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Scans advice needed

Forums General Melanoma Community Scans advice needed

  • Post
    triciad
    Participant

      Hi All,

      I'd love to hear what you all have to say regarding scans. 

      I was diagnosed July 09 at 3B.  Surgery and a year of Interferon have been my treatments.   I am scheduled to go for CT of abdomen, chest, and pelvis next week.  My concern is what about a brain MRI?  I guess with all the talk here about brain mets, I'm a little nervous.  I asked my oncologist about the brain MRI, and he said it was not necessary.  Supposedly, all my blood work was good.

      Hi All,

      I'd love to hear what you all have to say regarding scans. 

      I was diagnosed July 09 at 3B.  Surgery and a year of Interferon have been my treatments.   I am scheduled to go for CT of abdomen, chest, and pelvis next week.  My concern is what about a brain MRI?  I guess with all the talk here about brain mets, I'm a little nervous.  I asked my oncologist about the brain MRI, and he said it was not necessary.  Supposedly, all my blood work was good.

      My last scans were last February, so it's a full year of not knowing.  What do you all think?  Should I be concerned?

      Thanks so much for your advice.  You've been such a great source of support, strength, and knowledge throughout my journey.  It's sad to say, but I trust you all more than my doctor! 

      Thanks for any words of wisdom you can offer.

      Tricia 

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    • Replies
        JakeinNY
        Participant

          Hi Tricia.

          My tests have always been PET/CT scans from head to toe and I am stage 3.

          I am 3+ years NED and will continue to get PET/CTs every year for another 2 years and then once every two years.

          I would certainly ask when the Brain MRI is not needed.

          I would hope that your oncologist has a lot of experience with melanoma and that they are taking the right course of action.

          Best wishes for great results and a long life.

          Please post whenever you get great news and mention how long you are NED, etc.

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          JakeinNY
          Participant

            Hi Tricia.

            My tests have always been PET/CT scans from head to toe and I am stage 3.

            I am 3+ years NED and will continue to get PET/CTs every year for another 2 years and then once every two years.

            I would certainly ask when the Brain MRI is not needed.

            I would hope that your oncologist has a lot of experience with melanoma and that they are taking the right course of action.

            Best wishes for great results and a long life.

            Please post whenever you get great news and mention how long you are NED, etc.

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            lhaley
            Participant

              Tricia,

              I am stage IV. My melanoma specialist only does brain mri's when there are symptoms.  Some of the people that posted actually had a brain mri to get into a trial.  I don't quite understand why many oncologists don't do regular MRI's but they don't.  Many at stage 3 have no scan follow up. 

              Scan anxiety is the worse!!  I have a cystoscopy (I've had mel in the bladder twice) in 10 days and a week later a PET/CT where they have been watching a lung nodule. 

              My oncologist tells me to imagine jet fighter planes zooming through out my body looking for loose cells to fight down with my immune system. 

              Wishing you the best, let us know how your scans turn out.

              Linda

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              lhaley
              Participant

                Tricia,

                I am stage IV. My melanoma specialist only does brain mri's when there are symptoms.  Some of the people that posted actually had a brain mri to get into a trial.  I don't quite understand why many oncologists don't do regular MRI's but they don't.  Many at stage 3 have no scan follow up. 

                Scan anxiety is the worse!!  I have a cystoscopy (I've had mel in the bladder twice) in 10 days and a week later a PET/CT where they have been watching a lung nodule. 

                My oncologist tells me to imagine jet fighter planes zooming through out my body looking for loose cells to fight down with my immune system. 

                Wishing you the best, let us know how your scans turn out.

                Linda

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                washoegal
                Participant

                  I am Stage 3a dx Mar 10 and I have PET/Ct every 6 months primary was on my waist with lymph nodes under arm.  Location will make a difference about decision on Brain MRI but usually they don't do them unless there is a reason.  I know, pretty scary.

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                  washoegal
                  Participant

                    I am Stage 3a dx Mar 10 and I have PET/Ct every 6 months primary was on my waist with lymph nodes under arm.  Location will make a difference about decision on Brain MRI but usually they don't do them unless there is a reason.  I know, pretty scary.

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                    Jaime.30
                    Participant

                      Hello.  My husbands primary was on his ear and they never did an MRI of the brain until he was having awful headaches for longer than a week.  He did then have a brain MRI and it showed what we thought were a cluster of small lesions but after brain surgery it was determined that this was not even melanoma…it was a little bit of reaction from radiation he had to the ear face area.  His headaches went away after recovery from the surgery and about a month after finishing Interferon.  We were told that other than the surgery follow up MRI he would not need any more brain MRIs unless he presented with symptoms.

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                      Jaime.30
                      Participant

                        Hello.  My husbands primary was on his ear and they never did an MRI of the brain until he was having awful headaches for longer than a week.  He did then have a brain MRI and it showed what we thought were a cluster of small lesions but after brain surgery it was determined that this was not even melanoma…it was a little bit of reaction from radiation he had to the ear face area.  His headaches went away after recovery from the surgery and about a month after finishing Interferon.  We were told that other than the surgery follow up MRI he would not need any more brain MRIs unless he presented with symptoms.

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                        akls
                        Participant

                          Tricia,

                          I'm 3a since Dec. 08.  I did a year of interferon.  I had my first PET/CT head to toe last July. I had done an abdominal CT before starting interferon.  I see my onc. every 6 mos.  In may I will have blood work and a chest x-ray.  He said at my last appt. we might do another PET in July again.  First he had told me I wouldn't have another PET unless I was having symptoms.  I don't know what changed for him to suggest it yearly.  My Mel. specialists are at U of Mich. and they do NO scans without symptoms.  I have never had a brain MRI. 

                          Hope this helps.

                          Amy S. in Michigan

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                          akls
                          Participant

                            Tricia,

                            I'm 3a since Dec. 08.  I did a year of interferon.  I had my first PET/CT head to toe last July. I had done an abdominal CT before starting interferon.  I see my onc. every 6 mos.  In may I will have blood work and a chest x-ray.  He said at my last appt. we might do another PET in July again.  First he had told me I wouldn't have another PET unless I was having symptoms.  I don't know what changed for him to suggest it yearly.  My Mel. specialists are at U of Mich. and they do NO scans without symptoms.  I have never had a brain MRI. 

                            Hope this helps.

                            Amy S. in Michigan

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                            triciad
                            Participant

                              Thanks everyone for your advice!  It's a little scary knowing how melanoma can be silent, but active.  You've all put my mind at ease, as usual. 

                              My doctor is very close-lipped about everything.  I guess he doesn't want to add any anxiety to the mix.  Whenever I bring up a plan B, he tells me that we are not there and we'll cross that bridge if we get to it.  My visits are all of 2 minutes long because he's always backed up and trying to catch up.  My appointments are usually at the end of the day, so I run into it all the time.  I like him, but I don't like the lack of communication.  If I progress, I most likely will look for a new doctor who will explain things better and take more time with me.  Right now, I feel I'm just a number.

                              Thanks again for all of your help and for always being there to help.

                              Tricia

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                              triciad
                              Participant

                                Thanks everyone for your advice!  It's a little scary knowing how melanoma can be silent, but active.  You've all put my mind at ease, as usual. 

                                My doctor is very close-lipped about everything.  I guess he doesn't want to add any anxiety to the mix.  Whenever I bring up a plan B, he tells me that we are not there and we'll cross that bridge if we get to it.  My visits are all of 2 minutes long because he's always backed up and trying to catch up.  My appointments are usually at the end of the day, so I run into it all the time.  I like him, but I don't like the lack of communication.  If I progress, I most likely will look for a new doctor who will explain things better and take more time with me.  Right now, I feel I'm just a number.

                                Thanks again for all of your help and for always being there to help.

                                Tricia

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                                  dian in spokane
                                  Participant

                                    Tricia,

                                    I was stage 3B for 5 yrs before advancing. I don't think I ever had an MRI while I was stage 3

                                    But it's the 'back up' plan I want to discuss with you. I used to constantly worry about what I would do when or if I advanced, and tried to get my docs to discuss what options I might try if I did. BUT.. the thing is, you don't know if you will progress, when you will progress, or what that progression might involve. So planning ahead is almost futile!

                                    Plus.. you don't know what advances might take place in research during the interim. Say you decide ~right now~ that if you have a systemic spread, you are going to try 'Ipi' but maybe your progression doesn't happen for two years. In two years, ipi might be a drug of the past! Believe it, we've seen it happen here. The next big thing might be just a tiny idea right now. Some genetic breakthrough might happen that offers you a MUCH better chance. And trying to guess now what might be effective for you in two years just doesn't work. You might spend two years following every single advancement in melanoma studies, only to discover that your particular spread is best handled by surgery! (surgery is always my favorite option)

                                    Keeping informed about what's going on in the research and treatment of melanoma is a good thing. Maybe even essential. But doing it with an eye on keeping yourself informed is better than thinking of what the back up plan is. Less stressful. I do think it's important to be up to date…you can't always count on your doctors even knowing what the latest thing is.

                                     Hopefully, you'll be one of those people that NEVER progresses, so spending time worrying and obsessing over possible treatments doesn't help you..just adds to your stress. If and when you progress to stage IV, you'll need to make sure you are seeing the best doctor you can, weighing the best treatments you can….and THAT"S when you need to start thinking of that back up plan.

                                    I hope everthing goes great with your scans. And hey..if you are worried about getting an MRI, tell your doc you have been having headaches, or dizziness..and that you are worried about it.

                                    good luck,'

                                    dian

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                                    dian in spokane
                                    Participant

                                      Tricia,

                                      I was stage 3B for 5 yrs before advancing. I don't think I ever had an MRI while I was stage 3

                                      But it's the 'back up' plan I want to discuss with you. I used to constantly worry about what I would do when or if I advanced, and tried to get my docs to discuss what options I might try if I did. BUT.. the thing is, you don't know if you will progress, when you will progress, or what that progression might involve. So planning ahead is almost futile!

                                      Plus.. you don't know what advances might take place in research during the interim. Say you decide ~right now~ that if you have a systemic spread, you are going to try 'Ipi' but maybe your progression doesn't happen for two years. In two years, ipi might be a drug of the past! Believe it, we've seen it happen here. The next big thing might be just a tiny idea right now. Some genetic breakthrough might happen that offers you a MUCH better chance. And trying to guess now what might be effective for you in two years just doesn't work. You might spend two years following every single advancement in melanoma studies, only to discover that your particular spread is best handled by surgery! (surgery is always my favorite option)

                                      Keeping informed about what's going on in the research and treatment of melanoma is a good thing. Maybe even essential. But doing it with an eye on keeping yourself informed is better than thinking of what the back up plan is. Less stressful. I do think it's important to be up to date…you can't always count on your doctors even knowing what the latest thing is.

                                       Hopefully, you'll be one of those people that NEVER progresses, so spending time worrying and obsessing over possible treatments doesn't help you..just adds to your stress. If and when you progress to stage IV, you'll need to make sure you are seeing the best doctor you can, weighing the best treatments you can….and THAT"S when you need to start thinking of that back up plan.

                                      I hope everthing goes great with your scans. And hey..if you are worried about getting an MRI, tell your doc you have been having headaches, or dizziness..and that you are worried about it.

                                      good luck,'

                                      dian

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                                      triciad
                                      Participant

                                        Thanks Dian…you've put my mind at ease!  You're absolutely right  about assessing the situation when/if progression occurs.  Naturally, yours progressing at 5 years will not make me sleep better!  Take care and all the best to you!!!

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                                        triciad
                                        Participant

                                          Thanks Dian…you've put my mind at ease!  You're absolutely right  about assessing the situation when/if progression occurs.  Naturally, yours progressing at 5 years will not make me sleep better!  Take care and all the best to you!!!

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