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Where to from here

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  • Post
    • January 6, 2017 at 1:58 pm
    Nemesis
    Participant

      I feel guilty about writing this, since there are so many people here struggling with more serious diagnosis than mine. But it's been less than a month since the entire melanoma story entered my life, so my anxiety levels are really high.

       

      Short story: ugly looking mole, biopsy, 0.94 mm Breslow depth, no ulceration, but a mitosis of 1, had WSE last week with SNB, according to my doctor, the melanoma had spread further than the original biopsy caught (do not know how much deeper), SNB was benign. So the suggested treatment is dermatology visits every 6 months.

       

      That is not helping my anxiety though. I was always obsessed with getting melanoma, always stayed out of the sun, hate tanning, watched my many moles carefully and so on. It was during pregnancy (I have a 6 month old boy) that I lost track of my moles (was also said it is normal for them to change because pregnancy hormones).

       

      How do I deal with the fear of it returning? Now I have an "increased risk of breast cancer" fear to compound to that. I know early detection is the key, but I just feel like there are melanoma cells still left in my body. Should I go for an anual PET scan as well? What test would catch the smallest sign of melanoma?

       

      I am sorry, I probably sound like a lunatic.

    Viewing 8 reply threads
    • Replies
        • January 6, 2017 at 2:04 pm
        Hukill
        Participant

          In the summer of 2015 I had stage 2b on my head. They thought it didn't spread either, had pet scan. 1 year later I felt a knot in my lower neck upper shoulder area. Called my oncologist surgeon and he had me drive the 3 hours to see him. It was melanoma and another pet scan found 7 mets in my lungs. I was lucky we caught it early. I would get scans as often as I could due to the rapid growth and spread melanoma has.

          • January 6, 2017 at 2:04 pm
          Hukill
          Participant

            In the summer of 2015 I had stage 2b on my head. They thought it didn't spread either, had pet scan. 1 year later I felt a knot in my lower neck upper shoulder area. Called my oncologist surgeon and he had me drive the 3 hours to see him. It was melanoma and another pet scan found 7 mets in my lungs. I was lucky we caught it early. I would get scans as often as I could due to the rapid growth and spread melanoma has.

              • January 6, 2017 at 2:06 pm
              Nemesis
              Participant

                So anual pet scans? Twice a year pet scans?

                 

                • January 6, 2017 at 2:08 pm
                Janner
                Participant

                  Stage 2b is NOT the same as stage 1B and no insurance will approve semi-annual PET scans let alone any PET scans.  Being realistic here.

                  • January 6, 2017 at 2:08 pm
                  Janner
                  Participant

                    Stage 2b is NOT the same as stage 1B and no insurance will approve semi-annual PET scans let alone any PET scans.  Being realistic here.

                    • January 6, 2017 at 2:50 pm
                    Nemesis
                    Participant

                      I know that. But I have access to an affordable non-US medical system, so I could get them on my own if I wanted to. I don't want to do myself more harm than good or keep my anxiety levels high by having them.

                      • January 6, 2017 at 2:50 pm
                      Nemesis
                      Participant

                        I know that. But I have access to an affordable non-US medical system, so I could get them on my own if I wanted to. I don't want to do myself more harm than good or keep my anxiety levels high by having them.

                        • January 6, 2017 at 2:50 pm
                        Nemesis
                        Participant

                          I know that. But I have access to an affordable non-US medical system, so I could get them on my own if I wanted to. I don't want to do myself more harm than good or keep my anxiety levels high by having them.

                          • January 6, 2017 at 2:08 pm
                          Janner
                          Participant

                            Stage 2b is NOT the same as stage 1B and no insurance will approve semi-annual PET scans let alone any PET scans.  Being realistic here.

                            • January 6, 2017 at 2:06 pm
                            Nemesis
                            Participant

                              So anual pet scans? Twice a year pet scans?

                               

                              • January 6, 2017 at 2:06 pm
                              Nemesis
                              Participant

                                So anual pet scans? Twice a year pet scans?

                                 

                              • January 6, 2017 at 2:04 pm
                              Hukill
                              Participant

                                In the summer of 2015 I had stage 2b on my head. They thought it didn't spread either, had pet scan. 1 year later I felt a knot in my lower neck upper shoulder area. Called my oncologist surgeon and he had me drive the 3 hours to see him. It was melanoma and another pet scan found 7 mets in my lungs. I was lucky we caught it early. I would get scans as often as I could due to the rapid growth and spread melanoma has.

                                • January 6, 2017 at 2:06 pm
                                Janner
                                Participant

                                  Now you get to learn to live with uncertainty.  Every melanoma warrior – no matter how big or small their lesion – lives with it.  The goal is not to let it rule your life.  The first year is the worst but you do manage to cope better as time goes on.  PET scans are rarely offered to stage I individuals and PET scans do not pick up microscopic melanoma, only larger tumors.  They are also very high in radiation.  Just as a comparison, I had a .88mm lesion, 1 mitosis – very similar to yours – and no SNB because mine was under 1mm.  That was 15 years ago. 

                                  Figure out the things you can control.  Self checks (monthly), derm visits semi-annually, sun safety, being healthy and living life.  Then let go of the rest.  Just like any other type of accident, you can only control so much.  The rest you can't worry about because it isn't yours to control.  Focus on your baby, not your melanoma.  And honestly, stay off the internet.  It will only increase anxiety, not lessen it.  The more you focus on your melanoma, the more difficult it will be to move past this time and back to a time where you are watchful but not obsessed.

                                  • January 6, 2017 at 2:06 pm
                                  Janner
                                  Participant

                                    Now you get to learn to live with uncertainty.  Every melanoma warrior – no matter how big or small their lesion – lives with it.  The goal is not to let it rule your life.  The first year is the worst but you do manage to cope better as time goes on.  PET scans are rarely offered to stage I individuals and PET scans do not pick up microscopic melanoma, only larger tumors.  They are also very high in radiation.  Just as a comparison, I had a .88mm lesion, 1 mitosis – very similar to yours – and no SNB because mine was under 1mm.  That was 15 years ago. 

                                    Figure out the things you can control.  Self checks (monthly), derm visits semi-annually, sun safety, being healthy and living life.  Then let go of the rest.  Just like any other type of accident, you can only control so much.  The rest you can't worry about because it isn't yours to control.  Focus on your baby, not your melanoma.  And honestly, stay off the internet.  It will only increase anxiety, not lessen it.  The more you focus on your melanoma, the more difficult it will be to move past this time and back to a time where you are watchful but not obsessed.

                                    • January 6, 2017 at 2:06 pm
                                    Janner
                                    Participant

                                      Now you get to learn to live with uncertainty.  Every melanoma warrior – no matter how big or small their lesion – lives with it.  The goal is not to let it rule your life.  The first year is the worst but you do manage to cope better as time goes on.  PET scans are rarely offered to stage I individuals and PET scans do not pick up microscopic melanoma, only larger tumors.  They are also very high in radiation.  Just as a comparison, I had a .88mm lesion, 1 mitosis – very similar to yours – and no SNB because mine was under 1mm.  That was 15 years ago. 

                                      Figure out the things you can control.  Self checks (monthly), derm visits semi-annually, sun safety, being healthy and living life.  Then let go of the rest.  Just like any other type of accident, you can only control so much.  The rest you can't worry about because it isn't yours to control.  Focus on your baby, not your melanoma.  And honestly, stay off the internet.  It will only increase anxiety, not lessen it.  The more you focus on your melanoma, the more difficult it will be to move past this time and back to a time where you are watchful but not obsessed.

                                        • January 6, 2017 at 2:52 pm
                                        Nemesis
                                        Participant

                                          I rationally understand that you are very correct in what you are saying, but emotionally it's another ball game. I hope that once the news wears off a bit I will be able to detach from this diagnosis and not let it control my life.

                                           

                                          • January 6, 2017 at 2:52 pm
                                          Nemesis
                                          Participant

                                            I rationally understand that you are very correct in what you are saying, but emotionally it's another ball game. I hope that once the news wears off a bit I will be able to detach from this diagnosis and not let it control my life.

                                             

                                            • January 6, 2017 at 2:52 pm
                                            Nemesis
                                            Participant

                                              I rationally understand that you are very correct in what you are saying, but emotionally it's another ball game. I hope that once the news wears off a bit I will be able to detach from this diagnosis and not let it control my life.

                                               

                                              • January 6, 2017 at 3:29 pm
                                              Janner
                                              Participant

                                                It rarely happens immediately 🙂 it takes time.  But that's why I stress staying off the internet.  I have worked with MANY early stagers over the years and the ones that see to do the best emotionally are the ones who consciously choose to not research melanoma.  I have kept in email touch with many.  We all get the logical/emotional problems, I suffer from that myself.  Just saying if there is any way you can help yourself move on, then removing yourself from sites like this is a really good move.  Not to say you can't come and ask questions, but constantly monitoring the site keeps anxiety high.   Good luck.

                                                • January 6, 2017 at 3:29 pm
                                                Janner
                                                Participant

                                                  It rarely happens immediately 🙂 it takes time.  But that's why I stress staying off the internet.  I have worked with MANY early stagers over the years and the ones that see to do the best emotionally are the ones who consciously choose to not research melanoma.  I have kept in email touch with many.  We all get the logical/emotional problems, I suffer from that myself.  Just saying if there is any way you can help yourself move on, then removing yourself from sites like this is a really good move.  Not to say you can't come and ask questions, but constantly monitoring the site keeps anxiety high.   Good luck.

                                                  • January 6, 2017 at 3:29 pm
                                                  Janner
                                                  Participant

                                                    It rarely happens immediately 🙂 it takes time.  But that's why I stress staying off the internet.  I have worked with MANY early stagers over the years and the ones that see to do the best emotionally are the ones who consciously choose to not research melanoma.  I have kept in email touch with many.  We all get the logical/emotional problems, I suffer from that myself.  Just saying if there is any way you can help yourself move on, then removing yourself from sites like this is a really good move.  Not to say you can't come and ask questions, but constantly monitoring the site keeps anxiety high.   Good luck.

                                                  • January 6, 2017 at 7:32 pm
                                                  UBContributor
                                                  Participant

                                                    Regular Dr visits are the most common followup for 1B, may be PET sometimes. No test available for catching early spread. What is ur stage?

                                                    • January 6, 2017 at 7:32 pm
                                                    UBContributor
                                                    Participant

                                                      Regular Dr visits are the most common followup for 1B, may be PET sometimes. No test available for catching early spread. What is ur stage?

                                                        • January 7, 2017 at 8:47 am
                                                        Nemesis
                                                        Participant

                                                          T1BN0T0.

                                                          • January 7, 2017 at 8:47 am
                                                          Nemesis
                                                          Participant

                                                            T1BN0T0.

                                                            • January 7, 2017 at 8:35 pm
                                                            Nemesis
                                                            Participant

                                                              I meant, T1bN0Mx actually.

                                                              • January 7, 2017 at 8:35 pm
                                                              Nemesis
                                                              Participant

                                                                I meant, T1bN0Mx actually.

                                                                • January 7, 2017 at 8:35 pm
                                                                Nemesis
                                                                Participant

                                                                  I meant, T1bN0Mx actually.

                                                                  • January 7, 2017 at 8:47 am
                                                                  Nemesis
                                                                  Participant

                                                                    T1BN0T0.

                                                                  • January 6, 2017 at 7:32 pm
                                                                  UBContributor
                                                                  Participant

                                                                    Regular Dr visits are the most common followup for 1B, may be PET sometimes. No test available for catching early spread. What is ur stage?

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