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To EvertheOptimist

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

For some reason I cannot respond to your wonderful note on line. There may be a computer glitch. I agree more research is done for ovarian cancer and it is creating a block for those of us with serous uterine cancer. Not as much research is done on serous uterine cancer and when we need medications the oncologists use the drugs needed for serous ovarian cancer because the two share so many similar characteristics. However, the insurance companies will not pay for the drugs and say, "it is not studied in uterine cancer." Calling it serous Gyn cancer would help us all so much.

I wish we could change this. I'm not sure where to begin. I've written congressmen, senators, and groups supporting Gyn. I have not found any help. You are very bright and perhaps could offer some insight. Maybe a revolution to help women!

Diane

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Well said, Diane. I agree totally.

evertheoptimist
Posts: 140
Joined: Jan 2011

Diane,

Your point is well taken. I do believe that for me the clinical assessment of my gyn oncologist (UPSC) is the correct one. I lucked out in that the hospital pathology report went out as 'ovarian' and that allowed me to get the drugs etc approved for ovarian cancer but not necessarily for UPSC. I understand it's not just the drugs, but also tests and other issues.

I am curious about one thing. The block: is it a matter of insurance company not paying for the drugs? Or, is the problem bigger than this, meaning medical board that won't allow the doctor to use the ovarian drug off label? For instance if it's just the insurance issue, worst comes worst, can a patient choose to pay for it? Of course, I don't trivialize the financial issues - I am just trying to understand the exact nature of the problem here....

If it's mostly a financial issue, I understand that sometimes a drug company has a special program to let patients have access to their drugs at much reduced price. I read something like this somewhere. I don't have any personal experience since it has never been an issue for me.

Good luck.

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