› Forums › General Melanoma Community › Scan Question
- This topic has 15 replies, 11 voices, and was last updated 6 years, 4 months ago by
jenny22.
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- December 23, 2017 at 11:44 pm
First off: Happy Holidays to my family here! This can be either a really great time of year or a really dreaded one, so I am sending huge virtual hugs to everyone.
On to the topic I hate most: insurance companies.
When I started my new job in August, I got full health benefits (score!) and all has been great.. until now. I was scheduled to have a PET/CT scan on the Wednesday after Xmas. Last scan was in September and surgery was over a month ago, so I have been looking forward to it to get a nice clean scan to start off the new year officially NED.
This past week UCSF called to let me know that Aetna has denied coverage of my scan. They will pay for a CT but not a PET. UCSF did their best in telling Aetna that they're a bunch of ignorant people and that I DO need this scan. But, after much back and forth Aetna won't budge. Aetna claimes that PET scans are never needed for follow-up and are not indicated while a patient is not currently undergoing drug treatment. I would like to have a few choice words with the so-called "medical directors" that work for Aetna (and other insurance companies… last year Blue Sheild tried to deny me the Ipi/Nivo combo, thankfully they listened when my oncologist told them they were very very wrong).
So, now I have to wait until January 18th (3 days before my birthday) to get a CT and see my oncologist, one upside to that is I can get that scan and see my oncologist an hour later with the results. (PET/CTs were done at a different location and would have to schedule the appointment for results a few days after)
Since I know most of you don't get PET/CT combo scans…. what does your scan schedule look like? How do they know if your lymph nodes are "active" or not? All of my mets have been in lymph nodes, so that is my big worry is will it be obvious in a CT whether a lymph node is slightly larger? According to the Aetna oncology guidelines, they still won't approve a PET if something looks suspicious on CT, they say you have to have tissue samples tested first.. which requires more invasive/uncomfortable/painful procedures (ugh).
Do others no longer on treatment get PET scans? If so, how often do you get them? Or is this whole no PET scan thing really common and I've just been spoiled with having two scans at once for two years and it's helped pick up on very small things that I don't know if they would have been found until much later.
This is my first Christmas that I don't have to deal with a new cancer diagnosis or a recurrence and infusions and frequent trips to UCSF. As much as I really didn't want to deal with insurance BS right before the holiday, I am grateful for the way life is going at the moment anyway.
I hope everyone is spending time with family and loved ones this weekend. Wishing you all a happy holiday and many positive thoughts for a healthier new year!
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- December 24, 2017 at 12:10 am
Many times melanoma specialists prefer/require CT scans of the body with an MRI of the brain rather than PET scans. I have a variety of studies from 2003 until I entered my Nivo trial for Stage IV patients in 2010. While on that study with Dr. Weber, I was required to have CT's of neck, chest, abd and pelvis with an MRI of the brain every 3 months…then every three months for 6 months after the study…then every 6 months for another 2 years…and as I have not had a recurrence I was then promoted to annual events….same scans. I have had to fight with BCBS many times along the way. But, I think that your docs can learn what they need to with CT scans and an MRI. PET scans are not very helpful regarding evaluation of the brain as it all lights up! I did like PET scans, though. I got to be warm!!! Hang in there and Happy Holidays!! c
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- December 24, 2017 at 12:19 am
Jenn, congratulations on getting that last bit of mel out. I understand your frustration wanting to start the year off NED!
I get CT only, every 3 months and am currently on Opdivo. My understanding is that the CT part of the PET/CT combo is for anatomical purposes to locate more directly what lights up on the PET, and the CT images are not as detailed as when the CT is performed alone. (Somebody correct me if I’m wrong!) With this extra detail, yes, a change in size of lymph node would be detectable. But in your case it would be apples to oranges for the 1st scan of the year, since different than you’ve had before. My CT reports are really detailed and they do compare tiny cysts, etc. scan to scan.My melanoma onc at MDA (and her colleagues) do not use the combo when on immunotherapy bc so much lights up on the PET that is just reactive. Also, when I did have a larger than usual lymph node show on CT, they did a needle biopsy rather than a PET. Then we knew for sure it was benign. Just different techniques but I’m sure your onc will make sure you are well taken care of!-
- December 24, 2017 at 12:21 am
And brain MRI yearly!
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- December 24, 2017 at 1:35 am
Hi Jenn, I am still on trial (checkmate 067) and I get Ct of chest abd. every 3 months and because I had previous brain mets before starting trial, they do Brain MRI usually with in same week as Ct. I have only had one PET-Ct when I was stage 3 and it didn't show anything at that time, 3 months later on a chest x-ray they found 3.5cm lung tumor!!! As long as they have previous scans to compare images against, I wouldn't worry too much about it.Best Wishes!!!Ed
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- December 24, 2017 at 4:15 am
I knew you guys would make me feel better about this! The only thing that really bothers me about what I read in the Aetna "oncology scan guidelines" for what they approve (they approve stuff based on cancer as one disease and not as variations, which is frustrating since we all know each cancer is different) is that they won't approve Brain MRI's unless there are symptoms.. and the CT that they are approving is only legs (since that's where my primary was), pelvis, abdomen, chest. So I will never get another scan of my head unless I present with symptoms… which I plan on never experiencing but sure has been nice getting a clean brain MRI annually since this whole thing.
Thanks for letting me know your scan experiences, makes me feel a ton better about my change in scans.
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- December 26, 2017 at 3:38 am
I have Aetna and I am schedule for a PET on Thursday. Fingers crossed I will get the approval. I have several new spots show up in the lungs and the doc would like to get the PET. I have had one other PET earlier this year. It seems like Aetna change up some of the "rules" mid year. They were great at the beginning of the year and starting in Sept I started having problems with all the rules on scans. Insurance has given me a hard time about CT. The doc would like CT every 3 months for first two years and the insurance says only 1 every 6 months. I am switching to blue cross January 1 and hope that I have less trouble.
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- December 26, 2017 at 5:39 am
Hi Jenn!
Merry Christmas! I can say that all I've had so far is CT/MRI (CT body and MRI brain) combos and I've never had a PET scan. Mine are also in my nodes. I'm not sure why the MD Anderson folks have only opted for CT/MRI but I can say that they spotted my problem areas even when they were "punctate" and captured all growth so far. I'm not sure if that helps?
Tex
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- December 26, 2017 at 4:44 pm
I've only had 2 PET's the entire time (almost 5 years now) since stage IV diagnosis. Chest/ab/pelvic CT's every 3 months (now out to every 4) and brain MRI's were suuuuuper regular because of the brain mets. The CT's approved by your insurance company should be sufficient and detailed enough to keep watch over things in your body, BUT… you may have to put up a fight regarding those brain MRI's. Although you may very well stay clear of mets up there for the rest of eternity, that's not a place you want to find out there's been spread via symptoms. My first "symptom" was a grand mall seizure. By then, I had 5 mets. The remaining 34 that developed over the ensuing 18 months, were all noted on MRI's prior to any symptomatic conditions. They were able to treat them while they were still very tiny. The second (and ONLY other time) I had anything symptomatic caused by my brain, was something we clearly saw coming on the MRI's for months. It took 11 cm of edema and for my brain to have spent 3 weeks off center line, before my the left side of my face, and my left hand went into seizure. Some folks get headaches. Some folks get odd little twinges or numbness. Then, there are those of us, who go completely asymptomatic, even though we KNOW that all hell has broken loose up there. Your doc's office should be able to help you fight for insurance approvals on that. Aaaaaand… if not… perhaps having "stabbing headaches" or an "eye twitch" once per year… ehem… maaaay help sway the approvals in your favor. 😉
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- December 26, 2017 at 8:16 pm
Thanks for the input Niki! I know my oncologist office will be telling insurance that annual brain MRIs are a must and if insurance pushes back then I may have to have some "symptoms" once a year haha. Hope you're doing well.
Happy Holidays 🙂
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- December 29, 2017 at 4:46 pm
Hi Jenn- echoing what most others have arleady said…..CT every 6 months of neck, chest, ab and pelvis…brain MRI alternating iwth brain CT every 6 monhts….NO pet has been done since intial diagnosis in 2013…..Treating ONC is Pavlick at NYU…..
Hope this helps,
jenny
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