Sorry to hear about the situation with your wife. I know there is nothing in the NCCN guidelines with regard to IMRT and it is always tough when trying to deal with insurance companies over anything.
PET scans are fairly common and I had one after my first recurrence of bladder cancer because the idea is to see if it has spread. So...if the PET scan gets ordered in order to rule out the spread of the bladder cancer, it seems like it should be covered. I was on BCBS when I had my PET scan and it was never an issue. Didn't even require preapproval unless it was done behind the scenes without my knowing about it.
I hadn't even heard of IMRT (or may have in passing) but it doesn't look like it has been used much for bladder cancer from any sites on IMRT that I found. One site said: The areas most commonly treated with IMRT are: prostate, spine, lung, breast, kidney, pancreas, liver, larynx, tongue and sinus. The brain is treated with IMRT when one-session radiosurgery is not appropriate or unavailable.
Also, most sites I read said that insurance often does not cover it. No idea how much it costs. Best of luck with getting them to reconsider.
Bladder cancer has one of the highest recurrence rates of all cancers. That works against you when trying to argue for a treatment that is only going to address this specific tumor because if it is muscle invasive the risk of metastasis is high. The recurrence rate is high enough that insurance may say, even if you get the tumor, it is just going to come back and if you can't remove the bladder it is going to be radiation after radiation until it spreads. Not letting her get the PET scan doesn't seem to make sense unless the radiologist is asking for only a pelvic CT/PET. If they as for a full body PET scan, that is looking for any remote spread (metastasis).
What stage did they say the cancer is? The first level of muscle invasive is T2. T4 is that it has already gone all the way through the muscle to outside of the bladder.
Sorry I can't offer more information. I've been working (to use a polite term) with my insurance company for three months already on trying to figure out why they decided after 15 years that my 60mg of simvastatin is now no longer a safe dose. So far, I am not winning that fight even though I gave them the FDA study that says even 80mg is safe if one has been on it for over a year without muscle damage. My doctor has sent appeals and letters of medical necessity. The weird thing about my case is my deductible isn't even paid so I have to pay for all of it myself anyway.
My wife was diagnosed with invasive bladder cancer. Her doctor ordered a PET scan and plans a treatment of Intensity Modulated Radiation Therapy (IMRT) along with chemo therapy. Blue Cross Blue Shield of North Carolina (her companies headquarters, she lives in Florida) denied the PET scan and the IMRT therapy. BCBS considers it investigational or experimental therapy. IMRT has been used for a variety of pelvic tumors for at least 10 years and probably 14 years which doesn't make it experimental but the standard of care according to her Radiation Oncologist. The idea behind IMRT is that you can deliver high rads (measure of radiation intensity) specifically to the tumor and then modulate the rads down when you come close to normal tissues so they do not get the high radiation dose. The idea is that other structures near the bladder in this case and especially the bowel will not get the intense radiation and therefore not develop complications as a result. Conventional radiation causes bowel complications in 18-20% of cases and with IMRT the rate of bowel complications is <6%. This is a significant difference. We also discussed that the standard of care for bladder cancer is removal of the bladder. While my wife was still in the hospital it was discussed that she was not a good candidate for surgery because of her other illnesses on top of having a very difficult and lengthy surgery. It should also be noted that if surgery is required should a bowel complication arise this is also a risk as well and thus anything we can do to eliminate this risk is in her best interest.
The other issue is that the bowel cannot tolerate more than 4500 rads and to effectively treat the bladder tumor the rads have to be much higher. The result is that if you irradiate the bladder tumor with no more than 4500 rads (the upper limit for the bowel) you will not get good treatment and the likelihood of the bladder tumor coming back is very high...and the doctor is obviously very reluctant to do the treatment in that manner.
In addition to the bladder cancer, she has COPD, heart problem and a history of bowel surgery, which makes bladder removal something she could not survive. Her doctor does not want to do conventional radiation, only the IMRT.
I am in the process of requesting a external review, where a third party sits on a panel and helps the doctor and the insurance company to agree on treatment. What I need is any information I can get, to substantiate the IMRT therapy as standard treatment for bladder cancer, rather than experimental. If anyone out there has any links, it would be appreciated.
Time is of the essence and days are passing, as we go through the appeals process.