Pros and Cons of Getting Gene Testing

Hi Thatgirl: Even though I was dx in 2008, I was recently tested because I just found out last summer that I have 3 cousins with bc - 4 males in my father's family each have a daughter w/ bc, plus their sister had bc (my aunt). So....my onc's PA ordered the test (negative - yay!). Primarily, I wanted to know if I could have passed the gene to my children.

My family bx was strong enuf that my insurance paid. Negative result. There are many positives to having the test done as knowledge is power. The law these days says insurers cannot discriminate against genetic defects, but how can we be sure what they are doing? That was on my mind when I took the test, but they tell me the law should protect.



If you are single, it could be a difficult subject to broach with a potential husband, but that's not enuf to avoid the test.



Whatever your results, that's good info to share with family members concerned about their own risk.

Here's a fact sheet from the National Cancer Institute :  HERE

And info from the National Society of Genetic Counselors:  HERE

Hope these help!

From my perspective after my Genetic counselling session:  Pros: knowledge is power.  If you are positive and you know it you may choose to take more preventative measures. I wanted to know so I could tell my family so they can find out.  It will affect your future screening methods if you are BRCA 1 or 2 (two is a lower risk of BC and OC but there are a few other cancers you are at risk for with BRCA 2).  Basically the ability to make more choices to prevent cancer in the future that you are more susceptable too. 

From what my GC told me most insurances pay for the test now if you are below a certain age, if you have x # of first or second degree relatives with BC or OC.. ect there is some loose guidelines for each cancer.

CONS:  the GINA laws that protect your health insurance coverage, premiums, and eligability DO NOT apply to life insurance or disabilitty insurance.  So if you already have BC, we are already have a hard time getting those but if you have a daughter that could test positive for a gene it would be smart for her to have life and/or disability insurance in place BEFORE she gets the test.  once its positive my GC told me you are not going to be able to get them. 

That being said if you or a close relative is at high risk you may still be eligable for all the high risk BRCA screenings without getting the actual BRCA test.  I am BRCA 2 positive so my sister gets the OC and BC tests even though she is older and has not been tested yet.  Her risk of having the gene is 50/50.  if she doesn't carry the gene her risk of BC and OC is the same as the general population.  It can all get kind of jumbled in the head... all the different info.  A good genetic counsellor is a great resource to ask these kinds of questions.  Hope I didn't confuse you more.  THis is how I see the pros and cons when I think about it for me and my family.

I didn't have a genetic counselor since my testing was done by my BS primarily to make a surgical decision, but that is good info to know.

I've got my first appointment with genetic services in a couple of weeks, I want to get tested because if I'm positive there will be decisions that need to be made. I'd kick myself if I had the opportunity to get tested and didn't and then got OC. Good to do for family reasons as well, if you're positive it's easy (and relatively cheap) for sisters, nieces to get tested if they choose.

I'll be getting it done via free public healthcare, so it's up to them if they will test me. I initially cancelled my appointment after getting my family history done and finding no cancer (couldn't check much on my mother's side though). However, I got a call telling me that they will do it because of my age and the fact that my cancer is grade 3 and triple negative which is typical of BRCA1.