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Annual Pet Scan for Stage 1

Forums General Melanoma Community Annual Pet Scan for Stage 1

  • Post
    lisa joy
    Participant

      Hi everyone, 

      I have a question. I was diagnosed with Stage 1 (.75mm) melanoma in June 2016. I had a WLE along with one lymph node removed as a proactive measure. I also had a full body PET Scan, brain MRI and CT scan. All came back clear NED.

      I see my dermatologist every three months along with my surigical oncologist. My surgical oncologist mentioned that I will probably have another PET scan in one year. Is this typical for my stage? I am worried about the possible radiation effect on my body having these scans. 

      My mom was diagnosed with Melanoma in-situ about 20+ years ago. My dad has had basal and squamous places removed but No other cancer in my family. 

       

      Thanks in advance for your input. 

    Viewing 5 reply threads
    • Replies
        Kim K
        Participant

          No, this is NOT typical and can be more damaging in the long run.  I am shocked the procedure was even approved!

          For your stage, the risk of finding random junk that will require more procedures let alone excessive radiation (tracer & scans) just isn't worth it.

          Overkill and then some!

          Just saying.  IMHO – I would decline the scans and go with just skin / lymphnode checks.

          Kim K
          Participant

            No, this is NOT typical and can be more damaging in the long run.  I am shocked the procedure was even approved!

            For your stage, the risk of finding random junk that will require more procedures let alone excessive radiation (tracer & scans) just isn't worth it.

            Overkill and then some!

            Just saying.  IMHO – I would decline the scans and go with just skin / lymphnode checks.

              Jubes
              Participant

                Wow. Is that true?? I have been pet scanned every three months for  two and a half years. X rayed and ct scanned and MRI d. My doctors said there is more radiation on an international flight!! (Which I do as well!!)

                Jubes
                Participant

                  Wow. Is that true?? I have been pet scanned every three months for  two and a half years. X rayed and ct scanned and MRI d. My doctors said there is more radiation on an international flight!! (Which I do as well!!)

                  jennunicorn
                  Participant

                    True for stage 1. Later stages, like 3 & 4, you get scanned every 3 months and then it lowers to every six months at some point, depending on where you get treated. The benefit for late stages to get scanned frequently and catch recurrance or progression outweighs the risk of scanning. It is not neccessary for low stages, as they have a much higher liklihood of never having it metastisize, so it's unnecessary exposure to get scanned more than one time, unless something clinically comes up that gives suspicion and needs further investigating with a scan. 

                    jennunicorn
                    Participant

                      True for stage 1. Later stages, like 3 & 4, you get scanned every 3 months and then it lowers to every six months at some point, depending on where you get treated. The benefit for late stages to get scanned frequently and catch recurrance or progression outweighs the risk of scanning. It is not neccessary for low stages, as they have a much higher liklihood of never having it metastisize, so it's unnecessary exposure to get scanned more than one time, unless something clinically comes up that gives suspicion and needs further investigating with a scan. 

                      lisa joy
                      Participant

                        Thank you for responding!

                        lisa joy
                        Participant

                          Thank you for responding!

                          lisa joy
                          Participant

                            Thank you for responding!

                            lisa joy
                            Participant

                              Thank you for responding!

                              lisa joy
                              Participant

                                Thank you for responding!

                                lisa joy
                                Participant

                                  Thank you for responding!

                                  jennunicorn
                                  Participant

                                    True for stage 1. Later stages, like 3 & 4, you get scanned every 3 months and then it lowers to every six months at some point, depending on where you get treated. The benefit for late stages to get scanned frequently and catch recurrance or progression outweighs the risk of scanning. It is not neccessary for low stages, as they have a much higher liklihood of never having it metastisize, so it's unnecessary exposure to get scanned more than one time, unless something clinically comes up that gives suspicion and needs further investigating with a scan. 

                                    Jubes
                                    Participant

                                      Wow. Is that true?? I have been pet scanned every three months for  two and a half years. X rayed and ct scanned and MRI d. My doctors said there is more radiation on an international flight!! (Which I do as well!!)

                                      lisa joy
                                      Participant

                                        Thank you, Kim. This information is very helpful. 

                                        lisa joy
                                        Participant

                                          Thank you, Kim. This information is very helpful. 

                                          lisa joy
                                          Participant

                                            Thank you, Kim. This information is very helpful. 

                                          Kim K
                                          Participant

                                            No, this is NOT typical and can be more damaging in the long run.  I am shocked the procedure was even approved!

                                            For your stage, the risk of finding random junk that will require more procedures let alone excessive radiation (tracer & scans) just isn't worth it.

                                            Overkill and then some!

                                            Just saying.  IMHO – I would decline the scans and go with just skin / lymphnode checks.

                                            ed williams
                                            Participant

                                              Hi Lisa, when it comes to dealing with stage 1 or stage 0 in situ melanoma Janner gives out great information. I would take her advice from your first post and stay away from melanoma sites or the internet about melanoma. If you have a good derm at this point and visit them every  6months or so and maybe do some mole mapping of your skin and practise sun safety you should be good going forward. Doing PET CT scans every year for your stage is way off side. Best Wishes!!!Ed 

                                              ed williams
                                              Participant

                                                Hi Lisa, when it comes to dealing with stage 1 or stage 0 in situ melanoma Janner gives out great information. I would take her advice from your first post and stay away from melanoma sites or the internet about melanoma. If you have a good derm at this point and visit them every  6months or so and maybe do some mole mapping of your skin and practise sun safety you should be good going forward. Doing PET CT scans every year for your stage is way off side. Best Wishes!!!Ed 

                                                  lisa joy
                                                  Participant

                                                    Thank you, Ed. 

                                                    I do trust my doctors and have good ones. Thanks! I'm just so confused as to why my surgical oncologist wants me to have another pet scan this summer (June will be one year) when no symptoms are present. He is a melanoma and breast cancer surgical oncologist. 

                                                    lisa joy
                                                    Participant

                                                      Thank you, Ed. 

                                                      I do trust my doctors and have good ones. Thanks! I'm just so confused as to why my surgical oncologist wants me to have another pet scan this summer (June will be one year) when no symptoms are present. He is a melanoma and breast cancer surgical oncologist. 

                                                      jennunicorn
                                                      Participant

                                                        Different doctors have different opinions and philosophies. Scanning you without clinical reason is far beyond standard of care. It's up to you if you want to subject yourself to more radiation, but in reality, you really don't need to. Most insurance companies won't approve it, due to it not being the standard of care, and insurance companies sure don't like to pay for things that they don't need to pay for (insurance can be a pain in the butt just to get them to pay for the things that ARE standard). In this case, they have good reason not to pay for any scan unless your doctor had reason to suspect an internal spread.

                                                        jennunicorn
                                                        Participant

                                                          Different doctors have different opinions and philosophies. Scanning you without clinical reason is far beyond standard of care. It's up to you if you want to subject yourself to more radiation, but in reality, you really don't need to. Most insurance companies won't approve it, due to it not being the standard of care, and insurance companies sure don't like to pay for things that they don't need to pay for (insurance can be a pain in the butt just to get them to pay for the things that ARE standard). In this case, they have good reason not to pay for any scan unless your doctor had reason to suspect an internal spread.

                                                          jennunicorn
                                                          Participant

                                                            Different doctors have different opinions and philosophies. Scanning you without clinical reason is far beyond standard of care. It's up to you if you want to subject yourself to more radiation, but in reality, you really don't need to. Most insurance companies won't approve it, due to it not being the standard of care, and insurance companies sure don't like to pay for things that they don't need to pay for (insurance can be a pain in the butt just to get them to pay for the things that ARE standard). In this case, they have good reason not to pay for any scan unless your doctor had reason to suspect an internal spread.

                                                            Janner
                                                            Participant

                                                              I think it is overkill and insurance is unlikely to pay – and for good reason.  There are no protocols for stage 1 that include ANY scans, even at diagnosis.  (Some institutions don't regularly scan stage 3 or 4 unless there are symptoms).  If he wants to scan, suggest a chest x-ray.  Much cheaper and much less radiation and insurance will likely cover.  Chest X-rays are done by some docs for stage 1 even if it is only a baseline X-ray.  The only way insurance would cover this is if he justifies this by saying you have symptoms of something.  Most deductibles are high and you would be paying for it unless some other medical condition justifies that first.  I don't care how good he is, he is not following the norm that all other stage 1 warriors follow.  You can choose to do what you want either way – this is your call and no one else's including your doc- but understand that the only stage 1s who really get PET scans (at any time) are if they have symptoms and it's suspected they have progressed to a more advanced stage.  Even then, a PET scan might not be the first step.

                                                              Janner
                                                              Participant

                                                                I think it is overkill and insurance is unlikely to pay – and for good reason.  There are no protocols for stage 1 that include ANY scans, even at diagnosis.  (Some institutions don't regularly scan stage 3 or 4 unless there are symptoms).  If he wants to scan, suggest a chest x-ray.  Much cheaper and much less radiation and insurance will likely cover.  Chest X-rays are done by some docs for stage 1 even if it is only a baseline X-ray.  The only way insurance would cover this is if he justifies this by saying you have symptoms of something.  Most deductibles are high and you would be paying for it unless some other medical condition justifies that first.  I don't care how good he is, he is not following the norm that all other stage 1 warriors follow.  You can choose to do what you want either way – this is your call and no one else's including your doc- but understand that the only stage 1s who really get PET scans (at any time) are if they have symptoms and it's suspected they have progressed to a more advanced stage.  Even then, a PET scan might not be the first step.

                                                                Janner
                                                                Participant

                                                                  I think it is overkill and insurance is unlikely to pay – and for good reason.  There are no protocols for stage 1 that include ANY scans, even at diagnosis.  (Some institutions don't regularly scan stage 3 or 4 unless there are symptoms).  If he wants to scan, suggest a chest x-ray.  Much cheaper and much less radiation and insurance will likely cover.  Chest X-rays are done by some docs for stage 1 even if it is only a baseline X-ray.  The only way insurance would cover this is if he justifies this by saying you have symptoms of something.  Most deductibles are high and you would be paying for it unless some other medical condition justifies that first.  I don't care how good he is, he is not following the norm that all other stage 1 warriors follow.  You can choose to do what you want either way – this is your call and no one else's including your doc- but understand that the only stage 1s who really get PET scans (at any time) are if they have symptoms and it's suspected they have progressed to a more advanced stage.  Even then, a PET scan might not be the first step.

                                                                  lisa joy
                                                                  Participant

                                                                    Thank you, Ed. 

                                                                    I do trust my doctors and have good ones. Thanks! I'm just so confused as to why my surgical oncologist wants me to have another pet scan this summer (June will be one year) when no symptoms are present. He is a melanoma and breast cancer surgical oncologist. 

                                                                  ed williams
                                                                  Participant

                                                                    Hi Lisa, when it comes to dealing with stage 1 or stage 0 in situ melanoma Janner gives out great information. I would take her advice from your first post and stay away from melanoma sites or the internet about melanoma. If you have a good derm at this point and visit them every  6months or so and maybe do some mole mapping of your skin and practise sun safety you should be good going forward. Doing PET CT scans every year for your stage is way off side. Best Wishes!!!Ed 

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