Genetic Testing

SusanV · 08-31-2006, 07:59 AM

Hello Friends,

Lots of things going on...First I got all my hair cut off in preparation for my first chemo treatment on Tuesday 9-5-06. I donated four 10" ponytails to Locks of Love through the American Cancer Society. It takes me a full 3 minutes to do my hair now. 2 minutes to blow dry and 1 minute to apply hair gel. What a change from the old hairdo!

Anyway, looking ahead, I am having Genetic testing done on September 25th. Thanks to all of you I really feel like I have a good handle on understanding my DX and Her 2, but I haven't seen or read much about Genetic Testing. I do know that the onc mentioned that if I do test positve I will want to consider options such as mastectomy and having my ovaries removed. I am at the "Whatever it takes" stage of thinking about this.

Do any of you have experience with either positve or negative Genetic Test results? Can you share any of your thoughts or knowledge?

Love to All

Becky · 08-31-2006, 08:24 AM

I had genetic testing and was negative for BRCA 1 & 2. No other strange things noted.

For the record, Her 2+ bc is not associated with BRCA 1 or 2. BRCA 1 positive tends to be associated with triple negative (neg ER, neg PR, neg Her2). BRCA 2 positives are triple negative or mildly hormone positive (but also not Her 2). However, it is not out of the question to test genetically positive if you are Her2+, just rarer.

Also, they only test for the genes they know, not the ones they don't know about yet.

Kind regards

Becky

Colleen007 · 08-31-2006, 08:59 AM

I had genetic testing done due to my age at diagnosis (38) and was negative for the BRCA1 and BRCA2 genes. I was almost hoping they'd be positive so that at least I'd have an explanation as to how I got cancer. Like you, I was already planning in my mind that if either came back positive, I'd have my ovaries removed and have a double mastectomy. Now, I am glad that they came back negative as I have an infant at home (as well as a 6 year old), and would not have wanted to have to worry about taking care of them and recovering from surgery at the same time.

Since I am a new member (and this is my very first post!), I'm not sure what the rules are for posting internet URL's, but if you go to the Nat'l Institute of Health website (which I'm sure you can find using any search engine), and search the site for "breast cancer genetic testing", they have quite a bit of info that you can read to find out more.

SusanV · 09-01-2006, 07:29 AM

Thank you both for the good information. I didn't know about the higher likely hood of a positive test with Her2- and ER/PR-

Also that website was very helpful in understanding what is involved in the testing.

I appreciate your help

tousled1 · 09-01-2006, 03:00 PM

Susan,

I have a very strong history of cancer on both my mother's side and my father's. I asked my oncologist about genetic testing since I have 2 grown daughters. Her reply was that HER2 breast cancer is rarely caused by genetics. She did say that she'd do the genetic testing if I wanted it.

kim · 09-01-2006, 04:05 PM

Susan,

I had the genetic testing done after I was diagnosed. I was negative for both, but definitely would have had my ovaries also if I was pos.

My experience was you had a counseling session first where they discuss the genes in general, what it means if you are pos or neg and your family history. Then you decide if you want to do the blood work. It takes a little while for the results and I had to schedule an appt to get them, they would not tell me over the phone.

The testing is very expensive. I don't know if things have changed but at the time I had mine done insurance did not always cover it. They got pre-approval from my insurance co before I did the test. You might want to look into this to be sure if you have not already.

Hope this helps,
Kim

PS- what a great thing doing locks of love. I cut my hair off before chemo too, but mine was not that long.