No more scans?

Betsy,

   I can't imagine being told no more scans! We are just at the point where my husband is finishing vaccine injections in a clinical trial, and I'm a mess – even with the scans. My doctor says it's normal for a spouse or patient to go through this at the end of an active fighting period, and I'm adjusting to "watch and wait."
   On the other hand, I'm so encouraged by your post! If Ron can make it to five years without recurrence even after all his lymph node involvement, then I don't see why Robert can't make it too.

   Thanks for posting. Feel free to email me off-list if you want to keep in touch.

~Hazel

Betsy,

   I can't imagine being told no more scans! We are just at the point where my husband is finishing vaccine injections in a clinical trial, and I'm a mess – even with the scans. My doctor says it's normal for a spouse or patient to go through this at the end of an active fighting period, and I'm adjusting to "watch and wait."
   On the other hand, I'm so encouraged by your post! If Ron can make it to five years without recurrence even after all his lymph node involvement, then I don't see why Robert can't make it too.

   Thanks for posting. Feel free to email me off-list if you want to keep in touch.

~Hazel

Betsy,

   I can't imagine being told no more scans! We are just at the point where my husband is finishing vaccine injections in a clinical trial, and I'm a mess – even with the scans. My doctor says it's normal for a spouse or patient to go through this at the end of an active fighting period, and I'm adjusting to "watch and wait."
   On the other hand, I'm so encouraged by your post! If Ron can make it to five years without recurrence even after all his lymph node involvement, then I don't see why Robert can't make it too.

   Thanks for posting. Feel free to email me off-list if you want to keep in touch.

~Hazel

I was encouraged by your posting.  I too am stage IIIC and my lump in my armpit appeared with weeks without warning in July 2012.  It has been a roller coaster.  I have scans now every 3 months.  Is the decision to not do scans after 5 years a oncologist decision or an insurance decision?  My best to you and your husband.  Great news with regard to staying stage IIIC.

I was encouraged by your posting.  I too am stage IIIC and my lump in my armpit appeared with weeks without warning in July 2012.  It has been a roller coaster.  I have scans now every 3 months.  Is the decision to not do scans after 5 years a oncologist decision or an insurance decision?  My best to you and your husband.  Great news with regard to staying stage IIIC.

I was encouraged by your posting.  I too am stage IIIC and my lump in my armpit appeared with weeks without warning in July 2012.  It has been a roller coaster.  I have scans now every 3 months.  Is the decision to not do scans after 5 years a oncologist decision or an insurance decision?  My best to you and your husband.  Great news with regard to staying stage IIIC.

Dear Betsy!  Can I ask about Ron's primary depth – is it 0.26 mm ?

Dear Betsy!  Can I ask about Ron's primary depth – is it 0.26 mm ?

Dear Betsy!  Can I ask about Ron's primary depth – is it 0.26 mm ?

Betsy, cograts to you and Ron for 4 years of clear scans! As far as recommended scan frequency, at the end of the following webinar, that is discussed by 3 melanoma oncologists. There are slightly differing opinions, but at least one docs says something like 80% of recurrences are discovered by patients or physical examination by the doctor, only about 20% are detected by scans. So that onc is on the low end of scheduling frequency. I forget all the details, but it might provide some input into yours and Ron's decision. The part of the webinar about recommended frequency scanning is in the last 10-15 minutes, I think.  

FWIW I'm getting scanned every 4 months at the moment, 22 months after my last recurrence. I would be most nervous about not having regular MRIs becaue they often would catch brain mets earlier than self-detection (my experience). But that's just my particular issue/area of focus.

Tim/MRF: these webinars are incredibly useful, but extremely hard to find on this site. I could only find this by going back several months on the calendar of invents under "Get Involved". These webinars are so great/useful, it's a shame they're buried so deeply on the site where they're almost impossible to find.  

– Kyle

Betsy, cograts to you and Ron for 4 years of clear scans! As far as recommended scan frequency, at the end of the following webinar, that is discussed by 3 melanoma oncologists. There are slightly differing opinions, but at least one docs says something like 80% of recurrences are discovered by patients or physical examination by the doctor, only about 20% are detected by scans. So that onc is on the low end of scheduling frequency. I forget all the details, but it might provide some input into yours and Ron's decision. The part of the webinar about recommended frequency scanning is in the last 10-15 minutes, I think.  

FWIW I'm getting scanned every 4 months at the moment, 22 months after my last recurrence. I would be most nervous about not having regular MRIs becaue they often would catch brain mets earlier than self-detection (my experience). But that's just my particular issue/area of focus.

Tim/MRF: these webinars are incredibly useful, but extremely hard to find on this site. I could only find this by going back several months on the calendar of invents under "Get Involved". These webinars are so great/useful, it's a shame they're buried so deeply on the site where they're almost impossible to find.  

– Kyle

Betsy, cograts to you and Ron for 4 years of clear scans! As far as recommended scan frequency, at the end of the following webinar, that is discussed by 3 melanoma oncologists. There are slightly differing opinions, but at least one docs says something like 80% of recurrences are discovered by patients or physical examination by the doctor, only about 20% are detected by scans. So that onc is on the low end of scheduling frequency. I forget all the details, but it might provide some input into yours and Ron's decision. The part of the webinar about recommended frequency scanning is in the last 10-15 minutes, I think.  

FWIW I'm getting scanned every 4 months at the moment, 22 months after my last recurrence. I would be most nervous about not having regular MRIs becaue they often would catch brain mets earlier than self-detection (my experience). But that's just my particular issue/area of focus.

Tim/MRF: these webinars are incredibly useful, but extremely hard to find on this site. I could only find this by going back several months on the calendar of invents under "Get Involved". These webinars are so great/useful, it's a shame they're buried so deeply on the site where they're almost impossible to find.  

– Kyle

I have been stage IV since 2009.  I became NED in July 2010.  Up until now I have been getting the works every 6 months – Brain MRI, chest CT, whole body PET, and bloodwork.  Based upon my response to IL-2 it appears I have a durable remission and will probably die from something else like heart disease or doing something stupid that makes me famous on Spike TV 1000 ways to die.

On a more serious note, because of the high exposure to radiation and contrast materials, plus a major study demonstrating no-one with a complete response to IL-2 has had a reoccurance if they haven't relapsed by 30 months post treatment, we decided to do the following:

Alternate whole body PET with whole body CT (no need to drink the contrast though) every 6 months, annual brain MRI.  My onc is very very respectful of mel in spite of my good fortune.  He dosen't want me to go more than 6 months without some sort of a scan.  He feels that even though I don't do the GI CT contrast, a PET would pick up anything on a subsequent scan.

I agree, waitng until you have clinical signs is like closing the barn door after the horse got out.  That mentality needs to change in light of the new drugs and clinical trials.  The earlier the better as far as catching mets.

Talk to your doctor about an annual CT scan or something if you are uncomfortable with it.  I agree, stage 3c is knocking on the door of stage IV.  Glad you have gone so long (fingers crossed) as you have fighting this.

IMHO – I would opt for some sort of surveillance scan at least annually.  Seems like a nice balance between doing nothing and getting too much radiation / contrast / false positives.

I have been stage IV since 2009.  I became NED in July 2010.  Up until now I have been getting the works every 6 months – Brain MRI, chest CT, whole body PET, and bloodwork.  Based upon my response to IL-2 it appears I have a durable remission and will probably die from something else like heart disease or doing something stupid that makes me famous on Spike TV 1000 ways to die.

On a more serious note, because of the high exposure to radiation and contrast materials, plus a major study demonstrating no-one with a complete response to IL-2 has had a reoccurance if they haven't relapsed by 30 months post treatment, we decided to do the following:

Alternate whole body PET with whole body CT (no need to drink the contrast though) every 6 months, annual brain MRI.  My onc is very very respectful of mel in spite of my good fortune.  He dosen't want me to go more than 6 months without some sort of a scan.  He feels that even though I don't do the GI CT contrast, a PET would pick up anything on a subsequent scan.

I agree, waitng until you have clinical signs is like closing the barn door after the horse got out.  That mentality needs to change in light of the new drugs and clinical trials.  The earlier the better as far as catching mets.

Talk to your doctor about an annual CT scan or something if you are uncomfortable with it.  I agree, stage 3c is knocking on the door of stage IV.  Glad you have gone so long (fingers crossed) as you have fighting this.

IMHO – I would opt for some sort of surveillance scan at least annually.  Seems like a nice balance between doing nothing and getting too much radiation / contrast / false positives.

I have been stage IV since 2009.  I became NED in July 2010.  Up until now I have been getting the works every 6 months – Brain MRI, chest CT, whole body PET, and bloodwork.  Based upon my response to IL-2 it appears I have a durable remission and will probably die from something else like heart disease or doing something stupid that makes me famous on Spike TV 1000 ways to die.

On a more serious note, because of the high exposure to radiation and contrast materials, plus a major study demonstrating no-one with a complete response to IL-2 has had a reoccurance if they haven't relapsed by 30 months post treatment, we decided to do the following:

Alternate whole body PET with whole body CT (no need to drink the contrast though) every 6 months, annual brain MRI.  My onc is very very respectful of mel in spite of my good fortune.  He dosen't want me to go more than 6 months without some sort of a scan.  He feels that even though I don't do the GI CT contrast, a PET would pick up anything on a subsequent scan.

I agree, waitng until you have clinical signs is like closing the barn door after the horse got out.  That mentality needs to change in light of the new drugs and clinical trials.  The earlier the better as far as catching mets.

Talk to your doctor about an annual CT scan or something if you are uncomfortable with it.  I agree, stage 3c is knocking on the door of stage IV.  Glad you have gone so long (fingers crossed) as you have fighting this.

IMHO – I would opt for some sort of surveillance scan at least annually.  Seems like a nice balance between doing nothing and getting too much radiation / contrast / false positives.

I totally disagree with no scans. My husband had stage 2b (neg sentinel node biopsy) 12 years ago

and now he has melanoma in lungs, brain, abdomen and liver with NO SYMPTOMS. He went to derm

annually and had a chest xray in July 2012. In January 2013 with just a cough as a symptom he had a spot

on a chest xray, then CT, then biopsy, by Feb 1, melanoma everywhere. I know everyone is different, I just

think at least an annual Pet would be called for for anyone with a history of the disease. Good luck to you

stay well!!! All the best, Vicki

I totally disagree with no scans. My husband had stage 2b (neg sentinel node biopsy) 12 years ago

and now he has melanoma in lungs, brain, abdomen and liver with NO SYMPTOMS. He went to derm

annually and had a chest xray in July 2012. In January 2013 with just a cough as a symptom he had a spot

on a chest xray, then CT, then biopsy, by Feb 1, melanoma everywhere. I know everyone is different, I just

think at least an annual Pet would be called for for anyone with a history of the disease. Good luck to you

stay well!!! All the best, Vicki

I totally disagree with no scans. My husband had stage 2b (neg sentinel node biopsy) 12 years ago

and now he has melanoma in lungs, brain, abdomen and liver with NO SYMPTOMS. He went to derm

annually and had a chest xray in July 2012. In January 2013 with just a cough as a symptom he had a spot

on a chest xray, then CT, then biopsy, by Feb 1, melanoma everywhere. I know everyone is different, I just

think at least an annual Pet would be called for for anyone with a history of the disease. Good luck to you

stay well!!! All the best, Vicki

I went back to that MRF video and took shorthand very rough summaries of what was said about scan frequency. Dr. Pavlick most directly addressed scan frequency for stage 3 patients. Participants:

Tim Turnham (MRF) lead the panel:

Dr. Lynn Schuchter, UPENN

Dr. Michael Atkins, Georgetown

Dr. Anna Pavlick, NYU

I've seen Dr. Pavlick mentioned in many posts, so now I've connected those with her appearnce here. 

The rough shorthand is from the video starting at 1:07:53, through 1:17…

Dr. Schuchter: CT gives good 3D scans of architecture of body.

PET/CT gives limited architectural pictures plus cancer, can be infection, inflammation or cancer. Not convinced it adds anything. If something lights up, have to go after it. Many times it turns out to be nothing but induces extra anxiety. If in transit disease, big lymph nodes, or an extremity, PET/CT is useful to determine best treatment. But have become more accustomed to doing CAT scans now. Also insurance companies are going this way too, less radiation with CT as well.

Dr. Pavlick: Setting is very important. For stage 3 NED we're monitoring for recurrence. Usually monitor with blood tests, physical examination and scans. Usually do scans every 6 or 9 months up until 5 years. Shouldn't worry if insurance denies PET scan in favor of CT scan, especially because lots of PET false positives. CT much less expensive than PET scans. Scans (whether PET or CT) should be done, sometimes alternate between PET and CT. Am using a lot less PET scans vs. CT now. 

Dr. Atkins: Too many false positives. Many findings are unactionable. Very useful to follow up something found on a CT scan or through physical examination. Not even sure even CT scans are that useful. Data shows that most recurrences are picked up by good history and physical exam, covers 80% of recurrences, or patient coming in with new symptoms, in which case scans are more likely to pick up true positives. May do x-rays once a year to examine lungs to decide whether it's worth doing a CT or not. May occasionally order a blood test to point to whether there might be any blood loss in GI tract, LDH to pick up possible rapidly dividing cells in body. Comparing data/results to other centers that use CT scans for surveillance, we're not seeing any difference how quickly recurrences are picked up. 

Tim (MRF): I know a patient diagnosed stage 3, not sure if it was a or b. After 15 years w/no recurrence, the patient is still going in for scans. How do you decide whether to keep surveillance/monitoring with scans?

Dr. Pavlick: Look at risk of recurrence. We used to do scans up to 10 years after last recurrence/NED. We don't do that any more. Because most recurrences occur within the first 2 to 3 years after remission, we do scans up until 5 years, we don't do scans any longer than 5 years now. 

Dr. Atkins: Did a study of patients that hadn't recurred at 3 years. Out of 50 patients, only 2 had some scan abnormality that turned out to be cancer. 4 false positive, 2 turned out to be cancer. In those 2, patient had symptoms that would have prompted us to do CT scans anyway. But there is value to still see doctor and dermatologist regularly. Doing random scans at some defined interval is not what picks it up most times. More it's your relationship with your doctor.

I went back to that MRF video and took shorthand very rough summaries of what was said about scan frequency. Dr. Pavlick most directly addressed scan frequency for stage 3 patients. Participants:

Tim Turnham (MRF) lead the panel:

Dr. Lynn Schuchter, UPENN

Dr. Michael Atkins, Georgetown

Dr. Anna Pavlick, NYU

I've seen Dr. Pavlick mentioned in many posts, so now I've connected those with her appearnce here. 

The rough shorthand is from the video starting at 1:07:53, through 1:17…

Dr. Schuchter: CT gives good 3D scans of architecture of body.

PET/CT gives limited architectural pictures plus cancer, can be infection, inflammation or cancer. Not convinced it adds anything. If something lights up, have to go after it. Many times it turns out to be nothing but induces extra anxiety. If in transit disease, big lymph nodes, or an extremity, PET/CT is useful to determine best treatment. But have become more accustomed to doing CAT scans now. Also insurance companies are going this way too, less radiation with CT as well.

Dr. Pavlick: Setting is very important. For stage 3 NED we're monitoring for recurrence. Usually monitor with blood tests, physical examination and scans. Usually do scans every 6 or 9 months up until 5 years. Shouldn't worry if insurance denies PET scan in favor of CT scan, especially because lots of PET false positives. CT much less expensive than PET scans. Scans (whether PET or CT) should be done, sometimes alternate between PET and CT. Am using a lot less PET scans vs. CT now. 

Dr. Atkins: Too many false positives. Many findings are unactionable. Very useful to follow up something found on a CT scan or through physical examination. Not even sure even CT scans are that useful. Data shows that most recurrences are picked up by good history and physical exam, covers 80% of recurrences, or patient coming in with new symptoms, in which case scans are more likely to pick up true positives. May do x-rays once a year to examine lungs to decide whether it's worth doing a CT or not. May occasionally order a blood test to point to whether there might be any blood loss in GI tract, LDH to pick up possible rapidly dividing cells in body. Comparing data/results to other centers that use CT scans for surveillance, we're not seeing any difference how quickly recurrences are picked up. 

Tim (MRF): I know a patient diagnosed stage 3, not sure if it was a or b. After 15 years w/no recurrence, the patient is still going in for scans. How do you decide whether to keep surveillance/monitoring with scans?

Dr. Pavlick: Look at risk of recurrence. We used to do scans up to 10 years after last recurrence/NED. We don't do that any more. Because most recurrences occur within the first 2 to 3 years after remission, we do scans up until 5 years, we don't do scans any longer than 5 years now. 

Dr. Atkins: Did a study of patients that hadn't recurred at 3 years. Out of 50 patients, only 2 had some scan abnormality that turned out to be cancer. 4 false positive, 2 turned out to be cancer. In those 2, patient had symptoms that would have prompted us to do CT scans anyway. But there is value to still see doctor and dermatologist regularly. Doing random scans at some defined interval is not what picks it up most times. More it's your relationship with your doctor.

I went back to that MRF video and took shorthand very rough summaries of what was said about scan frequency. Dr. Pavlick most directly addressed scan frequency for stage 3 patients. Participants:

Tim Turnham (MRF) lead the panel:

Dr. Lynn Schuchter, UPENN

Dr. Michael Atkins, Georgetown

Dr. Anna Pavlick, NYU

I've seen Dr. Pavlick mentioned in many posts, so now I've connected those with her appearnce here. 

The rough shorthand is from the video starting at 1:07:53, through 1:17…

Dr. Schuchter: CT gives good 3D scans of architecture of body.

PET/CT gives limited architectural pictures plus cancer, can be infection, inflammation or cancer. Not convinced it adds anything. If something lights up, have to go after it. Many times it turns out to be nothing but induces extra anxiety. If in transit disease, big lymph nodes, or an extremity, PET/CT is useful to determine best treatment. But have become more accustomed to doing CAT scans now. Also insurance companies are going this way too, less radiation with CT as well.

Dr. Pavlick: Setting is very important. For stage 3 NED we're monitoring for recurrence. Usually monitor with blood tests, physical examination and scans. Usually do scans every 6 or 9 months up until 5 years. Shouldn't worry if insurance denies PET scan in favor of CT scan, especially because lots of PET false positives. CT much less expensive than PET scans. Scans (whether PET or CT) should be done, sometimes alternate between PET and CT. Am using a lot less PET scans vs. CT now. 

Dr. Atkins: Too many false positives. Many findings are unactionable. Very useful to follow up something found on a CT scan or through physical examination. Not even sure even CT scans are that useful. Data shows that most recurrences are picked up by good history and physical exam, covers 80% of recurrences, or patient coming in with new symptoms, in which case scans are more likely to pick up true positives. May do x-rays once a year to examine lungs to decide whether it's worth doing a CT or not. May occasionally order a blood test to point to whether there might be any blood loss in GI tract, LDH to pick up possible rapidly dividing cells in body. Comparing data/results to other centers that use CT scans for surveillance, we're not seeing any difference how quickly recurrences are picked up. 

Tim (MRF): I know a patient diagnosed stage 3, not sure if it was a or b. After 15 years w/no recurrence, the patient is still going in for scans. How do you decide whether to keep surveillance/monitoring with scans?

Dr. Pavlick: Look at risk of recurrence. We used to do scans up to 10 years after last recurrence/NED. We don't do that any more. Because most recurrences occur within the first 2 to 3 years after remission, we do scans up until 5 years, we don't do scans any longer than 5 years now. 

Dr. Atkins: Did a study of patients that hadn't recurred at 3 years. Out of 50 patients, only 2 had some scan abnormality that turned out to be cancer. 4 false positive, 2 turned out to be cancer. In those 2, patient had symptoms that would have prompted us to do CT scans anyway. But there is value to still see doctor and dermatologist regularly. Doing random scans at some defined interval is not what picks it up most times. More it's your relationship with your doctor.