Genetic Testing and Trip. Neg.

2curvy · September 2007

Hi ladies: I, too, am triple negative and am appealing my insurance company to see if they will pay for genetic testing. Only my paternal grandmother's sister had breast cancer, although my maternal grandmother died of esophogeal cancer and my brother has had bladder cancer twice.

Although it is unlikely that I will test positive for these genes, I would like to make sure, since I am trip.neg. I would then opt to have my ovaries removed.

How many of you had the test with no family history and did any of you come back positive. Am I doing the right thing, in your opinion, to have the testing done? (If its not paid for, I don't know that I'll have it . . .)

Thank you,

Colleen

Skippy123 · October 2007

I had the gene testing done (recommended by my onc and surgeon.) I have absolutely no history of cancer! Insurance covered the test, and it is negative. I wanted the test regardless. I wanted to be sure.

Skippy

Dx July 2007

Stage II grade 3 IDC

Triple Neg.

BRCA 1/2 neg.

CalGal · October 2007

Hi Colleen -

If you can get the BRCA testing, great. It can either give you peace of mind (negative) ... or let you know that you have to be more vigilent re: the likelihood of bc in both breasts and oc risk. Although sometimes women are counseled that they likely have a genetic risk, but "the mutation hasn't been found yet" ...

Not sure of your age or if you have kids ... but if you're dx'd with bc pre-menopausal, that's more "ammunition" to get the test ... Also, was your grandmother's sister "relatively young" when dx'd with bc? Although there is a 50% chance of BRCA being inherited (male or female), sometimes it "skips" generations, particularly if there are more males ...

Unfortunately, my mom, my maternal grandma and I were all dx'd pre-menopausal with bc ... but I did NOT know the significance of that until after I had my BRCA test ... which was AFTER my recurr bc & mets dx ... So yes, I'm biased and figure it's better to know and make decisions accordingly.

Good luck,

CalGal

Negative3Grade3 · October 2007

Thank you so much for all the information you have provided for gene testing. I was diagnosed with 3Negative Grade3 on Sept. 1st and I'm pre-menopausal, so I need to know if I carry the gene. My oncologist said to do it after the chemo is done and before surgery (I'm doing neo-adjuvant chemo ACx4 Tx4) so I can decide what kind of surgery I need to do. I've heard that the test can take a long time, though, and I want to be prepared psychologically for what I need to do (at this point I'm a candidate for lumpectomy, since the tumor was 1.8x1.8x1.9 but clinically manisfested itself as 3x4 originally; after one treatment, clinically it appears as 2x1cm and I hope we'll have a better response down the road). How long does it usually take on average to get the test done? Thank you for your input in advance.

Skippy123 · October 2007

I was tested during the last week of August and received my results about 3 weeks later.

Eventhough my test results are negative, I'm beginning to wonder if I should go ahead and ask for a double mastectomy. This crap is aggressive and I want to be rid of this forever. I'm only 40 years old. I have children who are 4, 6, 10, and 13. I'm extremely happy in my marriage and want to live another 40 years. I realize life is precious to all of us, but I wonder about the double mastectomy decision.

RebeccaH · October 2007

I just received the results of my test, and I do not have the gene. I am triple negative, IDC, also. It is a huge relief knowing that I do not have the gene. The counselor recommended that I check in to see if any advances have been made in testing in the future. The test takes 2-3 weeks to get results. My counselor only worked one day a week at my hospital, so I had to wait on the 3 week side because of her schedule.

The best advice I received while trying to decide was even if I had the gene, I didn't have to follow the recommendations of a mastectomy and ooph. I was still empowered to make the decision.

Also, knowledge is power. Having the results will only give you power to make the decision that is right for YOU!

NarberthMom · October 2007

Negative3Grade3 --

I would start the process to be tested now. Sometimes the insurance company can take a long time to "approve" the tests. I had a family history of BC and my insurance was fine with getting the initial, cheap test, which just looks for the common BRCA1/2 mutations. When nothing turned up there, they balked at doing the more expensive and extensive test -- sequencing both genes in their entirety. It took a month for the approval process to wend its way through. (The appeal was done by my genetic counselors, who were great! I didn't have to do a thing). Some folks on these boards have had insurance delay for up to six months. If you want to be prepared for what surgery to do after chemo, start the process now!

Good luck.

BTW, I'm also triple neg, but I don't have mutations in BRCA1/2.

stage4 · October 2007

I had a aunt on each side of my family. I am triple neg grade3 with mets. Insurance approved the tests. It took approx 3 wks to get the results and I am neg/neg. Which is nice to know. They also keep some of your blood in case they isolate any new genes, that way the test with be alot less expensive. I was also told that IF you come back positive your family members are tested for 300.00.

claire814 · October 2007

I am awaiting results of genetic testing. 56 yrs old and just finished AC/T on 8/2/07. A friend my age tested positive after finishing chemo and then did the double mastectomy and hysterectomy - I checked into having ooph only but because it has been so many years since hysterectomy, they felt that it would be general surgery because of scar tissue. At this point I don't want to go that route for elective but if genetic testing shows a positive, will do it then. I will get the results 10/22/07. I would like to wrap up 2007 with the majority of this ordeal behind me.

Genetic Testing and Trip. Neg.

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