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Misleading information. We should be told to watch for change in a mole or new moles rather than use sunblock!!!!! ANGRY

Forums Cutaneous Melanoma Community Misleading information. We should be told to watch for change in a mole or new moles rather than use sunblock!!!!! ANGRY

  • Post
    mlbjab
    Participant

      I am so angry.  As a typical person living in US, I've been very good about protecting my skin from sunburns and not using tanning beds.  But I was dx with melanoma.  I feel it is misleading the way that all the info/public info is about sunblock.  Is that so they make money?  The info should be about new moles and moles that change.  It really doesn't matter if you use sunblock.  I did not think it would happen to me because I followed all the rules.  The melanoma campaign needs to change.  It can happen to anyone, not just tanning bed u

      I am so angry.  As a typical person living in US, I've been very good about protecting my skin from sunburns and not using tanning beds.  But I was dx with melanoma.  I feel it is misleading the way that all the info/public info is about sunblock.  Is that so they make money?  The info should be about new moles and moles that change.  It really doesn't matter if you use sunblock.  I did not think it would happen to me because I followed all the rules.  The melanoma campaign needs to change.  It can happen to anyone, not just tanning bed users and people who bake themselves to a crispy brown.  The information gives false sense of security to those of us who didn't abuse our skin.  It makes us think it can't happen to us.  I guess sort of like lung cancer can happen to people who don't smoke.  But it does happen.  I'm so angry that I ignored something because I wasn't a red head who burns easily and goes to a tanning bed.

    Viewing 17 reply threads
    • Replies
        MeNDave
        Participant

          I TOTALLY AGREE WITH YOU!!!!  My husband has never been to a tanning salon, was never a sun worshipper, wore sun screen and a hat outside, and yet he was diagnosed – and with a mole that I WATCHED CHANGE…. because I didn't know what to look for.  Everytime I talk to someone about mel, I do not preach about the sun or tanning booths, I tell them to CHECK THEIR SKIN.  It only takes 10 minutes, but could save your life.

          You're absolutely right –  the guidelines need to change.  From what we put out to the public, to what your general practioner should know and watch for, to what we teach kids in school….

          KNOW YOUR BODY!!

          Everyday, I live with the thought "if I would've known"….well, now I do, and I am trying to make sure that nobody else has to…

          MeNDave
          Participant

            I TOTALLY AGREE WITH YOU!!!!  My husband has never been to a tanning salon, was never a sun worshipper, wore sun screen and a hat outside, and yet he was diagnosed – and with a mole that I WATCHED CHANGE…. because I didn't know what to look for.  Everytime I talk to someone about mel, I do not preach about the sun or tanning booths, I tell them to CHECK THEIR SKIN.  It only takes 10 minutes, but could save your life.

            You're absolutely right –  the guidelines need to change.  From what we put out to the public, to what your general practioner should know and watch for, to what we teach kids in school….

            KNOW YOUR BODY!!

            Everyday, I live with the thought "if I would've known"….well, now I do, and I am trying to make sure that nobody else has to…

            MeNDave
            Participant

              I TOTALLY AGREE WITH YOU!!!!  My husband has never been to a tanning salon, was never a sun worshipper, wore sun screen and a hat outside, and yet he was diagnosed – and with a mole that I WATCHED CHANGE…. because I didn't know what to look for.  Everytime I talk to someone about mel, I do not preach about the sun or tanning booths, I tell them to CHECK THEIR SKIN.  It only takes 10 minutes, but could save your life.

              You're absolutely right –  the guidelines need to change.  From what we put out to the public, to what your general practioner should know and watch for, to what we teach kids in school….

              KNOW YOUR BODY!!

              Everyday, I live with the thought "if I would've known"….well, now I do, and I am trying to make sure that nobody else has to…

              kylez
              Participant

                I don't know that all DNA damage that causes melanoma is from the sun or tanning beds, but I'm sure a rather sizeable percentage is.

                No sunblock sold in the USA before 2005 protected against UVA… other than physical blockers like zinc oxide. In Europe and possibly elsewhere, there were UVA-protective sunscreens earlier than 2005. The stuff I used as a kid in the 70s which minimized sunburn (UVB), didn't help much at all with DNA damage (UVA-caused). Now some of the sunblocks here in the U.S. do protect (somewhat) against UVA as well. Hope I've got my facts right here.

                So I avoid getting a lot of sun; wearing UPF hats and sometimes clothing; and occasionally using UVA-protective sunblock (and UVA-protective sunglasses) which I hope will reduce my risk of getting a third primary. I've had two primaries, both on sun-exposed areas.

                 

                kylez
                Participant

                  I don't know that all DNA damage that causes melanoma is from the sun or tanning beds, but I'm sure a rather sizeable percentage is.

                  No sunblock sold in the USA before 2005 protected against UVA… other than physical blockers like zinc oxide. In Europe and possibly elsewhere, there were UVA-protective sunscreens earlier than 2005. The stuff I used as a kid in the 70s which minimized sunburn (UVB), didn't help much at all with DNA damage (UVA-caused). Now some of the sunblocks here in the U.S. do protect (somewhat) against UVA as well. Hope I've got my facts right here.

                  So I avoid getting a lot of sun; wearing UPF hats and sometimes clothing; and occasionally using UVA-protective sunblock (and UVA-protective sunglasses) which I hope will reduce my risk of getting a third primary. I've had two primaries, both on sun-exposed areas.

                   

                  kylez
                  Participant

                    I don't know that all DNA damage that causes melanoma is from the sun or tanning beds, but I'm sure a rather sizeable percentage is.

                    No sunblock sold in the USA before 2005 protected against UVA… other than physical blockers like zinc oxide. In Europe and possibly elsewhere, there were UVA-protective sunscreens earlier than 2005. The stuff I used as a kid in the 70s which minimized sunburn (UVB), didn't help much at all with DNA damage (UVA-caused). Now some of the sunblocks here in the U.S. do protect (somewhat) against UVA as well. Hope I've got my facts right here.

                    So I avoid getting a lot of sun; wearing UPF hats and sometimes clothing; and occasionally using UVA-protective sunblock (and UVA-protective sunglasses) which I hope will reduce my risk of getting a third primary. I've had two primaries, both on sun-exposed areas.

                     

                      kylez
                      Participant

                        meant to say, I do wear UPF hats and occasionally UPF-rated clothign and UVA/UVB protective sunglasses…

                        kylez
                        Participant

                          meant to say, I do wear UPF hats and occasionally UPF-rated clothign and UVA/UVB protective sunglasses…

                          kylez
                          Participant

                            meant to say, I do wear UPF hats and occasionally UPF-rated clothign and UVA/UVB protective sunglasses…

                          Linny
                          Participant

                            I've also been good at protecting my skin, never been to a tanning salon, and I don't work outdoors. Yes, I went to the beach. Yes, I tried to tan but always covered up when I felt a burn starting. When sunscreens starting coming into vogue, I started using them. I'm 58 years old and haven't had a sunburn since I was in my teens. I'm fair skinned and have blonde hair. I kept an eye out for suspicious moles. Never, EVER had one. Yet I was diagnosed with Stage III melanoma with an unknown primary.

                            So, it's not always about watching for moles, either. sad

                            Linny
                            Participant

                              I've also been good at protecting my skin, never been to a tanning salon, and I don't work outdoors. Yes, I went to the beach. Yes, I tried to tan but always covered up when I felt a burn starting. When sunscreens starting coming into vogue, I started using them. I'm 58 years old and haven't had a sunburn since I was in my teens. I'm fair skinned and have blonde hair. I kept an eye out for suspicious moles. Never, EVER had one. Yet I was diagnosed with Stage III melanoma with an unknown primary.

                              So, it's not always about watching for moles, either. sad

                              Linny
                              Participant

                                I've also been good at protecting my skin, never been to a tanning salon, and I don't work outdoors. Yes, I went to the beach. Yes, I tried to tan but always covered up when I felt a burn starting. When sunscreens starting coming into vogue, I started using them. I'm 58 years old and haven't had a sunburn since I was in my teens. I'm fair skinned and have blonde hair. I kept an eye out for suspicious moles. Never, EVER had one. Yet I was diagnosed with Stage III melanoma with an unknown primary.

                                So, it's not always about watching for moles, either. sad

                                mlbjab
                                Participant

                                  I believe they need to get more information out there about watching skin for change and getting to know your skin.  I also believe everyone should have an annual skin check just like a pap smear and going to dentist.  It should be standard of care. 

                                    Janner
                                    Participant
                                      Actually a yearly skin exam is the standard of care. If you look at basic age charts indicating when one should have a PAP smear or PSA or any of those routine type exams, a yearly skin exam is typically listed. However, GP’s don’t have a great track record when it comes to melanoma so it really means seeing a derm. If PCPs were better educated about melanoma, there might be more early diagnosed!
                                      Janner
                                      Participant
                                        Actually a yearly skin exam is the standard of care. If you look at basic age charts indicating when one should have a PAP smear or PSA or any of those routine type exams, a yearly skin exam is typically listed. However, GP’s don’t have a great track record when it comes to melanoma so it really means seeing a derm. If PCPs were better educated about melanoma, there might be more early diagnosed!
                                        Janner
                                        Participant
                                          Actually a yearly skin exam is the standard of care. If you look at basic age charts indicating when one should have a PAP smear or PSA or any of those routine type exams, a yearly skin exam is typically listed. However, GP’s don’t have a great track record when it comes to melanoma so it really means seeing a derm. If PCPs were better educated about melanoma, there might be more early diagnosed!
                                        mlbjab
                                        Participant

                                          I believe they need to get more information out there about watching skin for change and getting to know your skin.  I also believe everyone should have an annual skin check just like a pap smear and going to dentist.  It should be standard of care. 

                                          mlbjab
                                          Participant

                                            I believe they need to get more information out there about watching skin for change and getting to know your skin.  I also believe everyone should have an annual skin check just like a pap smear and going to dentist.  It should be standard of care. 

                                            Gene_S
                                            Participant

                                               I would be willing to bet that you are vitamin D-3 deficient!  The truth about the sun will some day come to life and then it will be well known that the sun is necessary for good health. Excessive sun will cause sun burns and leather like skin.

                                              Sunscreen/sun blockers may actually be causing melanoma? time will tell. Here is a great article about this subject…

                                               
                                               

                                               I firmly believe that everone should have their vitamin D-3 levels checked.

                                              One good source for this test would be at http://www.lef.org

                                              Best wishes,

                                              Gene

                                              Gene_S
                                              Participant

                                                 I would be willing to bet that you are vitamin D-3 deficient!  The truth about the sun will some day come to life and then it will be well known that the sun is necessary for good health. Excessive sun will cause sun burns and leather like skin.

                                                Sunscreen/sun blockers may actually be causing melanoma? time will tell. Here is a great article about this subject…

                                                 
                                                 

                                                 I firmly believe that everone should have their vitamin D-3 levels checked.

                                                One good source for this test would be at http://www.lef.org

                                                Best wishes,

                                                Gene

                                                Gene_S
                                                Participant

                                                   I would be willing to bet that you are vitamin D-3 deficient!  The truth about the sun will some day come to life and then it will be well known that the sun is necessary for good health. Excessive sun will cause sun burns and leather like skin.

                                                  Sunscreen/sun blockers may actually be causing melanoma? time will tell. Here is a great article about this subject…

                                                   
                                                   

                                                   I firmly believe that everone should have their vitamin D-3 levels checked.

                                                  One good source for this test would be at http://www.lef.org

                                                  Best wishes,

                                                  Gene

                                                  Tim–MRF
                                                  Guest

                                                    Your post highlights the difference between primary prevention and secondary prevention.  

                                                    Primary prevention is about stopping the cancer from ever occurring.  We know that a percentage of melanomas come as a result of UV radiation.  The science on this is very clear and is growing stronger year by year.  I have not seen any kind of consensus on what percentage this represents, but it is substantial–perhaps as much as 2/3.  If we can educate people about protecting themselves from UV radiation, and can actually change behaviors about UV radiation we can prevent thousands of melanomas every year.  I think this is worth doing.

                                                    Secondary prevention is about early detection, and I agree that our society needs to do more about this.  I like the approach that is simple:  if a spot on your body looks different from other spots, or if a spot is changing, get it checked out.  We all know the stats of early detection vs. late stage detection.  Clearly, early detection will also save thousands of lives.

                                                    Any public message will miss some people, and sometimes will miss a lot of people.  What about mucosal melanoma?  Uveal melanoma?  What about people who never find a primary?  Neither of these messages work well for those populations.  We have to focus on the messages that will do the most good.

                                                    A great example of this is our partnership with Ironman Triathlon group.  A few weeks ago we were in Orlando for a half-triathlon.  We handed out sunscreen and had a supply at the display area for athletes and spectators to use.  We also held a "spot check" event.  The doctor looked at 62 people over the space of less than 3 hours.  He found two people who almost certainly have melanoma, and another half-dozen who have basal cell of squamous cell carcinoma.

                                                    Hopefully we will continue to have room to address both aspects of prevention–I think they each save lives.

                                                     

                                                    Tim–MRF

                                                    Tim–MRF
                                                    Guest

                                                      Your post highlights the difference between primary prevention and secondary prevention.  

                                                      Primary prevention is about stopping the cancer from ever occurring.  We know that a percentage of melanomas come as a result of UV radiation.  The science on this is very clear and is growing stronger year by year.  I have not seen any kind of consensus on what percentage this represents, but it is substantial–perhaps as much as 2/3.  If we can educate people about protecting themselves from UV radiation, and can actually change behaviors about UV radiation we can prevent thousands of melanomas every year.  I think this is worth doing.

                                                      Secondary prevention is about early detection, and I agree that our society needs to do more about this.  I like the approach that is simple:  if a spot on your body looks different from other spots, or if a spot is changing, get it checked out.  We all know the stats of early detection vs. late stage detection.  Clearly, early detection will also save thousands of lives.

                                                      Any public message will miss some people, and sometimes will miss a lot of people.  What about mucosal melanoma?  Uveal melanoma?  What about people who never find a primary?  Neither of these messages work well for those populations.  We have to focus on the messages that will do the most good.

                                                      A great example of this is our partnership with Ironman Triathlon group.  A few weeks ago we were in Orlando for a half-triathlon.  We handed out sunscreen and had a supply at the display area for athletes and spectators to use.  We also held a "spot check" event.  The doctor looked at 62 people over the space of less than 3 hours.  He found two people who almost certainly have melanoma, and another half-dozen who have basal cell of squamous cell carcinoma.

                                                      Hopefully we will continue to have room to address both aspects of prevention–I think they each save lives.

                                                       

                                                      Tim–MRF

                                                        Gene_S
                                                        Participant

                                                          Tim,

                                                          The one thing that I feel that will really make a difference/or cure in determining the real cause of melanoma or any other cancer is to study the lifestyles of the actual cancer victims. You probably have read my postings here and I believe that the sun is getting a very bad rap as the cause of melanoma. I just don't buy the theory!  How about people that take daily showers or worse yet take a daily bath and soak in highly chlorinated water.  Most people do not realize that their skin is the largest organ in their body.  Yes the liver is large but you skin is the largest.  Also people that spend a lot of time in a chlorinated swimming pool?  Chlorine is very poisonous as well as the top germ killer and possibly the real cancer cause? If the readers here believe in a "God" or higher power they simply can't blame the sun for their disease. What they should blame is the chemicals that they abuse their bodies both on the inside (drinking chlorinated water and sugar and alcohol) and chemicals outside their body (sunscreen/sunblocker and bathing using highly chlorinated water).

                                                          There is also the problem with fluoride which is very toxic and serves no purpose other than to provide money to the fluoride producing companies. 

                                                          The current melanoma rates are rising but people are also spending more time indoors than anytime in the history of mankind…  possibly there is a connection?

                                                          In all my experiences with melanoma and its treatments (4 surgeries and now on a clinical trial) My oncologist has never asked me about how much time or lack of time I spend in the sun? Or, do I have city water with high chlorine/fluoride?  Or, do I drink soda or other high sugar products or alcohol?  Or, do I eat red meat?  etc, etc.  I think you can get the picture.  The only survey that I was asked to take initially was about smoking.  Really smoking and melanoma? I really feel that if we are going to find the root cause of this cancer or any cancer we need to determine the common denominator. Start with the person's real lifestyle!

                                                          When I was first diagnosed with stage IV melanoma it was my full time job to discover what caused it.  And also a cure for it!  After thousands of hours of research,  I discovered that my life style has a lot to do with the causes of melanoma.  In my case I was a shift worker (40+ years) and also did not do very well on eating and drinking (personal life style) and really important was I was not getting enough sleep.  These are things that I think need to be addressed if we are going to find what are the true causes of melanoma.  Also with my research I learned about Vitamin D-3, and almost all cancer victims are very deficient and this problem needs to be addressed.

                                                          Thank You for all you do for us melanoma victims on this forum group!

                                                          Best Wishes,

                                                          Gene

                                                          Gene_S
                                                          Participant

                                                            Tim,

                                                            The one thing that I feel that will really make a difference/or cure in determining the real cause of melanoma or any other cancer is to study the lifestyles of the actual cancer victims. You probably have read my postings here and I believe that the sun is getting a very bad rap as the cause of melanoma. I just don't buy the theory!  How about people that take daily showers or worse yet take a daily bath and soak in highly chlorinated water.  Most people do not realize that their skin is the largest organ in their body.  Yes the liver is large but you skin is the largest.  Also people that spend a lot of time in a chlorinated swimming pool?  Chlorine is very poisonous as well as the top germ killer and possibly the real cancer cause? If the readers here believe in a "God" or higher power they simply can't blame the sun for their disease. What they should blame is the chemicals that they abuse their bodies both on the inside (drinking chlorinated water and sugar and alcohol) and chemicals outside their body (sunscreen/sunblocker and bathing using highly chlorinated water).

                                                            There is also the problem with fluoride which is very toxic and serves no purpose other than to provide money to the fluoride producing companies. 

                                                            The current melanoma rates are rising but people are also spending more time indoors than anytime in the history of mankind…  possibly there is a connection?

                                                            In all my experiences with melanoma and its treatments (4 surgeries and now on a clinical trial) My oncologist has never asked me about how much time or lack of time I spend in the sun? Or, do I have city water with high chlorine/fluoride?  Or, do I drink soda or other high sugar products or alcohol?  Or, do I eat red meat?  etc, etc.  I think you can get the picture.  The only survey that I was asked to take initially was about smoking.  Really smoking and melanoma? I really feel that if we are going to find the root cause of this cancer or any cancer we need to determine the common denominator. Start with the person's real lifestyle!

                                                            When I was first diagnosed with stage IV melanoma it was my full time job to discover what caused it.  And also a cure for it!  After thousands of hours of research,  I discovered that my life style has a lot to do with the causes of melanoma.  In my case I was a shift worker (40+ years) and also did not do very well on eating and drinking (personal life style) and really important was I was not getting enough sleep.  These are things that I think need to be addressed if we are going to find what are the true causes of melanoma.  Also with my research I learned about Vitamin D-3, and almost all cancer victims are very deficient and this problem needs to be addressed.

                                                            Thank You for all you do for us melanoma victims on this forum group!

                                                            Best Wishes,

                                                            Gene

                                                            MeNDave
                                                            Participant

                                                              Just saying, when Dave was first diagnosed he did mention that it was the first year we had the pool… we used chlorine for it (although we have a well for water).  He did wonder if this had anything to do with it… we use Revacil now, but I'm thinking we should get rid of it and put in a pond ๐Ÿ™‚ Less maintainance anyway.

                                                              MeNDave
                                                              Participant

                                                                Just saying, when Dave was first diagnosed he did mention that it was the first year we had the pool… we used chlorine for it (although we have a well for water).  He did wonder if this had anything to do with it… we use Revacil now, but I'm thinking we should get rid of it and put in a pond ๐Ÿ™‚ Less maintainance anyway.

                                                                MeNDave
                                                                Participant

                                                                  Just saying, when Dave was first diagnosed he did mention that it was the first year we had the pool… we used chlorine for it (although we have a well for water).  He did wonder if this had anything to do with it… we use Revacil now, but I'm thinking we should get rid of it and put in a pond ๐Ÿ™‚ Less maintainance anyway.

                                                                  Gene_S
                                                                  Participant

                                                                    Tim,

                                                                    The one thing that I feel that will really make a difference/or cure in determining the real cause of melanoma or any other cancer is to study the lifestyles of the actual cancer victims. You probably have read my postings here and I believe that the sun is getting a very bad rap as the cause of melanoma. I just don't buy the theory!  How about people that take daily showers or worse yet take a daily bath and soak in highly chlorinated water.  Most people do not realize that their skin is the largest organ in their body.  Yes the liver is large but you skin is the largest.  Also people that spend a lot of time in a chlorinated swimming pool?  Chlorine is very poisonous as well as the top germ killer and possibly the real cancer cause? If the readers here believe in a "God" or higher power they simply can't blame the sun for their disease. What they should blame is the chemicals that they abuse their bodies both on the inside (drinking chlorinated water and sugar and alcohol) and chemicals outside their body (sunscreen/sunblocker and bathing using highly chlorinated water).

                                                                    There is also the problem with fluoride which is very toxic and serves no purpose other than to provide money to the fluoride producing companies. 

                                                                    The current melanoma rates are rising but people are also spending more time indoors than anytime in the history of mankind…  possibly there is a connection?

                                                                    In all my experiences with melanoma and its treatments (4 surgeries and now on a clinical trial) My oncologist has never asked me about how much time or lack of time I spend in the sun? Or, do I have city water with high chlorine/fluoride?  Or, do I drink soda or other high sugar products or alcohol?  Or, do I eat red meat?  etc, etc.  I think you can get the picture.  The only survey that I was asked to take initially was about smoking.  Really smoking and melanoma? I really feel that if we are going to find the root cause of this cancer or any cancer we need to determine the common denominator. Start with the person's real lifestyle!

                                                                    When I was first diagnosed with stage IV melanoma it was my full time job to discover what caused it.  And also a cure for it!  After thousands of hours of research,  I discovered that my life style has a lot to do with the causes of melanoma.  In my case I was a shift worker (40+ years) and also did not do very well on eating and drinking (personal life style) and really important was I was not getting enough sleep.  These are things that I think need to be addressed if we are going to find what are the true causes of melanoma.  Also with my research I learned about Vitamin D-3, and almost all cancer victims are very deficient and this problem needs to be addressed.

                                                                    Thank You for all you do for us melanoma victims on this forum group!

                                                                    Best Wishes,

                                                                    Gene

                                                                  Tim–MRF
                                                                  Guest

                                                                    Your post highlights the difference between primary prevention and secondary prevention.  

                                                                    Primary prevention is about stopping the cancer from ever occurring.  We know that a percentage of melanomas come as a result of UV radiation.  The science on this is very clear and is growing stronger year by year.  I have not seen any kind of consensus on what percentage this represents, but it is substantial–perhaps as much as 2/3.  If we can educate people about protecting themselves from UV radiation, and can actually change behaviors about UV radiation we can prevent thousands of melanomas every year.  I think this is worth doing.

                                                                    Secondary prevention is about early detection, and I agree that our society needs to do more about this.  I like the approach that is simple:  if a spot on your body looks different from other spots, or if a spot is changing, get it checked out.  We all know the stats of early detection vs. late stage detection.  Clearly, early detection will also save thousands of lives.

                                                                    Any public message will miss some people, and sometimes will miss a lot of people.  What about mucosal melanoma?  Uveal melanoma?  What about people who never find a primary?  Neither of these messages work well for those populations.  We have to focus on the messages that will do the most good.

                                                                    A great example of this is our partnership with Ironman Triathlon group.  A few weeks ago we were in Orlando for a half-triathlon.  We handed out sunscreen and had a supply at the display area for athletes and spectators to use.  We also held a "spot check" event.  The doctor looked at 62 people over the space of less than 3 hours.  He found two people who almost certainly have melanoma, and another half-dozen who have basal cell of squamous cell carcinoma.

                                                                    Hopefully we will continue to have room to address both aspects of prevention–I think they each save lives.

                                                                     

                                                                    Tim–MRF

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