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becky15

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      becky15
      Participant
        Hi Victoria. I was in the exactly the same position as you just over 8 years ago. I had a stage 1a melanoma, 0.7mm deep and Clark level 4 on my leg. Like you, I fretted over the Clark level 4 aspect as it seemed to be contrary to the relatively shallow depth. and, to a far lesser extent, it still preys I’m my mind even now. However, I ‘m glad to say that I’ve had no further problems to date and I hope that reassures you. Lynne
        becky15
        Participant
          Words fail me. I will not be posting on this forum again
          becky15
          Participant

            Celeste, read my initial post again very carefully. I did not "berate" Janner in any way, the focus of my post was the bullying nature of remarks made to a stage 4 melanoma patient who unfourtunately got Janner's name wrong and clearly was unaware of Janner's great assistance to members of the forum.

            I find it remarkable that instead of choosing to condemn comments made to this member, such as

            "ass $&@&$"

            "should crawl back into her hole"

            "some numb nut"

             for some unfathomable reason you choose instead to personally attack me. You do not know me, you have no idea of my personal circumstances.

            Every member should have the right to post, providing that post does not infringe on the forum guidelines.  There should be no problem with someone posting anonomously, posting for the first time after being a member for a few years, and choosing not to post replies to topics.

            becky15
            Participant

              As background, I have been stage 1A for seven years and follow this forum regularly but rarely post. I've just come back from a month away and have been upset to read the personal attack on a fellow melanoma sufferer, and stage 4 at that, who has made the following first time comment:

              "Janet must you me that harsh?  This is a patient who should be asking questions they don’t understand not to mention you don’t know what type of person they are and how they react..I think it’s a good thing to ask everything and anything..and we should be supportive and not harsh and not cryptic..just my observations"

              Whilst personally fully appreciating all of Janner's assistance and advice to early stage sufferers over the years, she can be rather curt in her tone and this is what the responder appears to have focussed on.  Yes, she made a mistake in Janner's name and, yes, she could have  thought to read back over Janner's numerous previous posts to gain a history and more rounded opinion. But does her comment really merit the bullying nature of follow up replies such as:

              "I love it when after being a member on this forum for 8 years this lady decided to make her first post an attack on you "Janner" the person that helps people the most on MRF. I have lost my patients for ass $&@&$ like this first time poster, I think she should crawl back into her hole and just keep watching and not talking."I don't know where you find the patients to be so kind and understanding with so many obvious folks that suffer with mental health issues!!!"

              "but since some numb nut pissed her off"

              I can't imagine how this woman must now feel, I'm not surprised that she hasn't replied to apologise as she probably fears further comment.  What is wrong with being a first time poster after 8 years?  At least she's posted a full profile of herself!  On a forum such as this, everyone should be entitled to express their opinion without fear of such vehement retaliation.

              And as a final thought, how nice is this comment:

              "I don't know where you find the patients (sic) to be so kind and understanding with so many obvious folks that suffer with mental health issues!!!". 

              So suffering from anxiety after any early melanoma diagnosis or potential one (and all that entails, such as over reaction and constant dwelling on what-ifs, is now a mental health issue!! What a really feel good comment that is….

               

               

               

              becky15
              Participant

                I can't see anything about Clarks level in the referenced article or any other article I've read concerning the new guidelines…….

                becky15
                Participant

                  Look up angiokeratoma fordyce vulva. These appear along the lines of small veins in the labia region and are harmless. I panicked when I had one bleed slightly. Hope that this is the explanation.

                  becky15
                  Participant

                    Many thanks Celeste and Jackie for your detailed replies.  I must apologise for my rather blunt initial posting as I was coming to the end of a train journey and was rushing to post before getting off the train.

                     

                    I appreciate that we have very different medical systems. I do feel however that it is possible to debate the provision of treatment with an insurance company whereas this is virtually impossible with the NHS who follow strict guidelines which, in the case of melanoma, are governed by the British Association of Dermatologists 2010 guidelines.  Having re-read these, I see that there is provision for an SNLB to be offered to stage 1b patients (although in practice, my consultant told me this is usually restricted to those melanomas over 1mm) there is no such provision for Stage 1a patients.  The guidelines recognise a 5% risk of a positive node with a less than 1mm melanoma but that this is coupled with a 5% chance of morbidity, hence giving an SLNB to a stage 1a patient is presumeably not seen worth the risk.  I actually had my melanoma diagnosed and treated privately, paying for it myself as I do not have private medical insurance, and when I questioned an SLNB with my consultant I was told that no one would perform one outside of the guidelines (I am stage 1a).  Maybe he was incorrect, maybe I should have been more proactive, but I really don't think I would have got anywhere.

                     

                    To the poster who suggested that a melanoma patient in either the UK or another country with a similar system goes and pays for an SNLB in another country, presumeably such as the US, to put it bluntly this is a ridiculous suggestion as all but the privileged few would be able to afford to do this.

                     

                    I fully agree that we should all be our own advocates but I think we should also recognise that, particularly in taxation funded medical systems, there is only so much money in the pot.  Guidelines are prepared by the most eminent professionals in their field, and in the case of melanoma, there are a number of world renowned experts in the UK.  The guidelines are based on research, much of which is provided by US studies, and although you can always come up with contrary research, who can be sure that the research relied upon isn't a more accurate version. Nothing is written in stone.

                     

                    Hopefully I will be one of the 95% of stage 1a patients who didn't have a positive node at diagnosis, but I will never know and it would be wrong for others in my situation to feel that they have somehow failed themselves for not pushing for an SNLB at the time.  

                     

                    Best wishes to everyone, Becky

                     

                     

                     

                     

                     

                     

                     

                    becky15
                    Participant

                      Many thanks Celeste and Jackie for your detailed replies.  I must apologise for my rather blunt initial posting as I was coming to the end of a train journey and was rushing to post before getting off the train.

                       

                      I appreciate that we have very different medical systems. I do feel however that it is possible to debate the provision of treatment with an insurance company whereas this is virtually impossible with the NHS who follow strict guidelines which, in the case of melanoma, are governed by the British Association of Dermatologists 2010 guidelines.  Having re-read these, I see that there is provision for an SNLB to be offered to stage 1b patients (although in practice, my consultant told me this is usually restricted to those melanomas over 1mm) there is no such provision for Stage 1a patients.  The guidelines recognise a 5% risk of a positive node with a less than 1mm melanoma but that this is coupled with a 5% chance of morbidity, hence giving an SLNB to a stage 1a patient is presumeably not seen worth the risk.  I actually had my melanoma diagnosed and treated privately, paying for it myself as I do not have private medical insurance, and when I questioned an SLNB with my consultant I was told that no one would perform one outside of the guidelines (I am stage 1a).  Maybe he was incorrect, maybe I should have been more proactive, but I really don't think I would have got anywhere.

                       

                      To the poster who suggested that a melanoma patient in either the UK or another country with a similar system goes and pays for an SNLB in another country, presumeably such as the US, to put it bluntly this is a ridiculous suggestion as all but the privileged few would be able to afford to do this.

                       

                      I fully agree that we should all be our own advocates but I think we should also recognise that, particularly in taxation funded medical systems, there is only so much money in the pot.  Guidelines are prepared by the most eminent professionals in their field, and in the case of melanoma, there are a number of world renowned experts in the UK.  The guidelines are based on research, much of which is provided by US studies, and although you can always come up with contrary research, who can be sure that the research relied upon isn't a more accurate version. Nothing is written in stone.

                       

                      Hopefully I will be one of the 95% of stage 1a patients who didn't have a positive node at diagnosis, but I will never know and it would be wrong for others in my situation to feel that they have somehow failed themselves for not pushing for an SNLB at the time.  

                       

                      Best wishes to everyone, Becky

                       

                       

                       

                       

                       

                       

                       

                      becky15
                      Participant

                        Many thanks Celeste and Jackie for your detailed replies.  I must apologise for my rather blunt initial posting as I was coming to the end of a train journey and was rushing to post before getting off the train.

                         

                        I appreciate that we have very different medical systems. I do feel however that it is possible to debate the provision of treatment with an insurance company whereas this is virtually impossible with the NHS who follow strict guidelines which, in the case of melanoma, are governed by the British Association of Dermatologists 2010 guidelines.  Having re-read these, I see that there is provision for an SNLB to be offered to stage 1b patients (although in practice, my consultant told me this is usually restricted to those melanomas over 1mm) there is no such provision for Stage 1a patients.  The guidelines recognise a 5% risk of a positive node with a less than 1mm melanoma but that this is coupled with a 5% chance of morbidity, hence giving an SLNB to a stage 1a patient is presumeably not seen worth the risk.  I actually had my melanoma diagnosed and treated privately, paying for it myself as I do not have private medical insurance, and when I questioned an SLNB with my consultant I was told that no one would perform one outside of the guidelines (I am stage 1a).  Maybe he was incorrect, maybe I should have been more proactive, but I really don't think I would have got anywhere.

                         

                        To the poster who suggested that a melanoma patient in either the UK or another country with a similar system goes and pays for an SNLB in another country, presumeably such as the US, to put it bluntly this is a ridiculous suggestion as all but the privileged few would be able to afford to do this.

                         

                        I fully agree that we should all be our own advocates but I think we should also recognise that, particularly in taxation funded medical systems, there is only so much money in the pot.  Guidelines are prepared by the most eminent professionals in their field, and in the case of melanoma, there are a number of world renowned experts in the UK.  The guidelines are based on research, much of which is provided by US studies, and although you can always come up with contrary research, who can be sure that the research relied upon isn't a more accurate version. Nothing is written in stone.

                         

                        Hopefully I will be one of the 95% of stage 1a patients who didn't have a positive node at diagnosis, but I will never know and it would be wrong for others in my situation to feel that they have somehow failed themselves for not pushing for an SNLB at the time.  

                         

                        Best wishes to everyone, Becky

                         

                         

                         

                         

                         

                         

                         

                        becky15
                        Participant

                          Mat, may I just ask why you were going to oncology appointments for 10 years with such a thin melanoma?

                          Here in the UK, you would never get to see an oncologist with a stage 1 melanoma less than 1mm and you would only get follow up with a dermatologist for a year before then being discharged if stage 1a or three years if 1b.  These are the national guidelines.

                          becky15
                          Participant

                            Mat, may I just ask why you were going to oncology appointments for 10 years with such a thin melanoma?

                            Here in the UK, you would never get to see an oncologist with a stage 1 melanoma less than 1mm and you would only get follow up with a dermatologist for a year before then being discharged if stage 1a or three years if 1b.  These are the national guidelines.

                            becky15
                            Participant

                              Mat, may I just ask why you were going to oncology appointments for 10 years with such a thin melanoma?

                              Here in the UK, you would never get to see an oncologist with a stage 1 melanoma less than 1mm and you would only get follow up with a dermatologist for a year before then being discharged if stage 1a or three years if 1b.  These are the national guidelines.

                              becky15
                              Participant

                                Why has the webinar disappeared from thr MRF site- it was there a couple of days ago.

                                becky15
                                Participant

                                  Why has the webinar disappeared from thr MRF site- it was there a couple of days ago.

                                  becky15
                                  Participant

                                    Why has the webinar disappeared from thr MRF site- it was there a couple of days ago.

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