New Genetic Testing

Cathya · 01-13-2018, 02:29 PM

Hi all;

I finally saw an oncologist for my ovarian cancer who actually knows about breast cancer. My ca125 numbers have been going up. I had an abdominal CT and it was clear expect I have a gall stone which may be causing it to raise....I pray so. In any case he told me he wants me to get genetically tested again. He said that he is 100% convinced that I am BRCA positive and when I was tested I had only a VUS. He said that testing is much more extensive and better now than even 2 or 3 years ago so referred me back. He said there is a new (or several can't remember) treatment for BRCA+'s now. I have had chemo twice and having additional treatments of it apparently would cause me to be ineligible for clinical trials of these exciting new drugs. I don't know if that applies in the states or just Canada but I thought this might be of interest to some here. Then this past weekend, right after I got home I found a lump on my inner shoulder. I saw my MD who thinks this is either a lymph node or a fat lump but is sending me for an ultrasound this Wednesday. I guess it never really ends.....the fear of recurrence. Take care all. Cathy

Becky · 01-13-2018, 06:00 PM

I just got retested too because testing is different and better. I had 21 genes tested. I was fine but there ate other genes to test like the Rad51c and d. I had 28 genes tested. I had a variant of unknown significance on rad51d. They told me 99.9% of these continue to be nothing. Who knows?

I will cross all my fingers and toes for you.

Hugs

Cathya · 01-13-2018, 06:12 PM

Hi Becky;

I was totally shocked when I was diagnosed with ovarian cancer. i am so glad you're continuing to take arimidex. I often wonder if I would have had ovarian cancer at all if I had continued with it. I would take the ca125 at least yearly if I were you. It's not the number but the trend that should be watched. I just don't think enough is known about our genetic mutations.

My best, Cathy

Becky · 01-14-2018, 06:30 AM

I had my ovaries and tubes removed 12 years ago so that I could confidently take Arimidex. I was in chemopause after chemo but not in full menopause.

Cathya · 01-14-2018, 09:14 AM

They do not recommend I take arimidex or consider these kinds of treatments necessary with ovarian cancer.....at least where I go. Given that I have had my ovaries, tubes, etc. removed do I still produce hormones that could be affected by arimidex. I still would like to take it.

Thanks Becky,

Cathy