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PET finally APPROVED for UPSC - Insurance denial OVERTURNED after long FIGHT!!!!! Tips on dealing with insurance companies.

daisy366's picture
Posts: 1493
Joined: Mar 2009

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

Posts: 24
Joined: Apr 2009

I just wanted to say congratulations for your success in battling your insurance co!!! Your a trooper alright! You must be thrilled. :)

Know I'm saying prayers for you as we speak. ((Hugs))

pjba11's picture
Posts: 192
Joined: Nov 2008

What a battle. So glad to hear you have this option cleared. I had a PET earlier somewhere during my treatments. My Dr had no problem ordering it. I am not sure how much they had to fight the insurance. They did not tell me anything about that end of it. I also asked for one to compare it with .... maybe 3 months ago and my Dr said the CT was better for my diagnosis since I have spots on my lungs. But if I wanted one she would order it. After she explained to me that the CT would pick up the smaller areas on my lungs for a true comparison in growth rather than a 'hot spot' area I went along with the CT. I know I will want a PET sooner or later. Just as you do ...............for a apples to oranges comparison. I scan every 6 months now. (my first 6 months!) and it seems like forever to me after so many aggressive treatments earlier. No needles,radiation, contrast, or Dr offices for 6 MONTHS!!! So there really is a span of 'normal' in my life again. Maybe even some long lost dignity returning!! As I read some of you gals posting and going through what I can so relate to..... just think about where I am now and know it will get easier and you will be here too. My prayers and thoughts are with all of you daily. Happy mothers day.

Posts: 743
Joined: Oct 2008

My doctor and I have discussed PET vs CT and he believes they each offer valuable information. Right now he prefers CT because that is where most of the data lies, simply because they have not been allowed to order PET by insurance companies. So far I have only had CT's, but he is planning on me having a PET about 3 weeks after completing treatment. I think he is hoping that more doctors will start to use PET with CT. The longer they use them the more data they will have to prove which is more effective.

Posts: 126
Joined: Apr 2009

Deanna, You might be able to enroll in NOPR government study that I think pays for PET/CT overlay for a study. I may have mentioned it on prior correspondence but your primary doc can get the paperwork from the PET/CT place, fax it back and enroll you. NOPR will get the numbers to make it more availabe with proper research for all.

daisy366's picture
Posts: 1493
Joined: Mar 2009

Thanks Bonniesue,

I'm going to check into this too. If I have to go through this battle every 3 months it is ridiculous.

Mary Ann

Posts: 126
Joined: Apr 2009

daisy-maryann. I hope any info helps. I know that it is a continous process and since this is used for other cancers since they have bigger numbers it could be more utilized in uterine--if there were more people entered for research. Uterine cancer is so silent.

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