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possible spread through blood

Forums Caregiver Community possible spread through blood

  • Post
    scalp MM 2014
    Participant

      Hi to all tonight and prayers for those in the fight and their caregivers, family and friends!

      Went to my 6 month check with Melanoma Oncologist Surgeon today. I am Stage 1B scalp Melanoma and was expecting a routine check. My upper abdomen began swelling a few weeks ago and no pain only discomfort from it pushing up on lungs, some short of breath. My Dr looks at my belly and says "What the hell?!!!"  I love him and if it weren't serious I would have laughed out loud. He is concerned that the Melanoma could have spread through the blood system and is ordered a CT scan to find out what is going on. Has anyone had this kind of spread or symptoms? I am oddly at peace with this, just feel like I went through a tornado and now have landed on the warm sand of the beach with all sun protection on of course!

    Viewing 8 reply threads
    • Replies
        Kim K
        Participant

          Was stage IIA, right shoulder blade, no lymph node involvement.  Became stage IV 7 years later via blood spread.  My lymph nodes have never been affected, even my SNB was clean…..  I think Janner mentioned something like 20% or less spread via the blood route with mel.  Rest is lymphatic spread….

          My mets were to my lung and pectoralis muscle.  5 years after VATS wedge resection of the lung tumor and IL-2, I have been NED.  As rare was my blood spread, even rarer is my fortunate durable remission which seems to be holding for the long haul.

          Kim K
          Participant

            Was stage IIA, right shoulder blade, no lymph node involvement.  Became stage IV 7 years later via blood spread.  My lymph nodes have never been affected, even my SNB was clean…..  I think Janner mentioned something like 20% or less spread via the blood route with mel.  Rest is lymphatic spread….

            My mets were to my lung and pectoralis muscle.  5 years after VATS wedge resection of the lung tumor and IL-2, I have been NED.  As rare was my blood spread, even rarer is my fortunate durable remission which seems to be holding for the long haul.

              scalp MM 2014
              Participant

                Hi Kim,

                So happy to hear you are NED!  I have been checking skin and lymph nodes monthly and having biopsies as well, but now realize there is no way to check blood for spread until it shows up and starts symptoms.  What were your symptoms that made Dr look for spread through blood?  Praying I am in the 80% or more that will not have spread through blood or lymph systems.

                scalp MM 2014
                Participant

                  Hi Kim,

                  So happy to hear you are NED!  I have been checking skin and lymph nodes monthly and having biopsies as well, but now realize there is no way to check blood for spread until it shows up and starts symptoms.  What were your symptoms that made Dr look for spread through blood?  Praying I am in the 80% or more that will not have spread through blood or lymph systems.

                  Kim K
                  Participant

                    No symptoms.

                    My back was hurting and my chiropracter wanted x-rays.  The mass was 1.5 cm and at the bottom of my lung field so happened to show up on my films that were really for lower back pain.  At that time and for stage 2A, even chest x-rays were considered low yeild.  The back pain is only due to misalignment / soft tissue issues.  After prolotherapy, that resolved.  Now I only need to get my right back injected for the muscle pain.

                    Kim K
                    Participant

                      No symptoms.

                      My back was hurting and my chiropracter wanted x-rays.  The mass was 1.5 cm and at the bottom of my lung field so happened to show up on my films that were really for lower back pain.  At that time and for stage 2A, even chest x-rays were considered low yeild.  The back pain is only due to misalignment / soft tissue issues.  After prolotherapy, that resolved.  Now I only need to get my right back injected for the muscle pain.

                      Kim K
                      Participant

                        No symptoms.

                        My back was hurting and my chiropracter wanted x-rays.  The mass was 1.5 cm and at the bottom of my lung field so happened to show up on my films that were really for lower back pain.  At that time and for stage 2A, even chest x-rays were considered low yeild.  The back pain is only due to misalignment / soft tissue issues.  After prolotherapy, that resolved.  Now I only need to get my right back injected for the muscle pain.

                        Squash
                        Participant

                          As far as I know everyone with melanoma has it in their blood stream that is why in some places they do circulating tumour cell tests which actually give you a good idea on your likelihood of distant spread based on how much you have in your blood stream.

                          I still dont understant why it isnt used when there is heaps of reseach in this area which can help those stage 1 and 11 patients who based on their scores in the CTC tests are likely to have distant spread and would benefit from aggressiv therapy.

                           

                          Squash
                          Participant

                            As far as I know everyone with melanoma has it in their blood stream that is why in some places they do circulating tumour cell tests which actually give you a good idea on your likelihood of distant spread based on how much you have in your blood stream.

                            I still dont understant why it isnt used when there is heaps of reseach in this area which can help those stage 1 and 11 patients who based on their scores in the CTC tests are likely to have distant spread and would benefit from aggressiv therapy.

                             

                            Squash
                            Participant

                              As far as I know everyone with melanoma has it in their blood stream that is why in some places they do circulating tumour cell tests which actually give you a good idea on your likelihood of distant spread based on how much you have in your blood stream.

                              I still dont understant why it isnt used when there is heaps of reseach in this area which can help those stage 1 and 11 patients who based on their scores in the CTC tests are likely to have distant spread and would benefit from aggressiv therapy.

                               

                              JC
                              Participant

                                This is where it’s confusing for me.  I have never understood if an early Stage I patient either has the tumor completely cut out if it was localized to that area of excision – or – if every melanoma patient no matter the depth of the lesion or how early the stage, has and will always have melanoma in their system and it’s just a matter of the immune system keeping it in check or if/when something triggers it to “activate” as metastasis.  It seems like what is being said here is every person diagnosed with melanoma will have melanoma cells left behind that always have the potential to come back later, that nobody is ever truly cleared of it with excision, even if early & thin.  Is that correct?  That would certainly impact how one might choose to follow up after diagnosis.  Appreciate any insight, maybe from Tim or medical/scientific experts.

                                JC
                                Participant

                                  This is where it’s confusing for me.  I have never understood if an early Stage I patient either has the tumor completely cut out if it was localized to that area of excision – or – if every melanoma patient no matter the depth of the lesion or how early the stage, has and will always have melanoma in their system and it’s just a matter of the immune system keeping it in check or if/when something triggers it to “activate” as metastasis.  It seems like what is being said here is every person diagnosed with melanoma will have melanoma cells left behind that always have the potential to come back later, that nobody is ever truly cleared of it with excision, even if early & thin.  Is that correct?  That would certainly impact how one might choose to follow up after diagnosis.  Appreciate any insight, maybe from Tim or medical/scientific experts.

                                  JC
                                  Participant

                                    This is where it’s confusing for me.  I have never understood if an early Stage I patient either has the tumor completely cut out if it was localized to that area of excision – or – if every melanoma patient no matter the depth of the lesion or how early the stage, has and will always have melanoma in their system and it’s just a matter of the immune system keeping it in check or if/when something triggers it to “activate” as metastasis.  It seems like what is being said here is every person diagnosed with melanoma will have melanoma cells left behind that always have the potential to come back later, that nobody is ever truly cleared of it with excision, even if early & thin.  Is that correct?  That would certainly impact how one might choose to follow up after diagnosis.  Appreciate any insight, maybe from Tim or medical/scientific experts.

                                    CHD
                                    Participant

                                      I am stage I-II and my pathology report specifically stated it was negative for lymphovascular invasion.  They look for evidence of tumor cells in the lymph or blood vessels to determine whether the cancer is likely to be capable of spreading through the blood stream.

                                      CHD
                                      Participant

                                        I am stage I-II and my pathology report specifically stated it was negative for lymphovascular invasion.  They look for evidence of tumor cells in the lymph or blood vessels to determine whether the cancer is likely to be capable of spreading through the blood stream.

                                        CHD
                                        Participant

                                          I am stage I-II and my pathology report specifically stated it was negative for lymphovascular invasion.  They look for evidence of tumor cells in the lymph or blood vessels to determine whether the cancer is likely to be capable of spreading through the blood stream.

                                          scalp MM 2014
                                          Participant

                                            Hi Anonymous,

                                            Sorry you don't want to reveal who you are, but that's ok we are all in this battle together. I had negative lymph node from SLNB and thought all was well and maybe still is, I haven't gotten my CT scans done yet! Yes, I agree, would like any insight from Tim or others with expertise. Hope all is well with you. God bless you.

                                            scalp MM 2014
                                            Participant

                                              Hi Anonymous,

                                              Sorry you don't want to reveal who you are, but that's ok we are all in this battle together. I had negative lymph node from SLNB and thought all was well and maybe still is, I haven't gotten my CT scans done yet! Yes, I agree, would like any insight from Tim or others with expertise. Hope all is well with you. God bless you.

                                              scalp MM 2014
                                              Participant

                                                Hi Anonymous,

                                                Sorry you don't want to reveal who you are, but that's ok we are all in this battle together. I had negative lymph node from SLNB and thought all was well and maybe still is, I haven't gotten my CT scans done yet! Yes, I agree, would like any insight from Tim or others with expertise. Hope all is well with you. God bless you.

                                                scalp MM 2014
                                                Participant

                                                  Hi Squash,

                                                  THank you for your reply.  I have never heard of  a circulating tumor cell test.  Do you have a link or website where I might educate about this?  Never realized it can be circulating in bloodstream just waiting to be activated, kinda scary.

                                                  scalp MM 2014
                                                  Participant

                                                    Hi Squash,

                                                    THank you for your reply.  I have never heard of  a circulating tumor cell test.  Do you have a link or website where I might educate about this?  Never realized it can be circulating in bloodstream just waiting to be activated, kinda scary.

                                                    scalp MM 2014
                                                    Participant

                                                      Hi Squash,

                                                      THank you for your reply.  I have never heard of  a circulating tumor cell test.  Do you have a link or website where I might educate about this?  Never realized it can be circulating in bloodstream just waiting to be activated, kinda scary.

                                                      Squash
                                                      Participant

                                                        There is a lot of research on circulationg tumour cells in the blood stream for melanoma and indeed all types of cancer and the higher the level in the blood stream the more likely distant spread will happen.

                                                        I have done the Maintrac one in Germany. In the US there is Cell Search i think it is called.

                                                        Anyway if you start looking at the research papers you will see that these tests have a very high predictive value and could be used for early stage melanoma patients who have high levels in their blood stream and thus in danger of distant spread despite their early staging.

                                                         

                                                        Squash
                                                        Participant

                                                          There is a lot of research on circulationg tumour cells in the blood stream for melanoma and indeed all types of cancer and the higher the level in the blood stream the more likely distant spread will happen.

                                                          I have done the Maintrac one in Germany. In the US there is Cell Search i think it is called.

                                                          Anyway if you start looking at the research papers you will see that these tests have a very high predictive value and could be used for early stage melanoma patients who have high levels in their blood stream and thus in danger of distant spread despite their early staging.

                                                           

                                                          Squash
                                                          Participant

                                                            There is a lot of research on circulationg tumour cells in the blood stream for melanoma and indeed all types of cancer and the higher the level in the blood stream the more likely distant spread will happen.

                                                            I have done the Maintrac one in Germany. In the US there is Cell Search i think it is called.

                                                            Anyway if you start looking at the research papers you will see that these tests have a very high predictive value and could be used for early stage melanoma patients who have high levels in their blood stream and thus in danger of distant spread despite their early staging.

                                                             

                                                            scalp MM 2014
                                                            Participant

                                                              Hi Kim,

                                                              So happy to hear you are NED!  I have been checking skin and lymph nodes monthly and having biopsies as well, but now realize there is no way to check blood for spread until it shows up and starts symptoms.  What were your symptoms that made Dr look for spread through blood?  Praying I am in the 80% or more that will not have spread through blood or lymph systems.

                                                            Kim K
                                                            Participant

                                                              Was stage IIA, right shoulder blade, no lymph node involvement.  Became stage IV 7 years later via blood spread.  My lymph nodes have never been affected, even my SNB was clean…..  I think Janner mentioned something like 20% or less spread via the blood route with mel.  Rest is lymphatic spread….

                                                              My mets were to my lung and pectoralis muscle.  5 years after VATS wedge resection of the lung tumor and IL-2, I have been NED.  As rare was my blood spread, even rarer is my fortunate durable remission which seems to be holding for the long haul.

                                                              Gene_S
                                                              Participant

                                                                Hello Susan,

                                                                My husband also had scalp mel but his was quite large at 10.5 mm and his SNB came back negative for cancer.  Beings his was large he started out at Stage III.  He had several local reoccurrences before it metas. to the liver and lungs.

                                                                You can read more about his journey on his profile.  But after his clinical trial he has been NED for over 2 years.

                                                                His was found when they did the scans as he had another local lesion show up that was unresectable as it was pressing on the C-1 C-2 cervial spine.  During the scans found to also be in his liver and lungs with several spots in each.

                                                                Judy (loving wife of Gene Stage IV and now NED)

                                                                Gene_S
                                                                Participant

                                                                  Hello Susan,

                                                                  My husband also had scalp mel but his was quite large at 10.5 mm and his SNB came back negative for cancer.  Beings his was large he started out at Stage III.  He had several local reoccurrences before it metas. to the liver and lungs.

                                                                  You can read more about his journey on his profile.  But after his clinical trial he has been NED for over 2 years.

                                                                  His was found when they did the scans as he had another local lesion show up that was unresectable as it was pressing on the C-1 C-2 cervial spine.  During the scans found to also be in his liver and lungs with several spots in each.

                                                                  Judy (loving wife of Gene Stage IV and now NED)

                                                                  Gene_S
                                                                  Participant

                                                                    Hello Susan,

                                                                    My husband also had scalp mel but his was quite large at 10.5 mm and his SNB came back negative for cancer.  Beings his was large he started out at Stage III.  He had several local reoccurrences before it metas. to the liver and lungs.

                                                                    You can read more about his journey on his profile.  But after his clinical trial he has been NED for over 2 years.

                                                                    His was found when they did the scans as he had another local lesion show up that was unresectable as it was pressing on the C-1 C-2 cervial spine.  During the scans found to also be in his liver and lungs with several spots in each.

                                                                    Judy (loving wife of Gene Stage IV and now NED)

                                                                      scalp MM 2014
                                                                      Participant

                                                                        Hi Judy,

                                                                        Thanks for your reply and give Gene a big hug from me!  He is truly an inspiration and encouragement for me regardless if I have recurrence or not.  What a battle he has been through, currently victorious, praise God! Did he ever have abdomen swelling with mets in liver?  Hugs to you too Judy, it must be hard at times yet you are there and that's all that is important. 

                                                                        scalp MM 2014
                                                                        Participant

                                                                          Hi Judy,

                                                                          Thanks for your reply and give Gene a big hug from me!  He is truly an inspiration and encouragement for me regardless if I have recurrence or not.  What a battle he has been through, currently victorious, praise God! Did he ever have abdomen swelling with mets in liver?  Hugs to you too Judy, it must be hard at times yet you are there and that's all that is important. 

                                                                          scalp MM 2014
                                                                          Participant

                                                                            Hi Judy,

                                                                            Thanks for your reply and give Gene a big hug from me!  He is truly an inspiration and encouragement for me regardless if I have recurrence or not.  What a battle he has been through, currently victorious, praise God! Did he ever have abdomen swelling with mets in liver?  Hugs to you too Judy, it must be hard at times yet you are there and that's all that is important. 

                                                                            Gene_S
                                                                            Participant

                                                                              Hi Susan,

                                                                              No he never had swelling in the abdomen that we know of but he has had a large stomach most of his life. 

                                                                              He didn't notice the ones in the lungs either.  As a matter of fact when we went to the doctor for a 6 month check we were surprised his had spread as we were hoping for time without the cancer.

                                                                              Now unfortunately we have a daughter battling colon cancer and peritoneal carcinamatosis so he has been very busy researching for her.

                                                                              Hope all goes well with you and you receive and NED status as well.

                                                                              Judy (loving wife of Gene)

                                                                              Gene_S
                                                                              Participant

                                                                                Hi Susan,

                                                                                No he never had swelling in the abdomen that we know of but he has had a large stomach most of his life. 

                                                                                He didn't notice the ones in the lungs either.  As a matter of fact when we went to the doctor for a 6 month check we were surprised his had spread as we were hoping for time without the cancer.

                                                                                Now unfortunately we have a daughter battling colon cancer and peritoneal carcinamatosis so he has been very busy researching for her.

                                                                                Hope all goes well with you and you receive and NED status as well.

                                                                                Judy (loving wife of Gene)

                                                                                Gene_S
                                                                                Participant

                                                                                  Hi Susan,

                                                                                  No he never had swelling in the abdomen that we know of but he has had a large stomach most of his life. 

                                                                                  He didn't notice the ones in the lungs either.  As a matter of fact when we went to the doctor for a 6 month check we were surprised his had spread as we were hoping for time without the cancer.

                                                                                  Now unfortunately we have a daughter battling colon cancer and peritoneal carcinamatosis so he has been very busy researching for her.

                                                                                  Hope all goes well with you and you receive and NED status as well.

                                                                                  Judy (loving wife of Gene)

                                                                                ed williams
                                                                                Participant

                                                                                  Hi Susan, if you look up Lymphatic system you will see that it is very similiar to the vascular system of the body as far as it connects the various regions of the body through lymph vessels. The fluid that is carried in the lymph system will eventually return to the venous blood supply, so that it can be circulated as plasma. There are two main ducts (thoracic and the right lymphatic) that connect the lymph system to the blood system. Melanoma once it gets into the lymph system can end up anywhere in the body, I remember reading some where that the brain, liver, Bones ,Abdomen, lungs and lymph nodes were the most common regions for Melanoma to metastasis to. I would wait for the results of the CT before jumping to any conclusion. Even if they find something they will have to do a needle biopsy to be certain. You say that you were stage 1b scalp in the past, which usually means a very good outcome for the future!!! Wishing you the best. ED

                                                                                  ed williams
                                                                                  Participant

                                                                                    Hi Susan, if you look up Lymphatic system you will see that it is very similiar to the vascular system of the body as far as it connects the various regions of the body through lymph vessels. The fluid that is carried in the lymph system will eventually return to the venous blood supply, so that it can be circulated as plasma. There are two main ducts (thoracic and the right lymphatic) that connect the lymph system to the blood system. Melanoma once it gets into the lymph system can end up anywhere in the body, I remember reading some where that the brain, liver, Bones ,Abdomen, lungs and lymph nodes were the most common regions for Melanoma to metastasis to. I would wait for the results of the CT before jumping to any conclusion. Even if they find something they will have to do a needle biopsy to be certain. You say that you were stage 1b scalp in the past, which usually means a very good outcome for the future!!! Wishing you the best. ED

                                                                                    ed williams
                                                                                    Participant

                                                                                      Hi Susan, if you look up Lymphatic system you will see that it is very similiar to the vascular system of the body as far as it connects the various regions of the body through lymph vessels. The fluid that is carried in the lymph system will eventually return to the venous blood supply, so that it can be circulated as plasma. There are two main ducts (thoracic and the right lymphatic) that connect the lymph system to the blood system. Melanoma once it gets into the lymph system can end up anywhere in the body, I remember reading some where that the brain, liver, Bones ,Abdomen, lungs and lymph nodes were the most common regions for Melanoma to metastasis to. I would wait for the results of the CT before jumping to any conclusion. Even if they find something they will have to do a needle biopsy to be certain. You say that you were stage 1b scalp in the past, which usually means a very good outcome for the future!!! Wishing you the best. ED

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