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Melanoma back after 22 years

Forums General Melanoma Community Melanoma back after 22 years

  • This topic has 54 replies, 14 voices, and was last updated 13 years ago by soniagodwin.
  • Post
    tiberius7947
    Participant

      I live in British Columbia, Canada. I am a 63 year old man who had a superficial spreading melanoma on my lower back removed 22 years ago. I had this mole on my back for 10 years and my family doctor said it was nothing to worry about. It was the size of a quarter, and was removed when I saw a dermatologist  after it tingled when I brushed my hand against it. Fast forward to the present, about 5 months ago I noticed a small lump on my back , 3 inches above the site of the original melanoma.

      I live in British Columbia, Canada. I am a 63 year old man who had a superficial spreading melanoma on my lower back removed 22 years ago. I had this mole on my back for 10 years and my family doctor said it was nothing to worry about. It was the size of a quarter, and was removed when I saw a dermatologist  after it tingled when I brushed my hand against it. Fast forward to the present, about 5 months ago I noticed a small lump on my back , 3 inches above the site of the original melanoma. My family doctor said it was nothing to worry about, but when I noticed it getting bigger and starting to hurt, I said " I want it off". It turned out to be melanoma in a lymph node. I went to the B.C. cancer agency in Vancouver, the oncologist looked me over, and I was given a full body FDG pet scan.  The pet scan was negative.  There was no Sentinal node biopsy, and nothing else done. I was told to see the oncologist in July. The last 3 weeks. I've had diareha which is unusual for me, and I have soreness in my armpits although I can't feel any large glands other than a pea shaped gland under each armpit. I was surprised the Cancer oncologist  didn't mention any chemo or other protocol to help me beat this. I am scared and would appreciate any advice you can give me. I pray for everyone going through this disease. Any prayers you can spare are much appreciated.

    Viewing 19 reply threads
    • Replies
        TracyLee
        Participant

          Prayers for you, certainly.

          YOU know your body, insist and persist to get what you need, as soon as possible. I'm not familiar with Canada's health plan, so not sure how long this could take?

          I've had 4 recurrences in a year. Each time, the doctor thought it was nothing, but took it off to reassure me. Each time, unfortunately, I was right that something was wrong.

          Pain is NOT normal, is NOT a good sign, and should be addressed quickly.

          If you are able, see another doctor if you feel this doctor is not taking you seriously. It's YOUR life, and you must advocate for yourself in this situation.

          On a more positive note, your posting that it has been 22 years gives ME hope and encouragement.

           

          TracyLee

          Stage IV as of last week

            tiberius7947
            Participant

              Thanks TracyLee, I appreciate you kind words. I've read about your struggle, and I admire your fortitude and spirit. I'll keep you in my prayers along with all the others that share this common enemy.

              tiberius7947
              Participant

                Thanks TracyLee, I appreciate you kind words. I've read about your struggle, and I admire your fortitude and spirit. I'll keep you in my prayers along with all the others that share this common enemy.

                nicoli
                Participant

                  I couldn't agree with TracyLee more. I have had 4 spots of recurring melanoma on my scalp. Each spot  looked diffferent from the others and none of them looked like "normal" melanoma.  As each spot was biopsied, the surgeon said he would be really surprised if it turned out to be melanoma.  He was wrong  every time.

                  You know your body. I don't know Canadian healthcare system either but I would be very surprised if they don't test you as soon as possible.

                  Nicki, Stage 3b, scalp

                  nicoli
                  Participant

                    I couldn't agree with TracyLee more. I have had 4 spots of recurring melanoma on my scalp. Each spot  looked diffferent from the others and none of them looked like "normal" melanoma.  As each spot was biopsied, the surgeon said he would be really surprised if it turned out to be melanoma.  He was wrong  every time.

                    You know your body. I don't know Canadian healthcare system either but I would be very surprised if they don't test you as soon as possible.

                    Nicki, Stage 3b, scalp

                  TracyLee
                  Participant

                    Prayers for you, certainly.

                    YOU know your body, insist and persist to get what you need, as soon as possible. I'm not familiar with Canada's health plan, so not sure how long this could take?

                    I've had 4 recurrences in a year. Each time, the doctor thought it was nothing, but took it off to reassure me. Each time, unfortunately, I was right that something was wrong.

                    Pain is NOT normal, is NOT a good sign, and should be addressed quickly.

                    If you are able, see another doctor if you feel this doctor is not taking you seriously. It's YOUR life, and you must advocate for yourself in this situation.

                    On a more positive note, your posting that it has been 22 years gives ME hope and encouragement.

                     

                    TracyLee

                    Stage IV as of last week

                    bcl
                    Participant

                      Hi, I live in BC – I am early staged, but if I were you I'd want to see an actual melanoma specialist to discuss your concerns. Unfortunately I don't believe there are any actual melanoma specialists in our province, but Dr Smylie, at the Cross Cancer Institute in Edmonton, is a highly regarded melanoma oncologist and a real decent human being. (He is also running ipi trials; one of the systemic treatments showing much promise.)  All you need is a referral from a family doctor or GP   – and BC Med covers the appointment costs. (The office has a list of hotels that provide accommodation discounts to patients and there is a network of volunteers who provide transportation between hotel and hospital.)

                      If you like I can post his contact info here.  All the best to you, linda

                        tiberius7947
                        Participant

                          I went to the Vancouver Cancer Agency. I saw a Doctor Klasa who I was told was part of the Melanoma team. He is an Oncologist. Do you know if B.C.s MSP covers treatment in Canada outside of B.C.?

                          tiberius7947
                          Participant

                            I went to the Vancouver Cancer Agency. I saw a Doctor Klasa who I was told was part of the Melanoma team. He is an Oncologist. Do you know if B.C.s MSP covers treatment in Canada outside of B.C.?

                            bcl
                            Participant

                              Yes, I believe BC med would cover the costs- I've been in touch with others who were treated in AB. And my own consultation with Smylie was covered.

                              bcl
                              Participant

                                Yes, I believe BC med would cover the costs- I've been in touch with others who were treated in AB. And my own consultation with Smylie was covered.

                                soniagodwin
                                Guest

                                  [email protected] Hi Dear How are you today, I hope all is well. My name is miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response ([email protected])

                                  soniagodwin
                                  Guest

                                    [email protected] Hi Dear How are you today, I hope all is well. My name is miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response ([email protected])

                                  bcl
                                  Participant

                                    Hi, I live in BC – I am early staged, but if I were you I'd want to see an actual melanoma specialist to discuss your concerns. Unfortunately I don't believe there are any actual melanoma specialists in our province, but Dr Smylie, at the Cross Cancer Institute in Edmonton, is a highly regarded melanoma oncologist and a real decent human being. (He is also running ipi trials; one of the systemic treatments showing much promise.)  All you need is a referral from a family doctor or GP   – and BC Med covers the appointment costs. (The office has a list of hotels that provide accommodation discounts to patients and there is a network of volunteers who provide transportation between hotel and hospital.)

                                    If you like I can post his contact info here.  All the best to you, linda

                                    lhaley
                                    Participant

                                      I originally had a mole removed in 1979. 27 years later it came back as a lump under the scar. It was deep and I was then staged as Stage 4.  Since then I've had way to many recurrances but for me surgery has been my treatment. I did originally participate in a trial with GMCSF but have had 5 recurrances since I finished. 

                                      Once they surgically make you NED (no evidence of disease) there are few options. If you are stage 3 there is interfuron and at least in the states a few trials that you could get the drug vs a placebo. 

                                      I would look into your other issues but it's amazing what stress can do to your body.  I hope you continue to have negative scans.  It's obvious that your immune system has fought this for you for the last 22 years. I hope it continues to kick mels butt!

                                      Linda

                                      lhaley
                                      Participant

                                        I originally had a mole removed in 1979. 27 years later it came back as a lump under the scar. It was deep and I was then staged as Stage 4.  Since then I've had way to many recurrances but for me surgery has been my treatment. I did originally participate in a trial with GMCSF but have had 5 recurrances since I finished. 

                                        Once they surgically make you NED (no evidence of disease) there are few options. If you are stage 3 there is interfuron and at least in the states a few trials that you could get the drug vs a placebo. 

                                        I would look into your other issues but it's amazing what stress can do to your body.  I hope you continue to have negative scans.  It's obvious that your immune system has fought this for you for the last 22 years. I hope it continues to kick mels butt!

                                        Linda

                                          tiberius7947
                                          Participant

                                            Well Linda, 27 years later is amazing. That's what's so frustrating about this disease. It hides  and surprises you when you think you have it beat. I hear IL-2 has better success than interferon. My Pet scan was negative, but that dosen't mean I don't have melanoma cells in the body. Apparently it can't show small numbers of cancer cells. I want to hit this hard, like a sword being plunged into the fire to make it stronger.

                                            tiberius7947
                                            Participant

                                              Well Linda, 27 years later is amazing. That's what's so frustrating about this disease. It hides  and surprises you when you think you have it beat. I hear IL-2 has better success than interferon. My Pet scan was negative, but that dosen't mean I don't have melanoma cells in the body. Apparently it can't show small numbers of cancer cells. I want to hit this hard, like a sword being plunged into the fire to make it stronger.

                                              lhaley
                                              Participant

                                                I agree about hitting it hard but without measurable disease many options are out.  You need to talk to your Dr about getting your blood tested for your HLA factor and also for the B-raf mutation.   Both of these are important pieces to know to get into different trials.

                                                I had multiple primaries but all were caught thin and really never gave it a thought that it would come back, and back and back!  6 recurrances at this time.  However, this year has been remarkable with the progress that has been made for new developments of drugs. 

                                                lhaley
                                                Participant

                                                  I agree about hitting it hard but without measurable disease many options are out.  You need to talk to your Dr about getting your blood tested for your HLA factor and also for the B-raf mutation.   Both of these are important pieces to know to get into different trials.

                                                  I had multiple primaries but all were caught thin and really never gave it a thought that it would come back, and back and back!  6 recurrances at this time.  However, this year has been remarkable with the progress that has been made for new developments of drugs. 

                                                Wally
                                                Participant

                                                  Good morning

                                                  I am posting from South Africa as I was also recently tested possitive stage 4 MM in my right lung after having a MM removed from my right ear 5 years ago. I can understand your fear and frustration as that is how I feel / felt and cannot seem to get over the sceptisism on the advice / input received from various practitioners.

                                                  I cannot believe the apparent apathy shown by the medical fraternaty and them not taking decisive action to address the obvious – they are surely aware of the dangers of this disease?

                                                  I sicerely pray for you and trust that you will get the necessary treatment – please do not leave it – get something done immediately.

                                                  Keep well

                                                   

                                                  Wally

                                                    nicoli
                                                    Participant

                                                      Wally, I am so proud of you.

                                                      Just yesterday or so you first posted on this site and already you are offering encouragement and hope to another.  This is how it works, we give and get HOPE, encouragement and online hugs.

                                                      Nicki, Stage 3b, scalp

                                                      nicoli
                                                      Participant

                                                        Wally, I am so proud of you.

                                                        Just yesterday or so you first posted on this site and already you are offering encouragement and hope to another.  This is how it works, we give and get HOPE, encouragement and online hugs.

                                                        Nicki, Stage 3b, scalp

                                                      Wally
                                                      Participant

                                                        Good morning

                                                        I am posting from South Africa as I was also recently tested possitive stage 4 MM in my right lung after having a MM removed from my right ear 5 years ago. I can understand your fear and frustration as that is how I feel / felt and cannot seem to get over the sceptisism on the advice / input received from various practitioners.

                                                        I cannot believe the apparent apathy shown by the medical fraternaty and them not taking decisive action to address the obvious – they are surely aware of the dangers of this disease?

                                                        I sicerely pray for you and trust that you will get the necessary treatment – please do not leave it – get something done immediately.

                                                        Keep well

                                                         

                                                        Wally

                                                        dian in spokane
                                                        Participant

                                                          Like  linda, I am one of the people on this board who had recurrences after many years. 20 for me. I was diagnosed with multiple primaries back in 1983, then advanced to stage 3 with a lump near the site of a former melanoma. After wide excision I did intereron, the most common treatment for stage 3 patients. I am kind of surprised they have not discussed interferon with you, since it's fairly routine to offer it to stage 3 patients.

                                                          I don't know if it's financially feasible for you to go outside the Canadian health care system, but if it is, there's a great melanoma center in Seattle, the Seattle Cancer Care Alliance.

                                                          Your diarreah may well be a result of stress, but there's more concern about those pea shaped bumps. Did you show those to your oncologist?

                                                          We've got a few BC members on the board, hopefully they will see your note.

                                                          welcome to the board

                                                          dian in spokane

                                                          dian in spokane
                                                          Participant

                                                            Like  linda, I am one of the people on this board who had recurrences after many years. 20 for me. I was diagnosed with multiple primaries back in 1983, then advanced to stage 3 with a lump near the site of a former melanoma. After wide excision I did intereron, the most common treatment for stage 3 patients. I am kind of surprised they have not discussed interferon with you, since it's fairly routine to offer it to stage 3 patients.

                                                            I don't know if it's financially feasible for you to go outside the Canadian health care system, but if it is, there's a great melanoma center in Seattle, the Seattle Cancer Care Alliance.

                                                            Your diarreah may well be a result of stress, but there's more concern about those pea shaped bumps. Did you show those to your oncologist?

                                                            We've got a few BC members on the board, hopefully they will see your note.

                                                            welcome to the board

                                                            dian in spokane

                                                            ShariC
                                                            Participant

                                                              Hi – I'm one of the few that will throw the option of bio-chemotherapy in the "ring" of options you are considering.  I had it.  It IS an option for Stage III patients although not very common.  I wanted to "throw the kitchen sink" at this – I much prefer the "plunging the sword into the fire" analogy, tho! 

                                                              So, I did it, I got through it and while I was doing it a small tumor in my axillary region (armpit) shrunk and disappeared.  So…I don't know how much time it bought me…but, I'm confident it bought me time.  When we're ALL living this life of not knowing really how much time before MM ramps up and takes us, the best you can do, I think, is find ways to buy time.  I'm certain that if it bought me a month, I'll one day be grateful for that month.  If it bought me many years…I'll be estatic and I'll feel so very, very lucky. 

                                                              My next scan is at the end of June…won't know more about the effectiveness of trying the bio-chem until then.  So, I can't be a complete advocate for it at this point.  Just wanted to chime in.  – Shari

                                                                Lisa13
                                                                Participant

                                                                  I'm from Toronto and was diagnosed with Melanoma earlier this year – a bump on my back which was originally diagnosed as a cyst.

                                                                  You should be seeing a melanoma specialist and they should be prepping you to have the lymph node removed if it's melanoma. It doesn't make sense that you're seeing someone in July and they don't seem to be expediting your situation.  When I was diagnosed by a second dermatologist, they immediately referred me to the melanoma specialist at Princess Margaret and I was scheduled for surgery 3 weeks later.  I never had a sentinel node biopsy – they simply gave me a petscan the day before surgery and took 19 nodes out during surgery.

                                                                  Lisa

                                                                  Lisa13
                                                                  Participant

                                                                    I'm from Toronto and was diagnosed with Melanoma earlier this year – a bump on my back which was originally diagnosed as a cyst.

                                                                    You should be seeing a melanoma specialist and they should be prepping you to have the lymph node removed if it's melanoma. It doesn't make sense that you're seeing someone in July and they don't seem to be expediting your situation.  When I was diagnosed by a second dermatologist, they immediately referred me to the melanoma specialist at Princess Margaret and I was scheduled for surgery 3 weeks later.  I never had a sentinel node biopsy – they simply gave me a petscan the day before surgery and took 19 nodes out during surgery.

                                                                    Lisa

                                                                    Lisa13
                                                                    Participant

                                                                      How was the melanoma in your lymph node diagnosed?  A clear PETscan is a good sign – it means the cancer hasn't spread which is why the oncologist is having you wait to see someone.  That being said, if the melanoma has been confirmed my pathology, then you should be seeing a melanoma specialist and also a surgical oncologist to have your lymph node removed (along with others that may be in jeopardy.  Don't wait until July, get a referral for a melanoma specialist as your local hospital.

                                                                      When I was diagnosed, I had a huge golf ball size lump in my groin. My surgical oncologist felt it and said there was very likely cancer in there.  It was very sore and freaking me out. That being said, after 2 biopsies, the lymph node was negative – it was my immune system fighting this off. I ended up having 1 lymph node (beside the swollen one) confirmed with melanoma, but my immune system was doing it's job.  Pain doesn't always mean something is terribly wrong, but to make yourself feel better, please see someone.

                                                                      Lisa13
                                                                      Participant

                                                                        How was the melanoma in your lymph node diagnosed?  A clear PETscan is a good sign – it means the cancer hasn't spread which is why the oncologist is having you wait to see someone.  That being said, if the melanoma has been confirmed my pathology, then you should be seeing a melanoma specialist and also a surgical oncologist to have your lymph node removed (along with others that may be in jeopardy.  Don't wait until July, get a referral for a melanoma specialist as your local hospital.

                                                                        When I was diagnosed, I had a huge golf ball size lump in my groin. My surgical oncologist felt it and said there was very likely cancer in there.  It was very sore and freaking me out. That being said, after 2 biopsies, the lymph node was negative – it was my immune system fighting this off. I ended up having 1 lymph node (beside the swollen one) confirmed with melanoma, but my immune system was doing it's job.  Pain doesn't always mean something is terribly wrong, but to make yourself feel better, please see someone.

                                                                        tiberius7947
                                                                        Participant

                                                                          I very much appreciate the help and input all of you here have given me. When my melanoma came back after 22 years appearing in a lymph node, my family doctor took it out and the pathology came back positive. I then saw a melanoma oncologist at the Vancouver  Cancer clinic where he had me have a full body FDG Pet Scan which came out negative. There wasn't a sentinal node biopsy done.  Was it deemed not necessary because of the negative Pet scan? I just don't know how reliable a FDG Pet scan is for finding melanoma. My view of life is never to go quietly into the night. I truly believe with a disease like this you have to " take it to the limit" to quote the Eagles song. I read that story about DR. Rosenberg  who took stem cells from a 55 year old stage 4 patient. He grew the stem cells till they numbered in the billions. The patient had chemotheropy( 06-C-0136), followed by full body irradiationen2 treatments a day for three days).  Then he had 10 rounds of IL-2. All of these treatments were to weaken the melonoma cells to the point they could be killed in the final chapter. The final chapter was to  infuse the billions of Stem cells back into his body. His full body scan after was totally negative for 5 years. This is what I want, but I don't know anyone in Canada that does this. Since I live in Canada, to have this done in the States would probably cost me six figures. I feel there are better treatments out there, but our medical system dosen't want to spend the bucks. Again, God bless you all and keep fighting. I'm thinking of you all.

                                                                           

                                                                          tiberius7947
                                                                          Participant

                                                                            I very much appreciate the help and input all of you here have given me. When my melanoma came back after 22 years appearing in a lymph node, my family doctor took it out and the pathology came back positive. I then saw a melanoma oncologist at the Vancouver  Cancer clinic where he had me have a full body FDG Pet Scan which came out negative. There wasn't a sentinal node biopsy done.  Was it deemed not necessary because of the negative Pet scan? I just don't know how reliable a FDG Pet scan is for finding melanoma. My view of life is never to go quietly into the night. I truly believe with a disease like this you have to " take it to the limit" to quote the Eagles song. I read that story about DR. Rosenberg  who took stem cells from a 55 year old stage 4 patient. He grew the stem cells till they numbered in the billions. The patient had chemotheropy( 06-C-0136), followed by full body irradiationen2 treatments a day for three days).  Then he had 10 rounds of IL-2. All of these treatments were to weaken the melonoma cells to the point they could be killed in the final chapter. The final chapter was to  infuse the billions of Stem cells back into his body. His full body scan after was totally negative for 5 years. This is what I want, but I don't know anyone in Canada that does this. Since I live in Canada, to have this done in the States would probably cost me six figures. I feel there are better treatments out there, but our medical system dosen't want to spend the bucks. Again, God bless you all and keep fighting. I'm thinking of you all.

                                                                             

                                                                            dian in spokane
                                                                            Participant

                                                                              Okay, a couple of things. .First…. A 'sentinal node biopsy' is generally done at the time of (just prior to) a 'wide excision' of a primary melanoma. typically a mole or skin lesion. 22 yrs ago, when you had your primary melanoma, no one did sentinal node biopsies.

                                                                              Here's how that's done, some radioactive dye is injected at the site of the melanoma, and they track the pathway of that substance to the nearest lymph node basin and take out a node or a few, and test them for melanoma to see if it's spread into the lymphatic basin.

                                                                              If they took a 'lymph node' from you, then they already know it's in your lymphatic system.

                                                                              But when I read your earlier post (I'll go look at it again) I thought you said it was a 'lump' near your original site.Which sounds more like a subcutaneous tumor, or what they call an 'in-transit' tumor, or sometimes a 'satelite tumor', if it is very close to your original site.

                                                                              Also, once they went and dug out that lump/bump/lymph node.. lets call it a mass, they interrupted the lymphatic channels, so  there might have been no way for them to do any kind of sentinal node biopsy.

                                                                              Next, the PET scan. Once they've found melanoma is in your lymphatic system, the next step is to look pretty quick to see if it's already gone somewhere else that you can't see. So that PET scan HAS elimated a few worries. You have no tumors large enough to register on that hiding out in your liver or lungs waiting to knock you down. So it is some good, a diagnositic tool. It can give you false positves (more than false negatives) So other things besides cancer will cause that scan to 'light up' like..scar tissue, or inflammation, other lung diseases.

                                                                              I don't think a PET ever misses a big mass, but small stuff can elude it. My dad always said 'don't sweat the small stuff' and I try to remember that.

                                                                              the BIG stuff for you is to get a grip on your disease. You need to find out all you can, get copies of pathology reports, ask your stage, do not stay with a doctor who doesn't care to even fill you in on your own status. Take charge.

                                                                              So that means learning all you can, and doing all you can to find the best care you can. There are several Canadians on the board, and I hope they can network with you and make sure you find out the best course of action up there, where the system is so differen than here.

                                                                              Do not go losing hope at this point, or let any medical people lead you that direction. If we understand you correctly, you are currently NED(no evidence of disease) and could stay that way for a long time. But you are at a MUCH higher risk for more advanced melanoma now than you were these last 22 yrs as an early stage patient.

                                                                              All doctors, here in the US and there in Canada, have WAY too many patients. You have only one patient, so you need to make yourself into the head of your medical team.

                                                                              dian.

                                                                              dian in spokane
                                                                              Participant

                                                                                Okay, a couple of things. .First…. A 'sentinal node biopsy' is generally done at the time of (just prior to) a 'wide excision' of a primary melanoma. typically a mole or skin lesion. 22 yrs ago, when you had your primary melanoma, no one did sentinal node biopsies.

                                                                                Here's how that's done, some radioactive dye is injected at the site of the melanoma, and they track the pathway of that substance to the nearest lymph node basin and take out a node or a few, and test them for melanoma to see if it's spread into the lymphatic basin.

                                                                                If they took a 'lymph node' from you, then they already know it's in your lymphatic system.

                                                                                But when I read your earlier post (I'll go look at it again) I thought you said it was a 'lump' near your original site.Which sounds more like a subcutaneous tumor, or what they call an 'in-transit' tumor, or sometimes a 'satelite tumor', if it is very close to your original site.

                                                                                Also, once they went and dug out that lump/bump/lymph node.. lets call it a mass, they interrupted the lymphatic channels, so  there might have been no way for them to do any kind of sentinal node biopsy.

                                                                                Next, the PET scan. Once they've found melanoma is in your lymphatic system, the next step is to look pretty quick to see if it's already gone somewhere else that you can't see. So that PET scan HAS elimated a few worries. You have no tumors large enough to register on that hiding out in your liver or lungs waiting to knock you down. So it is some good, a diagnositic tool. It can give you false positves (more than false negatives) So other things besides cancer will cause that scan to 'light up' like..scar tissue, or inflammation, other lung diseases.

                                                                                I don't think a PET ever misses a big mass, but small stuff can elude it. My dad always said 'don't sweat the small stuff' and I try to remember that.

                                                                                the BIG stuff for you is to get a grip on your disease. You need to find out all you can, get copies of pathology reports, ask your stage, do not stay with a doctor who doesn't care to even fill you in on your own status. Take charge.

                                                                                So that means learning all you can, and doing all you can to find the best care you can. There are several Canadians on the board, and I hope they can network with you and make sure you find out the best course of action up there, where the system is so differen than here.

                                                                                Do not go losing hope at this point, or let any medical people lead you that direction. If we understand you correctly, you are currently NED(no evidence of disease) and could stay that way for a long time. But you are at a MUCH higher risk for more advanced melanoma now than you were these last 22 yrs as an early stage patient.

                                                                                All doctors, here in the US and there in Canada, have WAY too many patients. You have only one patient, so you need to make yourself into the head of your medical team.

                                                                                dian.

                                                                                tiberius7947
                                                                                Participant

                                                                                  Thanks very much for the information you have provided me. I just have to get this more than 3 weeks of diareha investigated. I'm going to ask my doctor for a barium xray to start. My wife thinks it's nerves, but I know my body and something is wrong, so not knowing dosen't work for me.

                                                                                  tiberius7947
                                                                                  Participant

                                                                                    Thanks very much for the information you have provided me. I just have to get this more than 3 weeks of diareha investigated. I'm going to ask my doctor for a barium xray to start. My wife thinks it's nerves, but I know my body and something is wrong, so not knowing dosen't work for me.

                                                                                    nicoli
                                                                                    Participant

                                                                                      When I did biochemo in January of this year, I was told it has a 14% response rate. 14 out of 100 people will benefit. Not good odds but somebody has to be in that 14%, why not you?  Unfortunately, I was not in the 14%.

                                                                                      None of our drugs right now have much more than a 30% or so response rate (someone please correct me if I am wrong). So it is worth trying anything we reasonably can in hopes that we can find one that works for us.

                                                                                      Nicki, Stage 3b, scalp

                                                                                      nicoli
                                                                                      Participant

                                                                                        When I did biochemo in January of this year, I was told it has a 14% response rate. 14 out of 100 people will benefit. Not good odds but somebody has to be in that 14%, why not you?  Unfortunately, I was not in the 14%.

                                                                                        None of our drugs right now have much more than a 30% or so response rate (someone please correct me if I am wrong). So it is worth trying anything we reasonably can in hopes that we can find one that works for us.

                                                                                        Nicki, Stage 3b, scalp

                                                                                      ShariC
                                                                                      Participant

                                                                                        Hi – I'm one of the few that will throw the option of bio-chemotherapy in the "ring" of options you are considering.  I had it.  It IS an option for Stage III patients although not very common.  I wanted to "throw the kitchen sink" at this – I much prefer the "plunging the sword into the fire" analogy, tho! 

                                                                                        So, I did it, I got through it and while I was doing it a small tumor in my axillary region (armpit) shrunk and disappeared.  So…I don't know how much time it bought me…but, I'm confident it bought me time.  When we're ALL living this life of not knowing really how much time before MM ramps up and takes us, the best you can do, I think, is find ways to buy time.  I'm certain that if it bought me a month, I'll one day be grateful for that month.  If it bought me many years…I'll be estatic and I'll feel so very, very lucky. 

                                                                                        My next scan is at the end of June…won't know more about the effectiveness of trying the bio-chem until then.  So, I can't be a complete advocate for it at this point.  Just wanted to chime in.  – Shari

                                                                                        Mary-E
                                                                                        Participant

                                                                                          I am also in BC.  I was able to see Dr. Smylie in Edmonton and the visit was covered by BC MSP as I was referred by a BC Doctor. I, like Linda, would suggest you look into going to see him.  

                                                                                          I was told by an Oncologist in Vancouver that there was no point in doing scans (I'm stage 3) because if my disease progressed I was not going to survive.  It was very reassuring to see Dr Smylie who had  several options for stage 4 mel.

                                                                                          Mary-Ellen 

                                                                                          Mary-E
                                                                                          Participant

                                                                                            I am also in BC.  I was able to see Dr. Smylie in Edmonton and the visit was covered by BC MSP as I was referred by a BC Doctor. I, like Linda, would suggest you look into going to see him.  

                                                                                            I was told by an Oncologist in Vancouver that there was no point in doing scans (I'm stage 3) because if my disease progressed I was not going to survive.  It was very reassuring to see Dr Smylie who had  several options for stage 4 mel.

                                                                                            Mary-Ellen 

                                                                                              tiberius7947
                                                                                              Participant

                                                                                                Mary-Ellen did you see an oncologist at the Vancouver Cancer Clinic? Are Pet Scans totally unreliable? Can you tell me what options are avilable with DR. Smylie?

                                                                                                tiberius7947
                                                                                                Participant

                                                                                                  Mary-Ellen did you see an oncologist at the Vancouver Cancer Clinic? Are Pet Scans totally unreliable? Can you tell me what options are avilable with DR. Smylie?

                                                                                                  Mary-E
                                                                                                  Participant

                                                                                                    My case is a bit unusual in that I had a vulvar melanoma so I saw the team of Gyne-oncologists in Vancouver.  I'm sorry I don't know anything about PET scans…I was told I didn't qualify for a PET and have since had two CT scans in the 20 months since my initial diagnosis.  In my case Dr. Smylie didn't have anything for me (this was in July '10) at stage 3, but did some options if my disease should progress to stage 4 ( a ckit trial and Ipi I think).  Things may have changed since I saw him, worth checking it out I think (also important to note: mucosal mel such as  I had means I don't qualify for some trials)..  I'm very glad I made the trip to Edmonton.  I was able to get a lot of questions answered and for the first time had some hope if the mel should return…there seemed to be no options in BC.

                                                                                                     

                                                                                                    Wishing you well, Mary-Ellen

                                                                                                    Mary-E
                                                                                                    Participant

                                                                                                      My case is a bit unusual in that I had a vulvar melanoma so I saw the team of Gyne-oncologists in Vancouver.  I'm sorry I don't know anything about PET scans…I was told I didn't qualify for a PET and have since had two CT scans in the 20 months since my initial diagnosis.  In my case Dr. Smylie didn't have anything for me (this was in July '10) at stage 3, but did some options if my disease should progress to stage 4 ( a ckit trial and Ipi I think).  Things may have changed since I saw him, worth checking it out I think (also important to note: mucosal mel such as  I had means I don't qualify for some trials)..  I'm very glad I made the trip to Edmonton.  I was able to get a lot of questions answered and for the first time had some hope if the mel should return…there seemed to be no options in BC.

                                                                                                       

                                                                                                      Wishing you well, Mary-Ellen

                                                                                                      lhaley
                                                                                                      Participant

                                                                                                        PET/CT scans are not unreliable. If something is picked up on the PET then other scans or biopsies are needed due to false positives.  2 weeks ago the PET picked up a small mass on my arm. Further testing was done and recurrant melanoma was once again found.  If they had done just a ct scan it would most likely not have picked this area up on the arm.  For melanoma they do full body PETS. This way things on the arms and legs are picked up.  The PET does not show masses in the brain, uterus,colon or bladder due to the thickness of the organ or the activity that is already going on in that area. 

                                                                                                        Linda

                                                                                                        lhaley
                                                                                                        Participant

                                                                                                          PET/CT scans are not unreliable. If something is picked up on the PET then other scans or biopsies are needed due to false positives.  2 weeks ago the PET picked up a small mass on my arm. Further testing was done and recurrant melanoma was once again found.  If they had done just a ct scan it would most likely not have picked this area up on the arm.  For melanoma they do full body PETS. This way things on the arms and legs are picked up.  The PET does not show masses in the brain, uterus,colon or bladder due to the thickness of the organ or the activity that is already going on in that area. 

                                                                                                          Linda

                                                                                                        jimjoeb
                                                                                                        Participant

                                                                                                          I'm a Canadian in Ottawa. The system can do better for you. Check in with this site which is a Canadian one as well as the Canadian cancer society who has a BC branch who can guide you through the BC provincial health care system.

                                                                                                          http://melanomanetwork.ca/page.php?page=4

                                                                                                          jimjoeb
                                                                                                          Participant

                                                                                                            I'm a Canadian in Ottawa. The system can do better for you. Check in with this site which is a Canadian one as well as the Canadian cancer society who has a BC branch who can guide you through the BC provincial health care system.

                                                                                                            http://melanomanetwork.ca/page.php?page=4

                                                                                                            JoanR
                                                                                                            Participant

                                                                                                              So sorry to hear of your frustrations. I live in Victoria and in the 10 years since I lost my husband to Melanoma I have been a attempting to see if some improvements can be made to the dismal treatment Melanoma patients receive iin BC. Firstly, there are NO melanoma specialists in BC,  so with that in mind, please do everything you can to see Dr.Smylie in edmonton. He is a specialist and they have a world class mel clinic at the Cross Cancer Cnetre in Edmonton. We even have had a MPIP lady from NFLD travel to see him.

                                                                                                              Take charge of your care, your appointments, and don't let them tell you not to worry , you know your body,  I haven't been online for a while, but will try and come back to see how you are getting along. bcl will provide you with excellent advice and information. 

                                                                                                              Good Luck, and even if you haven't had any encouragment from BCCA , you should be optimistic as thery are many inovative treatments now….just not in BC.

                                                                                                              Do you live in vancouver?   Joan R

                                                                                                              JoanR
                                                                                                              Participant

                                                                                                                So sorry to hear of your frustrations. I live in Victoria and in the 10 years since I lost my husband to Melanoma I have been a attempting to see if some improvements can be made to the dismal treatment Melanoma patients receive iin BC. Firstly, there are NO melanoma specialists in BC,  so with that in mind, please do everything you can to see Dr.Smylie in edmonton. He is a specialist and they have a world class mel clinic at the Cross Cancer Cnetre in Edmonton. We even have had a MPIP lady from NFLD travel to see him.

                                                                                                                Take charge of your care, your appointments, and don't let them tell you not to worry , you know your body,  I haven't been online for a while, but will try and come back to see how you are getting along. bcl will provide you with excellent advice and information. 

                                                                                                                Good Luck, and even if you haven't had any encouragment from BCCA , you should be optimistic as thery are many inovative treatments now….just not in BC.

                                                                                                                Do you live in vancouver?   Joan R

                                                                                                                ValinMtl
                                                                                                                Participant

                                                                                                                  Waiting until July would not be a 'great idea'…I believe I am at stage IV because the doctor (g.p.) who hacked off my mole waited over two months to advise me!!!

                                                                                                                  I cannot agree more with BC-Linda and Joan….make an appointment Dr. Smyllie in Edmonton, you are a human being and deserve nothing but the best care…move quickly. It will also put your mind at rest about what to do if you are with an experienced melanoma specialist.

                                                                                                                  I believe you were wondering about ipi…I had my first round September to November 2010..it destroyed the cutaneous melanoma on my right leg (100s, leg was purple) but mel has decided to fight back and ipi has to now be replaced with another treatment as soon as possible (and I have a couple in mind, need a little more research).  I am here today because ipi stopped the first attack.

                                                                                                                  Good luck  Val

                                                                                                                  P.S. the g.p. also booked me for an appointment with surgeon..it would be another two-month wait…wanted to say 'if this was your wife would you wait'….anyways, went home called the surgeon's secretary and he saw me next day in morning before his regular appointments and referred me 'rush' to melanoma clinic in Montreal – when I told him about waiting two months to see him, he shook his head and said 'oh no, you needed to see me sooner than that!"….I believe that move alone prevented me from being to far gone………BE PRO-ACTIVE

                                                                                                                  ValinMtl
                                                                                                                  Participant

                                                                                                                    Waiting until July would not be a 'great idea'…I believe I am at stage IV because the doctor (g.p.) who hacked off my mole waited over two months to advise me!!!

                                                                                                                    I cannot agree more with BC-Linda and Joan….make an appointment Dr. Smyllie in Edmonton, you are a human being and deserve nothing but the best care…move quickly. It will also put your mind at rest about what to do if you are with an experienced melanoma specialist.

                                                                                                                    I believe you were wondering about ipi…I had my first round September to November 2010..it destroyed the cutaneous melanoma on my right leg (100s, leg was purple) but mel has decided to fight back and ipi has to now be replaced with another treatment as soon as possible (and I have a couple in mind, need a little more research).  I am here today because ipi stopped the first attack.

                                                                                                                    Good luck  Val

                                                                                                                    P.S. the g.p. also booked me for an appointment with surgeon..it would be another two-month wait…wanted to say 'if this was your wife would you wait'….anyways, went home called the surgeon's secretary and he saw me next day in morning before his regular appointments and referred me 'rush' to melanoma clinic in Montreal – when I told him about waiting two months to see him, he shook his head and said 'oh no, you needed to see me sooner than that!"….I believe that move alone prevented me from being to far gone………BE PRO-ACTIVE

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