recommended that my 2 daughters begin getting mammograms at age 30. My oldest daughter (31) got her first mammo and got the call from her primary care physican that she had to go back and get a diagnostic mammo. Oh how the fear set in!! Thank God it turned out to be only a cyst. My other daughter is 30 and she has not scheduled her mammo yet even though I'm pushing her. I don't want my daughter's to have to go through what I have with this dreadful disease. I pray they never will.

Soccermom · 11-03-2006, 09:27 PM

Dear Rinaina,
As stated previously BRCA and Her2 are completely different "animals". I do know a few who were both BRCA + and Her2+ (can't remember er pr status). In fact one of those fine ladies sent me to this site.As far as I know Her2 hasnot been deemed "hereditary".My Mom was not Her2+.
The BEST advice that i can give you would be,as the others have stated, is to see a certified genetics counselor, here is the link to do a lookup for one in your neck of the woods...
http://www.nsgc.org/

sabpri · 11-03-2006, 10:37 PM

I am always the one to bust the "norms", but I had 2 Tumors, one was ER/PR+ and Her2 Neg, the other was Triple Negative, but contained a Subpopulation that was Her2+, Amplified. No one really knew what bucket to put that one in, but it did have Her2+ in it. I also tested positive for BRCA2, which I was TOTALLY shocked over. No one in my family has had BC. My mom and her sister never have, and neither has my grandmas or any of their 8 sisters! We were shocked when my mom tested BRCA2+ (she opted to test when I tested + and then they tested my dad thinking it was him since he had cancer on his side of the family). When his came back negative, we knew it was probably her. She is in her 60's and has never had any cancer.

I am very scared for my little girls, but they are only 3 and 5, so I pray to God things will be much more advanced (even a cure!) by the time they grow up. At least they will be "on alert" and not unprepared like me.

I did have ooph in March of this year due to hormone+ and BRCA status.

Natalie

rinaina · 11-04-2006, 04:17 PM

Thanks Soccermom for the lead. Was able to find quite a few at both hospitals I am dealing with. I appreciate your help.

Soccermom · 11-04-2006, 06:30 PM

Dear Rinaina,
I am so glad that I could help! If you'd like to do some reading on the subject of BRCA mutations please go to ...www.facingourrisk.org
FORCE has a reading room where one has access to much information from accredited sources.
Let me know how it goes for you.CGC's (Certified Genetic Counselors), are in my estimation,some of the kindest folks. They are the true masters of explaining the implications of testing positive/inconclusive and/or negative for the BRCA mutations.

Its a rough road but like most here you have probably already been through a lot.
Let me know if there is anything else I can help with...and you can help clue me in on Her2!

Dear ((((Natalie))))))))),
I understand your fears
regarding your children. Dr Andrew Tutt (a Bristish researcher/Dr.) is presently conducting trials in the U.K. on a BRCA "vaccine". He spoke at the FORCE conference which was held in Feb. of this year. If you want to you see his presentation via webcast at the FORCE website.
I pray everyday for a cure for ALL of us!

Marcia

Marcia

MJo · 11-05-2006, 08:38 AM

sabpri:
Your post interested me. I had five maternal great aunts who died of breast cancer in their 40s. The doctor told me I probably don't have the BRCA gene because cancer skipped my mother's generation and I'm the first of my generation to get it. But your experience tells me that might not be so. It's hard to find family history due to my mother and aunt's faulty memories (they are in their 80s) and the fear and denial that still lingers about this disease. I know my great aunts had radical mastectomies back in the 1950s and early 1960s but the cancer spread quickly anyway. Sounds like Her2. I believe that other hereditary genes besides BRCA will be found relating to breast cancer. Possibly there is a hereditary factor in Her 2. We just don't know yet.

Soccermom · 11-05-2006, 02:19 PM

Dear MJo,
I only have a minute but wanted to expalin something re: BRCA. IF you have a mutation in the family you have a 50% chance of inheriting it. If for some reason both parents have a BRCA mutation that increases the odds to 75% (if they are different mutations). The BRCA genetic mutations follow
"autosomal dominant" patern of inheritance which means it does not "skip" a generation. Not everyone that carries a mutation of one of the BRCA genes goes on to develope cancer. In fact studies revealed that the incidence of cancer in BRCA+ men and women showed a marked increase in occurence in those born after 1950.
. The theory
is that because we have added so many pollutants, (fertilizer,pesticides etc) to our environment a SECOND incident to the already mutated gene "triggers /
allows" the cancer to develope.
I am a little rusty on my stats, but I think you get the gist of it.

Hope this was helpful,
Marcia