Topic: Just had genetic counseling--to test or not

Kibbles - I read your post, and it could have been written by me.  I too have had several (4) benign breast biopsies recently, and I have a strong family history. My mother died of BC at 57.  I too am a worrier, and my breasts are a constant source of anxiety as well. I actually get a pit in my stomach when I try to do my monthly self exam, I am so afraid of what I might find. 

I have been resisting getting tested, but after my latest scare I scheduled an appt. with a genetic counselor for Nov.5, although I don't know what I'll do if I test positive.  My surgeon didn't even discuss increased surveillance - she went right to phrophylactic mastectomy/oophorectomy. I know I will be overwhelmed with anxiety, but I am also scared to death to get the surgery.

Kibbles, 1st of all, are you prepared for a negative result? Negative results are more common than positive!

 Last week I listened to a lecture by Dr. Marc Schwartz from Georgetown, on "tolerance for uncertainty" in women who got their BRCA test results. He observes that the main reason for testing is to reduce uncertainty, and sometimes it happens, sometimes not quite.

 The biggest stressful issues are "ambiguity" (risk info is incomplete or conflicting) and "decision anxiety" (can't make up their minds what to do).

 The tests reduced "ambiguity" the best among the true negatives, of course.

The "decision uncertainty" was tested right after the test results were disclosed, and then at 1,6, and 12 months. Almost half of the women already knew exactly what they will do right away, and their stress level went down and down. Many women made decisions within the next month and their stress level also started going down. But a sizeable minority still couldn't decide even 12 months later, and their stress only increased over time.

I've decided not to get the test at this time.  I know the test is important for my particular situation, but I know that I can't handle the news of a positive result right now. 

 I have too much stress in my life right now and not enough emotional support to handle the news if the result was positive.  The genetic counselor did not calculate my risk of being BRCA 1 or 2 positive at very high, so I feel that it is not super high priority for me to get the test now.  I do think getting the test is important for me in general and I'll reconsider in a few months but for now I know that even the stress of getting the test done is going to negatively affect me, and a positive result would probably cause me to go into a very deep depression.  So I will talk with my breast surgeon about how to proceed given that I am not going to get the test in the next few months.

I could have written your post over 10 years ago.  My mom died of BC when I was 14 (she was 49) and I never had a day where I didn't worry about BC.  I was diagnosed in 2000 at 42 with my own BC.  I had the genetic testing and it came back ambiguous.  I have 3 sisters and none have been tested. I want to find a way to ease your mind.  Mammography and treatment have come a long way.  Most of the women I assist now who maintain a regular treatment schedule are diagnosed at Stage 0 and have very successful outcomes.  If you chose to have the testing - just fyi - I had a double mastectomy and removal of my ovaries and am doing very well.  If the anxiety is overwhelming you, please get help for the anxiety - once that is under control you can move forward with any decision making.   

Kibbles,

Have any family members tested to establish a family mutation? If so, you have a 50% chance of being negative!! Why was it suggested you seek counseling in the firstplace?  Remember, if you do have the gene, this is something you were born with and had your whole life, but now you know. I totally respect your choice for not testing, a very personal decision. For the most part, genetic counselors will agree any woman who is not considering preventative surgery should not test. Best wishes.