HER2+ and BRCA mutations - 1 or 2?

[dlaxague]

Hi all,

Do you know of anyone who is BRCA1+ and HER2+? Of the few people with HER2+/BRCA+ cancers that I know, all have the BRCA2 mutation. If you don't want to post this information on a public list, you could simply say that you know a friend who is both BRCA1+ and HER2+. Or you could reply to me privately - my email is my username, @earthlink.net .

Thanks. I'm going to have this test done and am thinking of asking it to be done just for BRCA2. I realize that this is not a scientific way to go about this but the small research attempts that I've done have linked HER2+ only to BRCA2 (not 1). Myriad says otherwise.

Debbie Laxague

[AlaskaAngel]

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

[caya]

I recently had the test done here in Canada. It was "free" - covered under the universal health care system in Canada. I don't think they routinely test for it here unless there is strong family history or for the circumstances I have. They offered it to me because I was under 50, premenopausal and of Ashkenazi Jewish background at dx. No real family history of BC or ovarian, the odd distant cousin.

My oncologist firmly believed I would be negative (I am negative). Apparently it is rare to have a BRCA mutation and be Her2neu+. Of course there are exceptions, I know there are a few on this site who have both. I don't know if you can just test for the BRCA 2 - you can do just the 3 panel (the more basic test) and the comprehensive panel. They did the 3 panel on me because I had no real family history.

Good luck Debbie and let us know your results.

all the best
caya

[momdeeco]

I also have been tested for BRACA 1 & 2. My results were inconclusive. Has anyone else ever been tested and had resulted that were inconclusive. If so what was your treatment options?

[Kimberly Lewis]

I was positive even though my genetic counselor told me there was only a 15% chance I would be. I did it for my children - which is the best reason I know of. The test was mostly covered by my insurance but my daughter has had to fight to get hers to cover it. No sucess yet...

I would be happy to answer any questions about my experience.

[Debra]

My results should be available within the next week so I will share when they come in.

[blessingsabound]

Hello,
I'm new to this board and will figure out how to add my info later, but wanted to reply to this post first.

I am Her2+ and BRCA1 positive. I haven't ran across anyone else like me, but would love to know of others. I'm ER/PR+ as well. I was d/x in Feb. 07 with DCIS, had mastectomy, found microscopic amount of invasive cancer. Oncologist wanted me to get BRCA tested because of my young age (36 at d/x). Had 4 great aunts that had BC, but no other family history. Test came back with BRCA1. My 2 sisters were tested, and my younger sister has the BRCA1 mutation as well.

Marlena

[harrie]

Welcome Blessingsabound!
Wow, that is amazing that neither of your parents had a history of cancer.
I am BRCA 2 and my mom had br ca and her dad died of pancreatic cancer. My daughter tested neg as well as both my sisters, neg.
Maryanne

[swanky]

Hi all! I guess I am a rarity? Lucky me! I am BRCA 1+ and HER 2+ ...BUT my FSH score was only 2.1. Initially they thought triple negative, but any FSH over a 2 is considered positve.

[harrie]

Swanky, sounds like you are very special!
Harrie

[Sandy in Silicon Valley]

Hi, Debbie -

Thanks for posting this poll.

Yes, I was in a double-blind genetic counseling/testing research project 10 years ago, before I knew anything about my HER-2/neu status, and I tested positive for carrying one of the "Heritage Panel" (Ashkenazic Jewish heritage) mutations on the BRCA1 chromosome.

Then, some 5-6 years later, when dx'd with bcmets, the bc biopsy indicated the majority of cancer cells were strongly HER-2/neu expressive.

There's been a discussion on another support group list where I participate, that most HER-2/neu+++ patients with bc are triple negative (ER-/PR-/HER-2/neu not overexpressed). If that is truly the case, I'm one of the outliers in the stats. And I must say that in this decade of Herceptin, which has been highly effective for me (neck-down) for going-on 5 years, I'm really glad to have that option!

(((hugs)))
Sandy in Silicon Valley

[suzan w]

bumping this back up because it pertains to me (he he he)/ just tested + for BRCA 2 and am interested in the statistics...I am, so far, the ONLY person in my family to get cancer...of any kind!

[Chelee]

Hi Suzan, Like you I am the only one in my family to have cancer. Right after I finished chemo I requested to be tested for the BRCA 1 & 2 gene and I have been denied this each & every time I asked for it. I got a ear full from my oncologist why it was not necessary in my case.

I still want to be tested. I don't have any bio childern so I can't use that as a reason...but I feel it's my right to know. How did you manage to get your onc to finally ok it for you? (Any tips would be appreciated.)

Chelee

[Kimberly Lewis]

I contacted a genetic counselor directly and once I was assured that I would be covered by my insurance went ahead and did the test. The counselor thought I had a 15 - 20% chance of being positive. I was positive for BRCA 2 and so was my daughter. My oncologist was shocked, and surprised when he received the results of the test. He never would have reccomended it and my daughter wouldn't be getting the advanced screening that she gets now without my getting that test done. Thats my 2 cents on the issue!

[Chelee]

Hi Kimberly, You must have a PPO...since I have a HMO I have to go through either my primary or onc too get a authorization to see a genetic counselor. I can't see any specialist without one...I just played heck seeing a dietician. I finally got my primary to ok that. (Frustrating.)

I could pay out of my own pocket if I had too...but I wish my onc would just at least put a request in for one and see if my insurance ok's it or not?

I can only imagine how shocked your onc was when it came back positive. Its a good thing you took it upon yourself and got tested because now your daughter can stay on top of things. Its a shame we have to be so pro-active all the time...but whatever works.

Chelee

[suzan w]

I called my insurance co. to see if they would cover the test (they did) and I then went through my primary care physician, not my oncologist, who pooh-poohed the idea... Like Kimberly, I pushed for it...I have 2 boys...but BRCA 2 has a direct impact on male breast cancer...not to mention my grandchildren who also have a right to all the info we can get... xo Suzan

[harrie]

Unless you absolutely need to go through your doctor because you are HMO, I highly recommend going straight to a certified genetic counsellor.
Just prior to being tested, I was not that motivated to be tested for the gene. I assumed I was being monitered as close as I could be due to my history (wrong!) and I did assume I probably did have the gene. But there is a difference being monitered as a BRCA carrier and one that is not. Also, it influenced the type of treatment I chose during this last episode of invasive DCIS knowing I was BRCA2+.

[Jackie07]

[**National Geographic Channel has a special program on the migration of genes** Sunday at 8 pm. (ET?) - See Harrie's note at the end of this posting.]

Dug up this thread because I had found out that I have a BRCA1 'variant with unknown significance'. After some digging and message exchanges with Harrie and Marcia, I thought I would post the following links on the board. Then I realized there's an existing thread already!

'Legend' has it that the 10 lost tribes went East and reached Asia - possibly then migrated to the Americas and evolved into North American Indians...

In tracing the source of my BRCA1 genes (even though just a 'variant'), I have encountered some interesting information. Back in high school when I was reading Chinese history about the 'Jin' religion, I never did realize (lost in translation!) it was referring to Judaism.
(The imprint off the monument recording the history of the religion in China had been preserved and was printed on our text book explained as 'Nestorianism' ('fire worshipper'in Chinese translation - [because of the 'menorah'?])which, according to the Encyclopedia, has something to do with the Jacobites.)

The two links below explain in detail about a Jewish community that existed in China since at least the 12th Century. My Mother's last name is 'Li' (or 'Lee') which is one of the seven Chinese surnames given to the Jewish merchants residing in China. My Father's family resided in an isolated region where the 'Chiang' minority reside. I found an article talking about how the 'Chiang' people practise their religous rituals in a very similar way to Judaism. Coincidentally, both of my grandfathers were travelling merchants (My Mother's father owned a department store in the Capital of Yun-nan Province and travelled often to purchase goods from other provinces. My Father's father was only staying home several months a year) They knew each other well and that's how my Father ended up staying at my Mother's house while he was attending high school during the Japanese invasion in WWII.

*****************

Hi Marcia,

How are you?

Found this link

http://www.haruth.com/AsiaKaifeng.html

off the webpage

Judaism 101 http://www.jewfaq.org/ashkseph.htm

Thought I would share with you.

I know you are probably too busy to reply. And that will be OK. :)

Jackie07

Jackie, the National Geographic channel is doing a segment on the migration of genes. I heard the commercial on that. It is either Aug 30 or 31. should be interesting.
Harrie

[penelope]

I have a large family history as well. I am third generation, but I tested negative for the genes. I think it is very rare to have Her2 and BRCA 1 or 2

[loricar3]

I had the test done as I mentioned to my breast surgeon that I was 100% Askenazi Jewish. My insurance (Aetna HMO Open Access) paid for the whole thing. I was willing to pay for it if they weren't. I was told that testing only 3 dna strings would cost around 300-400 dollars. The comprehensive test is thousands of dollars. I only did the smaller test. I came up negative for both BRC1 and BRC2. For me, I wanted to know as I couldn't understand (and still don't) why I have Breast Cancer. No female in my family has ever had it. No family history.

Best wishes.

[ElaineM]

I tested negative for both BRCA 1 and 2 in 1999, but I heard there has been more added to the BRCA testing since then. I am considering more genetic testing of various kinds and want to meet with a counselor, so I might ask about that.
Jackie your piece on Jewish migration is very interesting. I always believed there is more to migration than most people think there is. We (the people of the world) are probably more integrated and interconnected than we think we are.

[Jackie07]

Yip, anthropologists say we were all coming 'out of Africa'. Here's another link about the subject:

http://www.haruth.com/Asian_J.htm

and this one:

http://www.joyfulnoise.net/JoyChina2.html

[ElaineM]

I checked on the link to Japanese Jews. Interesting. Did you know there are stories about the messiah in the northern part of Honshu island in the Tohoku part of Japan? Interesting !! Those stories are probably too old to be from the early 1600's-1850's when Christians in Japan were mostly practicing their faith in secret. I think it is quite possible that Chinese jews and other jews could have migrated to Japan and other lands further away. Traveling by sea has probably been done for thosands of years.

[Jackie07]

Yes, in fact legend has it that the Emperor of Tang Dynasty (500 A.D.) sent a fleet to the East (Japan? Korea?) with 500 young boys and 500 young girls to look for 'everlasting pills' so the emperor could live forever.

Historians suspect these boys and girls stayed there and became part of the nations there.

[ElaineM]

That's interesting.
Maybe doctors, genetic counselors and scientists need to offer the BRCA testing to more people around the globe.

[darapond]

Hi,

Posting this WAY late ... but I'm also BRCA1+ and Her2+. Pretty unusual.

-Dara

Jan 07 - Diagnosed w/ 5x7cm tumors, left breast
1/23/07 - Started AC, dose dense x 4
3/07 - Taxol and Herceptin for 12 weeks
discovered BRCA1 in early June
6/19/07 - Bilateral Mastectomy, Oopherectomy
pCR
Herceptin until March 2008

[Kgregorin]

Hi
I am brca2+ and her2+. I just had a double mastectomy lymph nodes were clear. Stage 1 grade 3 tumor was 7mm. I will be meeting with the oncologist next week to discuss treatment. The surgeon mentioned that because of the size of the tumor I am on the borderline for treatment. Does anyone have any thoughts regarding that statement. I was hoping to avoid chemo.

[Neener]

Hi there -

Thought I'd chime in here because when my younger sister was diagnosed Stage IV Her2+ in 2011, I went to a genetic counselor to be tested. Both my sister and I tested negative for BRCA 1 and 2, and yet in January of this year, I was also diagnosed with Her2+ BC.

I'm sure that as genomic science advances, we'll see many, many more inherited links to BC. Until then, I'm living proof that testing negative is absolutely no guarantee that you're in a low-risk pool.

[Kgregorin]

Hi
I am new to this site. I am BRCA2+, HER2+, PR+. I am now recuperating from a double mastectomy. Tumor was 7mm. I have an appointment with the oncologist next Monday to discuss the possibility of chemo. Everything I have been reading leans towards yes to treatment. Do they just do herceptin or herceptin and something else. Sure would appreciate some feed back. Thanks

[jaykay]

Hi - sorry you are on this site but it is a great site with wonderful women and men!

I had Stage 1a bc 14 years ago (her2+,er+, pr-), lumpectomy, rads, anti-estrogen for 10 years (tamoxifen and femara). Herceptin/chemo was not recommended for early stage in 2000. I developed a new primary 12 years later - her2+, er+, pr_. Double mx, TCH x6 plus additional 11 Herceptin infusions, radiation and back on anti-estrogen.

I constantly wonder if chemo and Herceptin would have prevented the 2nd bc - I think so.

With your pathology plus the BRCA2+ - I'd go for whatever you can throw at the cancer now. That way, you know that you have done everything possible to fight the cancer

Best
Janis

[AlaskaAngel]

Dlaxague, thanks for starting this thread for those who happen to be both HER2 positive and BRCA positive. Did you decide to have the testing done yourself?

My results came back negative but inconclusive too, and Myriad stated on their report to me that if any future connections regarding my results were ever discovered by them, they would notify me. I have never received any further notification from them. Has anyone else here ever received any later notification from Myriad about more recent information in regard to their original results?

[Ceesun]

Yes, I did ....can elaborate if you want AA. Cathy

[AlaskaAngel]

Thanks for the response, Cathy. With me being now 12 years out from dx and tx but with no further info from Myriad, I just wondered whether Myriad actually meant what they said, or not.

I am a participant in breast cancer and ovarian cancer clinical trials that also try to connect the dots while trying to create a better marker for OVCA and bc patients, and hope some good will come of that.

AlaskaAngel

[Ceesun]

AA, Yes, I was tested in 2003 and was negative for brca1 and a variant for brca2, they said that the variant was most likely not problematic, but hoped to reclassify. In the summer of 2009, while in the parking lot of Home Depot plant shopping, I got a call from them saying they were now certain the variant was harmless and I was brca2 negative. I was so glad for my daughters sake as I know my bc was caused by radiation as an infant to the thymus gland. They also sent a letter to me and my oncologist with those results. Cathy

[AlaskaAngel]

Cathy, it sounds like they do follow through. I'm glad that you no longer have to be concerned about the possibility for your family members or yourself, and that Myriad gave you that reassurance when they found out.