PET Scan Equivalent - Update

littlelady4220

Now that my husband has had his PET Scan, here are the results - and some questions - again!

A brief history - he was dx 1/11 with SCLC-Extensive, went through six rounds of carbo/etop, had a PET Scan 6/11 and it showed of the six tumors, five were gone and one was streaky. Then he had another PET Scan 11/11, and it showed that the tumor came back in his liver. Did 3 rounds of Topotecan, just had another PET Scan, showed the tumor was the same. So now the onc is going to do 3 more rounds of Topotecan. Says that he won't use another chemo drug as he doesn't want to go through them all in case he needs them in the future.

So, my question is, how many chemo drugs can be used on SCLC and how many lines of chemo can be used?





My husband's insurance will not pay for a PET Scan. They only pay for the one at time of diagnosis, and will not pay for monitoring during chemotherapy. He is due for another one in two weeks, and please, please - is there anything else that can be used as an equivalent for a PET Scan? A CAT Scan is not enough.

Thanks!

cabbott

Where I'd start
I'd start by calling the doctor's office and telling them what is going on with the insurance company. My doctor does not believe in unnecessary scans and will only do the CAT scans unless there is some pressing need for more information. Your doctor will have to make some kind of logical argument that the PET test is needed because it is expensive and it has risks like exposure to radioactive meds. In addition, the CAT scan takes pictures that are very clear of the area where the cancer started. Usually that is the whole thoracic area from the top of the liver to the patient's lower jaw. The PET scan will give a fuzzy approximation of where the cancer may be hiding in the body, but it can be misleading. While CAT scans give pictures as clear as xrays of the organs, PET scans light up not only where there may be cancer, but also where there might be infections or other problems. My onc tells me that chemo is helpful in increasing survival and stopping progression, but that tests to find out where the cancer may be hiding really don't prolong survival or stop cancer. After the initial tests at the time of surgery, he goes by the regular CAT scans and symptoms that show up. If symptoms show up, like bone pain or headaches that won't go away, he orders X-rays or CAT scans of that area. I'm not saying his is the only way to do things. That's just what he tells me is the gold standard and that is what he follows. If your doctor feels differently, have him start by writing your insurance company. They are not doctors and should not over-ride his decisions if they are supported by valid medical arguments. Sometimes your local cancer society also has funds for needed tests not covered by insurance. Try calling them if the doctor cannot straighten out matters. Good luck!

Ex_Rock_n_Roller

I think cabbott has my doctor ...
... because my guy uses exactly that strategy on that selfsame logic.

If your husband's doc has a different method, I would think he would need to try to sell it to the insurance company. I'm no doctor and I don't play one on TV, but I would echo cabbott's advice to the letter, and if your husband does not get a PET scan for monitoring during chemo, I would not assume he's being shortchanged.

It would be interesting to know the doctor's rationale for ordering up that test at that time. Possibly somebody else will log in with an experience more akin to what's being recommended for your husband.

Dawn50

Wow
I'm really hoping we don't run into that situation with my insurance company. My husband will begin second line Alimta on Friday and was told he will have two treatments and then a PET scan to see if it's working. I would hate to think they wouldn't pay for that. But his Oncologist told us he thinks the day is coming where insurance companies will say to the doctor, "you get two chances to treat this patient, if what you choose doesn't work - tough!" I really hope that day doesn't come....

Ex_Rock_n_Roller

Dawn50 said:

Wow
I'm really hoping we don't run into that situation with my insurance company. My husband will begin second line Alimta on Friday and was told he will have two treatments and then a PET scan to see if it's working. I would hate to think they wouldn't pay for that. But his Oncologist told us he thinks the day is coming where insurance companies will say to the doctor, "you get two chances to treat this patient, if what you choose doesn't work - tough!" I really hope that day doesn't come....

That day is probably already here ...
... although they don't use exactly that wording (the "two and done" thing). The stats speak the loudest when it comes to the dealing out of money, and after a point, they really don't have a choice. The sad thing is that predictably effective treatments haven't yet been discovered for a lot of maladies, including the one we're laboring under.

littlelady4220

Ex_Rock_n_Roller said:

That day is probably already here ...
... although they don't use exactly that wording (the "two and done" thing). The stats speak the loudest when it comes to the dealing out of money, and after a point, they really don't have a choice. The sad thing is that predictably effective treatments haven't yet been discovered for a lot of maladies, including the one we're laboring under.

He had the one scan in
He had the one scan in January 2011, that was a diagnostic tool and they paid for it. Then they did one in June and October 2011, they were denied and we are now stuck with thousands of dollars. The doctor wants to do another one in two weeks, we are very wary of it. First, for the problems with insurance, second for the constant exposure to radiation. We had appealed the two PET scans that were denied, and they came back with the final denial the other day. Legally, they are correct, because the policy states that a PET Scan will only be paid for diagnosis and not for monitoring or surveillance. That is why I wondered if there was something other then a PET Scan that could be used.

Thank you all for your input. We see the doctor next week and will talk to him about alternatives at that time.

NKY_Dave

Similar Experience
My wife has had her sclc come back 3 times now. After it came back the second time, her onc. as well as the rad. wanted to do another PET scan. The insurance refused to pay for it as they said it was contraindicated for this kind of cancer. Her rad. went to toe to toe with the insurance (Anthem Blue Cross-Blue Shield) about this and lost. Ultimately, they have continued to check with the CT scans on her torso and MRI's on the brain (it came back here twice). They explained that while it would be nice to know if cancer is lurking in areas where we don't currently know it to be it is not totally necessary to know this information. They treated her second time with Topetecan (without good results) then switched to Taxotere. This has beat the cancer back into a good response for the time being (at least in her lungs and lymph nodes). The doctors' logic was that the chemo is systemic treatment meaning it would treat any cancer it found regardless of whether it shows up on a scan. The brain tumors are a horse of a different color as chemo doesn't normally cross the blood-brain barrier. My wife is taking temodar for the maintenance of the brain lessions and has had good luck with keeping these lesions stable for the past 6 months with this.

I was extremely agitated at first with the insurance company but have since quit worrying about it as it has really not been an issue. I figure as long as the insurance company continues to pay for her treatment I won't sweat the small stuff (it seemed really big at the time though).

littlelady4220

NKY_Dave said:

Similar Experience
My wife has had her sclc come back 3 times now. After it came back the second time, her onc. as well as the rad. wanted to do another PET scan. The insurance refused to pay for it as they said it was contraindicated for this kind of cancer. Her rad. went to toe to toe with the insurance (Anthem Blue Cross-Blue Shield) about this and lost. Ultimately, they have continued to check with the CT scans on her torso and MRI's on the brain (it came back here twice). They explained that while it would be nice to know if cancer is lurking in areas where we don't currently know it to be it is not totally necessary to know this information. They treated her second time with Topetecan (without good results) then switched to Taxotere. This has beat the cancer back into a good response for the time being (at least in her lungs and lymph nodes). The doctors' logic was that the chemo is systemic treatment meaning it would treat any cancer it found regardless of whether it shows up on a scan. The brain tumors are a horse of a different color as chemo doesn't normally cross the blood-brain barrier. My wife is taking temodar for the maintenance of the brain lessions and has had good luck with keeping these lesions stable for the past 6 months with this.

I was extremely agitated at first with the insurance company but have since quit worrying about it as it has really not been an issue. I figure as long as the insurance company continues to pay for her treatment I won't sweat the small stuff (it seemed really big at the time though).

Your wife's story is very
Your wife's story is very much my husband's story, with the exception that my husband doesn't have any brain mets. We have Blue Cross Anthem also.

We are going to have to go with CAT Scans, and I thank you for your comments as it makes me feel better about them. I'm not going to get myself upset about the scans - there is enough other stuff to get upset about.

Good luck to you wife!

littlelady4220

NKY_Dave said:

Similar Experience
My wife has had her sclc come back 3 times now. After it came back the second time, her onc. as well as the rad. wanted to do another PET scan. The insurance refused to pay for it as they said it was contraindicated for this kind of cancer. Her rad. went to toe to toe with the insurance (Anthem Blue Cross-Blue Shield) about this and lost. Ultimately, they have continued to check with the CT scans on her torso and MRI's on the brain (it came back here twice). They explained that while it would be nice to know if cancer is lurking in areas where we don't currently know it to be it is not totally necessary to know this information. They treated her second time with Topetecan (without good results) then switched to Taxotere. This has beat the cancer back into a good response for the time being (at least in her lungs and lymph nodes). The doctors' logic was that the chemo is systemic treatment meaning it would treat any cancer it found regardless of whether it shows up on a scan. The brain tumors are a horse of a different color as chemo doesn't normally cross the blood-brain barrier. My wife is taking temodar for the maintenance of the brain lessions and has had good luck with keeping these lesions stable for the past 6 months with this.

I was extremely agitated at first with the insurance company but have since quit worrying about it as it has really not been an issue. I figure as long as the insurance company continues to pay for her treatment I won't sweat the small stuff (it seemed really big at the time though).

Your wife's story is very
Your wife's story is very much my husband's story, with the exception that my husband doesn't have any brain mets. We have Blue Cross Anthem also.

We are going to have to go with CAT Scans, and I thank you for your comments as it makes me feel better about them. I'm not going to get myself upset about the scans - there is enough other stuff to get upset about.

Good luck to you wife!

soccerfreaks

littlelady4220 said:

He had the one scan in
He had the one scan in January 2011, that was a diagnostic tool and they paid for it. Then they did one in June and October 2011, they were denied and we are now stuck with thousands of dollars. The doctor wants to do another one in two weeks, we are very wary of it. First, for the problems with insurance, second for the constant exposure to radiation. We had appealed the two PET scans that were denied, and they came back with the final denial the other day. Legally, they are correct, because the policy states that a PET Scan will only be paid for diagnosis and not for monitoring or surveillance. That is why I wondered if there was something other then a PET Scan that could be used.

Thank you all for your input. We see the doctor next week and will talk to him about alternatives at that time.

Hmmm
Every scan is potentially a diagnosis and there is no way for the insurance company to pre-determine what will be found or where, so this is BS on the part of the insurance company, in my humble opinion (I am not an insuranace expert nor an attorney).

I would give them a call and explain this to them with the warning that you are going to contact an attorney proficient in insurance matters if they do not comply. And if they insist on non-compliance, I would follow through on my threat.

Best wishes.

Take care,

Joe