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More Bad News

Forums Cutaneous Melanoma Community More Bad News

  • Post
    sjl
    Participant

      My husband was diagnosed with mucosal melanoma of the nasl cavity in April.  He's had surgery for it twice with clear margins the second time plus the removal of several lymph nodes, one of which was malignant.  He's at stage 3:  T3c, N1, M0.  In addition to that they found another primary cancer, non small cell squamous in the lung. 

      My husband was diagnosed with mucosal melanoma of the nasl cavity in April.  He's had surgery for it twice with clear margins the second time plus the removal of several lymph nodes, one of which was malignant.  He's at stage 3:  T3c, N1, M0.  In addition to that they found another primary cancer, non small cell squamous in the lung. 

      They've held off on radiation while they figured out the lung and he is scheduled to have part of the lung removed in a couple of weeks.  Now, everything is up in the air again.  He woke up Sunday morning with a chain of lumps along the neck and swelling.  It has gotten worse.  We saw a doctor yesterday who said it's melanoma that has spread to the skin.  Biopsies were taken with a rush order and we will get an appointment ASAP after the results come back.   I can't believe how fast those bumps showed up.  We had just seen a doctor about a week earlier and asked about a small swelling at the top of the incision in the neck and were told that it was nothing to worry about.  We were told repeatedly yesterday that the delay in radiation has nothing to do with the melanoma coming back like it did.  I thought that's why we were supposed to do radiation in the first place!  I know that radiation doesn't always work but what hope is there for my husband now?  They are talking about doing a shorter but stronger course of radiation than originally planned and possibly radiating the lung now rather than removing a piece.  He's being checked for cKIT for the possibility of Glevec and maybe another clinical trial.  The doctor we saw yesterday had asked for the testing for cKIT back in May and we found out yesterday that it was never done.  He's asked again.  We are dealing with UPMC and the Hillman Cancer Center so we've got good doctors but even there, you have to stay on top of things yourself. 

      Any suggestions?  Is there any hope?

    Viewing 8 reply threads
    • Replies
        A
        Participant

          I am very sorry about your husband diagnosis. Mucosal melanoma is very rare. Hope the doctors will suggest the best treatment option for him. Because it is so rare, could you please share the symtoms your husband had before the diagnosis?

          A
          Participant

            I am very sorry about your husband diagnosis. Mucosal melanoma is very rare. Hope the doctors will suggest the best treatment option for him. Because it is so rare, could you please share the symtoms your husband had before the diagnosis?

              sjl
              Participant

                My husband felt fine.  One night he noticed what he described as a "cotton ball" in is nose that wouldn't come out.  He made an appointment with his PCP who thought it was a polyp and sent him to an ENT.  The ENT initially didn't like the way it looked so he had an CT scan done to make sure nothing had gone to his brain.  Nothing weird showed up so he thought it was a simple inverted papilloma and he'd go in, take it out, and that would be it.  Once he did the surgery, he again was suspicious of cancer but told me that even if it was the outlook would be good.  He was floored when it came back as melanoma.  He had never seen mucosal before.

                sjl
                Participant

                  My husband felt fine.  One night he noticed what he described as a "cotton ball" in is nose that wouldn't come out.  He made an appointment with his PCP who thought it was a polyp and sent him to an ENT.  The ENT initially didn't like the way it looked so he had an CT scan done to make sure nothing had gone to his brain.  Nothing weird showed up so he thought it was a simple inverted papilloma and he'd go in, take it out, and that would be it.  Once he did the surgery, he again was suspicious of cancer but told me that even if it was the outlook would be good.  He was floored when it came back as melanoma.  He had never seen mucosal before.

                  sjl
                  Participant

                    My husband felt fine.  One night he noticed what he described as a "cotton ball" in is nose that wouldn't come out.  He made an appointment with his PCP who thought it was a polyp and sent him to an ENT.  The ENT initially didn't like the way it looked so he had an CT scan done to make sure nothing had gone to his brain.  Nothing weird showed up so he thought it was a simple inverted papilloma and he'd go in, take it out, and that would be it.  Once he did the surgery, he again was suspicious of cancer but told me that even if it was the outlook would be good.  He was floored when it came back as melanoma.  He had never seen mucosal before.

                  A
                  Participant

                    I am very sorry about your husband diagnosis. Mucosal melanoma is very rare. Hope the doctors will suggest the best treatment option for him. Because it is so rare, could you please share the symtoms your husband had before the diagnosis?

                    jyc
                    Participant

                      Swollen lymphnodes can be a sign of other issues like infection or inflammation and not melanoma and you are right to be vigilant because of the sudden change.  Sounds like your team is now in quick action mode weighing in the radiation treatment and cKIT testing and that's a good thing and carry that momentum in case anything does turn up in the results.  

                      jyc
                      Participant

                        Swollen lymphnodes can be a sign of other issues like infection or inflammation and not melanoma and you are right to be vigilant because of the sudden change.  Sounds like your team is now in quick action mode weighing in the radiation treatment and cKIT testing and that's a good thing and carry that momentum in case anything does turn up in the results.  

                        jyc
                        Participant

                          Swollen lymphnodes can be a sign of other issues like infection or inflammation and not melanoma and you are right to be vigilant because of the sudden change.  Sounds like your team is now in quick action mode weighing in the radiation treatment and cKIT testing and that's a good thing and carry that momentum in case anything does turn up in the results.  

                          cliff61
                          Participant

                            I have stage 3 melanoma and have gone through two surgeries which removed a total of 24 nodes with 9 malignant and two large tumors over 6cm. The melanoma has continued to grow in my lymph nodes and so they wanted to do another surgery to remove them. I have opted out of the surgery and I am going into biochemotherapy this next week. My wife and I feel that this is the best course of action for us and what we have researched has a very good record with stage 3 melanoma which is mestatic.

                            I am 50 year old and in excellent health and very active, so we decided that we would hit it hard and strong and trust for the recovery after the biochemo.

                            You and your husband will be in my prayers.

                            cliff61
                            Participant

                              I have stage 3 melanoma and have gone through two surgeries which removed a total of 24 nodes with 9 malignant and two large tumors over 6cm. The melanoma has continued to grow in my lymph nodes and so they wanted to do another surgery to remove them. I have opted out of the surgery and I am going into biochemotherapy this next week. My wife and I feel that this is the best course of action for us and what we have researched has a very good record with stage 3 melanoma which is mestatic.

                              I am 50 year old and in excellent health and very active, so we decided that we would hit it hard and strong and trust for the recovery after the biochemo.

                              You and your husband will be in my prayers.

                                sjl
                                Participant

                                  We got the biopsy results today and it is definitely melanoma that has spread.  The doctor said he couldn't do surgey on it because he wouldn't know when to stop cutting.  He's describing it as a intersticial melanoma – not mucosal but not on the outside of the skin either.  It's around the area where the lymph nodes were removed.  We are seeing a melanoma specialist again and having another PEt Scan as soon as they can get it set up.  The doctor who saw the neck this time is an ENT who did extensive surgery after the first ENT did what he could do.  He said it is now unlikely that radiation will be done and I don't know what they will do now with my husband's second cancer, a primary lung cancer.  He doesn't know just what will be done but said the melanoma guy has a few ideas of soemthing he could try along the lines of chemo???  Maybe it's the same thing you will be getting. 

                                  Can these things be treated by local oncologists when guided by a melanoma specialist, even if it's a clinical trial?  We are two hours away from the cancer center (Hillman) and I have no idea how we are supposed to pay for everthing if they want us to stay there.  I know they have a family house but they still cost money, we have a kid in college, we are missing work and you know the deal.

                                  Can you tell me anything we should be asking?  I know about the cKit mutation and Glevec and my husband is being checked to see if he has the mutation.  Any suggestions you or anybody has are welcome.  My husband is 57 years old and in generally good health with the exception of COPD.

                                  Thank you for the prayers.  I will do the same for you.  It is faith and prayers that will get us through this and we all need to be praying for each other.

                                  sjl
                                  Participant

                                    We got the biopsy results today and it is definitely melanoma that has spread.  The doctor said he couldn't do surgey on it because he wouldn't know when to stop cutting.  He's describing it as a intersticial melanoma – not mucosal but not on the outside of the skin either.  It's around the area where the lymph nodes were removed.  We are seeing a melanoma specialist again and having another PEt Scan as soon as they can get it set up.  The doctor who saw the neck this time is an ENT who did extensive surgery after the first ENT did what he could do.  He said it is now unlikely that radiation will be done and I don't know what they will do now with my husband's second cancer, a primary lung cancer.  He doesn't know just what will be done but said the melanoma guy has a few ideas of soemthing he could try along the lines of chemo???  Maybe it's the same thing you will be getting. 

                                    Can these things be treated by local oncologists when guided by a melanoma specialist, even if it's a clinical trial?  We are two hours away from the cancer center (Hillman) and I have no idea how we are supposed to pay for everthing if they want us to stay there.  I know they have a family house but they still cost money, we have a kid in college, we are missing work and you know the deal.

                                    Can you tell me anything we should be asking?  I know about the cKit mutation and Glevec and my husband is being checked to see if he has the mutation.  Any suggestions you or anybody has are welcome.  My husband is 57 years old and in generally good health with the exception of COPD.

                                    Thank you for the prayers.  I will do the same for you.  It is faith and prayers that will get us through this and we all need to be praying for each other.

                                    sjl
                                    Participant

                                      We got the biopsy results today and it is definitely melanoma that has spread.  The doctor said he couldn't do surgey on it because he wouldn't know when to stop cutting.  He's describing it as a intersticial melanoma – not mucosal but not on the outside of the skin either.  It's around the area where the lymph nodes were removed.  We are seeing a melanoma specialist again and having another PEt Scan as soon as they can get it set up.  The doctor who saw the neck this time is an ENT who did extensive surgery after the first ENT did what he could do.  He said it is now unlikely that radiation will be done and I don't know what they will do now with my husband's second cancer, a primary lung cancer.  He doesn't know just what will be done but said the melanoma guy has a few ideas of soemthing he could try along the lines of chemo???  Maybe it's the same thing you will be getting. 

                                      Can these things be treated by local oncologists when guided by a melanoma specialist, even if it's a clinical trial?  We are two hours away from the cancer center (Hillman) and I have no idea how we are supposed to pay for everthing if they want us to stay there.  I know they have a family house but they still cost money, we have a kid in college, we are missing work and you know the deal.

                                      Can you tell me anything we should be asking?  I know about the cKit mutation and Glevec and my husband is being checked to see if he has the mutation.  Any suggestions you or anybody has are welcome.  My husband is 57 years old and in generally good health with the exception of COPD.

                                      Thank you for the prayers.  I will do the same for you.  It is faith and prayers that will get us through this and we all need to be praying for each other.

                                    cliff61
                                    Participant

                                      I have stage 3 melanoma and have gone through two surgeries which removed a total of 24 nodes with 9 malignant and two large tumors over 6cm. The melanoma has continued to grow in my lymph nodes and so they wanted to do another surgery to remove them. I have opted out of the surgery and I am going into biochemotherapy this next week. My wife and I feel that this is the best course of action for us and what we have researched has a very good record with stage 3 melanoma which is mestatic.

                                      I am 50 year old and in excellent health and very active, so we decided that we would hit it hard and strong and trust for the recovery after the biochemo.

                                      You and your husband will be in my prayers.

                                  Viewing 8 reply threads
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