PET Scan Denied Again - 1259303

chebird
Posts:104

Hello all,

Vicente's cancer has been creeping along the inside of the dura in his head and spine. He has been treated with radiation.

His oncologist really wants a PET. When the PET is denied, Vicente gets MRIs and bone scans. The insurance has denied a PET scan twice now.

So, my question is, do CT scans or MRIs see as well along the nerves as PET scans do when one is looking for progression? Vicente is nauseous all the time now, and I'm so afraid the cancer has spread. He hasn't had any chemo in two years, or a change in treatment besides the radiation, so the nausea is a mystery.

Thanks again,

Holly

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Reply # - September 16, 2013, 08:45 PM

Dr West
Posts: 4735

I would consider an MRI to be a very suitable test. I think PET scans are a helpful tool but not the only one that can be helpful.

Good luck.

-Dr. West

Reply # - September 17, 2013, 07:16 AM

carrigallen
Posts: 194

I agree with the use of MRI in this setting, it should provide usable information to detect progression around the brain. In this specific setting of monitoring for progression, the findings obtained from a regular MRI scan are often more concrete and actionable than whole-body PET/CT. National guidelines endorse this approach.

In the current climate, many people believe there is a misalignment of incentives regarding practice motivations to use their own PET/CT scanners. Ultimately the payment structure may change, and so use of PET/CT scans may drop significantly.

The problem you describe sounds like leptomeningeal (LPM) metastasis, there are several threads on this forum that discuss this difficult problem. Hope this helps.

Reply # - September 17, 2013, 11:27 AM

catdander
Posts:

Hi Holly, I'm so sorry Vicente is having all this nausea. How Terrible. Has he tried any of the antiemetics to see if they help? nausea is such an awful symptom. I managed D's nausea pills when he was on chemo since I was on the outside I was able to get a fix on the cycles it took and prepare for it. Such as ondansetron given 20 minutes or so before trying to get out of bed. Promethazine was also helpful for nausea that had already set in. As I recall they both made him sleepy but it was better than being nauseous.

How are your mothers? Thinking of you all often.
Janine

Reply # - September 17, 2013, 05:52 PM

chebird
Posts: 104

Thanks Dr. West, Dr. Creelan, and Janine!

Vicente takes Zofran, which helps. I'm just worried that progression is causing the nausea. He hasn't been on chemo since 2011.

Mom is doing OK. She has had two rounds of chemo. She actually feels better than before treatment, so I pray that means that the chemo is working. Her dog (also has cancer) is doing OK as well.

I started Prozac :)

Dr. Creelan,

Can lepto be the cause of the nausea? We have been on the lookout for it since last April when we learned that his intradural extramedullary tumors are adenocarcinoma. Nothing like lepto has shown up on the scans - yet.

I believe Vicente's oncologist is just trying to throw out a wider net with the PET. It seems so hard to tell what is scaring and what is active.

Thank you so much for the replies.

Holly

Reply # - September 17, 2013, 10:25 PM

Dr West
Posts: 4735

Yes, lepto can cause nausea. I hope that isn't the cause, given how challenging it is to treat leptomeningeal carcinomatosis effectively.

And I agree completely with Dr. Creelan about the potential contribution of incentives leading to over-use of PET scans.

-Dr. West

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