Scan schedule following stage 3 diagnosis

Just to add, my husband was diagnosed as both 3c and 4 due to the oddness of his presentation which is technically stage 4 with unknown primary. He goes to MD Anderson. His first set of scans were CT (chest and abdomen/pelvis) and Brain MRI. He was then scanned every three months with CT scans of chest/abdomen/pelvis with yearly Brain MRI at MD Anderson for first two years and then every six months for the last 3 years. He also had Ultrasound of his lymph nodes near the site every 3 months for the first year. He couldn’t do year 2 Brain MRI due to extreme claustrophobia (they tried to drug him and even that wasn’t enough)

On year 3, the insurance company didn’t want to cover Brain MRI even though Dr. Amaria called the Insurance company and pleaded. So they switched to do a CT scan of the head that year. It may not be quite as sensitive, but my husband liked it a lot more since CT scanner is so much more open.

I don’t think there was ever a talk of PET scans and not sure if that was because of his insurance or if this was the protocol at the time. This year he will do yearly CT scans.

PET scans are a lot more expensive than CT scans (which the insurance company would care about) and since they are based on metabolic activity and how the organ is working (so functional changes can occur before physical change) versus an image of the structure/organ, therefore they they are expected to detect “activity” earlier (I’m not sure how much earlier, would have to look at the research to assess this difference). The insurance can deny if there is another “treatment, test, procedure” that is approved standard of care such as CT scans. Since they originally approved the PET scans (just like they originally approved the MRI for my husband for first two years), they have now determined you do not need these anymore and possibly has some sort of formula with variables they plug in like risk ratio, risk of progression, time since last evidence of disease, number of approvals already, number of clear scans, treatment time etc etc (just guessing on my part on the variables that would go into their decision, but just for example) and that would be miraculous if they provided this type of information. Some variable has made the determination that the added expense of the PET scan isn’t beneficial enough above and beyond other standard (CT scans) to outweigh the cost, etc to approve at this time. And this all varies by insurance company that the patient has so I’m guessing many on this board have gone through this. If you have the time, energy and passion, probably wouldn’t hurt to reach out and push back if you feel strongly about PET scans moving forward. This is first denial so would be good to find out why.

Looks like the ultimate standard might be this in the future to cover all bases: https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/tests-and-procedures/positron-emission-tomography-and-computed-tomography-pet-ct-scans

LIke anything else, getting this information from them will take some work. Did they give you a reason for the denial? Technically, they should tell you in the Explanation of Benefits or something why this is being denied? Did your doctor call them when it was denied to appeal?

Congratulations on finishing treatment and clear scans, that is huge!