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.

Help with PET scan results?

Forums General Melanoma Community Help with PET scan results?

  • Post
    heiditemple
    Participant

      I was diagnosed stage IIIC in December.  I had a WLE and then a radical neck dissection in December at Vanderbilt Hospital.  I am now in the E1609 clinical trial.  I am in Arm A, so I receive 10mg/kg of ipi.  I just finished the induction phase, so I had a PET scan on Friday.  I am a little confused about what the radiologist put in the report, so I thought I'd ask you guys what you thought.  πŸ™‚

       

      HEAD AND NECK:  Right periauricular soft tissue thickening has nearly resolved.  There is a 1.3 cm round soft tissue density posterior medial to the right parotid tip demonstrates mild SUV uptake of 3.1, possibly reprsenting a metastatic lymph node.  There are two hypermetabolic left level II lymph nodes measuring 7mm and 11mm in short axis on image 83 and 91.  SUV measures 3.1 and 6.1 respectively.  These lymph nodes were present on the previous exam measuring 5mm and 9mm with SUV value of 3.  THere is also a mildly hypermetabolic stable 4mm lymph node in the left posterior cervical triangle on image 101 without significant change.

       

      My doctor has ordered more scans in 6 weeks.  My husband was there during the appointment and he got the impression that there wasn't really anything to be concerned about.  I got the opposite impression.  πŸ™‚  Here's where I am confused..  when I had the radical neck dissection, I thought that all of my lymph nodes were removed?  So how are they seeing ANY lymph nodes on the right side?

       

      Thanks in advance for any insight or advice!

    Viewing 2 reply threads
    • Replies
        Bubbles
        Participant

          Hi Heidi,

          A complete lymphadenectomy, of any area, is never ABSOLUTELY complete.  What I mean is…the surgeon must remove a certain number of nodes for it to be considered COMPLETE.  But, though they may well try, not all the lymph nodes present are visible and, especially when in an area like the neck, there are a lot of important structures they are not going to risk harming in order to poke around for one more node.  On top of all of that, unlike the number of bones in your arm, or toes…the number of lymph nodes any one person has in any particular area vary in position and quantity from person to person.  I know that doesn't sound very "complete" in the usual parlance…but that's the how a lymphadenectomy works.

          On the good side, you know you are getting a maximal dose of ipi.  Ipi is known to be slow in action and cause some increased "size" in tumors or nodes before they are irradicated.  So….IF the areas being measured on your scan are nodes, even metastatic ones, there is a good chance you are currently taking care of them!!  Hang in there!

          Wishing you my best, Celeste

            heiditemple
            Participant
              That was very helpful, Celeste! Thank you for taking the time to explain that for me. πŸ™‚
              Marianne quinn
              Participant

                Hi Heidi- My husband was in the same trial as you with 10 mg. ipi. The CAT scan after the last dose showed one 2 cm met in the liver. We were devastated. and are out of the study. We were going to a general oncologist as the trial was going very well. Anyway- she was very  concerned ; ordered a PET  and then a biopsy. The biopsy was positive. ( The trial said to wait another month before doing this but we didn't). He started to be assessed for stereostatic radiation. The radiation doctor could not measure the lesion about 2 weeks after the biopsy, saw a "blush, very small". We also saw a physician for ablation and elected to go that route. So- anyway, it has been over a month now and nothing has happened yet so we should have waited. He is getting another CAT scan next Wednesday and surgery is scheduled on May 6. He feels absolutely fine and is still having ipi symptoms of rash and delicate bowels. 

                I want to thank you for posting as it has given us some hope that the original CAT scan can be typical for when Ipi has just reached therapeutic levels. We plan to ask to be referred for a consult with a melanoma specialist. and keep thinking positive thoughts. 

                Marianne quinn
                Participant

                  Hi Heidi- My husband was in the same trial as you with 10 mg. ipi. The CAT scan after the last dose showed one 2 cm met in the liver. We were devastated. and are out of the study. We were going to a general oncologist as the trial was going very well. Anyway- she was very  concerned ; ordered a PET  and then a biopsy. The biopsy was positive. ( The trial said to wait another month before doing this but we didn't). He started to be assessed for stereostatic radiation. The radiation doctor could not measure the lesion about 2 weeks after the biopsy, saw a "blush, very small". We also saw a physician for ablation and elected to go that route. So- anyway, it has been over a month now and nothing has happened yet so we should have waited. He is getting another CAT scan next Wednesday and surgery is scheduled on May 6. He feels absolutely fine and is still having ipi symptoms of rash and delicate bowels. 

                  I want to thank you for posting as it has given us some hope that the original CAT scan can be typical for when Ipi has just reached therapeutic levels. We plan to ask to be referred for a consult with a melanoma specialist. and keep thinking positive thoughts. 

                  Marianne quinn
                  Participant

                    Hi Heidi- My husband was in the same trial as you with 10 mg. ipi. The CAT scan after the last dose showed one 2 cm met in the liver. We were devastated. and are out of the study. We were going to a general oncologist as the trial was going very well. Anyway- she was very  concerned ; ordered a PET  and then a biopsy. The biopsy was positive. ( The trial said to wait another month before doing this but we didn't). He started to be assessed for stereostatic radiation. The radiation doctor could not measure the lesion about 2 weeks after the biopsy, saw a "blush, very small". We also saw a physician for ablation and elected to go that route. So- anyway, it has been over a month now and nothing has happened yet so we should have waited. He is getting another CAT scan next Wednesday and surgery is scheduled on May 6. He feels absolutely fine and is still having ipi symptoms of rash and delicate bowels. 

                    I want to thank you for posting as it has given us some hope that the original CAT scan can be typical for when Ipi has just reached therapeutic levels. We plan to ask to be referred for a consult with a melanoma specialist. and keep thinking positive thoughts. 

                    heiditemple
                    Participant
                      That was very helpful, Celeste! Thank you for taking the time to explain that for me. πŸ™‚
                      heiditemple
                      Participant
                        That was very helpful, Celeste! Thank you for taking the time to explain that for me. πŸ™‚
                      Bubbles
                      Participant

                        Hi Heidi,

                        A complete lymphadenectomy, of any area, is never ABSOLUTELY complete.  What I mean is…the surgeon must remove a certain number of nodes for it to be considered COMPLETE.  But, though they may well try, not all the lymph nodes present are visible and, especially when in an area like the neck, there are a lot of important structures they are not going to risk harming in order to poke around for one more node.  On top of all of that, unlike the number of bones in your arm, or toes…the number of lymph nodes any one person has in any particular area vary in position and quantity from person to person.  I know that doesn't sound very "complete" in the usual parlance…but that's the how a lymphadenectomy works.

                        On the good side, you know you are getting a maximal dose of ipi.  Ipi is known to be slow in action and cause some increased "size" in tumors or nodes before they are irradicated.  So….IF the areas being measured on your scan are nodes, even metastatic ones, there is a good chance you are currently taking care of them!!  Hang in there!

                        Wishing you my best, Celeste

                        Bubbles
                        Participant

                          Hi Heidi,

                          A complete lymphadenectomy, of any area, is never ABSOLUTELY complete.  What I mean is…the surgeon must remove a certain number of nodes for it to be considered COMPLETE.  But, though they may well try, not all the lymph nodes present are visible and, especially when in an area like the neck, there are a lot of important structures they are not going to risk harming in order to poke around for one more node.  On top of all of that, unlike the number of bones in your arm, or toes…the number of lymph nodes any one person has in any particular area vary in position and quantity from person to person.  I know that doesn't sound very "complete" in the usual parlance…but that's the how a lymphadenectomy works.

                          On the good side, you know you are getting a maximal dose of ipi.  Ipi is known to be slow in action and cause some increased "size" in tumors or nodes before they are irradicated.  So….IF the areas being measured on your scan are nodes, even metastatic ones, there is a good chance you are currently taking care of them!!  Hang in there!

                          Wishing you my best, Celeste

                      Viewing 2 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 byΒ MRF posting policies.

                      Popular Topics