The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Confusion about findings on PET scan versus CT scan

Forums General Melanoma Community Confusion about findings on PET scan versus CT scan

  • Post
    Justme
    Participant

    Hi,

    Background information, brother dx with melanoma from area on finger that was left untreated and undiagnosed for 9 months.  Had PET scan in June which lit up lymph nodes under same arm as finger and.  Finger was amputated, lymph nodes removed, one of 22 found positive, size 4.5 cm.  Very few of the nodes had normal color.

    Hi,

    Background information, brother dx with melanoma from area on finger that was left untreated and undiagnosed for 9 months.  Had PET scan in June which lit up lymph nodes under same arm as finger and.  Finger was amputated, lymph nodes removed, one of 22 found positive, size 4.5 cm.  Very few of the nodes had normal color.

     CT scan  May 2010 showed few pulmonary nodules two in right lung one being 6mm and the other 5mm. maybe one in left lung.  Third nodule in pelvic area 6mm soft tissue.              

     

    PET Scan lit up nodes in axillary area and the finger area. No nodes lit up in lungs in pet scan but saw nodules….may 2010

    In July 2010 nothing lit up on Pet scan or any nodules seen. 

    September of 2010 Began treatment of intefuron instead of interluekin as lungs were negative.  Is now on the self injections.

    Last week had another CT scan which showed significant growth of lung nodules and increase in amounts.  One physician has told them that the PET Scan is more accurate, the physician they spoke with said today that the CT scan is more accurate than the PET when it comes to the lungs. 

    Ideas, suggestions, questions,  Help Please?

    Just me

    Loading spinner
Viewing 3 reply threads
  • Replies
      JerryfromFauq
      Participant

      PET scn shows the SUV (sugar) uptake.  It does not tell what is cancer.  It points out areas to lk closer at.  PEET tld me t o watch my knee which was busted up in a bad car wreck, and to watch my mouth where I had had dentall surury.  It found lymph nodes in my groin but also totally missed a later tumr in the groin that had no SUV updake, but was growing like mad.  The CT scan is more defenative as to the actual measurements of the tumor and exposes oe to far less radiation.  My nclogist uses PET scans sparingly and CT to track his main concerns.

         IL-2 held my lungs stable for 20 months. 

      Has your tumors been check for c-kit or BRAF oncoproteins and mutatioons?  These tests can point the way for future treatment is there were to be a return.

      Loading spinner
        Justme
        Participant

        Hi Jerry

        Thank you for your response.  this is for my brother.

        His finger nor the lymph node was checked for c-kit or Braf oncoproteins or mutaions.

        He saw an oncologist at providence in portland that did the Pet scans.  Because the last scan did not light up on anything in the lungs or anywhere else he chose to go with the interferon treatments vs the interlukin.

        His other doc at Kaiser just ordered the Ct scan to check the lungs and says that they have grown significantly.

        If they have grown significantly from the last ct scan wouldn't they have lit up on the Pet in July?  Neither doc thought that the pelvic mass was anything to check out. 

        A web site said that the Pet was better able to detect much smaller microscopic areas of cancer than the CT but from what it sounds like the opposite is true?

         

        Thanks again

         

        Loading spinner
        JerryfromFauq
        Participant

        My deeper groin lymph nodes were the only tumors found by my PET scans.   As noted, a later groin tumr was total missed by the PET.  I had it removed anyway because it was causing an uncomfortable pressure on a ligament /nerves.  It grew to the size of the last joint in  my little finger in a months time and was very black when removed.  The surgeon and I were sure at first look that it was melanoma.  The pathology confirmed melanoma.  I supect that change means more than antythiing else with melanoma.  Change is probably the mosty important factor to look at when looking at moles as well.

            I have had several PET scans miss melanomas that I suspected and were later proved to be melanoma in spite of passing the PET.  PET scans are famous fr both false positives and false negatives.  The SUV  in PETs provide points to followup on, but knkowing nes own self may be more  important for surface and near surface inspections.

             The suspicions of the radialogist to an x-ray is what lead to a CT scan to show my lung tumors and the CT's showed rapid grwth, so I jumped into IL-2 immediately.  This was before Ipi was availale.

           One factor for both PET's and CT's can be the space between scan slices.  The finer the slice, the smaller the nodule that can be spotted.

            Have you looked at the scans?  The PET shows a bright blob, the CT shows a better defined mass to cmpare for change.

            Personally I have favored  IL-2 in the past since it was the only thing with even a 20% positve response to the general melanoma case.  (5% appraches a permenant cure.) 

             Interferon in a smaller number of cases can inhance the immune system, but how to tell who either will work on is not known.  i chose IL-2 to start Stage IV treatment because while I heard it was rough, I wanted to take the most likely succesful path while I was the strongest.  While a rough treatment, the recovery time is short if one needs to move on to another type treatment.

             There are many things that have worked for a few people.  The problem is to learn what will work on whom.  There are currently studies underway to determine why interferon works on the ones it does and fails to be beneficial on the other 91%.  If anything good is learned  from this it will be of great beneefit to stage III patients. 

             You are ding the correct thing in tryiing to learn as much as you can.  This is a field that has much activity.  There is s muh activity that no Oncologist can keep up with everything that is happening in the field.

        http://www.carepages.com/carepages/JerryEllis

        Loading spinner
        Justme
        Participant

        Thank you again for your replies.

        Both docs have agreed that the areas on the ct scan are melanoma.  They are not going to do a biopsy at this time as they do not want to collapse a lung.  The one area has grown but not to the 1cm range(I think that's the size).  They feel that the interfuron may be helping to slow down the growth. 

        They are going to take another look next month and depending on the results they will stay with the treatment they have now or change to IL-2. 

        Wouldn't it be best to switch over to the IL-2 or even IPI?  Don't we want the areas to shrink versus slowly growing or not growing at all?

        What questions would you suggest they ask their docs?

        My brother read that he has 18% chance at this point in time.  I've tried pointing them to this board hoping he will come talk to you guys and see that there is hope. And for some guidance.

        I am sorry anyone has to deal with this. 

        Again Thank you

        Loading spinner
        JerryfromFauq
        Participant

        There are some here that feel that interferon has done wonders for them,  I cannot sy that it has not helped some.  it wll be interesting to see if any one responds that has had tumors continue to grow  on the interferon and then finally stop the growth. Most cases I am aware of where people felt the interferon helped was at the stage III level where new tumors never appeared after the operation.  If tumors continue to grow while on the interferon, I personally would be looking at either Ipi or Il-2 to be tried before too much time elapses. 

           Tell your brother that statistsics are for a huge number of people.  If statistics are directly related to me, I'm dead at least 3 tiimes.  Remember in August, after my horse accident some Doctors asked my family if they would donate my organs so they could be transplanted into others, since I was gone (indicating my mind was hopeless for being much and the organs would soon deteriate so they wouldn't be useful to anyone.  {Any way, Who would want the organs from a Stage IV Melanoma patient?]

          My family told the doctors that I still needed them!  Actually i've seen nothing that says my odds are even 18% from the melanoma.  For  a FULL WEEK my wife was not given any odds that I would still be breathing overnight!.  I looked at Charlie and said so what with odds, I'm me and no one else!  

          My general approach is to try what gives me the best chance as quick as possible and if that doesn't work, then try the options that have a lower probability of success.  Remember, most everything has worked on someone, even if the statistics are very low for many treatments.  

           If one meets the requirements for a targeted drug treatment, the odds are the highest for at least a partial response.  It will be interesting to see what the future brings for long term success.  For the near term it seems to me that Ipi and IL-2 (possibly in combination usage) may be the best for the general melanoma population wiwthout a good targt point.

           Good luck to you both.

        Loading spinner
        JerryfromFauq
        Participant

        There are some here that feel that interferon has done wonders for them,  I cannot sy that it has not helped some.  it wll be interesting to see if any one responds that has had tumors continue to grow  on the interferon and then finally stop the growth. Most cases I am aware of where people felt the interferon helped was at the stage III level where new tumors never appeared after the operation.  If tumors continue to grow while on the interferon, I personally would be looking at either Ipi or Il-2 to be tried before too much time elapses. 

           Tell your brother that statistsics are for a huge number of people.  If statistics are directly related to me, I'm dead at least 3 tiimes.  Remember in August, after my horse accident some Doctors asked my family if they would donate my organs so they could be transplanted into others, since I was gone (indicating my mind was hopeless for being much and the organs would soon deteriate so they wouldn't be useful to anyone.  {Any way, Who would want the organs from a Stage IV Melanoma patient?]

          My family told the doctors that I still needed them!  Actually i've seen nothing that says my odds are even 18% from the melanoma.  For  a FULL WEEK my wife was not given any odds that I would still be breathing overnight!.  I looked at Charlie and said so what with odds, I'm me and no one else!  

          My general approach is to try what gives me the best chance as quick as possible and if that doesn't work, then try the options that have a lower probability of success.  Remember, most everything has worked on someone, even if the statistics are very low for many treatments.  

           If one meets the requirements for a targeted drug treatment, the odds are the highest for at least a partial response.  It will be interesting to see what the future brings for long term success.  For the near term it seems to me that Ipi and IL-2 (possibly in combination usage) may be the best for the general melanoma population wiwthout a good targt point.

           Good luck to you both.

        Loading spinner
        dian in spokane
        Participant

        I want you to suggest that they CONFIRM that it is melanoma in the lungs before they treat for it. I have had radiologists report that I have melanoma in my lungs after CT scans, PET scans, and combined PET/CT scans and have yet to have anyone prove it to me.

        Just last January, I had at PET/CT and the report said I had most likely had a bilateral spread of melanoma to the lymph nodes of my neck and multiple melanomas in my lungs, when in fact, what I had was the flu.

        I do believe it's most often better to get your medical information from a doctor than the internet, I also belive that melanoma in the lungs should be confirmed rather than assumed.

        Has anyone suggested or tried a bronchoscopy?

        and yes.. if he does have a spread to his lungs, he should discontinue interferon and go to something else

        dian in spokane

        Loading spinner
        dian in spokane
        Participant

        I want you to suggest that they CONFIRM that it is melanoma in the lungs before they treat for it. I have had radiologists report that I have melanoma in my lungs after CT scans, PET scans, and combined PET/CT scans and have yet to have anyone prove it to me.

        Just last January, I had at PET/CT and the report said I had most likely had a bilateral spread of melanoma to the lymph nodes of my neck and multiple melanomas in my lungs, when in fact, what I had was the flu.

        I do believe it's most often better to get your medical information from a doctor than the internet, I also belive that melanoma in the lungs should be confirmed rather than assumed.

        Has anyone suggested or tried a bronchoscopy?

        and yes.. if he does have a spread to his lungs, he should discontinue interferon and go to something else

        dian in spokane

        Loading spinner
        Justme
        Participant

        Thank you again for your replies.

        Both docs have agreed that the areas on the ct scan are melanoma.  They are not going to do a biopsy at this time as they do not want to collapse a lung.  The one area has grown but not to the 1cm range(I think that's the size).  They feel that the interfuron may be helping to slow down the growth. 

        They are going to take another look next month and depending on the results they will stay with the treatment they have now or change to IL-2. 

        Wouldn't it be best to switch over to the IL-2 or even IPI?  Don't we want the areas to shrink versus slowly growing or not growing at all?

        What questions would you suggest they ask their docs?

        My brother read that he has 18% chance at this point in time.  I've tried pointing them to this board hoping he will come talk to you guys and see that there is hope. And for some guidance.

        I am sorry anyone has to deal with this. 

        Again Thank you

        Loading spinner
        JerryfromFauq
        Participant

        My deeper groin lymph nodes were the only tumors found by my PET scans.   As noted, a later groin tumr was total missed by the PET.  I had it removed anyway because it was causing an uncomfortable pressure on a ligament /nerves.  It grew to the size of the last joint in  my little finger in a months time and was very black when removed.  The surgeon and I were sure at first look that it was melanoma.  The pathology confirmed melanoma.  I supect that change means more than antythiing else with melanoma.  Change is probably the mosty important factor to look at when looking at moles as well.

            I have had several PET scans miss melanomas that I suspected and were later proved to be melanoma in spite of passing the PET.  PET scans are famous fr both false positives and false negatives.  The SUV  in PETs provide points to followup on, but knkowing nes own self may be more  important for surface and near surface inspections.

             The suspicions of the radialogist to an x-ray is what lead to a CT scan to show my lung tumors and the CT's showed rapid grwth, so I jumped into IL-2 immediately.  This was before Ipi was availale.

           One factor for both PET's and CT's can be the space between scan slices.  The finer the slice, the smaller the nodule that can be spotted.

            Have you looked at the scans?  The PET shows a bright blob, the CT shows a better defined mass to cmpare for change.

            Personally I have favored  IL-2 in the past since it was the only thing with even a 20% positve response to the general melanoma case.  (5% appraches a permenant cure.) 

             Interferon in a smaller number of cases can inhance the immune system, but how to tell who either will work on is not known.  i chose IL-2 to start Stage IV treatment because while I heard it was rough, I wanted to take the most likely succesful path while I was the strongest.  While a rough treatment, the recovery time is short if one needs to move on to another type treatment.

             There are many things that have worked for a few people.  The problem is to learn what will work on whom.  There are currently studies underway to determine why interferon works on the ones it does and fails to be beneficial on the other 91%.  If anything good is learned  from this it will be of great beneefit to stage III patients. 

             You are ding the correct thing in tryiing to learn as much as you can.  This is a field that has much activity.  There is s muh activity that no Oncologist can keep up with everything that is happening in the field.

        http://www.carepages.com/carepages/JerryEllis

        Loading spinner
        Justme
        Participant

        Hi Jerry

        Thank you for your response.  this is for my brother.

        His finger nor the lymph node was checked for c-kit or Braf oncoproteins or mutaions.

        He saw an oncologist at providence in portland that did the Pet scans.  Because the last scan did not light up on anything in the lungs or anywhere else he chose to go with the interferon treatments vs the interlukin.

        His other doc at Kaiser just ordered the Ct scan to check the lungs and says that they have grown significantly.

        If they have grown significantly from the last ct scan wouldn't they have lit up on the Pet in July?  Neither doc thought that the pelvic mass was anything to check out. 

        A web site said that the Pet was better able to detect much smaller microscopic areas of cancer than the CT but from what it sounds like the opposite is true?

         

        Thanks again

         

        Loading spinner
      JerryfromFauq
      Participant

      PET scn shows the SUV (sugar) uptake.  It does not tell what is cancer.  It points out areas to lk closer at.  PEET tld me t o watch my knee which was busted up in a bad car wreck, and to watch my mouth where I had had dentall surury.  It found lymph nodes in my groin but also totally missed a later tumr in the groin that had no SUV updake, but was growing like mad.  The CT scan is more defenative as to the actual measurements of the tumor and exposes oe to far less radiation.  My nclogist uses PET scans sparingly and CT to track his main concerns.

         IL-2 held my lungs stable for 20 months. 

      Has your tumors been check for c-kit or BRAF oncoproteins and mutatioons?  These tests can point the way for future treatment is there were to be a return.

      Loading spinner
      Jim in Denver
      Participant

      Your willingness to be helpful to your brother is commendable, but it is not really a substitute for him being his own advocate.  If he is not capable of advocating for himself, then maybe you can fly up to help him and so that you can get a better feel for the "disagreeing Docs" at Kaiser.

      The Docs (and by extension you as well) may be missing the forest for the trees regarding CT vs PET scans.  Jerry is very knowledgeable and is trying to help you and your brother, and generally the CAT scans are appropriate for lung and organ scans.  Jerry also is pointing out that your two should not be focusing on these statistics that are not helpful and only look backwards.  There are much better treatments available and in development that will change the stats going forward greatly, and your brother is not a statistic anyway, is he?

      At this point, the focus should be on the lung nodules, and most Oncs would do a needle biopsy to get a tissue sample – generally they want a nodule at least 1 CM.  Your brother need to find a Melanoma Specialist asap imho.  I know a little bit about how Kaiser works, the relevant one being that he apparently will have to stay in their system.  It would make sense to push to see the Oncologist(s) who are Melanoma Specialists, regardless of location – maybe travel to California would be needed.

      If the mel has traveled to the lungs, interferon should then be stopped and other treatment options explored.  A tumor should be tested for genetic mutations, particularly BRAF v600e, k, and g.  Treatment options would include Ipilimumab and BRAf inhibitor (if he tests positive).  You two may need to push hard on the Kaiser system, but it seems like you need to move forward quickly since he may now be Stage IV.  Sorry to sound cold and clinical, but I have been down this road myself, and believe that there is a clear path to pursue and that there is some urgency for your brother to get going in a positive direction.

      Best wishes to you both.

      Jim

      Loading spinner
      Jim in Denver
      Participant

      Your willingness to be helpful to your brother is commendable, but it is not really a substitute for him being his own advocate.  If he is not capable of advocating for himself, then maybe you can fly up to help him and so that you can get a better feel for the "disagreeing Docs" at Kaiser.

      The Docs (and by extension you as well) may be missing the forest for the trees regarding CT vs PET scans.  Jerry is very knowledgeable and is trying to help you and your brother, and generally the CAT scans are appropriate for lung and organ scans.  Jerry also is pointing out that your two should not be focusing on these statistics that are not helpful and only look backwards.  There are much better treatments available and in development that will change the stats going forward greatly, and your brother is not a statistic anyway, is he?

      At this point, the focus should be on the lung nodules, and most Oncs would do a needle biopsy to get a tissue sample – generally they want a nodule at least 1 CM.  Your brother need to find a Melanoma Specialist asap imho.  I know a little bit about how Kaiser works, the relevant one being that he apparently will have to stay in their system.  It would make sense to push to see the Oncologist(s) who are Melanoma Specialists, regardless of location – maybe travel to California would be needed.

      If the mel has traveled to the lungs, interferon should then be stopped and other treatment options explored.  A tumor should be tested for genetic mutations, particularly BRAF v600e, k, and g.  Treatment options would include Ipilimumab and BRAf inhibitor (if he tests positive).  You two may need to push hard on the Kaiser system, but it seems like you need to move forward quickly since he may now be Stage IV.  Sorry to sound cold and clinical, but I have been down this road myself, and believe that there is a clear path to pursue and that there is some urgency for your brother to get going in a positive direction.

      Best wishes to you both.

      Jim

      Loading spinner
Viewing 3 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.