BRCA and Insurance woes

[Olivia]

Hi Everyone,

I have been denied by my insurance twice now for the BRCA
testing. I am young, have 2nd degree relatives on both sides with bc, am ER-
, and have had a melanoma. All are risk factors of BRCA.

Has anyone else been denied and then appealed and gotten it paid
for??? If so, HELP please. My genetic counsellor has tried to help as well.

Thanks so much.

Olivia

[Becky]

Olivia


Keep appealing. I appealed 4 times and they finally said yes. Make sure your cancer center and Muraid Labs (who does the test) are completely on board and keep appealing on your behalf too.

It worked for me (and in the end my test was "no mutations found".

Kind regards

Becky

[astrid]

Olivia; Have you been to a genetic counselor to determine your chances?. Certain people have a higher chance of inheriting BRCA1 or BRCA2 gene changes. Things that increase your chance include:

• A close family member with a known BRCA1 or BRCA2 change.
• One or more close family members with breast cancer, ovarian cancer, or both. Your chance of cancer is higher if either of these cancers occurred before age 50, if several family members had these cancers, if the breast or ovarian cancer occurred in both breasts or ovaries, or if one family member had both cancers.
• A male family member with breast cancer.
• A family member younger than age 50 with breast cancer who is of Eastern European or Ashkenazi Jewish descent.
• A family member with ovarian cancer who is of Eastern European or Ashkenazi Jewish descent.

When I was diagnosed in November, I went to a genetic counselor. My sister was diagnosed at age 37 with Breast cancer and my grandmother was diagnosed at age 43. My sister died at 40 and my grandmother died at 53. The genetic counselor said I only had a 20% chance of the mutation because I had no other family history. Most breast cancers are random or it could be BRCA17 and we can not test for that yet. If you only have second degree relatives it is unlikely that you have the genetic mutation. My genetic testing results came back and they were negative of all genetic mutations.



The genetic testing is very expensive. There is only one lab that does the testing and most insurance companies do not pay the whole tab. You will most likely have to pay $500. Before you push for genetic testing you need to consider what you will do with the results. Will you have a double mastectomy? Will you have your ovaries out? You are young do you really want to change who you are? I was very thankful that my testing was negative because I know that a positive result runs risk of a 40-70% chance of reoccurrence; however I was not going to do the radical surgery because my sister had a mastectomy and she still reoccurred and died. I want to treat this cancer first and then maybe after 5 years when I was sure this cancer has not metastasized I would do the radical surgeries.

[Olivia]

Thank you for your response. I did see the genetic counsellor who, did not give me a %, but said there was a good chance I'd be positive. My maternal aunt and paternal grandmother both died of the disease. I have a very small family, my father died young. So we cannot tell if I had a larger family, if it would be mor pervasive. I was diagnosed at age 34. I have already had bilateral mastectomies. If positive I would have my ovaries out. I am 36 and have 1 child, pretty decided to stay with 1. Not fired up about being menopausal but would deal with it.

Thanks,

Olivia

[astrid]

There is a clinical trial for pre menopausal women. It is IBCSG 24-02. This trial has two arms that offer ovarian suppression. You may want to Google the trial and see if it is offered in your state. If it is offered then you can suppress your ovaries for 5 years and maybe then the testing will be even better and then insurance companies will pay for it more routinely. Is your child a daughter or son?? If you have a daughter you may want to be tested so that she will know. If you have a son, I hope they have better testing by the time we both have granddaughters.