› Forums › General Melanoma Community › Please comment – I’ll try to be brief
- This topic has 29 replies, 10 voices, and was last updated 13 years ago by
clf123456.
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- June 7, 2011 at 1:56 pm
Good Morning,
Good Morning,
Had 3mth onc appt yesterday. Expecting to sched PET scan as we discussed doing every 6mths, last PET was Nov 2010 (clear). Onc says insurance will not pay for PET unless disease evident (?) and had clear CT of chest, abdomen and pelvis in april 2011. Long story short – positive node removed last year. PET showed more. More nodes removed, several w/mel. Went on interferon after additional node removal. PET after showed new node. Had "radical" node removal, several nodes again w/mel. Off interferon, PET in November 2010 clear, CT chest, abdomen, pelvis clear in April 2011.
Come home and discuss w/hubby. All is well…until this morning. Hub wakes me up at 6am says he's been up since 11pm thinking about all this. " Is insurance the only reason not doing PET? Let's see if we can get one ourselves…Don't you understand what the PET does? I know you had CT, but what about your brain?…" and on, and on, and on…
Please, please don't be mad at hubby. After I settled with his bombardment I truly understand he is coming from a place of love (although he had an odd way of showing it sometimes). I told him to call the onc. Don't know what else to say. We all deal w/our battles each morning when we decide to think about it all day or go on with the beautiful gift of another day we have.
I hope I am not being ignorant and just assuming if the onc is okay, then I am okay. On a side bar – this is not my original onc it is a 2nd opinion onc after the 1st onc didn't know what to do after my very first node "lit up" on a PET – at the persistence of my hubby we went to the 2nd onc for our treatment plan. Basically, my hubby "saved my life" so I do value his opinion.
Thanks for your input. Hope I didn't get too confusing for you.
Laurie
- Replies
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- June 7, 2011 at 2:30 pm
CT scans can be configured to scan the whole body, including the brain. However, they may
also scan just the region that the oncologist is concerned about. PET scans are different
in that they look for areas that could indicate cancer because of high metabolic activity.
They tend to be quite expensive compared to CT scans.I think that the oncologist needs to have some reason to recommend a scan that includes
the brain. A CT, PET or MRI may be chosen depending on circumstances. Do you have any
symptoms that you are concerned about?Hope this helps.
Frank from Australia
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- June 7, 2011 at 2:42 pm
I know all too well the sleepness nights thinking about all of this. I would say this – a CT scan is MUCH more detailed than a PET scan. It will show spots that might be too small for a PET to pick up. Typically they might do a CT and if they see spots (i.e. think there might be disease) they will schedule the PET because that will pick up the cell activity.
I would think that if you had a clear CT scan the PET wouldn't pick anything up (just based on what I've been told from my onc). I know that I had a clear PET in Nov but when they did a CT scan in Jan it picked up a dozen small spots on my lungs – the PET would have never seen them.
It's great that your husband is looking out for you! Sounds like all around you are in good hands!
Best of luck!!
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- June 7, 2011 at 2:42 pm
I know all too well the sleepness nights thinking about all of this. I would say this – a CT scan is MUCH more detailed than a PET scan. It will show spots that might be too small for a PET to pick up. Typically they might do a CT and if they see spots (i.e. think there might be disease) they will schedule the PET because that will pick up the cell activity.
I would think that if you had a clear CT scan the PET wouldn't pick anything up (just based on what I've been told from my onc). I know that I had a clear PET in Nov but when they did a CT scan in Jan it picked up a dozen small spots on my lungs – the PET would have never seen them.
It's great that your husband is looking out for you! Sounds like all around you are in good hands!
Best of luck!!
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- June 7, 2011 at 2:30 pm
CT scans can be configured to scan the whole body, including the brain. However, they may
also scan just the region that the oncologist is concerned about. PET scans are different
in that they look for areas that could indicate cancer because of high metabolic activity.
They tend to be quite expensive compared to CT scans.I think that the oncologist needs to have some reason to recommend a scan that includes
the brain. A CT, PET or MRI may be chosen depending on circumstances. Do you have any
symptoms that you are concerned about?Hope this helps.
Frank from Australia
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- June 7, 2011 at 2:48 pm
I would never be mad at your hubby. This disease is incredibly difficult for families.
My husband moved out of the bedroom a few days after my diagnosis. This is actually okay with me cuz I appreciate the whole bed after surgery or other treatments. But it was wierd, I think he thinks cancer is contagious.
Your husband might want to come to onc meetings and bring his own questions. This actually helped my husband to accept things.
Nicki, Stage 3b
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- June 7, 2011 at 2:48 pm
I would never be mad at your hubby. This disease is incredibly difficult for families.
My husband moved out of the bedroom a few days after my diagnosis. This is actually okay with me cuz I appreciate the whole bed after surgery or other treatments. But it was wierd, I think he thinks cancer is contagious.
Your husband might want to come to onc meetings and bring his own questions. This actually helped my husband to accept things.
Nicki, Stage 3b
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- June 7, 2011 at 2:51 pm
CT's do pick up smaller lesions than PETs ever will. PETs will have more false positives / false negatives. That's why many do the combo PET/CT now. However, If your CT shows something of interest, then you scan with PET and it should be covered by insurance then. As for your brain, an MRI is the best choice, not a PET. PETs aren't good for areas that already have high metabolic activity (brain, bowels, heart).
Do what makes you feel comfortable. CTs truly are an acceptable alternative. There are places that don't scan at all for stage III unless you have symptoms. Hopefully, you and hubby and your medical team can come up with a scan schedule that works (and doesn't break the bank).
Best wishes,
Janner
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- June 7, 2011 at 2:51 pm
CT's do pick up smaller lesions than PETs ever will. PETs will have more false positives / false negatives. That's why many do the combo PET/CT now. However, If your CT shows something of interest, then you scan with PET and it should be covered by insurance then. As for your brain, an MRI is the best choice, not a PET. PETs aren't good for areas that already have high metabolic activity (brain, bowels, heart).
Do what makes you feel comfortable. CTs truly are an acceptable alternative. There are places that don't scan at all for stage III unless you have symptoms. Hopefully, you and hubby and your medical team can come up with a scan schedule that works (and doesn't break the bank).
Best wishes,
Janner
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- June 7, 2011 at 2:56 pm
So if CT scans are somewhat better than PET (and I know PETs are more expensive) why does my onc schedule PETs every 3 months and CT hardly ever?
I have had MRI for the brain only twice in 1 1/2 years.
Janner, what would you like to see as far as scanning if you were Stage 3? I appreciate your knowledge in this area.
Nicki, Stage 3b
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- June 7, 2011 at 11:58 pm
Different docs like different things. In an ideal world, I guess you could scan everything every three months. But you'd probably be chasing a lot of ghosts, paying money out of pocket and receiving a lot of radiation. There are studies that have been done that say scanning a melanoma patient does not increase survival rates – that's why some institutions only scan when there are symptoms.
My Dad is stage III, but is 86 years old. He's had 2 PET/CT scans 6 months apart – mostly to see if his known disease has spread. He's having one lymph node removed next week. We opted to avoid the LND because of quality of life issues and are just removing the one hot node seen on both CT and PET and already biopsied positive for melanoma. I suspect they will do 6 month scans on him, but he also has 3 other types of cancer. He has no plans to actively fight any of them, but all are basically stable at the moment.
What would I want? Good question. Not always easy to answer because I'm not in that situation. For the first 2 years of being stage III, I'd probably want periodic scans. I'd probably want a PET/CT combo, but I would live with a CT if there were insurance issues. CTs are able to capture smaller lesions than PET. They all have their pros and cons, but the combo PET/CT does help cancel out false positives/negatives. I believe, however, that CT scans not done in combo have better resolution than the combined PET/CT. After 2 years, I'd definitely think about decreasing frequency as I'm not a fan of radiation. Heck, I even put off teeth x-rays when possible. I can see me being the type where things light up on a PET for no reason to cause me more grief. However, I am still open minded on this scan issue. If my onc had good reasoning behind his choice of scans and frequency, I could see myself going along with it. I also think some people need to be reassured that things are ok with scans. I'm not sure I'm in that group. I think I could scan less and pay attention to my body more.
I wish I had a really good answer, but I don't!
Best wishes,
Janner
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- June 7, 2011 at 11:58 pm
Different docs like different things. In an ideal world, I guess you could scan everything every three months. But you'd probably be chasing a lot of ghosts, paying money out of pocket and receiving a lot of radiation. There are studies that have been done that say scanning a melanoma patient does not increase survival rates – that's why some institutions only scan when there are symptoms.
My Dad is stage III, but is 86 years old. He's had 2 PET/CT scans 6 months apart – mostly to see if his known disease has spread. He's having one lymph node removed next week. We opted to avoid the LND because of quality of life issues and are just removing the one hot node seen on both CT and PET and already biopsied positive for melanoma. I suspect they will do 6 month scans on him, but he also has 3 other types of cancer. He has no plans to actively fight any of them, but all are basically stable at the moment.
What would I want? Good question. Not always easy to answer because I'm not in that situation. For the first 2 years of being stage III, I'd probably want periodic scans. I'd probably want a PET/CT combo, but I would live with a CT if there were insurance issues. CTs are able to capture smaller lesions than PET. They all have their pros and cons, but the combo PET/CT does help cancel out false positives/negatives. I believe, however, that CT scans not done in combo have better resolution than the combined PET/CT. After 2 years, I'd definitely think about decreasing frequency as I'm not a fan of radiation. Heck, I even put off teeth x-rays when possible. I can see me being the type where things light up on a PET for no reason to cause me more grief. However, I am still open minded on this scan issue. If my onc had good reasoning behind his choice of scans and frequency, I could see myself going along with it. I also think some people need to be reassured that things are ok with scans. I'm not sure I'm in that group. I think I could scan less and pay attention to my body more.
I wish I had a really good answer, but I don't!
Best wishes,
Janner
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- June 8, 2011 at 12:24 am
From what I've observed, at least my Doctors, if you have active disease they use a CT scan so they can clearly see change. Usually that person is under treatments and they can see if there is a response. If NED they use a PET/CT because it also scans arms, legs and will pick up hotspots that are not on a major organ.
When they first spotted my lung nodules the next scan became a diagnostic CT. My onc also ordered a PET/CT. That was a double radiation day. That way they felt they had a better baseline. Since the lung nodules have remained stable and assumed inactive they have gone back to just a PET/CT. Sometimes a CT will pick up something and that also isn't enough info. It could be something benign. The PET part would give the suggestion if it is malignant.
With my latest tumor it was on the ulnar nerve near the elbow, hidden by the fatpad and could not be felt. The PET picked it up, it was 1cm. Then they ordered a MRI to get a better picture. It gets better! Then the day of surgery I had a CT scan and they put a wire into the tumor so they could find it when it was removed. Doing an MRI and a CT on this area of the arm was not easy. They had to position the arm so that the beams would not go near my eyes. Being on the nerve made it even more complicated. Will know if they got clear margins next week. I knew the area hurt and told my oncologist about it before he told me that the spot had lit up. My point is you don't know where melanoma will or can recur.
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- June 8, 2011 at 12:24 am
From what I've observed, at least my Doctors, if you have active disease they use a CT scan so they can clearly see change. Usually that person is under treatments and they can see if there is a response. If NED they use a PET/CT because it also scans arms, legs and will pick up hotspots that are not on a major organ.
When they first spotted my lung nodules the next scan became a diagnostic CT. My onc also ordered a PET/CT. That was a double radiation day. That way they felt they had a better baseline. Since the lung nodules have remained stable and assumed inactive they have gone back to just a PET/CT. Sometimes a CT will pick up something and that also isn't enough info. It could be something benign. The PET part would give the suggestion if it is malignant.
With my latest tumor it was on the ulnar nerve near the elbow, hidden by the fatpad and could not be felt. The PET picked it up, it was 1cm. Then they ordered a MRI to get a better picture. It gets better! Then the day of surgery I had a CT scan and they put a wire into the tumor so they could find it when it was removed. Doing an MRI and a CT on this area of the arm was not easy. They had to position the arm so that the beams would not go near my eyes. Being on the nerve made it even more complicated. Will know if they got clear margins next week. I knew the area hurt and told my oncologist about it before he told me that the spot had lit up. My point is you don't know where melanoma will or can recur.
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- June 7, 2011 at 2:56 pm
So if CT scans are somewhat better than PET (and I know PETs are more expensive) why does my onc schedule PETs every 3 months and CT hardly ever?
I have had MRI for the brain only twice in 1 1/2 years.
Janner, what would you like to see as far as scanning if you were Stage 3? I appreciate your knowledge in this area.
Nicki, Stage 3b
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- June 7, 2011 at 2:52 pm
When a group of us were at the Chapel Hill Symposium last year one of the main speakers brought up that at least in NC if you were one year NED BCBS would no longer be autorizing PETs without symptoms. Unfortunately I have had 3 recurrances since then so I haven't had to think about it.
A PET/CT does not do a good job on seeing anything in the brain. There is always activity in the brain so it lights up! That is also true with the bladder and I believe the colon.
The PET did light up my last 3 recurrances that would not have been seen on a normal CT so I do understand where you are coming from. 2 of those I also had symptoms and had complained about and the PET pinpointed.
In the end it's your decision if your willing to fight the insurance company or pay out of pocket. Maybe rotating the CT's with an occasional PET? Since you haven't hit your 1 year mark NED I would fight for at least 1 more.
On a side note: I've always had my scans and then my appointments. The results are discussed with the Dr while looking at the scans. Your Dr seems to be appointment first. Maybe different Docs are different.
I would try for 1 more PET.
Linda
stage IV since 06
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- June 7, 2011 at 3:24 pm
I asked my onc the same question about CT's vs PET's. When I was first diagnosed living in North Carolina my surgical onc at UNC told me my schedule would be a PET every 3 months and brain MRI every 6 months. I moved to NJ and now go to Sloan and my doc perfers a CT scan since it gets a much more clear picture. If something looks wrong then they schedule a PET (or in my last case – just went straight to biopsy).
What it comes down to is doing what you think is best (or at least have your doctor explain the approach and thought process! We are our own best advocates! Which it sounds like you have done a great job at so far!
Thoughts and prayers!
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- June 7, 2011 at 3:24 pm
I asked my onc the same question about CT's vs PET's. When I was first diagnosed living in North Carolina my surgical onc at UNC told me my schedule would be a PET every 3 months and brain MRI every 6 months. I moved to NJ and now go to Sloan and my doc perfers a CT scan since it gets a much more clear picture. If something looks wrong then they schedule a PET (or in my last case – just went straight to biopsy).
What it comes down to is doing what you think is best (or at least have your doctor explain the approach and thought process! We are our own best advocates! Which it sounds like you have done a great job at so far!
Thoughts and prayers!
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- June 7, 2011 at 2:52 pm
When a group of us were at the Chapel Hill Symposium last year one of the main speakers brought up that at least in NC if you were one year NED BCBS would no longer be autorizing PETs without symptoms. Unfortunately I have had 3 recurrances since then so I haven't had to think about it.
A PET/CT does not do a good job on seeing anything in the brain. There is always activity in the brain so it lights up! That is also true with the bladder and I believe the colon.
The PET did light up my last 3 recurrances that would not have been seen on a normal CT so I do understand where you are coming from. 2 of those I also had symptoms and had complained about and the PET pinpointed.
In the end it's your decision if your willing to fight the insurance company or pay out of pocket. Maybe rotating the CT's with an occasional PET? Since you haven't hit your 1 year mark NED I would fight for at least 1 more.
On a side note: I've always had my scans and then my appointments. The results are discussed with the Dr while looking at the scans. Your Dr seems to be appointment first. Maybe different Docs are different.
I would try for 1 more PET.
Linda
stage IV since 06
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- June 7, 2011 at 2:59 pm
well… I just want to let you know that there are plenty of people out there that don't have any scans at all. Some regular, notable melanoma centers do no scans unless a patient is symptomatic. Check the profile for DebbieH, stage 3C for almost 10 years now and her docs do NO scans.
My doc has me on PET/CTs now..but for the 5yrs I was stage 3B I had chest and abdomen CTs only. After my first sub q, which showed up on my leg and was not seen by my ct scans, he moved me to PET/CT..because it confirmed the sub q in my leg. However, I like to remind him ~I~ am the one that found the lump, not any scan
I'm busy trying to talk him out of PETs ! I feel like a chest/ab ct would catch any spread in the body except the extremities, which I feel like ~I~ will notice first, prior to any scan, and the brain, which a PET is not that reliable for the brain anyway.
It's great that your husband is so loving and supportive. I hope you are DONE with melanoma for good!
dian in spokane
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- June 7, 2011 at 2:59 pm
well… I just want to let you know that there are plenty of people out there that don't have any scans at all. Some regular, notable melanoma centers do no scans unless a patient is symptomatic. Check the profile for DebbieH, stage 3C for almost 10 years now and her docs do NO scans.
My doc has me on PET/CTs now..but for the 5yrs I was stage 3B I had chest and abdomen CTs only. After my first sub q, which showed up on my leg and was not seen by my ct scans, he moved me to PET/CT..because it confirmed the sub q in my leg. However, I like to remind him ~I~ am the one that found the lump, not any scan
I'm busy trying to talk him out of PETs ! I feel like a chest/ab ct would catch any spread in the body except the extremities, which I feel like ~I~ will notice first, prior to any scan, and the brain, which a PET is not that reliable for the brain anyway.
It's great that your husband is so loving and supportive. I hope you are DONE with melanoma for good!
dian in spokane
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- June 7, 2011 at 4:47 pm
Hi Laurie, the melanoma docs at the University of Colorado Cancer Center have always told me they prefer MRIs for the brain and CT scans for everything else (over PET scans) because these scans provide a far clearer picture of anything of potential concern. E.g., they once told me at a time when they strongly expected to find extensive metastasis that 1) a PET scan was pretty useless to detect a brain metastasis because a healthy and active brain SHOULD light up a PET scan, and 2) if they started with a PET scan for everything else, they'd have to follow up on any suspicious spots with a CT or MRI to get a better picture of location, size and structure. In essence, they seem to think that a CT or MRI, or even a simple x-ray, is usually a better diagnostic tool to start with if they suspect something may be amiss. Don't know if this helps, but I think there are a lot of different opinions among oncologists about which type of scan is best in a particular situation.
Take care. Rich
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- June 7, 2011 at 4:47 pm
Hi Laurie, the melanoma docs at the University of Colorado Cancer Center have always told me they prefer MRIs for the brain and CT scans for everything else (over PET scans) because these scans provide a far clearer picture of anything of potential concern. E.g., they once told me at a time when they strongly expected to find extensive metastasis that 1) a PET scan was pretty useless to detect a brain metastasis because a healthy and active brain SHOULD light up a PET scan, and 2) if they started with a PET scan for everything else, they'd have to follow up on any suspicious spots with a CT or MRI to get a better picture of location, size and structure. In essence, they seem to think that a CT or MRI, or even a simple x-ray, is usually a better diagnostic tool to start with if they suspect something may be amiss. Don't know if this helps, but I think there are a lot of different opinions among oncologists about which type of scan is best in a particular situation.
Take care. Rich
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- June 7, 2011 at 5:06 pm
I am surprised by the insurance company. I think that I would start an appeal. I have done this twice and each time won. You'll need your doctors support, just a letter from him stating medical necessity and siting standard practice. Then a letter from you. Call The insurance company see how long you have to file and exactly what they need.
Mary
Stage 3
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- June 7, 2011 at 5:06 pm
I am surprised by the insurance company. I think that I would start an appeal. I have done this twice and each time won. You'll need your doctors support, just a letter from him stating medical necessity and siting standard practice. Then a letter from you. Call The insurance company see how long you have to file and exactly what they need.
Mary
Stage 3
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- June 8, 2011 at 12:04 pm
Thank you everyone!
After much thought I decided to allow my hubby into my private world of MPIP to read your posts. I think it settled his mind a little. He doesn't understand why I come here and I can't find the right words to explain to him the how's, why's and all. I just do – period.
I appreciate all your input. Thank you.
Laurie
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- June 8, 2011 at 12:04 pm
Thank you everyone!
After much thought I decided to allow my hubby into my private world of MPIP to read your posts. I think it settled his mind a little. He doesn't understand why I come here and I can't find the right words to explain to him the how's, why's and all. I just do – period.
I appreciate all your input. Thank you.
Laurie
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