Oncologist pushing genetic testing?

shelly65 · May 2007

I saw my oncologist today for a check-up, she said it is now fairly standard for anyone diagnosed before age 40 to have genetic testing, and she would like me to consider it. Based on family history she thinks the odds are that it is not genetic, but says I could be the first in the family w/a mutation, which could affect my kids. Anyway, my main question has to do w/insurance - one of the reasons I didn't consider the testing before is that I was hearing about insurance companies using it against policyholders if the testing was positive - as in not covering them for cancer things or not covering them at all. Has anyone had any experience w/this? Also, does insurance cover the cost or is it better to pay for it yourself?
thanks!
shelly

wallycat · May 2007

I figured with a BC diagnosis, my stigma is already etched for me. I had the test done for peace of mind an for better treatment options. That's just me though.

Best to you walking this path....
it does get confusing and sometimes emotionally painful.

mbordo · May 2007

Same as Wallycat here...I figure a pre-menopausal BC diagnosis pretty much flags me as far as insurability goes!!! Thank goodness I already have life insurance!! I think the only time it could create a problem is if you are applying for an individual policy (when they exclude people for all sorts of silly reasons!) - shouldn't apply to group coverage through an employer...Also if you have an onc, you already have a cancer diagnosis, right? That's more risk than a potential genetic predisposition, IMO!

The main reason I'm having it done (aside from wanting to give my daughter the power of knowledge/information) is to decide if I should have my ovaries removed. There is no "early detection" for ovarian cancer, and it is linked to the BRCA genes....

Insurance usually requires pre-approval, and different criteria to meet for coverage. My onc said w/my family history, there should be no problem. They are covering 90% after I meet my deductible. I believe the cost is about $3200 if you were to pay it yourself....

Good luck!

Mary

shelly65 · May 2007

I know I'm already flagged as a risk for insurance cuz of the cancer, I guess my concern has to do w/the fact that my DH is self-employed, so our insurance is an individual policy. It's expensive, it's already sucky as far as coverage, and I'm afraid that a bad outcome from genetic testing might give them an excuse to drop us (maybe that wouldn't be legal?) or that it will make it harder to try to switch to a different company at some point? I don't know, frankly I just wish none of us had to deal with all this.

cindiedee · May 2007

What states do you live in? Some states have already enacted legislation to protect you from discrimination. I live in FL and FL law says even if the insurance co. pays for the test (and they are), they will never know the results unless I choose to give it to them. It won't be in your doctor's notes, etc - FL law considers the results my personal property - so you are protected. Go to www.facingourrisk.org - FORCE - and look up you state - all are listed with legistlation. Best of luck to all of you - at least with test results, you can at least start to plan the rest of your life. Blessings, Cindie

roseg · May 2007

My husband is self-employed and the insurance issue is miserable! He's had a cancer himself and we're stuck on this policy, whatever it costs, for the foreseeable future. I could get coverage through my work but he doesn't want to give up the individual policy lest something happen to my job and we need to pick up insurance.

I think I would check about whether I had rights in the state I lived in, and consider carefully whether you really want to do that test.

If you don't have much or any family history and your Onc thinks you'll be negative then why spend the money and possibly give them something to hold against you later? The Oncologist is obligated to tell yo about different treatment options, but telling you your chances are slim is a pretty strong "you don't have to do it" sign.

Having had bc you will be followed carefully from now on anyway.

I think check FORCE and see what the rules in your state are.

shelly65 · May 2007

thanks, I think I will check out the FORCE site!
shelly

Oncologist pushing genetic testing?

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