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Stage IV NED follow-up scan schedule? Advice?

Forums General Melanoma Community Stage IV NED follow-up scan schedule? Advice?

  • Post
    Kim K
    Participant

    Hi all,

    Hi all,

    As seems to be a problem in the field of oncology, what do do with your patient after they are no longer receiving treatment.  It has been 5 months since my last scans showed I am NED (hooray!) yet my oncology team still hadn't come up with any kind of follow up schedule for me.  Only after I flew to Honolulu for some face time (my primary onc. had a sudden emergency so I saw his associate) did I get any feedback.  My oncs. almost want to have my primary doc who knows nothing of melanoma to follow me, since I am no longer in active treatment and NED.  I told them NO because my follow up should include PET.  Queen's Hospital in Honolulu has the only PET/CT machine in the entire state.  Why would I want anyone here in Hilo to follow me when they don't have the equipment (or expertise) to do so?

    Question – for those of you NED and not in a clinical trial, what are your follow-up scans and when.

    I know there is no consensus on the issue, but for me, I do not buy into lets wait until you have symptoms.  By then you tend to be toast.  I have creepy crawly smoldering disease that showed up in only 2 spots after 7 years at stage IIA.  IL-2 cleared my final lesion this summer.  I DID get the associate (who saw me while in the ICU for IL-2) to agree that there needed to be some sort of scanning follow-up since I have no symptoms or abnormalities that can be detected with blood work or on a physical.

    The doctor ordered a chest CT and brain MRI with a PET.  My concern with that plan was detecting any abdominal disease seeing as mel also likes the liver and small intestine.  He said he didn't think it was necessary since my mel came back to my lung and chest wall.  I disagree and want to make sure it doesn't pop back up elsewhere and we miss it.  I am sure the PET will catch it but there are also false negatives with PET that CT can detect.  Still no word as to a routine scanning schedule, let alone the kind of scans and locations to be scanned.

    My gut tells me to do scans every 6 months for 2 years, and then if nothing, annually.  They should include brain MRI, PET / CT & chest / abdomen / pelvis CT.  I know if mel is planning on returning it will most likely do so within the next 2 years.  That being said, since I seem to have the slow moving mellower form of mel, I think it is OK to do scans every 6-12 months unless symptoms arise.  I just can't get anyone to commit to a game plan and I am the one pushing everything.

    My goal is to catch any recurrence early so I can buy as much time for treatment or a trial when it may still actually make a difference.  I don't want to wait until my tumor burden makes itself painfully clear.  In the meantime, I deeply feel I will be one of the few that will never hear from mel again.  I hope I am right on that.  If not, I want to be as proactive as possible yet avoid necessary and costly scans.

    Thoughts anyone?

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  • Replies
      AlisonC
      Participant

      Hi Kim !

      I am totally with you.  I had a "specialist" consult at the Sydney Melanoma Unit and their take on it (bearing in mind I am only stage III, not IV) was "why look for it ? If it comes back there's nothing we can do for you anyway".  To which I thought "rubbish !".  There are heaps of people here who are alive simply because they were vigilant.

      I guess it depends on what your insurance will cover but FWIW, my onco here treats stage III the same as stageIV for surveillance purposes.  That's the standard 3 months (PET/CT and brain MRI) for the first 2 years, then 6 monthly till 5 and then yearly. I'm at 9 years NED now and we're going to stretch to 18 months for the first time ever to reach the 10 year mark (fingers crossed).

      So if I were stage IV and only 5 months post-disease, I'd be clamouring for 3 monthly or at least 6 monthly scans to check.  I hope you can talk your team into the same…

      AlisonC

      StageIIIB

      NED since 2001

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      AlisonC
      Participant

      Hi Kim !

      I am totally with you.  I had a "specialist" consult at the Sydney Melanoma Unit and their take on it (bearing in mind I am only stage III, not IV) was "why look for it ? If it comes back there's nothing we can do for you anyway".  To which I thought "rubbish !".  There are heaps of people here who are alive simply because they were vigilant.

      I guess it depends on what your insurance will cover but FWIW, my onco here treats stage III the same as stageIV for surveillance purposes.  That's the standard 3 months (PET/CT and brain MRI) for the first 2 years, then 6 monthly till 5 and then yearly. I'm at 9 years NED now and we're going to stretch to 18 months for the first time ever to reach the 10 year mark (fingers crossed).

      So if I were stage IV and only 5 months post-disease, I'd be clamouring for 3 monthly or at least 6 monthly scans to check.  I hope you can talk your team into the same…

      AlisonC

      StageIIIB

      NED since 2001

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      King
      Participant

      Hi Kim,

       

      First of all, my Stage IV and your Stage IV aren't very similar.  Sometimes I think there should be Stage IVA, Stage IVB and Stage IVC.  But I will share what my scan schedule is.  I have just graduated to a 4 month scan schedule from a 3 month schedule.  I have gone 2 years now since my last recurrence.  My current medical oncologist (since 2008 since my previous oncologist transferred to CA) is not a believer in PET/CTs.  That was really difficult for me to accept since my liver met in 2005 was detected on a PET/CT and my recurrence of a peri-pancreatic tumor in early 2008 was seen on a PET/CT.  But I now have a CT of the neck, thorax, abdomen and pelvis (with and without contrast) every 4 months and a MRI of the brain every 6 months.  I had those same scans on a 3 month schedule (MRI of the brain has always been every 6 months) for 2 years after my recurrence in 2008.

       

      You are well aware that you have to be your own advocate.

       

      Wishing you and your girls a happy holiday season.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Hi Kim,

       

      First of all, my Stage IV and your Stage IV aren't very similar.  Sometimes I think there should be Stage IVA, Stage IVB and Stage IVC.  But I will share what my scan schedule is.  I have just graduated to a 4 month scan schedule from a 3 month schedule.  I have gone 2 years now since my last recurrence.  My current medical oncologist (since 2008 since my previous oncologist transferred to CA) is not a believer in PET/CTs.  That was really difficult for me to accept since my liver met in 2005 was detected on a PET/CT and my recurrence of a peri-pancreatic tumor in early 2008 was seen on a PET/CT.  But I now have a CT of the neck, thorax, abdomen and pelvis (with and without contrast) every 4 months and a MRI of the brain every 6 months.  I had those same scans on a 3 month schedule (MRI of the brain has always been every 6 months) for 2 years after my recurrence in 2008.

       

      You are well aware that you have to be your own advocate.

       

      Wishing you and your girls a happy holiday season.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      washoegal
      Participant
      First I’ve heard of not having regular scans. I’m stage 3a and I have PET/CT every 6 months, will go to annual after 2 years. My primary was on the trunk, 2 lymph nodes with cancer under arm. Since I have a history of atypical moles, Onc wants me checked by derm every 3 months.

      I keep my GP in loop only because he is the one who originally cut out the Mel and I really trust him as much as any one to take care of me.

      The way it was explained to me, the combo PET/CT scan really tells them a lot more than one or the other. You really need to have a heart to heart talk with your Onc and find out what is going on. None of what you have posted makes any sense to me.

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      washoegal
      Participant
      First I’ve heard of not having regular scans. I’m stage 3a and I have PET/CT every 6 months, will go to annual after 2 years. My primary was on the trunk, 2 lymph nodes with cancer under arm. Since I have a history of atypical moles, Onc wants me checked by derm every 3 months.

      I keep my GP in loop only because he is the one who originally cut out the Mel and I really trust him as much as any one to take care of me.

      The way it was explained to me, the combo PET/CT scan really tells them a lot more than one or the other. You really need to have a heart to heart talk with your Onc and find out what is going on. None of what you have posted makes any sense to me.

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      lhaley
      Participant

      I've been stage IV since March 06. Had been NED with interuptions from too many recurrances.    Mine has been slow growing. 2 years ago I was just moving on to 6 month scans (had been PET/CTevery 3 months ) when I had the recurrance in bladder.  Unfortunately I've never been able to extend past every 3 months!  This time it's 2 months since they are watching a lung nodule.  I was having a cystoscopy every 3 months and after I had 1 year clear I moved to 6 months – next cysto is in 7 weeks.

      I totally agree on PETs for those of us who are NED or watching. My mets have jumped all over the body but seem to just show up 1 at a time.  At first I was able to discover the tumors myself. The last 2 PETS have picked something up.

      I've been followed by a local oncologist as well as a melanoma specialist, only seeing him when a new recurrance arrived. After my surgery 2 months ago I decided to travel every 3 months to the specialist. I wanted answers when the scans showed something and didn't want to wait until I had an appointment. Little did I know that the very next scan would show something.  It saved me about a week of anxiety!  I hope your Dr. can understand that you have a real need to be followed up by someone who understands melanoma.

      I still am continuing to go to a local oncologist also. She understands that she is there if I need her but with any melanoma related issues I will go to him.  About a month ago I was having dizzy issues. The local onc scheduled the mri – all was clear.  Otherwise I have not had a brain mri since 09 when I had my second recurrance. 

      Best wishes,

      Linda

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      lhaley
      Participant

      I've been stage IV since March 06. Had been NED with interuptions from too many recurrances.    Mine has been slow growing. 2 years ago I was just moving on to 6 month scans (had been PET/CTevery 3 months ) when I had the recurrance in bladder.  Unfortunately I've never been able to extend past every 3 months!  This time it's 2 months since they are watching a lung nodule.  I was having a cystoscopy every 3 months and after I had 1 year clear I moved to 6 months – next cysto is in 7 weeks.

      I totally agree on PETs for those of us who are NED or watching. My mets have jumped all over the body but seem to just show up 1 at a time.  At first I was able to discover the tumors myself. The last 2 PETS have picked something up.

      I've been followed by a local oncologist as well as a melanoma specialist, only seeing him when a new recurrance arrived. After my surgery 2 months ago I decided to travel every 3 months to the specialist. I wanted answers when the scans showed something and didn't want to wait until I had an appointment. Little did I know that the very next scan would show something.  It saved me about a week of anxiety!  I hope your Dr. can understand that you have a real need to be followed up by someone who understands melanoma.

      I still am continuing to go to a local oncologist also. She understands that she is there if I need her but with any melanoma related issues I will go to him.  About a month ago I was having dizzy issues. The local onc scheduled the mri – all was clear.  Otherwise I have not had a brain mri since 09 when I had my second recurrance. 

      Best wishes,

      Linda

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      Harry in Fair Oaks
      Participant

      Every situation is of course different.  When I was a newly diagnosed Stage IV (met to lung), I had scans every 3 to 4 months for a couple of years.  At that time they were watching other tiny features in my lungs (they never grew, so most likely benign), also something in the dome of my liver (it disappeared).

      Then for the next few years it was every 6 months.  Three years ago I was put on an annual schedule.  My oncologist thinks this is a good standard of care for the foreseeable future.

      Best wishes,

      Harry (diagnosed Stage IV in 2000, NED)

       

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      Harry in Fair Oaks
      Participant

      Every situation is of course different.  When I was a newly diagnosed Stage IV (met to lung), I had scans every 3 to 4 months for a couple of years.  At that time they were watching other tiny features in my lungs (they never grew, so most likely benign), also something in the dome of my liver (it disappeared).

      Then for the next few years it was every 6 months.  Three years ago I was put on an annual schedule.  My oncologist thinks this is a good standard of care for the foreseeable future.

      Best wishes,

      Harry (diagnosed Stage IV in 2000, NED)

       

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      TAC
      Participant

      Kim, I'm in Atlanta and remember you from the melanoma support group at Emory. I get scans about every 5-6 months even though I am Stage IIIb. An extenuating circumstance for me is that I've also had renal cell carcinoma and lung cancer diagnosed as a result of my regular scans. No symptoms with either cancer. Being proactive and thankfully my oncologist agrees with regular scans has enabled the cancers to be caught early so no further treatment required after my left kidney and upper left lobe of my lung were removed. Best wishes to you.

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      TAC
      Participant

      Kim, I'm in Atlanta and remember you from the melanoma support group at Emory. I get scans about every 5-6 months even though I am Stage IIIb. An extenuating circumstance for me is that I've also had renal cell carcinoma and lung cancer diagnosed as a result of my regular scans. No symptoms with either cancer. Being proactive and thankfully my oncologist agrees with regular scans has enabled the cancers to be caught early so no further treatment required after my left kidney and upper left lobe of my lung were removed. Best wishes to you.

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      LynnLuc
      Participant

      They work so hard to get stage 4 NED for us…but what then…My Mayo onc and my North Dakota Onc gave me no direction nor recommendations for trials so I had to search them out myself…they just wanted to wait until it comes back..

      I wanted to try and do something to prevent it from coming back  while it was microcells instead of measurable disease again. I was told I had a 99.99% chance of it returning without any more treatment so I  found a trial for NED stage 4. I personally was afraid to wait it out and see if and when it came back…Trials for NED are far and few between. Good luck in whatever you do. I get CT/MRI's for the trial but no PET. I was getting them every 3 months.

      Dec 26 I will be NED for 8 months.

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      LynnLuc
      Participant

      They work so hard to get stage 4 NED for us…but what then…My Mayo onc and my North Dakota Onc gave me no direction nor recommendations for trials so I had to search them out myself…they just wanted to wait until it comes back..

      I wanted to try and do something to prevent it from coming back  while it was microcells instead of measurable disease again. I was told I had a 99.99% chance of it returning without any more treatment so I  found a trial for NED stage 4. I personally was afraid to wait it out and see if and when it came back…Trials for NED are far and few between. Good luck in whatever you do. I get CT/MRI's for the trial but no PET. I was getting them every 3 months.

      Dec 26 I will be NED for 8 months.

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      2atlascedars
      Participant
      Hi Kim,

      I was wondering if any decisions have been made for your follow-up protocol.

      Also, as a Stage 2A myself, I am more than just a little horrified at what you have experienced. Thank goodness for that fortunate x-Ray by you chiropractor. Given your experience and medical background as a vet, I would LOVE to get your advice on what I should be doing for my follow-up at this point. My diagnosis sounds EXACTLY like yours…a slow growing melanoma with no signs of anything beyond a local occurrence. I am scheduled to be seen for my first 3 month follow-up appointment in February.

      Please email me, you will find my contact info on my profile page.

      I am hoping and praying for the best for you.

      Happy New Year!
      Mark (Stage 2A) from California

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      2atlascedars
      Participant
      Hi Kim,

      I was wondering if any decisions have been made for your follow-up protocol.

      Also, as a Stage 2A myself, I am more than just a little horrified at what you have experienced. Thank goodness for that fortunate x-Ray by you chiropractor. Given your experience and medical background as a vet, I would LOVE to get your advice on what I should be doing for my follow-up at this point. My diagnosis sounds EXACTLY like yours…a slow growing melanoma with no signs of anything beyond a local occurrence. I am scheduled to be seen for my first 3 month follow-up appointment in February.

      Please email me, you will find my contact info on my profile page.

      I am hoping and praying for the best for you.

      Happy New Year!
      Mark (Stage 2A) from California

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      ed_CT
      Participant

      I went Stage IV in July 2005. (liver  and Neck met)   I went on a trial of Nexavar /Temodar and was put on Scans every two months which lasted for about a year.   Then I got them to switch to every 3 months during the second year when it was pretty clear that something was working (I was NED by then).  After two years I stopped the Temodar and just took the Nexavar.  I can't remember exactly when but pretty soon after I was able to get my onc to agree to 4 month scans and then after about 3 1/2 years I got go  6 months. Last March I had a scan which was at a 9 month interval.  This was 3 months after I finally stopped all chemo (the Nexavar stopped).  After this my oncs wanted to be conservative and go back to a 6 month interval.   My last scan in Oct 2010 was clear but now my onc in New Haven wants to do another one in April (again 6 months)      I have an appointment this month with my other onc in Philadelphia and I'll ask her what she thinks. I'm pretty sure she'll be conservative too and opt for 6 months.   I'm starting to worry that all this scanning will lead to other problems.

       

      Best wishes

      Ed

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      ed_CT
      Participant

      I went Stage IV in July 2005. (liver  and Neck met)   I went on a trial of Nexavar /Temodar and was put on Scans every two months which lasted for about a year.   Then I got them to switch to every 3 months during the second year when it was pretty clear that something was working (I was NED by then).  After two years I stopped the Temodar and just took the Nexavar.  I can't remember exactly when but pretty soon after I was able to get my onc to agree to 4 month scans and then after about 3 1/2 years I got go  6 months. Last March I had a scan which was at a 9 month interval.  This was 3 months after I finally stopped all chemo (the Nexavar stopped).  After this my oncs wanted to be conservative and go back to a 6 month interval.   My last scan in Oct 2010 was clear but now my onc in New Haven wants to do another one in April (again 6 months)      I have an appointment this month with my other onc in Philadelphia and I'll ask her what she thinks. I'm pretty sure she'll be conservative too and opt for 6 months.   I'm starting to worry that all this scanning will lead to other problems.

       

      Best wishes

      Ed

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      MaryD
      Participant

      Hi Kim,

      My Drs. have also followed this protocol:  scans every 3 month following a recurrence.  After two years w/o any recurrences, they go to six month schedule (I just made that milestone in Oct so am now on the six month plan).   

      Have you thought about seeing a melanoma specialist on the mainland who could possibly collaborate with your Drs in Hawaii to ensure they are following you carefully?    I absolutely wouldn't settle for their more casual approach to this – sometimes we have to take an aggressive stance and light a fire under them.  We all know how unpredictable mel is and can't leave anything to chance.

      Good luck!

       

      Mary

       

       

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      MaryD
      Participant

      Hi Kim,

      My Drs. have also followed this protocol:  scans every 3 month following a recurrence.  After two years w/o any recurrences, they go to six month schedule (I just made that milestone in Oct so am now on the six month plan).   

      Have you thought about seeing a melanoma specialist on the mainland who could possibly collaborate with your Drs in Hawaii to ensure they are following you carefully?    I absolutely wouldn't settle for their more casual approach to this – sometimes we have to take an aggressive stance and light a fire under them.  We all know how unpredictable mel is and can't leave anything to chance.

      Good luck!

       

      Mary

       

       

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