Denied Genetic Testing

NYruralrider

My insurance company denied my genetic testing. Is it uncommon for TN's to get genetic testing?

 My brother who is a Dr. cannot understand why I would get genetic testing as I am not of black or of Jewish heritage. I am white of European decent.

 Any idea's why genetic testing would have been suggested for me by my onc?

 Thanks,

NYruralrider

Luah

I think you'd have to put that question to your onc. Generally it's offered when you have high risk factors or significant family history. TN by itself is not germane. While the majority of BRCA 1 carriers are indeed TN, it's estimated that (only) up to 20% of TNs are BRCA+. Genetic testing criteria can be complicated, and exceptions may also be made. 

Just to give you an idea, though, in Ontario, testing is offered to women who are Ashkenazi Jewish with BC < 50 years, have ovarian cancer at any age, or BC <35 years of age; or who have  at least 2 cases on same side of family of: BC <60 years and a first or second-degree relative with ovarian cancer or male breast cancer; or BC or OC in same individual, or bilateral BC <50 years; or BC <50 years, in first or second-degree relatives; or OC any age in first or second-degree relatives; or Ashkenazi Jewish and BC, and any family history of BC or OC. Complicated, like I said...

NYruralrider

Sounds complicated. So not being able to get the testing is not all that significant? I will ask my onc why next time I see him. Someone else I know who is going to the same cancer center has TN and her insurance approved her testing.

Thank you,

NYruralrider

edwh001

My ins denied it too, but my Doc got me an appointment at UAB (University Alabama Birmingham) and they tested me for free. They are a teaching hospital and have a very good cancer center and test so many a year for free. I was lucky and don't have the gene but they told me with so much cancer in my family, we likely carry a gene that hasn't been discovered yet.

Good luck

Emmy

Megadotz

There are a couple of other european groups that  have  higher risk, including the scandiavian countries. Norway has an extensive BRCA gene tracking system.

I looked at my insurance carrier's clinical policy guidelines and triple negative was listed as a qualifier for individuals with a personal history of breast cancer.  It also noted that the use of quantitative risk factor tools to qualify individuals that fell outside the stated guidelines.  The carrier also required that a  pre-authorization form to be filed.

Check with your oncologist to see what the story is. 

TifJ

My onco said any woman under fifty and especially TN should be tested.

LisaAlissa

It's hard to say what your doctor's office said when they submitted the request for genetic testing to your insurance company.  If they didn't specify the criteria that led them to suggest testing (and your insurance company didn't see something in your records that fit into their criteria), the denial is (I think) almost automatic.  I'd check with your insurance company, but I'd guess that they will suggest that it be resubmitted, along with the details of your diagnosis, age, medical & family history that led your doctor to suggest testing.  If you (or your doctor) can match them up to some published criteria recommending genetic testing, you're more likely to get approved.

Another approach is to talk w/ the lab that does all of the BRCA testing (Myriad).  I believe that you can submit a specimen to them with a caveat that should only be tested if they can get insurance approval.  And they're very good at getting approval if it can be had.

HTH, 

LisaAlissa 

KELL414240

My breast surgeon recommended testing. I wanted to know as I thought it puts you at a higher risk for other cancers like ovarian?? I also wanted to know so I would have that information to share with my sisters and daughter. I tested negative.

LISAMG

Your oncologist has your best interest in mind with seeking genetic testing. Any young woman, regardless of family history, having triple negative bc, should have genetic testing because of higher risk of HBOC syndrome can occur. Same goes for any woman, regardless of age, facing a diagnosis with ovca. With either one of these situations, get yourself tested, is my best recommendation. Unfortunately, too many healthcare professionals are not up-to-date with genetics, creating awareness and prevention!

mitymuffin

I think Triple neg often does have a genetic link.   My insurance, which is not great, covered it and I had no other risk factors. I wanted to know because I have daughters, and also if a woman is BRCA + then its important to consider having the ovaries removed because of the link with ovarian cancer, and possibly a complete masectomy if that hasn't been done. 

My insurance would not cover the more extensive genetic testing, but did allow the basic tests which reveal most BRCA links.  I'm sorry I don't know the names of the different levels of genetic tests. (BTW, I was negative for BRCA 1 or 2.)

worriednlost

Has anyone done tests on-line with www.23andme.com ? The test for BRCA Cancer Mutations and bunch of other things. The cost is about $220.  My mom received the tests for free at the hospital where she is getting treatments. But I was wondering if anyone had experience with that site.

mdhoward

I was told that having a TN diagnosis is automatic for Genetic Testing.  I am white of European decent and 41 at time of diagnosis and AETNA covered mine at 100% without hesitation.  BTW, I was negative for both BRCA1 and BRCA2.

hydeskate

I would request a consultation with the Genetics @ UNC Cancer Hospital.  I know there is a program that assists with Genetic Testing, my entire Family has been tested by them due to history of cancer, currently myself, cousin and aunt all have TNBC.  I couple of my cousins insurance wouldn't cover but they filled out some paperwork and got the test.