Just had genetic counseling--to test or not

kibbles

Just had genetic counseling--to test or not

kibbles

I am a woman in my early 30's.  I recently had genetic counseling for BRCA 1 and 2 test.  The genetic counseling was excellent, and answered all my questions.  However, I am still trying to decide whether or not to get the test.  My main concern is that if I test positive, I will not be able to handle the overwhelming emotional burden of knowing I am positive, and will be overwhelmed by the increased surveillance for both breast and ovarian cancers.  I am a worrier, and have had so much anxiety about my recent excisional breast biopsies (bengin) and now I have several more lumps that need to be biopsied.  The anxiety about my breasts overwhelms me, because I have found 6 lumps in the course of less than 2 years.  I practically have panic attacks every time I go to my breast surgeon's office for appointments, and I can barely sleep the week before these appointments because I get so nervous.  In general my breasts are now a constant source of anxiety for me.  I can't imagine the level of anxiety I would have and how I would cope with the emotional burden of that knowledge if I test positive.

 On the other hand, I know how important it is to have this information.

I'm still not sure to do--I have an appointment with my doctor to discuss further now that I've had the genetic testing.

I don't have any friends who have dealt with these same things to talk to.

Any thoughts?

leaf

I think it would be out of place for anyone to tell you what choice you should make.  It is a very individual choice. 

We can listen.   Some of us may share our experiences.  But everyone's personality and situation is different. 

Some people choose to get  professional emotional counseling, to help clarify their choices.  (I'm doing that.)    Some people choose to talk to their spiritual or religious leader, or discuss it thoroughly with a close friend.  Some people can come to a better decision by writing a journal.  Some people find it helpful to make a list, with the advantages in one column, and the disadvantages in another column.  Other people find none of this works for them.

You will eventually find the right choice for YOU. Feel free to vent or ask questions.  I'm sure other people will be along shortly describing their choices.

barb3246

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.

Abbey11

Kibbles,

First, you do not need to make this decision immediately.  You've had the counseling, now just take the time you need to make the decision about the testing.  I'm sure that you can get the test at any time as long as the counseling is completed.  Take a deep breath and take lots of time to think about this.

I was tested for BRCA 1 and 2 after my breast cancer diagnosis.  It was clear that all of my docs would have recommended an oopherectomy had I tested positive.  I was negative and still have my ovaries, but I did have a bilateral mast. because I had multi focal bilateral BC.  I think that you have to have some understanding of what your reaction to a positive test would be.  Would you only monitor?  You could do that without the testing.  Would you get prophylactic mastectomies and an oopherectomy?  Also, every time we make decisions, we have regrets.  Try to make the decision you'll regret the least.

I have to say having gone through the agony of a cancer diagnosis, I would do anything to have had the opportunity to prevent being diagnosed.

Mutd

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.

tweekerbeeker

hi, sorry to hear you are so conflicted. If you feel you will not be able to handle the info, might I suggest that you find a brca savvy psychologist ahead of time? Perhaps your CGC could recommend one. Also, go to the message board www.facingourrisk.org and read the posts, so things might be less scarey for you.

It is a big decision, and you can never "unknow" it if you are positive. But it may also save another family member's life.

kibbles

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.

Gugg

I have a mutation of the E-Cadherin gene ,had a total gastrectomy last year with this gene we also have a risk of breast cancer so  I have a Mammogram and a MRI once a year,had a mammogram on Oct 21/09 and had to have it redone yesterday again. the screening tools for breast are much better than the screening tools for stomach/gastric cancer but that being said it is always a worry.Any one else out there going through anything like this.If you are not preparing mentally and in the right mind set I would not reccommend making any major decisions regarding any type of surgery,but knowledge is power and medical genetic testing did save my life  I am sure. As my pathology report after stomach removal did show beginning cells

Ozzi

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.   

Mutd

Ozzi, what kind of ambiguity? Some variant of unknown importance? 10 years made a big difference and most of the formerly uncertain results aren't uncertain anymore. Have you tried to get an update on yours? Or is your result just negative? (Which often brings a bit of ambiguity of its own, but generally negative is still as good news as it gets)

LISAMG

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.

moonbuddy

kibbles,

My daughter has been talked to about getting tested.  i have a strong family hx as does her father.  Her doctor was wonderful!  She told her she would treat her as very high risk, and also said if she wasn't ready to do surgery, don't test.  Her test wouldn't be covered under her ins. only her surgery.

Marian