BRCA test, is it worth it? Pros/Cons

I was 43 at the time of diagnosis and my BS encouraged me to have the test due to my age and I have a young daughter.  I have 6 older sisters (45-59) and none has ever had a breast issue, nor has my mom, grandmother, etc., but my paternal grandfather had pancreatic cancer (he was also a raging alcoholic).  The genetics counselor thought I'd test negative, which I did, but I agree that there are other genes yet to be discovered that may predispose us to cancer.  I knew I'd do a bilateral no matter the outcome, but I felt for my peace of mind and for my daughter and younger sister I had to know.  Even without the mutation, my daughter now has a "family history" thanks to me. The removal of the ovaries is not always immediately required due to concerns about entering menopause so early and all that involves-- but it is something to consider down the line if you do test positive for the mutations.  Men do get breast cancer, so knowing for your sons (and the link between bc and pancreatic cancer), is probably something to consider.  I know it's a hard thing to do, but the genetics counselor was amazing and made me feel good about my decision.- Julie 

Catherine, I am 43 and also had the test.  My grandmother had bc in her 30's.  I have two sons:  the gene can be passed to males resulting in breast cancer or an increased chance of prostate cancer.  And then of course your grand daughters could get it.  It is an easy test to do, mine was a mouth swish, and I was relieved when it came back negative.  Women with the BRCA mutation also have a significant risk of getting ovarian cancer.  I can send you an article I have on who should get the tests if you would like.  Con: if insurance finds out, it may affect the ability to get insured.  My doctor did not put the record in my chart and gave it to me so that no one else can find out about it.  Good luck!

Make sure you get life insurance BEFORE you schedule an appointment for the test.  This question is on the asked on the application.

With or without the new health care reform, you can't be discriminated based on genetic testing.  My husbands 4 sisters have all tested positive for the gene.  Dh tested negative.  I had no family history so I was never tested.  Try explaining that one.

Best wishes.

BRCA will be cheaper to do in the future since it is not legal to patent :

http://wellness.blogs.time.com/2010/03/30/court-rules-against-patenting-human-genes/

In 2008 a law was passed preventing insurance discrimination:

http://www.facingourrisk.org/TTInc/viewpage.php?url=./finding_health_care/insurance_privacy_issues.html&needle=insurance+discrimination

I waited to get tested with the same thoughts as some of you ladies.  I wanted a hysterectomy when I was 45 and finally got one when I was 48 and actually needed it badly by then, due to a 9cm fibroid and more pressing on my bowels, bladder....I feel SOO much better! But dealing with the hot flashes and no hormone treatment is not fun but doable.

I got tested for the BRCA to determine if I should get my ovaries out, and planned on it being positive because for several years, my sis was getting more screening because of her gene.  I then got an insurance covered MRI for the first time (paid for because of the BRCA gene) and it came back positive for 7mm BC which is now saving my life to get taken of before it advances!

That is the way I see it...the testing for the gene did what it was supposed to do...dx and treat early cancer or prevent ovarian cancer in my case. (see my profile)  Dealing with surgical menopause is not fun while being worked up for very early stage BC.  BUT Stage I BC is 100 % curable!!!!!   I appreciate the honesty of these posts...it is still so depressing but little by little I am going to be the best I can be at 50!   Fotunately I can take time as I don't work, but frankly I was going to go back after the hyster but now am delaying that until my BC is treated.  

I am trying to decide Rx and got a call from a friend of a friend yesterday who didn't think twice about a PBM for herself having the gene, and then a lady walked by who was bald and wearing a compression stocking and was with what looked like her young daughter and I was in the car talking!  I so wanted to stop her (a perfect stranger) and ask her some questions and didn't, but I saw this as some weird sign,,,,if I don't do the surgery now, it may come back at a much later stage in the future.  Instead of 100% cure, I may have only a 20% cure then (able to live the next 5 years) if dx at stage IV....so I know what I need to do.   

Is the test worth it?  You are dam right it is, for me anyway.  I did delay it until I knew I had reason to do it.  When my sis first brought up the idea to me, she had four kids and didn't mine loosing her ovaries,  I was getting IVF treatment to have a second child.  So no, it wasn't the time then, but glad I did it now to find my BC.  Good luck and thanks for a great question.

Yes, I heard that the appeal is the next step ....and we all know how strong the drug companies are so I guess I should have worded my statement differently but the patient did "win" as resported in March.....In my opinion, I think it will be cheaper as more than one lab will hopefully be able to do this test and bring the cost down to save more lives.