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Previously Melanoma in right ear now Melanoma in right lung
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Previously Melanoma in right ear now Melanoma in right lung

› Forums › Cutaneous Melanoma Community › Previously Melanoma in right ear now Melanoma in right lung

  • Post
    • May 23, 2011 at 4:26 pm
    bcl
    Participant

      Hi all, I am from South Africa.

      I found this site purely by accident and am quite new to this type of forum. Not sure if I am using it correctly but here goes with crossed fingers that some responses will be forthcoming! I have not been able to find a topic similar to what I have.

      Skin cancer identified as malignent melanoma stage1 removed from outer right ear lobe 2006
      Started coughing in Jan 2011 and initial x-ray revealed lesion in lower right lung.

      Hi all, I am from South Africa.

      I found this site purely by accident and am quite new to this type of forum. Not sure if I am using it correctly but here goes with crossed fingers that some responses will be forthcoming! I have not been able to find a topic similar to what I have.

      Skin cancer identified as malignent melanoma stage1 removed from outer right ear lobe 2006
      Started coughing in Jan 2011 and initial x-ray revealed lesion in lower right lung.

      Subsequent CT Scan confirmed this but all blood and sputum tests were negative for cancer. Doctor advised me to wait 6 months and have scan repeated to see if any growth in lesion evident.

      Visited Oncologist for annual check-up following ear surgery and I told her of recent developments.
      She suggested a PET scan and this confirmed possible cancerous tumour.

      Surgery suggested and Metastasis Malignant Melanoma stage 4 removed April 2011 (3,5cm by 5 cm cut away). However, no signs of any spread identified.

      Saw Radiologist to discuss possible treatment and wait & see approach suggested due to lack of evidence that the mel had spread to any other part of my body. Will revisit in August for further X-ray and blood test.

      My concern is, will this spread or not. What I have read up so far indicates that stage 4 is incurable. However, if it has all been removed then surely this will not happen or am I wrong? Is there a possibility that it could already have spread but just does not show with the tests they do? The negative possibilities are freaking me out.

      Any input will be greatly appreciated or additional info supplied if required.

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    Viewing 7 reply threads
    • Replies
        • May 23, 2011 at 6:05 pm
        boot2aboot
        Participant

          are you seeing an oncologist that specializes in Melanoma?

          if not, that is your first step…

          secondly, i have lung nodules (smokers really have them) that are not cancerous…maybe that is why your doctor wants to wait?…i know they matched a ct with a pet scan to determine whether i had melanoma or not…

          thirdly, if your cancer 'metastized' to an organ or bone, then, yes…it is stage 4…there are more treatments available for stage 4 than for stage 3…yervoy just came on the market here in the U.S as a new treatment for metastic melanoma…i believe it is also approved in some europian countries as well

          we have alot of stage 4 people on this site that can help you much better than i can…still it is nice to have someone post what they can…i can imagine you are afraid and full of questions…i would know how to direct you to sites here to help you for information, but since you are from S.A., not sure about melanoma and treatments…

          If you can travel to the states…then, i would suggest reading the information on this site as well as the national cancer institute and then going on to http://www.clinicaltrials.gov to look at melanoma trials…i believe australia has good sites and medical treatment too as it has been hard hit with melanoma cases…we have a few people here from australia to comment on that…

          boots

          stage 3c,unknown primary

          diagnosed april 21, 2011

          • May 23, 2011 at 6:05 pm
          boot2aboot
          Participant

            are you seeing an oncologist that specializes in Melanoma?

            if not, that is your first step…

            secondly, i have lung nodules (smokers really have them) that are not cancerous…maybe that is why your doctor wants to wait?…i know they matched a ct with a pet scan to determine whether i had melanoma or not…

            thirdly, if your cancer 'metastized' to an organ or bone, then, yes…it is stage 4…there are more treatments available for stage 4 than for stage 3…yervoy just came on the market here in the U.S as a new treatment for metastic melanoma…i believe it is also approved in some europian countries as well

            we have alot of stage 4 people on this site that can help you much better than i can…still it is nice to have someone post what they can…i can imagine you are afraid and full of questions…i would know how to direct you to sites here to help you for information, but since you are from S.A., not sure about melanoma and treatments…

            If you can travel to the states…then, i would suggest reading the information on this site as well as the national cancer institute and then going on to http://www.clinicaltrials.gov to look at melanoma trials…i believe australia has good sites and medical treatment too as it has been hard hit with melanoma cases…we have a few people here from australia to comment on that…

            boots

            stage 3c,unknown primary

            diagnosed april 21, 2011

              • May 24, 2011 at 8:28 am
              Wally
              Participant

                Hi Boots

                Thanks for taking the trouble to respond. Really appreciated. I am seeing an Oncologist that specialises in Melanoma but after the surgery I was referred directly by the Thoracic Surgeon to the Oncology Radiologist who decided on a wait and see approach with quarterly check-up by means of chect X-rays and blood tests. She could not justify the discomfort, expense and wasted time in giving me Chemo / Radiation on the probability of there being cancerous cells left in my body. She will rather treat them at a later stage IF they do re-emerge. They seem to be very confident that all the melanoma was removed surgically. I however, remain sceptical and this is probably not good for my morale as it stays in the back of my mind all the time. There are no trials in SA to my knowledge and I cannot afford to travel to Australia or the States for that purpose.

                • May 24, 2011 at 8:28 am
                Wally
                Participant

                  Hi Boots

                  Thanks for taking the trouble to respond. Really appreciated. I am seeing an Oncologist that specialises in Melanoma but after the surgery I was referred directly by the Thoracic Surgeon to the Oncology Radiologist who decided on a wait and see approach with quarterly check-up by means of chect X-rays and blood tests. She could not justify the discomfort, expense and wasted time in giving me Chemo / Radiation on the probability of there being cancerous cells left in my body. She will rather treat them at a later stage IF they do re-emerge. They seem to be very confident that all the melanoma was removed surgically. I however, remain sceptical and this is probably not good for my morale as it stays in the back of my mind all the time. There are no trials in SA to my knowledge and I cannot afford to travel to Australia or the States for that purpose.

                • May 23, 2011 at 7:32 pm
                dian in spokane
                Participant

                  Hi, I answered this on the other board, but am pasting it here in case you are having trouble navigating the board:

                  Hi, welcome to the board.  Your situation is complicated somewhat by the fact that you are in South America, where I doubt there are many clinical trials available . If you were here, you might have been offered a trial, which would have involved either taking that lung tumor out and having it tested for mutations on the BRAF gene, or leaving the tumor in and trying some drug to shrink it.

                  Having said that, any time melanoma is surgerically resectable it should be done (in my opinion) If I'd been given the choice up here in the US, I would go almost automatically for the lung surgery

                  having gone that way, even here in the US, your choices are limited for resected stage IV melanoma. Mostly it is just observation..scans, follow up tests

                  there is certainly the possibilty that you will have Melanoma return again. Now that you have had this progression (to your lungs) even though it has been removed, there is likely some melanoma in your body hanging around waiting for the opportunity to colonize in a new area. THere's really no telling when or where that might be, so NOT WORRYING is a good idea..since it won;'t help. You could go years without seeing melanoma againn, or maybe never see it again, or it could come back in 3 months almost anywhere in your body. Rigorous followup is what you need.

                  I do not know if there are any melanoma specialists or melanoma centers where you live, but if there IS.. it would be in your best interest to go to such a place and make sure you take all of your records and have them reviewed. Those melanoma specialists are in much closer touch with what's going on in this fast growing field than your average general oncologists.

                  In the meantime..good luck, and it's great news that they were able to remove it all from your lungs surgically. that's not always possible!

                  welcome to the board,

                  dian in spokane

                   

                  • May 23, 2011 at 7:32 pm
                  dian in spokane
                  Participant

                    Hi, I answered this on the other board, but am pasting it here in case you are having trouble navigating the board:

                    Hi, welcome to the board.  Your situation is complicated somewhat by the fact that you are in South America, where I doubt there are many clinical trials available . If you were here, you might have been offered a trial, which would have involved either taking that lung tumor out and having it tested for mutations on the BRAF gene, or leaving the tumor in and trying some drug to shrink it.

                    Having said that, any time melanoma is surgerically resectable it should be done (in my opinion) If I'd been given the choice up here in the US, I would go almost automatically for the lung surgery

                    having gone that way, even here in the US, your choices are limited for resected stage IV melanoma. Mostly it is just observation..scans, follow up tests

                    there is certainly the possibilty that you will have Melanoma return again. Now that you have had this progression (to your lungs) even though it has been removed, there is likely some melanoma in your body hanging around waiting for the opportunity to colonize in a new area. THere's really no telling when or where that might be, so NOT WORRYING is a good idea..since it won;'t help. You could go years without seeing melanoma againn, or maybe never see it again, or it could come back in 3 months almost anywhere in your body. Rigorous followup is what you need.

                    I do not know if there are any melanoma specialists or melanoma centers where you live, but if there IS.. it would be in your best interest to go to such a place and make sure you take all of your records and have them reviewed. Those melanoma specialists are in much closer touch with what's going on in this fast growing field than your average general oncologists.

                    In the meantime..good luck, and it's great news that they were able to remove it all from your lungs surgically. that's not always possible!

                    welcome to the board,

                    dian in spokane

                     

                      • May 24, 2011 at 8:18 am
                      Wally
                      Participant

                        Hi Dian

                         

                        I replied to you by e-mail as that is how I was notified. Did not realise I could do it here as I thouight it populates to this site. Thanks for moving the post to the main bulliton board. Will you get it or must I copy / paste the contents here?

                         

                        Regards

                         

                        Wally

                        • May 24, 2011 at 8:18 am
                        Wally
                        Participant

                          Hi Dian

                           

                          I replied to you by e-mail as that is how I was notified. Did not realise I could do it here as I thouight it populates to this site. Thanks for moving the post to the main bulliton board. Will you get it or must I copy / paste the contents here?

                           

                          Regards

                           

                          Wally

                          • May 24, 2011 at 1:01 pm
                          Wally
                          Participant

                            Hi Dian

                            herewith e-mail that went wrong

                            Dear Dian

                            Thanks so much for your response. It is encouraging to get this view and the wait and see approach is what has been adopted.

                            Just a correction, I am in South Africa and we do have good Oncology Centers here.

                            I was just concerned about a recurrence and I have basically been given the assurance that I am NED for now, but as I said, reading all the posts in this forum and other research done I got the impression that once stage 4, that is it, you are done. I suppose in a way that fact remains but it could go into remission for years thus allowing for quality of life until such time – should it arrive.

                            Thank you once again

                            Wally

                            • May 24, 2011 at 3:22 pm
                            dian in spokane
                            Participant

                              just one thing. I want you to know that even if your disease should progress..it is NOT automatically the end!

                              My FIRST diagnosis of melanoma was in 1983. I progressed to stage III in 2003  and then on to stage IV in 2008 I am currently stage IV with no evidence of disease (surgically resected like you) and have been for 2 yrs.

                              The statistics for stage IV are NOT good, but it's better for those of us who are in remission, Still even without remission, some people attain stable disease.

                              We have MANY stage IV members on this board. Some, like me, doing great, others who are in a contstant battle with melanoma but still beating it.

                              SO keep your spirit up and live life to the fullest. None of us really knows how it's gonna all end till it does..

                              Good luck,

                               

                              dian

                              • May 25, 2011 at 10:25 am
                              Wally
                              Participant

                                Too true Dian

                                Your words are so encouraging because I was so down in the dumps as nobody not only bothered to tell me how serious this disease was but also what the possitives were and that it is not the end of the line, really. You have been in remission for two years and to me that is absolutely fantastic news. I had these visions of each follow-up exam showing the mel re-appearing. However, like you, it may take 20 years before it comes back and by then I will have led a full life as I will be 85 years old.

                                I have taken the decision to forget about the disease and focus on life.

                                Thanks for all yourinput.

                                Keep up your good work in encouraging us downward beings.

                                Good luck going forward and God bless

                                • May 25, 2011 at 10:25 am
                                Wally
                                Participant

                                  Too true Dian

                                  Your words are so encouraging because I was so down in the dumps as nobody not only bothered to tell me how serious this disease was but also what the possitives were and that it is not the end of the line, really. You have been in remission for two years and to me that is absolutely fantastic news. I had these visions of each follow-up exam showing the mel re-appearing. However, like you, it may take 20 years before it comes back and by then I will have led a full life as I will be 85 years old.

                                  I have taken the decision to forget about the disease and focus on life.

                                  Thanks for all yourinput.

                                  Keep up your good work in encouraging us downward beings.

                                  Good luck going forward and God bless

                                  • May 24, 2011 at 3:22 pm
                                  dian in spokane
                                  Participant

                                    just one thing. I want you to know that even if your disease should progress..it is NOT automatically the end!

                                    My FIRST diagnosis of melanoma was in 1983. I progressed to stage III in 2003  and then on to stage IV in 2008 I am currently stage IV with no evidence of disease (surgically resected like you) and have been for 2 yrs.

                                    The statistics for stage IV are NOT good, but it's better for those of us who are in remission, Still even without remission, some people attain stable disease.

                                    We have MANY stage IV members on this board. Some, like me, doing great, others who are in a contstant battle with melanoma but still beating it.

                                    SO keep your spirit up and live life to the fullest. None of us really knows how it's gonna all end till it does..

                                    Good luck,

                                     

                                    dian

                                    • May 24, 2011 at 1:01 pm
                                    Wally
                                    Participant

                                      Hi Dian

                                      herewith e-mail that went wrong

                                      Dear Dian

                                      Thanks so much for your response. It is encouraging to get this view and the wait and see approach is what has been adopted.

                                      Just a correction, I am in South Africa and we do have good Oncology Centers here.

                                      I was just concerned about a recurrence and I have basically been given the assurance that I am NED for now, but as I said, reading all the posts in this forum and other research done I got the impression that once stage 4, that is it, you are done. I suppose in a way that fact remains but it could go into remission for years thus allowing for quality of life until such time – should it arrive.

                                      Thank you once again

                                      Wally

                                    • May 24, 2011 at 1:17 am
                                    WalterA
                                    Participant

                                      My melanoma first appeared on my right ear lobe in 2002. In 2008, we found it in my left lung. Earlier this year, it was in  my liver. So, yes, it can spread. That doesn't mean it will. But it can. The treatments I've had have successfully dealt with the immediate circumstances

                                      • May 24, 2011 at 1:17 am
                                      WalterA
                                      Participant

                                        My melanoma first appeared on my right ear lobe in 2002. In 2008, we found it in my left lung. Earlier this year, it was in  my liver. So, yes, it can spread. That doesn't mean it will. But it can. The treatments I've had have successfully dealt with the immediate circumstances

                                          • May 24, 2011 at 8:14 am
                                          Wally
                                          Participant

                                            Your first reappearance took 6 years compared to my 5 years but your second resappearance appears to have spread rather more rapidly at 3 years – mine being primary on ear in 2006 (supposed to have been all removed, clear and not likely to spread) and in lung in 2011. As Dian said, no point in fretting but it remains a concern espaciay as I have been led to believe (again) that it is NED for the present.

                                            I will be having chest X-rays and blood tests done in August as a measure of follow up – do you think that this is sufficient – is that what you undergo?

                                            • May 24, 2011 at 8:14 am
                                            Wally
                                            Participant

                                              Your first reappearance took 6 years compared to my 5 years but your second resappearance appears to have spread rather more rapidly at 3 years – mine being primary on ear in 2006 (supposed to have been all removed, clear and not likely to spread) and in lung in 2011. As Dian said, no point in fretting but it remains a concern espaciay as I have been led to believe (again) that it is NED for the present.

                                              I will be having chest X-rays and blood tests done in August as a measure of follow up – do you think that this is sufficient – is that what you undergo?

                                            • May 25, 2011 at 8:02 am
                                            Hereiam
                                            Participant

                                              Have you asked your doctor about  virotherapy? It can destroy cancer cells without harm to   the rest of the organism. I have a friend who works in place where virotherapy is used – she said that results are good. It could stop the melanoma from spreading… Maybe ask your doctor to be sure.

                                              Best wishes! 

                                                • May 25, 2011 at 10:14 am
                                                Wally
                                                Participant

                                                  Much appreciated "Hereiam"

                                                  Will discuss at my next appointment for the check-up in August.

                                                  Bearing in mind what most posts have said, there is little point on dwelling on the negatives, just focus on life because it is still there!

                                                  Thanks for your input and I wish and pray for your speedy recovery.

                                                   

                                                  God be with you

                                                  • May 25, 2011 at 10:14 am
                                                  Wally
                                                  Participant

                                                    Much appreciated "Hereiam"

                                                    Will discuss at my next appointment for the check-up in August.

                                                    Bearing in mind what most posts have said, there is little point on dwelling on the negatives, just focus on life because it is still there!

                                                    Thanks for your input and I wish and pray for your speedy recovery.

                                                     

                                                    God be with you

                                                  • May 25, 2011 at 8:02 am
                                                  Hereiam
                                                  Participant

                                                    Have you asked your doctor about  virotherapy? It can destroy cancer cells without harm to   the rest of the organism. I have a friend who works in place where virotherapy is used – she said that results are good. It could stop the melanoma from spreading… Maybe ask your doctor to be sure.

                                                    Best wishes! 

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