brac 2+-family testing

rmpoulsen

I know this is a long shot but I have tested postive for brca2, and am struggling about what to do with my daughter.She is 21 and multi-handicapped. I can't have a pap smear done on her unless she is put under general anestsia. What do I do? If she is positive brca 2 do I have a double masctecomy because I know she can't go thru chemo the way I did 3 yrs ago. it was hard enough on me who is very healthy as apposed to her. I also had a complete hysterctomy to reduce my chances of a reoccurence. I am looking for input or resources to help me decide what to do. I am hoping I have a couple of years to decide what to do so I am starting now. She won't let anyone touch her even to bath her except me so I am sure doing even a mammogram will be a struggle. please help

LISAMG

Visit www.facingourrisk.org & explore the web site specifically for high risk women where you will find lots of support & resources. Go the the main forum messageboards and post just what u have done here. Your high grade tumor also may indicate a high risk for a recurrence and/or new primary. Have u sought the advice of a certified genetic counselor regarding your risk and the concerns for your daughter?? Best wishes.

MomGeo

Hi RMPOULSEN - I feel your pain.  I just received my BRCA-2 + result last week and the guilt has been terrible because I have 3 girls...14, 11,  and 5.  My girls are not multi-handicapped; however, I know at some point I have to deal with telling them about this.  I also felt guilty telling my two brothers who also have children.  I chose to tell them both and also gave them my report so they could research and decide how to handle the news with their children.  I admire you for testing and for wanting to take action.  Wish I had a solution for you.  The advice above from LISAMG is excellent...the website she offered is a good one.

Best wishes for you and your daughter!!!!!!!!!!!!!!!!!!!   

AnacortesGirl

Although it sounds like it might be a struggle since a blood draw is required, why don't you have her tested?  If the test comes back negative then you can put your mind at ease.  I find that the unknown is much more scary than the known.

andreajesse

I have the brac gene and had my 18 year old daughter tested they did not draw blood they had her swish a kinda like mouth wash in her mouth and spit it into a sterle cup then that was sent off for testing. My mom sister and myself have it my daughter does not.

AndreaM4567

I am BRCA 2+ and I have a special needs 17 year old daughter. We are in the same boat. We will be getting her tested and go from there.

We spoke with her gyn and she told us no surgeon will do a hysterectomy on her until she is 30 no matter what the BRCA results are.

As far as getting her breasts removed, when I was 20, my Dr. said that he understood why I wanted them off (mom and both grandmothers all had breast cancer in their 30's) and he would do the surgery. But then you are dealing with the ability for her to deal with the pain of surgery. My family and I have gone round and round with this and we decided that if she is BRCA positive, we will likely get her breasts removed in her 30's as well as a hysterectomy. We think that dealing with "just" the pain of the surgeries is better than the pain AND the chemo and/or radiation.

Are far as mammograms go, if she needs to have other procedures like a colonoscopy, dental work or anything else, have a CT scan of her breast done at that time. You can put her into a twilight sleep if necessary.

bethanieb

I agree with getting the test then deciding on your approach. There is always that 50 percent chance that she does not have a higher risk.  Then you can take one step at a time. But the test is imperative I feel.  Good luck.  I have three teenagers, they aren't special needs and I know they will have to make their own decisions. I feel for your pain.