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Melanoma Awareness by the Medical Profession

Forums General Melanoma Community Melanoma Awareness by the Medical Profession

  • Post
    susanr
    Participant

      This has bothered me and would like to know if I am the only one.  I just find it so frustrating…..that when I talk to people about melanoma they think the "ABCD's " of melanoma is " Gold Standard " in melanoma detection.  I have become very educated about melanoma..just like many of you on this forum.  I feel this way esp.

      This has bothered me and would like to know if I am the only one.  I just find it so frustrating…..that when I talk to people about melanoma they think the "ABCD's " of melanoma is " Gold Standard " in melanoma detection.  I have become very educated about melanoma..just like many of you on this forum.  I feel this way esp. since I lost my 45 y/o  brother to this cancer just a few months ago.  I myself have been to the doctors for biopsies because I have had basal cell in the past.  I have had some strange moles removed but because of my wishes…not their recommendations.  So many people I speak with don't understand all the places melanoma can" pop up "….mouth, sinuses, eye, rectum, vagina, feet, toes, nails, scalp, and nasal cavity.   Also, melanoma does not have to be a " colored mole", you can have amelanotic melanoma.   Another thing is how people don't take melanoma seriously.  It is an evil, aggressive, devious, and intelligent  cancer, and there is limited treatment options…not like say thyroid cancer.  When they here the stats on chemo and the presentation……I get the deer in the headlight look…and this look comes from some doctors that I know.  I feel that many times we are behind the eight ball on melanoma….I know first hand with my brother.  I guess what I am trying to say is that in my opinion, the true facts about melanoma are not broadcasted enough.  How come I and others had to find out the hard way about melanoma by losing a loved one or currently fighting this demon.  I know the medical professionals cannot detect everything.  Melanoma only needs a few months to mark its destruction in the body.  I know its not everyday that a doctor can see inside the body to detect a tiny spot that could be melanoma.  Also, many medical professionals….doctors, pathologists say " stage I "  " your cured " "don't worry"….HA !!!!!  I see to many stage I friends on this forum who are now stage 4…..Nothing is a 100% in cancer detection but maybe better education can help or I am open to ideas.  I could not save my brother but maybe his 4 small kids, my children, or someone else……………..

       

      Thanks for Listening

      Sam.

    Viewing 17 reply threads
    • Replies
        deardad
        Participant

          This is an unfortunate truth. Im sorry you lost your brother so young. I lost my dad to this horrid disease and still can't believe that in 18 months he was gone. His GP on three occasions assured him it was ok, even when he said it had become itchy. Nodular melanoma is definately more difficult to diagnose but the GP still wasn't worried even when it started to bleed. Dad was the one who insisted it be removed.  

          Next month there is a melanoma awareness march in my area, perhaps this is the key? Social media makes it easier for us to spread the word too.  As for educating the medical profession, well that's a total other issue. I think public awareness is the key in saving lives. 

          Nahmi from Melbourne

          deardad
          Participant

            This is an unfortunate truth. Im sorry you lost your brother so young. I lost my dad to this horrid disease and still can't believe that in 18 months he was gone. His GP on three occasions assured him it was ok, even when he said it had become itchy. Nodular melanoma is definately more difficult to diagnose but the GP still wasn't worried even when it started to bleed. Dad was the one who insisted it be removed.  

            Next month there is a melanoma awareness march in my area, perhaps this is the key? Social media makes it easier for us to spread the word too.  As for educating the medical profession, well that's a total other issue. I think public awareness is the key in saving lives. 

            Nahmi from Melbourne

            deardad
            Participant

              This is an unfortunate truth. Im sorry you lost your brother so young. I lost my dad to this horrid disease and still can't believe that in 18 months he was gone. His GP on three occasions assured him it was ok, even when he said it had become itchy. Nodular melanoma is definately more difficult to diagnose but the GP still wasn't worried even when it started to bleed. Dad was the one who insisted it be removed.  

              Next month there is a melanoma awareness march in my area, perhaps this is the key? Social media makes it easier for us to spread the word too.  As for educating the medical profession, well that's a total other issue. I think public awareness is the key in saving lives. 

              Nahmi from Melbourne

              Carole K
              Participant

                Sam,

                First and foremost I want to say how deeply sorry I am to hear about your brother. Leaving a family with small chidlren add to the difficulty of your loss. 

                There are so many on this board who have faced what you are going through and with the same frustrations. Sadly, not many take Melanoma seriously and doctors themselves I think either don't unerstand or close thier eyes to a lot. Then again, each field is so specialized many don't know enough about Melnoam.  My younger brother was in a nursing home for many years before he passed away.  When I was visiting him one day a doctor came in to see me.  I thought it was to discuss my brothers situation. It wasn't. He wanted to talk to me about Melanoam.  He expressed his lack of knowledge and asked If I would help.  Me?  I am a patient, not a medical doctor.  I ddi however honor his wishes and told him what I knew.  He was astonished and said.. I don't think many docotrs do know as much as you do.  I told him to come to MPIP and send the person who had been diagnosed here.  I commend those doctors, and there are many, who dedicate thier lives to this dreaded disease. 

                Sadly, also, people don't take Melanoma seriously either,  I hear time and tme again . It's just skin cancer.  I want to scream.  I also hear OH MY Doctor told me I am cured.  That just sets me in a tail spin. 

                I was misdiangosed back in 1995.  My oldest daughter has far too many moles for my liking and is very fair.  She went to a dermatologist, recommended by someone who is IN THE KNOW.   I flipped out when she told me he did a shave biopsy, especially knowing my history and knowing about me.  This dermatologist is with a majoy cancer center and in my opinion was careless doing a shave.  I finally met him personally and boy it was not a comfortable meeting for either one of us.  I told him I felt his decision to do a shave biopsy was irresponsible, not just because of my history, just in general. Shave biopsies are my PET PEEVE. and will ALWAYS BE.

                All we can hope for is that some day somehow Melanoma will get the limelight it deserves  Sadly, your brother and so many young mothers and fathers will not benefit .  Sam, I would love to know your brothers story if you are willing to share.How is his family doing?  How may I help all of you?  My thoughts and prayers are with you and your family.

                Love and Light

                Carole   [email protected]      

                Carole K
                Participant

                  Sam,

                  First and foremost I want to say how deeply sorry I am to hear about your brother. Leaving a family with small chidlren add to the difficulty of your loss. 

                  There are so many on this board who have faced what you are going through and with the same frustrations. Sadly, not many take Melanoma seriously and doctors themselves I think either don't unerstand or close thier eyes to a lot. Then again, each field is so specialized many don't know enough about Melnoam.  My younger brother was in a nursing home for many years before he passed away.  When I was visiting him one day a doctor came in to see me.  I thought it was to discuss my brothers situation. It wasn't. He wanted to talk to me about Melanoam.  He expressed his lack of knowledge and asked If I would help.  Me?  I am a patient, not a medical doctor.  I ddi however honor his wishes and told him what I knew.  He was astonished and said.. I don't think many docotrs do know as much as you do.  I told him to come to MPIP and send the person who had been diagnosed here.  I commend those doctors, and there are many, who dedicate thier lives to this dreaded disease. 

                  Sadly, also, people don't take Melanoma seriously either,  I hear time and tme again . It's just skin cancer.  I want to scream.  I also hear OH MY Doctor told me I am cured.  That just sets me in a tail spin. 

                  I was misdiangosed back in 1995.  My oldest daughter has far too many moles for my liking and is very fair.  She went to a dermatologist, recommended by someone who is IN THE KNOW.   I flipped out when she told me he did a shave biopsy, especially knowing my history and knowing about me.  This dermatologist is with a majoy cancer center and in my opinion was careless doing a shave.  I finally met him personally and boy it was not a comfortable meeting for either one of us.  I told him I felt his decision to do a shave biopsy was irresponsible, not just because of my history, just in general. Shave biopsies are my PET PEEVE. and will ALWAYS BE.

                  All we can hope for is that some day somehow Melanoma will get the limelight it deserves  Sadly, your brother and so many young mothers and fathers will not benefit .  Sam, I would love to know your brothers story if you are willing to share.How is his family doing?  How may I help all of you?  My thoughts and prayers are with you and your family.

                  Love and Light

                  Carole   [email protected]      

                  Carole K
                  Participant

                    Sam,

                    First and foremost I want to say how deeply sorry I am to hear about your brother. Leaving a family with small chidlren add to the difficulty of your loss. 

                    There are so many on this board who have faced what you are going through and with the same frustrations. Sadly, not many take Melanoma seriously and doctors themselves I think either don't unerstand or close thier eyes to a lot. Then again, each field is so specialized many don't know enough about Melnoam.  My younger brother was in a nursing home for many years before he passed away.  When I was visiting him one day a doctor came in to see me.  I thought it was to discuss my brothers situation. It wasn't. He wanted to talk to me about Melanoam.  He expressed his lack of knowledge and asked If I would help.  Me?  I am a patient, not a medical doctor.  I ddi however honor his wishes and told him what I knew.  He was astonished and said.. I don't think many docotrs do know as much as you do.  I told him to come to MPIP and send the person who had been diagnosed here.  I commend those doctors, and there are many, who dedicate thier lives to this dreaded disease. 

                    Sadly, also, people don't take Melanoma seriously either,  I hear time and tme again . It's just skin cancer.  I want to scream.  I also hear OH MY Doctor told me I am cured.  That just sets me in a tail spin. 

                    I was misdiangosed back in 1995.  My oldest daughter has far too many moles for my liking and is very fair.  She went to a dermatologist, recommended by someone who is IN THE KNOW.   I flipped out when she told me he did a shave biopsy, especially knowing my history and knowing about me.  This dermatologist is with a majoy cancer center and in my opinion was careless doing a shave.  I finally met him personally and boy it was not a comfortable meeting for either one of us.  I told him I felt his decision to do a shave biopsy was irresponsible, not just because of my history, just in general. Shave biopsies are my PET PEEVE. and will ALWAYS BE.

                    All we can hope for is that some day somehow Melanoma will get the limelight it deserves  Sadly, your brother and so many young mothers and fathers will not benefit .  Sam, I would love to know your brothers story if you are willing to share.How is his family doing?  How may I help all of you?  My thoughts and prayers are with you and your family.

                    Love and Light

                    Carole   [email protected]      

                    JC
                    Participant

                      deep shaves (saucerization) can be effective and if someone gets a lot of biopsies it might be the better method since to get that many excisionals would be harsh

                      JC
                      Participant

                        deep shaves (saucerization) can be effective and if someone gets a lot of biopsies it might be the better method since to get that many excisionals would be harsh

                        JC
                        Participant

                          deep shaves (saucerization) can be effective and if someone gets a lot of biopsies it might be the better method since to get that many excisionals would be harsh

                            Janner
                            Participant

                              Yes, but punches get a complete depth and only require one or two stitches if you can get a punch wide enough to remove the mole.  They also heal better and hurt less while healing in my opinion.  Excisional is nice but not realistic for those with DNS.  That's why I like body photography to hopefully minimize the number of biopsies for those with many moles.  There is a time and place for all types of biopsies based on situation and anatomy – and I believe this issue should be discussed with the patient.  Most derms just do a shallow scoop because it's quick and requires no stitches.  Convenient for them.  I can't tell you how many people I've seen on this board in over 10 years who've had a shave that cut through the lesion.  Most derms don't do "deep".  I know that I will never have another shave biopsy when melanoma is suspected.

                              Janner

                              Stage I since 1992, 3 MM primaries

                              Janner
                              Participant

                                Yes, but punches get a complete depth and only require one or two stitches if you can get a punch wide enough to remove the mole.  They also heal better and hurt less while healing in my opinion.  Excisional is nice but not realistic for those with DNS.  That's why I like body photography to hopefully minimize the number of biopsies for those with many moles.  There is a time and place for all types of biopsies based on situation and anatomy – and I believe this issue should be discussed with the patient.  Most derms just do a shallow scoop because it's quick and requires no stitches.  Convenient for them.  I can't tell you how many people I've seen on this board in over 10 years who've had a shave that cut through the lesion.  Most derms don't do "deep".  I know that I will never have another shave biopsy when melanoma is suspected.

                                Janner

                                Stage I since 1992, 3 MM primaries

                                Janner
                                Participant

                                  Yes, but punches get a complete depth and only require one or two stitches if you can get a punch wide enough to remove the mole.  They also heal better and hurt less while healing in my opinion.  Excisional is nice but not realistic for those with DNS.  That's why I like body photography to hopefully minimize the number of biopsies for those with many moles.  There is a time and place for all types of biopsies based on situation and anatomy – and I believe this issue should be discussed with the patient.  Most derms just do a shallow scoop because it's quick and requires no stitches.  Convenient for them.  I can't tell you how many people I've seen on this board in over 10 years who've had a shave that cut through the lesion.  Most derms don't do "deep".  I know that I will never have another shave biopsy when melanoma is suspected.

                                  Janner

                                  Stage I since 1992, 3 MM primaries

                                JC
                                Participant

                                  "when melanoma is suspected". . that's the hard part, especially when melanomas don't look like melanomas, don't follow the ABCD, etc. . . when it's an apparent obvious melanoma, then sure. . but when it isn't, that's the problem

                                  JC
                                  Participant

                                    "when melanoma is suspected". . that's the hard part, especially when melanomas don't look like melanomas, don't follow the ABCD, etc. . . when it's an apparent obvious melanoma, then sure. . but when it isn't, that's the problem

                                      Janner
                                      Participant

                                        If it is a MOLE and it is being biopsied, then "melanoma is suspected".  Why biopsy a mole otherwise?  Only one of my three primaries fit the ABCD's – 2 fit the "E" or evolving/change.    If it isn't an obvious mole but changing significantly, then "melanoma is suspected".  If it is an obvious SCC/BCC on a sun exposed area (most often the face), then a discussion of the best type of biopsy for the location is key.  There are always going to be some lesions which don't follow patterns but I would rather err on the side of caution.  The trouble is convincing derms/PCP's to do that.  They often do what is easier because the vast majority of biopsies are NOT cancer.  Problem is, doctors don't have a vested interest like the patients do, and most patients don't know that the biopsy type may have have staging implications.  If you don't know to ask, you are subject to the whim / expertise of your doctor.

                                        Janner
                                        Participant

                                          If it is a MOLE and it is being biopsied, then "melanoma is suspected".  Why biopsy a mole otherwise?  Only one of my three primaries fit the ABCD's – 2 fit the "E" or evolving/change.    If it isn't an obvious mole but changing significantly, then "melanoma is suspected".  If it is an obvious SCC/BCC on a sun exposed area (most often the face), then a discussion of the best type of biopsy for the location is key.  There are always going to be some lesions which don't follow patterns but I would rather err on the side of caution.  The trouble is convincing derms/PCP's to do that.  They often do what is easier because the vast majority of biopsies are NOT cancer.  Problem is, doctors don't have a vested interest like the patients do, and most patients don't know that the biopsy type may have have staging implications.  If you don't know to ask, you are subject to the whim / expertise of your doctor.

                                          Janner
                                          Participant

                                            If it is a MOLE and it is being biopsied, then "melanoma is suspected".  Why biopsy a mole otherwise?  Only one of my three primaries fit the ABCD's – 2 fit the "E" or evolving/change.    If it isn't an obvious mole but changing significantly, then "melanoma is suspected".  If it is an obvious SCC/BCC on a sun exposed area (most often the face), then a discussion of the best type of biopsy for the location is key.  There are always going to be some lesions which don't follow patterns but I would rather err on the side of caution.  The trouble is convincing derms/PCP's to do that.  They often do what is easier because the vast majority of biopsies are NOT cancer.  Problem is, doctors don't have a vested interest like the patients do, and most patients don't know that the biopsy type may have have staging implications.  If you don't know to ask, you are subject to the whim / expertise of your doctor.

                                          JC
                                          Participant

                                            "when melanoma is suspected". . that's the hard part, especially when melanomas don't look like melanomas, don't follow the ABCD, etc. . . when it's an apparent obvious melanoma, then sure. . but when it isn't, that's the problem

                                            JC
                                            Participant

                                              what you say makes sense; in my experience the very first biopsy I ever had turned out to be melanoma – was melanoma suspected?  The Dr said he was 99% sure it would be nothing, but obviously there was something he saw that made him want to do a biopsy.  He did a shave, but the shave got clear margins.  Now, since then, I'm a melanoma patient, and I'm treated very differently.  They biopsy lots on me that they wouldn't on non-melanoma patients.  So, having so many biopsies, can't all be excisional, nor punch with stitches, etc. . so they do quick deep shaves.  So far no more melanoma, but those moles were darker or perhaps more irregular than those around them.  So, they come off.  If there was something that was textbook melanoma, I'd insist on excisional or punch I guess.  But, for these other biopsies always being done that probably won't come back as anything more than dysplastic, I'm ok with deep shave.

                                              JC
                                              Participant

                                                what you say makes sense; in my experience the very first biopsy I ever had turned out to be melanoma – was melanoma suspected?  The Dr said he was 99% sure it would be nothing, but obviously there was something he saw that made him want to do a biopsy.  He did a shave, but the shave got clear margins.  Now, since then, I'm a melanoma patient, and I'm treated very differently.  They biopsy lots on me that they wouldn't on non-melanoma patients.  So, having so many biopsies, can't all be excisional, nor punch with stitches, etc. . so they do quick deep shaves.  So far no more melanoma, but those moles were darker or perhaps more irregular than those around them.  So, they come off.  If there was something that was textbook melanoma, I'd insist on excisional or punch I guess.  But, for these other biopsies always being done that probably won't come back as anything more than dysplastic, I'm ok with deep shave.

                                                  deardad
                                                  Participant

                                                    Im with Janner on this and I have never had a melanoma diagnosis. Loosing my dad and learning what I have on this board, I will never have a shave biopsy again. I was seeing a group here in Melbourne called Molescan regularly before my dad was diagnosed and I had a shave biopsy on a mole on my back. It was midly displastic but by the time he wanted to go back and remove the rest…he couldn't locate the lesion. The pigment had disappeared all together. So what does he do…ultimately he had to assume where the lesion was and dig!!! Honestly punch is the only way I will go from now on.     

                                                    deardad
                                                    Participant

                                                      Im with Janner on this and I have never had a melanoma diagnosis. Loosing my dad and learning what I have on this board, I will never have a shave biopsy again. I was seeing a group here in Melbourne called Molescan regularly before my dad was diagnosed and I had a shave biopsy on a mole on my back. It was midly displastic but by the time he wanted to go back and remove the rest…he couldn't locate the lesion. The pigment had disappeared all together. So what does he do…ultimately he had to assume where the lesion was and dig!!! Honestly punch is the only way I will go from now on.     

                                                      deardad
                                                      Participant

                                                        Im with Janner on this and I have never had a melanoma diagnosis. Loosing my dad and learning what I have on this board, I will never have a shave biopsy again. I was seeing a group here in Melbourne called Molescan regularly before my dad was diagnosed and I had a shave biopsy on a mole on my back. It was midly displastic but by the time he wanted to go back and remove the rest…he couldn't locate the lesion. The pigment had disappeared all together. So what does he do…ultimately he had to assume where the lesion was and dig!!! Honestly punch is the only way I will go from now on.     

                                                      JC
                                                      Participant

                                                        what you say makes sense; in my experience the very first biopsy I ever had turned out to be melanoma – was melanoma suspected?  The Dr said he was 99% sure it would be nothing, but obviously there was something he saw that made him want to do a biopsy.  He did a shave, but the shave got clear margins.  Now, since then, I'm a melanoma patient, and I'm treated very differently.  They biopsy lots on me that they wouldn't on non-melanoma patients.  So, having so many biopsies, can't all be excisional, nor punch with stitches, etc. . so they do quick deep shaves.  So far no more melanoma, but those moles were darker or perhaps more irregular than those around them.  So, they come off.  If there was something that was textbook melanoma, I'd insist on excisional or punch I guess.  But, for these other biopsies always being done that probably won't come back as anything more than dysplastic, I'm ok with deep shave.

                                                        CMH
                                                        Participant

                                                          Sam, I know what you mean.  I have an enlarged node on my neck on the right side, beneath my ear (I had amelanomtic melanoma on the left side of my neck discovered in 2011, depth unknown due to shave but at least .9 mm – after WLE, SNB and PET were clear -skin checks by derm every 3 mos.)  My primary sent me for a CT scan after he felt my node.  The node is only 11 mm but all the other nodes are 5 or 6mm.  The radlologist put a note on the report that he would advise a PET scan due to my history.  I was sent to an ENT who told me that melanoma "doesn't jump from the left side to the right."  She said the enlarged node is not where it should be if it were melanoma (?) … I think she meant my original mel would drain to a lymph node near my collarbone not below my ear.  I told her I have had strange ringing and sensations around my right ear for 8 months and sometimes pain, and she said "lots of people have tinnitus."  I wanted to tell her that melanoma goes wherever it pleases, but she seemed almost hostile towards me, so I said nothing. She seemed angry that I was worried and lectured "You are going to have to stop worrying about melanoma." She said a PET scan would be "overkill" (nice word, Doc!) and she ordered an ultrasound-guided FNA  biopsy of the node, which is reasonable.  I'm scheduled next week for that.  I understand that doctors have to think about cost and "unnecessary tests" but a little sensitivity would be nice.  I understand that a PET scan would be pointless before the biopsy.  I understand that I have to live my life and not worry that every symptom is a metasasis, but I am really the only person who can advocate for myself.  If melanoma is still in my body, I would like to know sooner rather than later.  I read about a doctor who had melanoma herself and she sounded wonderful, like she understood what her patients were going through mentally as well as physically.  I know people will reply to this post that the doctor is doing exactly the right thing and I don't disagree, I just would have appreciated a little kindness and compassion (and medical knowledge!).  I left the office feeling like an annoying, pathetic hypochondriac instead of a human being worried about leaving my kids and hubby and family too soon, like so many melanoma patients.

                                                          CMH
                                                          Participant

                                                            Sam, I know what you mean.  I have an enlarged node on my neck on the right side, beneath my ear (I had amelanomtic melanoma on the left side of my neck discovered in 2011, depth unknown due to shave but at least .9 mm – after WLE, SNB and PET were clear -skin checks by derm every 3 mos.)  My primary sent me for a CT scan after he felt my node.  The node is only 11 mm but all the other nodes are 5 or 6mm.  The radlologist put a note on the report that he would advise a PET scan due to my history.  I was sent to an ENT who told me that melanoma "doesn't jump from the left side to the right."  She said the enlarged node is not where it should be if it were melanoma (?) … I think she meant my original mel would drain to a lymph node near my collarbone not below my ear.  I told her I have had strange ringing and sensations around my right ear for 8 months and sometimes pain, and she said "lots of people have tinnitus."  I wanted to tell her that melanoma goes wherever it pleases, but she seemed almost hostile towards me, so I said nothing. She seemed angry that I was worried and lectured "You are going to have to stop worrying about melanoma." She said a PET scan would be "overkill" (nice word, Doc!) and she ordered an ultrasound-guided FNA  biopsy of the node, which is reasonable.  I'm scheduled next week for that.  I understand that doctors have to think about cost and "unnecessary tests" but a little sensitivity would be nice.  I understand that a PET scan would be pointless before the biopsy.  I understand that I have to live my life and not worry that every symptom is a metasasis, but I am really the only person who can advocate for myself.  If melanoma is still in my body, I would like to know sooner rather than later.  I read about a doctor who had melanoma herself and she sounded wonderful, like she understood what her patients were going through mentally as well as physically.  I know people will reply to this post that the doctor is doing exactly the right thing and I don't disagree, I just would have appreciated a little kindness and compassion (and medical knowledge!).  I left the office feeling like an annoying, pathetic hypochondriac instead of a human being worried about leaving my kids and hubby and family too soon, like so many melanoma patients.

                                                              JerryfromFauq
                                                              Participant

                                                                PET in this case would probably light up.  Just remember that a PET scan does not automatically identify cancer.  It identifies where glucose collects.  This could be an infection.  I have had many false positives and false negatives. 

                                                                Did they do a dye injection to verify the lymph path which the primary site was draining? 

                                                                If the melanoma is following the lymph channels (most early cases do) then the odds on it showing duo on the other side of the body is reduced.  If the cells get into the blood stream than it can show up anywhere in the body.  The lungs liver and brain being among the most likely locations.  A PET scan would  indicate if those the locations outside of the brain should be looked at harder.  An MRI should be used for the brain.  PET would indicate the likelyhood of systemic spread and coul speed up advancing to systemic treatment if needed.  Speed of growth would be one of my major concerns.  If fast get an immediate FNA and also be sitting uo a excedssional biopsy date.

                                                                I am surprised that you were not immediately given a course of antibiotics to rule out an infection.

                                                                I do not consider you to be acting like a hypochondriac.  I think you are being vigilant and proactive.  There is no other way to be with melanoma.  Paranoia is bad, Vigilance is required for a chance at survival. 
                                                                I am not against trying a needle biopsy, but have never had a positive one yet on me, all have been inconclusive.  When I requested an immediate biopsy the pathology was positive for melanoma.

                                                                 

                                                                Most of the medical profession knows little about melanoma.  Many general Oncologist know little about the current status of melanoma atreatment.  I know of a few people that died after their general oncologist refused to liston to them and their caregiver about the new treatments, because the GENERAL knew too much to learn from a patient.. 

                                                                JerryfromFauq
                                                                Participant

                                                                  PET in this case would probably light up.  Just remember that a PET scan does not automatically identify cancer.  It identifies where glucose collects.  This could be an infection.  I have had many false positives and false negatives. 

                                                                  Did they do a dye injection to verify the lymph path which the primary site was draining? 

                                                                  If the melanoma is following the lymph channels (most early cases do) then the odds on it showing duo on the other side of the body is reduced.  If the cells get into the blood stream than it can show up anywhere in the body.  The lungs liver and brain being among the most likely locations.  A PET scan would  indicate if those the locations outside of the brain should be looked at harder.  An MRI should be used for the brain.  PET would indicate the likelyhood of systemic spread and coul speed up advancing to systemic treatment if needed.  Speed of growth would be one of my major concerns.  If fast get an immediate FNA and also be sitting uo a excedssional biopsy date.

                                                                  I am surprised that you were not immediately given a course of antibiotics to rule out an infection.

                                                                  I do not consider you to be acting like a hypochondriac.  I think you are being vigilant and proactive.  There is no other way to be with melanoma.  Paranoia is bad, Vigilance is required for a chance at survival. 
                                                                  I am not against trying a needle biopsy, but have never had a positive one yet on me, all have been inconclusive.  When I requested an immediate biopsy the pathology was positive for melanoma.

                                                                   

                                                                  Most of the medical profession knows little about melanoma.  Many general Oncologist know little about the current status of melanoma atreatment.  I know of a few people that died after their general oncologist refused to liston to them and their caregiver about the new treatments, because the GENERAL knew too much to learn from a patient.. 

                                                                  JerryfromFauq
                                                                  Participant

                                                                    PET in this case would probably light up.  Just remember that a PET scan does not automatically identify cancer.  It identifies where glucose collects.  This could be an infection.  I have had many false positives and false negatives. 

                                                                    Did they do a dye injection to verify the lymph path which the primary site was draining? 

                                                                    If the melanoma is following the lymph channels (most early cases do) then the odds on it showing duo on the other side of the body is reduced.  If the cells get into the blood stream than it can show up anywhere in the body.  The lungs liver and brain being among the most likely locations.  A PET scan would  indicate if those the locations outside of the brain should be looked at harder.  An MRI should be used for the brain.  PET would indicate the likelyhood of systemic spread and coul speed up advancing to systemic treatment if needed.  Speed of growth would be one of my major concerns.  If fast get an immediate FNA and also be sitting uo a excedssional biopsy date.

                                                                    I am surprised that you were not immediately given a course of antibiotics to rule out an infection.

                                                                    I do not consider you to be acting like a hypochondriac.  I think you are being vigilant and proactive.  There is no other way to be with melanoma.  Paranoia is bad, Vigilance is required for a chance at survival. 
                                                                    I am not against trying a needle biopsy, but have never had a positive one yet on me, all have been inconclusive.  When I requested an immediate biopsy the pathology was positive for melanoma.

                                                                     

                                                                    Most of the medical profession knows little about melanoma.  Many general Oncologist know little about the current status of melanoma atreatment.  I know of a few people that died after their general oncologist refused to liston to them and their caregiver about the new treatments, because the GENERAL knew too much to learn from a patient.. 

                                                                  CMH
                                                                  Participant

                                                                    Sam, I know what you mean.  I have an enlarged node on my neck on the right side, beneath my ear (I had amelanomtic melanoma on the left side of my neck discovered in 2011, depth unknown due to shave but at least .9 mm – after WLE, SNB and PET were clear -skin checks by derm every 3 mos.)  My primary sent me for a CT scan after he felt my node.  The node is only 11 mm but all the other nodes are 5 or 6mm.  The radlologist put a note on the report that he would advise a PET scan due to my history.  I was sent to an ENT who told me that melanoma "doesn't jump from the left side to the right."  She said the enlarged node is not where it should be if it were melanoma (?) … I think she meant my original mel would drain to a lymph node near my collarbone not below my ear.  I told her I have had strange ringing and sensations around my right ear for 8 months and sometimes pain, and she said "lots of people have tinnitus."  I wanted to tell her that melanoma goes wherever it pleases, but she seemed almost hostile towards me, so I said nothing. She seemed angry that I was worried and lectured "You are going to have to stop worrying about melanoma." She said a PET scan would be "overkill" (nice word, Doc!) and she ordered an ultrasound-guided FNA  biopsy of the node, which is reasonable.  I'm scheduled next week for that.  I understand that doctors have to think about cost and "unnecessary tests" but a little sensitivity would be nice.  I understand that a PET scan would be pointless before the biopsy.  I understand that I have to live my life and not worry that every symptom is a metasasis, but I am really the only person who can advocate for myself.  If melanoma is still in my body, I would like to know sooner rather than later.  I read about a doctor who had melanoma herself and she sounded wonderful, like she understood what her patients were going through mentally as well as physically.  I know people will reply to this post that the doctor is doing exactly the right thing and I don't disagree, I just would have appreciated a little kindness and compassion (and medical knowledge!).  I left the office feeling like an annoying, pathetic hypochondriac instead of a human being worried about leaving my kids and hubby and family too soon, like so many melanoma patients.

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