To Scan or Not To Scan, THAT is the question.

You're the only one with the question, not the medical professionals.  They already know that the benefits of scanning in a situation like yours (I am assuming you are the same individual who posted earlier about scans in another thread) are very limited.

* Scans don't pick up micrscopic disease or new primaries, they only pick up tumors of a certain size.  Stage 0 and stage I have low recurrence rates and the most likely venue for spread would be lymph nodes, not internal tumors.  Scans also find "benign beasties" that almost everyone has.  This means that if they see something, then they have to rescan or biopsy on the extremely unlikely chance that it is melanoma.  They already know it isn't, but they have to do CYA followups.  $$$ and time and anxiety and hassle for something benign.  Things like lung nodules are EXTREMELY common in the general population, but since melanoma can spread to the lungs, you now have to test and biopsy or rescan just to make sure.

* Scans have radiation – lots of it.  Do you need to expose yourself to cancer causing radiation on the extremely rare chance that you find an advanced tumor?

* Scans haven't been shown to increase survival.  This is why there are institutions that don't scan stage III and stage IV regularly – unless there are symptoms.  Scans are big business and make lots of money for institutions. 

* Palpating your lymph node basins are a much more important diagnostic tool than scans for early stagers, since roughly 90% of recurrences happen via the lymphatic system.

* The internet is a terrible place to look for "reality" when it comes to recurrences.  Those that recur show up on internet sites.  The vast majorities who DON'T recur never post again.  You can't compare yourself to anyone who posts because you can't know that even they know their whole story.  I can't tell you over the years how many people I've met who THINK they are spouting all the facts about their case, but they have it wrong.  In addition, different people, different environments, different immune systems – what happens to one person doesn't ever mean it will happen to you.  Perspective is definitely needed when reviewing stories on the internet.  They can tell you to be vigilant, yes.  But don't jump to the paranoia camp because you see the exceptions, not the norm on the internet. 

I have been a moderater for a stage 0/1 board for almost 10 years and the board has basically died a quiet death as most of these early stagers have moved on with their lives and don't want to participate.  A few still hang around if there are questions, but basically all have moved on because they aren't having a recurrence.  That's the reality I see.

You're the only one with the question, not the medical professionals.  They already know that the benefits of scanning in a situation like yours (I am assuming you are the same individual who posted earlier about scans in another thread) are very limited.

* Scans don't pick up micrscopic disease or new primaries, they only pick up tumors of a certain size.  Stage 0 and stage I have low recurrence rates and the most likely venue for spread would be lymph nodes, not internal tumors.  Scans also find "benign beasties" that almost everyone has.  This means that if they see something, then they have to rescan or biopsy on the extremely unlikely chance that it is melanoma.  They already know it isn't, but they have to do CYA followups.  $$$ and time and anxiety and hassle for something benign.  Things like lung nodules are EXTREMELY common in the general population, but since melanoma can spread to the lungs, you now have to test and biopsy or rescan just to make sure.

* Scans have radiation – lots of it.  Do you need to expose yourself to cancer causing radiation on the extremely rare chance that you find an advanced tumor?

* Scans haven't been shown to increase survival.  This is why there are institutions that don't scan stage III and stage IV regularly – unless there are symptoms.  Scans are big business and make lots of money for institutions. 

* Palpating your lymph node basins are a much more important diagnostic tool than scans for early stagers, since roughly 90% of recurrences happen via the lymphatic system.

* The internet is a terrible place to look for "reality" when it comes to recurrences.  Those that recur show up on internet sites.  The vast majorities who DON'T recur never post again.  You can't compare yourself to anyone who posts because you can't know that even they know their whole story.  I can't tell you over the years how many people I've met who THINK they are spouting all the facts about their case, but they have it wrong.  In addition, different people, different environments, different immune systems – what happens to one person doesn't ever mean it will happen to you.  Perspective is definitely needed when reviewing stories on the internet.  They can tell you to be vigilant, yes.  But don't jump to the paranoia camp because you see the exceptions, not the norm on the internet. 

I have been a moderater for a stage 0/1 board for almost 10 years and the board has basically died a quiet death as most of these early stagers have moved on with their lives and don't want to participate.  A few still hang around if there are questions, but basically all have moved on because they aren't having a recurrence.  That's the reality I see.

You're the only one with the question, not the medical professionals.  They already know that the benefits of scanning in a situation like yours (I am assuming you are the same individual who posted earlier about scans in another thread) are very limited.

* Scans don't pick up micrscopic disease or new primaries, they only pick up tumors of a certain size.  Stage 0 and stage I have low recurrence rates and the most likely venue for spread would be lymph nodes, not internal tumors.  Scans also find "benign beasties" that almost everyone has.  This means that if they see something, then they have to rescan or biopsy on the extremely unlikely chance that it is melanoma.  They already know it isn't, but they have to do CYA followups.  $$$ and time and anxiety and hassle for something benign.  Things like lung nodules are EXTREMELY common in the general population, but since melanoma can spread to the lungs, you now have to test and biopsy or rescan just to make sure.

* Scans have radiation – lots of it.  Do you need to expose yourself to cancer causing radiation on the extremely rare chance that you find an advanced tumor?

* Scans haven't been shown to increase survival.  This is why there are institutions that don't scan stage III and stage IV regularly – unless there are symptoms.  Scans are big business and make lots of money for institutions. 

* Palpating your lymph node basins are a much more important diagnostic tool than scans for early stagers, since roughly 90% of recurrences happen via the lymphatic system.

* The internet is a terrible place to look for "reality" when it comes to recurrences.  Those that recur show up on internet sites.  The vast majorities who DON'T recur never post again.  You can't compare yourself to anyone who posts because you can't know that even they know their whole story.  I can't tell you over the years how many people I've met who THINK they are spouting all the facts about their case, but they have it wrong.  In addition, different people, different environments, different immune systems – what happens to one person doesn't ever mean it will happen to you.  Perspective is definitely needed when reviewing stories on the internet.  They can tell you to be vigilant, yes.  But don't jump to the paranoia camp because you see the exceptions, not the norm on the internet. 

I have been a moderater for a stage 0/1 board for almost 10 years and the board has basically died a quiet death as most of these early stagers have moved on with their lives and don't want to participate.  A few still hang around if there are questions, but basically all have moved on because they aren't having a recurrence.  That's the reality I see.

Janner's reply is thorough as always.  There is nothing Janner said that I don't agree with.  I too would be concerned about the level of radiation involved in CT and PET/CT scans and how to balance the small risk of recurrence against the level of radiation from the scans.

I do feel that it would be beneficial for stage I melanoma patients to be monitored more closely, even with yearly visits to an oncologist, with at minimum a chest x-ray.  I feel that stage I melanoma patients would benefit from lifelong dermatology followup, even if at less frequent intervals, and I feel that ALL melanoma patients, even early stagers, should be warned to pay close to attention to their bodies and be on the lookout for unusual symptoms and have a low threshold for following up with a doctor.

That said, there is a fine line between cautious and paranoid, and it is extremely challenging to walk that line.

Do we all need scans at regular intervals?  Probably not.  If you can afford out-of-pocket a PET/CT every few years, would I support that?  Yeah, I would, depending.  It is incredibly expensve, but you may be able to find an oncologist group locally that does these scans and offers them at a dramatically reduced rate to patients whose insurance refuses them.  I would tend to support this specifically for anyone with an early stage melanoma that is unusual in any way:  ulcerated, high mitotic rate, etc.  Patients with early stage mucosal melanoma should be having them regularly anyway for the first few years as they are at higher risk than average.

Otherwise, Janner makes a very good point when she says that the people most likely to be posting on internet forums tend to be the very few who make up the exception, rather than the rule, those very few early stagers who recur or develop distant metastasis.  The very fact that they exist is why I say I would support somewhat more frequent PET-CTs, though they are rare.  I don't think there is a lot of information available on which early stagers go on to develop metastasis, though there is some data pointing to factors like mitotic rate and ulceration.

I realize that PET-CT can cause false positive false alarms, and that they are not perfect.  Personally, I would advocate having one done every once in awhile just to be on the safe side.  It would be very nice if insurance recognized that for the small percentage who may develop metastatic disease, these scans might be helpful, even if spaced farther apart, and even worth the radiation risk to the vast majority who will never experience it, if it could help identify quickly the small percentage who do.  The key word being quickly.  If I were to suddenly find myself at stage IV, I would like to know I have caught it quickly, and have as much time as possible to seek treatment for it.

Janner's reply is thorough as always.  There is nothing Janner said that I don't agree with.  I too would be concerned about the level of radiation involved in CT and PET/CT scans and how to balance the small risk of recurrence against the level of radiation from the scans.

I do feel that it would be beneficial for stage I melanoma patients to be monitored more closely, even with yearly visits to an oncologist, with at minimum a chest x-ray.  I feel that stage I melanoma patients would benefit from lifelong dermatology followup, even if at less frequent intervals, and I feel that ALL melanoma patients, even early stagers, should be warned to pay close to attention to their bodies and be on the lookout for unusual symptoms and have a low threshold for following up with a doctor.

That said, there is a fine line between cautious and paranoid, and it is extremely challenging to walk that line.

Do we all need scans at regular intervals?  Probably not.  If you can afford out-of-pocket a PET/CT every few years, would I support that?  Yeah, I would, depending.  It is incredibly expensve, but you may be able to find an oncologist group locally that does these scans and offers them at a dramatically reduced rate to patients whose insurance refuses them.  I would tend to support this specifically for anyone with an early stage melanoma that is unusual in any way:  ulcerated, high mitotic rate, etc.  Patients with early stage mucosal melanoma should be having them regularly anyway for the first few years as they are at higher risk than average.

Otherwise, Janner makes a very good point when she says that the people most likely to be posting on internet forums tend to be the very few who make up the exception, rather than the rule, those very few early stagers who recur or develop distant metastasis.  The very fact that they exist is why I say I would support somewhat more frequent PET-CTs, though they are rare.  I don't think there is a lot of information available on which early stagers go on to develop metastasis, though there is some data pointing to factors like mitotic rate and ulceration.

I realize that PET-CT can cause false positive false alarms, and that they are not perfect.  Personally, I would advocate having one done every once in awhile just to be on the safe side.  It would be very nice if insurance recognized that for the small percentage who may develop metastatic disease, these scans might be helpful, even if spaced farther apart, and even worth the radiation risk to the vast majority who will never experience it, if it could help identify quickly the small percentage who do.  The key word being quickly.  If I were to suddenly find myself at stage IV, I would like to know I have caught it quickly, and have as much time as possible to seek treatment for it.

Janner's reply is thorough as always.  There is nothing Janner said that I don't agree with.  I too would be concerned about the level of radiation involved in CT and PET/CT scans and how to balance the small risk of recurrence against the level of radiation from the scans.

I do feel that it would be beneficial for stage I melanoma patients to be monitored more closely, even with yearly visits to an oncologist, with at minimum a chest x-ray.  I feel that stage I melanoma patients would benefit from lifelong dermatology followup, even if at less frequent intervals, and I feel that ALL melanoma patients, even early stagers, should be warned to pay close to attention to their bodies and be on the lookout for unusual symptoms and have a low threshold for following up with a doctor.

That said, there is a fine line between cautious and paranoid, and it is extremely challenging to walk that line.

Do we all need scans at regular intervals?  Probably not.  If you can afford out-of-pocket a PET/CT every few years, would I support that?  Yeah, I would, depending.  It is incredibly expensve, but you may be able to find an oncologist group locally that does these scans and offers them at a dramatically reduced rate to patients whose insurance refuses them.  I would tend to support this specifically for anyone with an early stage melanoma that is unusual in any way:  ulcerated, high mitotic rate, etc.  Patients with early stage mucosal melanoma should be having them regularly anyway for the first few years as they are at higher risk than average.

Otherwise, Janner makes a very good point when she says that the people most likely to be posting on internet forums tend to be the very few who make up the exception, rather than the rule, those very few early stagers who recur or develop distant metastasis.  The very fact that they exist is why I say I would support somewhat more frequent PET-CTs, though they are rare.  I don't think there is a lot of information available on which early stagers go on to develop metastasis, though there is some data pointing to factors like mitotic rate and ulceration.

I realize that PET-CT can cause false positive false alarms, and that they are not perfect.  Personally, I would advocate having one done every once in awhile just to be on the safe side.  It would be very nice if insurance recognized that for the small percentage who may develop metastatic disease, these scans might be helpful, even if spaced farther apart, and even worth the radiation risk to the vast majority who will never experience it, if it could help identify quickly the small percentage who do.  The key word being quickly.  If I were to suddenly find myself at stage IV, I would like to know I have caught it quickly, and have as much time as possible to seek treatment for it.