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Should I get the pet scan?

Forums General Melanoma Community Should I get the pet scan?

  • Post
    itsmitzi
    Participant

      I know oncologits don't like to order pet scans for stage 2 folks like me unless they are symptomatic,but my gp doctor wants to do a 2 year follow up pet scan.  The only symptom I have is a palpable lymph node under the culprit arm.

      I sorta figure 'why not?' as it's a chance maybe to see if I'm all okay.

      mitzi

      I know oncologits don't like to order pet scans for stage 2 folks like me unless they are symptomatic,but my gp doctor wants to do a 2 year follow up pet scan.  The only symptom I have is a palpable lymph node under the culprit arm.

      I sorta figure 'why not?' as it's a chance maybe to see if I'm all okay.

      mitzi

    Viewing 7 reply threads
    • Replies
        nicoli
        Participant

          I am certainly not the brightest crayon in this box, but it seems to me it would be good to check out that lymph node to see why it is swollen . Has he done that?

          I personally wouldn't get a PET scan (radiation)  unless I was stage 3 or higher.  If you have no evidence that the cancer has gone into the lymph system, I think a PET is premature.

          Nicki, Stage3b, scalp

            KatyWI
            Participant

              Yes, good point.  Why not push for a needle biopsy of the node, first?

              KatyWI
              Participant

                Yes, good point.  Why not push for a needle biopsy of the node, first?

              nicoli
              Participant

                I am certainly not the brightest crayon in this box, but it seems to me it would be good to check out that lymph node to see why it is swollen . Has he done that?

                I personally wouldn't get a PET scan (radiation)  unless I was stage 3 or higher.  If you have no evidence that the cancer has gone into the lymph system, I think a PET is premature.

                Nicki, Stage3b, scalp

                carolegarry
                Participant

                  Hi,

                  I would want to get that node removed and the pathology report back ASAP.

                  I had a needle biopsy of my node,  and it came back positive. I was strongly advised, positive or negative to have the whole node removed and examined by the pathologist. The advantage of the needle biopsy was that the surgeon proceded to remove all the nodes when she did the surgery.

                  If your node is positive and you opt to go on a drug trial, you may need specific scans for the trial.

                  Carole 3C back

                  carolegarry
                  Participant

                    Hi,

                    I would want to get that node removed and the pathology report back ASAP.

                    I had a needle biopsy of my node,  and it came back positive. I was strongly advised, positive or negative to have the whole node removed and examined by the pathologist. The advantage of the needle biopsy was that the surgeon proceded to remove all the nodes when she did the surgery.

                    If your node is positive and you opt to go on a drug trial, you may need specific scans for the trial.

                    Carole 3C back

                    itsmitzi
                    Participant

                      I don't think the radiation is all that bad, I believe the insurance companies just don't want to pay for pet scans so they use radiation as an excuse.

                      Anyhow, what do I tell my doctor? He is the one who wants me to have the test. He also pushed for me to have the node removed about a year ago. I had two removed with the WLE and that was enough for me to know I don't want any others removed!

                      As for the needle biopsy… a friend had one and she said it was terribly painful.

                      For my part I'd like to just go on acting as if the melanoma never happened.

                       

                      mitzi

                        Janner
                        Participant

                          Well, a PET scan is about 600x the radiation as an x-ray – not insignificant.     Or something like that – depends on where you read the data.  Yes, they are very expensive, too.  The thing is, a PET scan is not definitive.  And if it has any SUV uptake on the node, you'd have to remove it anyway.  Needle biopsies aren't all that painful – ask for some numbing.  I just had a breast biopsy done right under the nipple and it was no big deal.  But tell me this, you have had this enlarged node for TWO YEARS without any growth?  It isn't any bigger?  Your GP wants to do a PET scan just because?   Pretty unlikely to be melanoma if it hasn't grown in that time frame – much more likely to be a reactive node which are common.  What does your onc say about the node?  I'd much prefer my onc to request the scan, not my GP.

                          Bottom line, however, is do what you want regardless of what anyone else says.  Just make sure your insurance will cover the scan because they can be quite expensive if you have to pay.

                          Best wishes,

                          Janner

                          itsmitzi
                          Participant

                            No, I haven't had "this enlarged node for TWO YEARS without any growth?"

                            What I wrote was that I had a PET/CT 2 years ago. At that time an oncologist sent me for that one several months after the WLE and SNB. He considered me high risk because the tumor was ulcerated, Clark's level 4 and had a high mitosis.

                            My gp feels that the node has gotten bigger since I had an ultrasound last year. I don't know because I can never seem to find it so I don't bother looking.

                            itsmitzi
                            Participant

                              No, I haven't had "this enlarged node for TWO YEARS without any growth?"

                              What I wrote was that I had a PET/CT 2 years ago. At that time an oncologist sent me for that one several months after the WLE and SNB. He considered me high risk because the tumor was ulcerated, Clark's level 4 and had a high mitosis.

                              My gp feels that the node has gotten bigger since I had an ultrasound last year. I don't know because I can never seem to find it so I don't bother looking.

                              Janner
                              Participant

                                Well, a PET scan is about 600x the radiation as an x-ray – not insignificant.     Or something like that – depends on where you read the data.  Yes, they are very expensive, too.  The thing is, a PET scan is not definitive.  And if it has any SUV uptake on the node, you'd have to remove it anyway.  Needle biopsies aren't all that painful – ask for some numbing.  I just had a breast biopsy done right under the nipple and it was no big deal.  But tell me this, you have had this enlarged node for TWO YEARS without any growth?  It isn't any bigger?  Your GP wants to do a PET scan just because?   Pretty unlikely to be melanoma if it hasn't grown in that time frame – much more likely to be a reactive node which are common.  What does your onc say about the node?  I'd much prefer my onc to request the scan, not my GP.

                                Bottom line, however, is do what you want regardless of what anyone else says.  Just make sure your insurance will cover the scan because they can be quite expensive if you have to pay.

                                Best wishes,

                                Janner

                                nicoli
                                Participant

                                  I know the radiation in PETs is enough that the standard treatment is to have them less and less. For instance, every 3 months the first year,  and only every 6 months thereafter. According to my doctor, it is because of radiation.

                                  Uh, you don't want another node removed and you don't want the pain of a needle biopsy. Maybe you need to get another opinion from another doctor.

                                  I must say, my melanoma has caused alot of pain and inconvenience. That's the nature of the beast.

                                  Nicki

                                  itsmitzi
                                  Participant

                                    This would only be my second in over two years. I don't think that would be overkill.

                                    I've been seeing my GP for over 19 years now, it would be hard to just start over with someone else.

                                    But anyhow, I don't think I will get the PET scan for the simple reason that only PET/CTs are done around my neck of the woods, and my GP insists on the PET scan which no one does anymore.

                                    itsmitzi
                                    Participant

                                      This would only be my second in over two years. I don't think that would be overkill.

                                      I've been seeing my GP for over 19 years now, it would be hard to just start over with someone else.

                                      But anyhow, I don't think I will get the PET scan for the simple reason that only PET/CTs are done around my neck of the woods, and my GP insists on the PET scan which no one does anymore.

                                      nicoli
                                      Participant

                                        I know the radiation in PETs is enough that the standard treatment is to have them less and less. For instance, every 3 months the first year,  and only every 6 months thereafter. According to my doctor, it is because of radiation.

                                        Uh, you don't want another node removed and you don't want the pain of a needle biopsy. Maybe you need to get another opinion from another doctor.

                                        I must say, my melanoma has caused alot of pain and inconvenience. That's the nature of the beast.

                                        Nicki

                                      itsmitzi
                                      Participant

                                        I don't think the radiation is all that bad, I believe the insurance companies just don't want to pay for pet scans so they use radiation as an excuse.

                                        Anyhow, what do I tell my doctor? He is the one who wants me to have the test. He also pushed for me to have the node removed about a year ago. I had two removed with the WLE and that was enough for me to know I don't want any others removed!

                                        As for the needle biopsy… a friend had one and she said it was terribly painful.

                                        For my part I'd like to just go on acting as if the melanoma never happened.

                                         

                                        mitzi

                                        Charlie S
                                        Participant

                                          Many people here would and do  die to get a PET scan under your circumstances.  I "sorta" figure what in the world is wrong with your head NOT to get the PET?

                                          Sorry, but I wonder if you need a brain MRI for even asking this question, given your casual approach

                                          Charlie S. 

                                          Charlie S
                                          Participant

                                            Many people here would and do  die to get a PET scan under your circumstances.  I "sorta" figure what in the world is wrong with your head NOT to get the PET?

                                            Sorry, but I wonder if you need a brain MRI for even asking this question, given your casual approach

                                            Charlie S. 

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