› Forums › General Melanoma Community › Scan schedule
- This topic has 12 replies, 10 voices, and was last updated 5 years, 5 months ago by
Ridingaroundwith27Jennifers.
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- October 30, 2018 at 9:59 pm
Hi everyone.
My son is 6 months into to his adjuvant Nivo therapy for his Stage 3a melanoma……his only scan so far was a PETscan in March following his initial diagnosis and prior to any of his surgeries. He had his sentinel node biopsy and WLE at the end of March, positive for microscopic melanoma, and a partial neck dissection at the end of April, and all those lymph nodes were negative. He began his Nivo treatment at the end of May when he was finally staged.
We are scheduled for his 6 month mark CT scans of his head, neck, and chest on Nov12….I received a letter from the insurance company stating that his neck and chest CT were approved…however I did not get a letter about his head CT being approved…the nurse at the doctors office returned my call today because of course I was all over that, and she said the insurance company denied the head CT. She said she forwarded more info and is hoping to hear back from the insurance company in the next couple days.
So my question is I guess ….how often and what kind of scans do Stage 3 patients usually get???? I think I may be in for ongoing battles with Blue Cross and Blue Shield for years to come and I just wondered if this is something other people go through…up until now I have had little to complain about…everything was covered with minimal copays…but I’m sorry….with the reputation melanoma has for sneaking back in after surgery you would think frequent routine scans are justified….I’m furious…I know my doctors office is doing everything they need to do to get it approved by Nov 12. But I still do not understand the denial in the first place!!!
So frustrated and not looking forward to calling BCBS tomorrow….
Kelly :/
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- October 30, 2018 at 10:31 pm
So sorry you are having to go through all this with your little one. I am stage 3b and I don't ever have scans on my head. I asked my doctor about that and he said unless I was having symptoms associated with my head, he didn't think it was necessary. My primary melanoma was on my shoulder and I had a positive node under my arm. I always have them of my neck, chest and abdomen. My insurance doesn't always approve the one of my neck for some reason. I think a lot of it has to do with where the melanoma has been previously.
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- October 31, 2018 at 4:38 pm
I don't have any problem getting Brain MRI's (every 6 months) and CTs (every 3 months). I also had melanoma discovered in the head area. I am on blue cross blue shield. The scan I have to fight for is the PET scan.
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- October 31, 2018 at 12:15 am
I'm not a medical practitioner, but I can share our experiences with my wife's melanoma.
She was stage 2 in December 2016. Primary that was deep and ulcerated on her left calf. Sentinel lymph nodes were clear upon biopsy. PET of entire body was done which showed nothing of interest. At stage 2, no adjuvant therapy is offered and plan was 6 month scans. Fast forward to just before her next scans and I'm taking her to ER with dizziness and nausea. ER does brain MRI and two brain mets are discovered. She is currently NED after brain surgery, gamma knife, and ipi/nivo and currently Nivo for another year.
I asked a lot of tough questions about her original scan, as the radiation oncologist who handled her gamma knife told me that a PET really can't see tumors in the brain, so it is a fairly poor tool for that.
The upshot is that the conventional wisdom seems to be that they will scan the body but not the brain unless a patient has CNS symptoms. The logic behind this is that melanoma usually moves to an internal organ before it moves to the brain. In my wife's case, this was not true, but she appears to be an outlier in that regard.
Her current, every 3 month, scan regimen is a CT of the chest and abdomen and a MRI of her brain. I hope this helps.
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- October 31, 2018 at 1:40 am
Hi. When I was initially diagnosed with Stage 3 (primary and mets lower extremity) I had brain MRI. I don’t think we typically get CT or PET of brain). CT of chest, abdomen, pelvis continued quarterly until I advanced to stage 4, the, brain MRI added back in quarterly. This is the protocol from MD Anderson. Good luck -
- October 31, 2018 at 3:05 am
I only get scans up to the neck in terms of physician orders going to insurance, however my neck scans go all the way to the top of my head (I see them in my oncologist’s office). I’ve had melanoma in lymph nodes behind my ear so I make certain that my head is checked by the radiologists with each scan. Maybe your insurance declined the head CT because they know the neck CT will Include the head?
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- October 31, 2018 at 3:09 am
I just realized that you may be referring to a scan of the brain rather than just the outside of the head. In order to get an MRI of the brain I think Oncologists usually need to have a specific reason for the request to insurance (e.g. headaches, dizzyness, vision problems)
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- October 31, 2018 at 1:32 pm
Hi Kelly, When I was first staged 3A with my melanoma on my scalp and micro in lymph node during sential biopsy they only were doing ct of my chest and abdomen. I didn't understand why when all the activity was going on with head and neck. This was Sloan and when I questioned it they said this was the standard for melanoma patients. I disagreed and said I think I should have neck scans as well and thereafter they were also included. When I would feel bumps on my head during treatment they weren't to concerned because I was on treatment even though I know they were melanoma. I always have one Brain MRI once a year and now on evey 5 month for neck, chest and abdomen scans. My last treatment was 14 months ago and I'm stge IV. Heidi
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- November 1, 2018 at 9:44 pm
Kelly, I'm with Blue Shield and coverage has been good, so far. My primary was on my scalp, but like others on here, I'm told that the CT is not the best test for the head; MRI is better. One scan (cannot remember which) was not initially approved, but the doc went to bat and got it approved. I was also told by Blue Shield at one point, I owed $78K–but this was later said to be about the timing of contract negotiations between BL and my provider, Quickly resolved. I understand your frustration and hope your situation is resolved soon.
Lisa
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- November 4, 2018 at 5:35 pm
Hi Kelly,
I'm stage IV and with Blue Cross and haven't had any problems with scan coverage. I'm on a quarterly schedule for chest, abdomen, pelvis CT and brain MRI. I don't get pet scans as the neuro team feels they aren't reliable enough for the brain.
My advice would be to work closely with the doctor's office staff. Coverage issues often can be quickly resolved when they get more info or the coding is changed.
Good wishes to you both,
Jennifer
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