PET finally APPROVED for UPSC - Insurance denial OVERTURNED after long FIGHT!!!!! Tips on dealing w

I was SHOCKED yesterday when I got the call from my Aetna case manager - the insurance company had reversed their long-standing denials of my PET. Two days ago I received a special delivery letter from them that we were to go to a hearing on May 14th about this very issue. Don't know what happened that they changed their mind so abruptly. Just glad to hear. I am supposed to get the official letter (which was being mailed on Friday) next week.

I asked awhile ago about testing - I heard only about CT scans on this board but I had a PET in the beginning and I didn't understand the reason others did not have the same test. I think I understand a little more now. Let me tell you this story.....

A couple of years ago my doctors started using PET scans routinely. After my surgical staging my doc ordered a PET for additional info before starting treatment. It was initially denied but the radiation center was able to get it approved within a couple of days. I started chemo and did so well (CA 125 dropped rapidly and dramatically) that my doc skipped the standard scan midway since he knew I was responding well. So after round 6 he orders the followup PET. I get an immediate denial and the battle begins.....

* I write strong appeal letter to Med Solutions - DENIAL
* my doctor talks to their doctor - DENIAL
* I write another letter, NOTHING....TIME GOING BY....my mind is going crazy. Was my treatment effective?? tears.... more tears.....
* I request a case manager from Aetna who does some internal checking - and I think advocacy. I get info from my employer that our benefits manager has an advocate as well who gets involved.
* I get CT (at so many thousands of dollars) so they can get some info but my baseline was from a PET so result is (in my mind at least) like comparing apples and oranges - results good except for "shotty areas in neck and axilla"...I'm trying not to panic.
* PET appeal continues to next level - now with Aetna not Med Solutions. Case manager from Aetna stays in touch weekly.
* A hearing is scheduled via teleconference - I can have an attorney if I want. My doctor and nurse were helping and going to participate in hearing and then
* I got the word about the approval that I can get PET scheduled right away.

So here we are. Two and a half months later....lots of paper, phone calls, and angst later... and that elusive PET scan is almost here.

What have I learned??
1. My doctors prefer PET over CT - at least for uterine.
2. BUT some insurance companies won't approve for uterine, like Aetna - who considers it experimental. They will allow for other cancers, like ovarian. So my argument included the rare and aggressive nature of UPSC and how it acts like ovarian.
3. So if you really want a PET, YOU NEED TO FIGHT FOR IT. And rally your troops - your medical team, the insurance company itself through the case manager, and your employers benefits provider, as well as research. I was going to present research stats on UPSC and the value of the PET in detecting extrauterine involvement which UPSC is notorious for.
4. I wonder if the medical field is moving more toward the PET imaging and if insurance companies will have more pressure to pay for these.
5. Maybe more pressure from US - the patients - can move this forward. What do you think?

LADIES, I'd be interested in what YOUR doctors think about PET scans. Do they prefer them but don't order them because they know insurance won't pay for uterine (but they WILL pay for ovarian (what's that about????))?

If doctors do prefer PET or even want them at all, we need to pressure the insurance companies to stop putting this roadblock up. Time is precious in cancer treatment and UPSC is not a disease to mess with. What do you think, ladies??

I'll keep you posted on my PET scan results...it's nail biting time again....

Hugs and prayers to all of you.

Mary Ann