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BRACA 1 or 2 testing

4 replies

Lizzzombie · 24/03/2010 15:27

Has anyone been tested for this defective gene?
I've just got the letter through for my first councelling session with regards to getting tested & wondered if anyone had any advice.

In particular, did you go on your own or take a friend/partner with you?

Any advice regarding this testing would be greatly appreciated as its a bit daunting.

OP posts:
Pennies · 24/03/2010 16:57

I am assuming you've been called because of a history of ovarian or breast cancers in your family?

I'm currently having treatment for breast cancer and my maternal grandmother had ovarian cancer years back. However there is no other history of it in our family.

I have two girls and I have wondered about getting the test done, but the way I saw it I thought that it would just mean that we all have the threat of it hanging over our heads and they will be brought up to be very breast aware and have regular scans and checks anyway so apart from risk reducing surgery I can't protect them much more than that.

I am also slightly concerned about how the information is used in future and whether it could jeopardise getting life insurance, mortgages etc.

Go for the session and find out what they have to say. It can't hurt you and you will be able to make a much more informed decision.

DinahRod · 24/03/2010 17:25

I've had the initial "counselling" session and family medical history traced, although it has stalled as my only surviving female relative on that side doesn't want to be tested. She has had treatment for bc in the States.

Both my maternal gt-grandmother and mother had bc, my mother's cancer was in both breasts, pre-menopause whilst in her 40s, which makes it aggressive & is a higher risk factor. My chances of bc are increased but they can't say reliably by how much. I will have early mammography from the age of 40 but they don't offer MRI in this country which is better for spotting bc in younger, denser tissue because it gives too many false alarms. Elective mastectomy was briefly discussed. Since I don't have bc I would want subcutaneous mastectomy.

I didn't take a friend or partner with me, it would have been pointless for them really to be there. It was mostly a nurse information gathering, and downplaying the risks.

Lizzzombie · 24/03/2010 19:32

Thank you for your replies.
Yes, there is a family history of breast & ovarian cancer.

My Maternal Aunt died about 20 years ago from it, at aged 47 and her daughter (aged 45 now) got tested last year, was found Braca positive (not sure if its 1 or 2). She had an elective double mastectomy last year(they found cancerous cells afterwards too) , and over the last 12 months has also had to have a hysterectomy due to ovarian cancer.

My Maternal Uncle, though clear from cancer has tested positive for the same defective gene. And one of his daughters is also Braca positive. His other daughter however is not.

My Mother refuses to get tested. For reasons similar to yours Pennies. She is in her early 60's now though, and has had regular scans and check-ups so feels its something she doesn't need to do. Even though, if she tested negative it would automatically mean that my sister and I would be negative, so we wouldn't have to get tested.

I have deliberated getting tested but feel it is the best thing to do. Due to family breast cancer in other members of both sides of the family I will be scanned from aged 40 too, but presently I am 34 and that seems like a long way off. (in that something bad could happen by then).

Dinahrod Did you have your councelling session in the UK? From what I can work out, the inital session to which I am to attend is chat about family history also.

OP posts:
DinahRod · 24/03/2010 20:08

It was all very informal, just a swapping of info really and no firm action decided, just possibles. The tracking of the family tree took months as they had to access medical records and get permission from various family members, but it sounds like this process would be relatively quick for you as this information from your family already exists, you would just be adding to the picture.

Am going to opt for the test, which is just bloods, after popping out dc no 3.

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