PET vs CT scans and Insurance problems

[BLinn90]

Hi All,
I'm new here - and probably should do some more research.
I have OC with Clear Cell (unusual and agressive).
I had a hyserectomy last April and finished the standard 6 sessions of chemo last Sept.
They said I was Stage 1.
After 3 months, my CA125 is up from 29 to 42 & I'm pretty scared!
My doctor wants to do PET and CT scans but my Insurance has refused to cover the PET scan & will only cover the CT scan.
Is this important?  Any advice about dealing with ins?  We have GEHA (fed empoyees).
Thanks, BLinn

[Berca]

Hi Blinn,
I am sorry to hear of that dang rising CA 125. I work for a state MA HMO. No insurance company will pay for a PET scan unless you have a CT Scan done that was abnormal. It is only now being recognized as a front line test for Ovarian Ca. Have your MD use this code for the PET Scan 183.0. Hope this helps.
Berca

[PF_PVD]

One of my oncs likes the CT with contrast for diagnostics.  The other prefers the PET/CT, and I've ended up then having both within a week of each other.  But guess what?  My hospital has just started doing the contrast CT along with the PET.  You know before you just had the isotope injection and quick CT and then the PET scan?  Well now you get the injection and drink barium before the CT and PET.  This is a very good marriage to me.  My insurance company has OK'd payment for the PET/CT--not so much because they're generous, I believe, but because I am stage iv and had only 4 weeks from first-line therapy before my CA125 quadrupled and we're in a mad search for the killer.  Still not something to be grateful for.  As Alan said, keep up the fight!  We are all different.  Paula

[alanpvegas]

Welcome to health care in America...I still shake my head at those who compain that we shouldn't have healthcare for all Americans and ridicule other countries.  I've seen the good and bad of this issue for over a year.  

So don't worry...vent!  You have every right to....you are in the most wonderful country in the world...minus healthcare equality.  Companies, out for profit, run things here...plain and simple.  One political party wants to give them more power and has a great spin on it to make it sound like it's good for you...I'll let you guess which one.

Anyways don't worry if you cannot get PET.  While it's a fancy dancy test...it's one of many.  So if you can get your CT along with maybe an ultrasound, that might be a good combination.  Remember that your CA-125 is not everything.  I've learned that you can have a CA-125 in the thousands and be living with great quality of life whereas someone with extremely low CA-125 (for cancer at least) can be in horrible shape.  There is no way to interpret your CA-125 in a general sense, it is all how it applies to you.

So if you are 'tumor' free, that's a good thing.  You want to avoid the blockages and metastasis that comes with this disease.   I would recommend talking with your oncologist to see how you can understand how yoru CA-125 is a reliable or unreliable marker of your treatment/progress.  In other words, don't stress about this...I know, easier said than done but a positive attitude is important to dealing with any disease.  Keep fighting! :)

[BLinn90]

Hi
Thanks for your comments...I'm very alarmed since my CA125 has risen from 29 to 42 since chemo ended 4 months ago.  Wondering if I'll ever have a full head of hair again!

I read that the PET/CT combo give alot more data than one or the other alone.

I called the insurance company & got some very nice, sympathetic people - but probably will only get the CT scan.  They have a cruel, horrible contractor called Med Solutions that is so awful to deal with that my doctor's office is now reluctant to call them at all.  They demand a "peer to peer" conversation with my doctor to 'justify' the PET scan - refused it last October anyway.  Note:  how can an Insurance company contractor have a PEER of the Chief GYN/ONC of Johns Hopkins, for Pete's sake???
I was told they have 3 cardiologists who make these decisions that are life and death for us.  I am furious that they presume to know more than my doctor whether a procedure is necessary!  

Sorry!  Venting!  

[jdinan]

Had a PET CT scan 2 months after chemo ended because I had some "symptoms". Now my insurance (BCBS) will not pay for the procedure. Three appeals later, and they still won't budge.  I may end up getting stuck with the bill

[OzBron]

I was told by my doc that if the CA125 is a good marker (luckily I am one of those) that CA125 will actually show growth sooner than it would be visible by CT or PET (she suggested up to 3months before) due to resolution of the CT's and possibility of the recurrence coming back as a film/coating or thin layer rather than clumping as tumours. So my doc's policy is to hold off exposing me to radiation until definite trend in CA125 is seen and then use CT/PET etc to fully scope situation pre-surgery for recurrence or chemo etc.
That seemed reasonable to me - I hated the scans anyway.

[alanpvegas]

Yeah they don't; want to pay for the PET because it's horribly expensive.  What PET does is show glucose (sugar) uptake by cancer / tumors that can't be seen by any other type of radiography imaging.  

A good point to start would be CT scan and monitoring the CA-125 levels.  If no tumors are present, continue monitoring the blood count and do a followup CT the following month (your oncologist knows to do this).

That being said, if you really want to get the PET right now, or at least get the ball rolling to get it approved, just appeal.  Nearly 50% of denied claims are approved after the first appeal...they are just hoping you will not appeal and take it.

So file your appeal so it can get approved...there are always workarounds.  

Go get 'em!

[vegas2cr]

In my opinion a trans vaginal ultra sound is better than all of them.. Ct contrast scan works just as well... again this is my opinion.. You can file a grievance with your insurer if you doctor feels it necessary to have both... I think the CT will be just fine..

Tuesday is my 10 week checkup and it will be CT scan transvaginal ultrasound, regular ultrsound, mammogram and ultra sound mammogram.. all blood work.    I have stage IV adnocarcinoma ovarian cancer...