Genetic counseling..is it worth it?

[Kristen]

I have wondered around the internet looking into genetic factors. I understand some of it and was wondering if anyone out there has seen a genetic counselor and if it was worth the time and money?

My mom's sister had ovarian cancer and died before she was 50 and her daughter had bc, 10 years ago and my grandmothers sister had bc at some point in her life, she never told anyone. We only knew she had a masectomy when she died from the autopsy report.
I'm getting to the question. If it runs from aunt to neice, (her daughter, I am not sure about) my understanding is it could be a gene (Bracha 1 or 2) which is only in 10% of the cases. Does the DNA instruct the type of BC. ie: HER2 or ER/PR+? Or is that just a chance, like any women is at risk. Since my cousin had it 10 almost 11 years ago, they probably didn't test for HER2.

I also have 3 second cousins (2 different families) that have ATM (ataxia, less than 1% of the population has this gene) and even though no studies were done, they would consider you at a higher risk for other cancers, such as BC, colon, ovarian etc.

With these predispositions is it worth it? Do they just tell you statistics? Since my children are second cousins, I worry about them. Any ideas would be welcome. thank you. k

[celina]

Kristen,
I sought the advice of a genetic counsellor this past summer. I have two sister, both with breast cancer. My oldest sister has been NED for 14 years. My other sister is in the midst of battling it. Both were approx. my age when diagnosed. (39 & 40)
The counselor recommended that the first person diagnosed should be tested for the gene mutation. It came back negative..which doesn't mean that I don't have it, nor my other sister. It means that the chances are slimmer.
When I went to the High Risk Center, here in Montreal, the doctor said that because they only test two genes, she still considers me high risk. It sounds like the Brach. 1 & 2 would be the most common to show a mutation, but others are highly suspected as well.
I would have not done the testing, but my sistr insisted. I think if you do the testing, you are prepared to take measures to decrease your chances - tamoxifen, surgery, ect.
I'm o.k. with a thorough yearly examination, mammograghpy and ultrasound with monthly self-examinations.
Hope this helps...sure sounds like it's running deep in your family.

[Terri]

The fact that insurance companies can withhold insurance is a scary thing. I considered being tested, but all I have is a grandmother with breast cancer, and when I found out that my daughters would likely be denied insurance if positive, I decided not to. But what a decision to have to make.

[Shannon]

Hello!

I wanted to advise you about some things i found about Genetic Testing... I was diagnosed at 33. I am still in treatment and have many aunts and cousins that have been diagnosed and have survived and some have past. My thoughts were not about how I got it, but to educate and do what I can for my female relatives... so I took the first step to testing.

I live in California and have Kaiser. I found the introductory class to genetic testing very interesting. Then the WAMMIE... the testing would be shared with the medical community to the point, I would not be able to get medical coverage unless it was within a group plan (with a company) and life insurance policies would be terminated and very difficult to get if you test positive for a cancer gene. Well, I already have cancer, so it is already going to be difficult to get independant insurance, but if I was one who didnt have cancer, and then tested positive, this could impact many in my family.
If there is a class offered before you begin the process you should go to it. Many people can not hamdle a diagnosis of being a gene carrier. I have found it is better to educate my family on detection with self exam and being vigulent on doctors visits... I hope this helps. It is only my opinion.

Shan