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Repeat PET scans?

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Repeat PET scans?

Posted By
Tsvetochka
7/27/2020 12:56pm
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Replies: 5

Short history: May 2019 I was diagnosed with Stage 4. The biggest tumour was 9 cm on/by my adrenal. (? I think that's the right English word, but I'm too lazy to look it up again right now.) Started Keytruda. By January 2020 the cancer was mostly gone, and suspected colitis was getting bad, so we stopped. PET scan in February showed that all that was left was one slightly enlarged, slightly active lymph node, and 27 mm of the biggest tumour. That last bit showed no metabolic activity, though. So, my doctor had me do another PET scan in April. That showed nothing active anywhere, and the inactive tumour leftover was 25 mm. NED! :-)

Today I had a three-months-after CT scan. That 25 mm is still there. They think it looks soft and unthreatening. However, my doctor wants me to do yet another PET scan in three months. That would be the third this year! Not to mention the expense, I really didn't handle that last one well at all. I started throwing up in the machine. Ick.

My questions: would you do another PET scan so soon? What about waiting till next year?

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

Edwin - (7/27/2020 - 1:36pm)

I had a PET scan on June 5 and am scheduled for another one in the middle of October. That will be 4 months between PET scans. My last 2 PET scans showed NED. I have never had a problem with a PET scan. I just relax during one. If I were in your situation, I would like a PET scan in 3 months. You are fortunate to receive PET scans. Some health insurers will not pay for PET scans.

Tsvetochka - (7/28/2020 - 12:57am)

That's another issue. They're expensive, and we pay for them, not insurance. Plus, I have to travel a long way to get to where they're done.

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

tkoss - (7/28/2020 - 9:20am)

3c here. after 6 months on opvido, doc ordered CT scan. took all of 5 minutes. i assume the street price was a 4 or 5 hundred dollars. you can actually shop around for independent labs to get scans. admittedly my met was in LN only and it was not a PET scan.

i have an ACA compliant policy and have had no problems with getting prescribed tests or treatment.

if a PET scan is required, i would think insurer's would be happy to pay in as much as overlooking any new tumors would in the long run cost them alot more money.
i wonder too if your insurer is fully staffed during Covid and they simply deny claims out of hand to simplyfy thier lives.
Speak to your insurer. The doc's too are constrained in Covid environment and may not be advocating for you.

Tsvetochka - (7/30/2020 - 1:03am)

I live in Eastern Europe. I do have basic government insurance, but it definitely doesn't cover any of this. I can and do "shop around" for independent labs for most things, but there's only one place that does PET scans in the country. I'd much rather just keep doing CT scans, because, like you said, they're only a few minutes, in and out. PET scans are not.

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

Bubbles - (7/31/2020 - 10:06am)

I feel your pain, financial and otherwise, T!!!!!! I've had both PET's and CT's and you're right - the PET is certainly more time consuming. (Though I kinda like PETs better cause I got to be warm! HA!!!) Your problem is one that several here on this board have faced - A blob of "something" that remains where a known active tumor has been and now it "looks" inactive, but it is super hard to be sure. As you are well aware, the CT just shows the blob - and while it can indicate its evil or innocuous nature - the PET is far more clear in showing whether or not the tumor is active or dead.

My thoughts: Is there any chance that the "blob" is located in such a way that biopsy is possible and that your insurance would cover that procedure? To my mind, that would be the most definitive way to figure out the status. Otherwise, I guess I would continue PET scans until everyone was assured that there were absolutely no active melanoma cells present. Perhaps you could negotiate a longer time frame between, though I don't know that I would be comfortable waiting an entire year if my team wasn't certain the lesion was dead.

Unfortunately, melanoma care doesn't come with neat easy solutions!!!! What we choose to do is very personal and the only person who can really make the best decision for you is you! Hang in there. I wish you my best, whatever you decide. Celeste