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New and looking for advice!

Forums General Melanoma Community New and looking for advice!

  • Post
    Wendi Lynn
    Participant

      Hi Everyone!

      I've been lurking for awhile and reading all the great advice and support given.  Seems like this is a great support group and I'm looking forward to being an active part of this community!

      Hi Everyone!

      I've been lurking for awhile and reading all the great advice and support given.  Seems like this is a great support group and I'm looking forward to being an active part of this community!

      I was diagnosed in May after having a mole that I've had my whole life on my cheek biopsied by the dermatologist.  2 weeks later I had the WLE (6/15).  Clear margins after WLE.  2 weeks later I met with the oncologist.  Night before I saw him, I found a lump right at my jaw line.  Pointed it out to the oncologist and was told it was probably nothing.   He sent me to a Head & Neck doctor for the SNB.  A month later I get in to see the new doctor who orders a biopsy on the lump.  A month later I get the biopsy done (9/1).  Still waiting on the results of the biopsy, but I am prepared for the next step.  (Can't even begin to tell you all how frustrated I am with all the waiting, but after reading some posts, the waiting game seems very common!)

      I was hoping to hear about other's experience with a neck dissection.  I've searched here and online and really don't find a lot of information.  I suspect that's what's next for me and I want to be prepared with the right questions and expectations.

      As for the advice, I'm terribly disappointed with both these doctors that I'm working with now and was wondering if anyone had a reccommendation on locating melanoma specialists.  Not sure what information I can provide except that I'm located near Long Beach, CA. 

      Again, can't say thanks enough to everyone for all that I've learned so far. 

      Wendi

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    • Replies
        Julie in SoCal
        Participant

          Hi Wendy,

          Sorry you have to join us, but I can say you've found a good group!  Welcome.

          I don't know anything about neck disections (my primary was on the back of my left hand), but I can recommend a good surgeon and onc. in Southern California.    I go to Dr. Stephen J O'Day (Angeles Clinic in Santa Monica) for over all care, and Richard Essner (John Wayne Cancer Center  at St. Joseph's Hospital in Santa Monica? / LA) Both are very, very knowledgable about Mel and I've found them to be wonderfully caring to work with.  I live in Huntington Beach and gladly go to Santa Monica to see them.

          You can check them out at

          http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx

          and

          http://www.jwci.org/cancer-info.aspx?id=110

          Julie

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          Julie in SoCal
          Participant

            Hi Wendy,

            Sorry you have to join us, but I can say you've found a good group!  Welcome.

            I don't know anything about neck disections (my primary was on the back of my left hand), but I can recommend a good surgeon and onc. in Southern California.    I go to Dr. Stephen J O'Day (Angeles Clinic in Santa Monica) for over all care, and Richard Essner (John Wayne Cancer Center  at St. Joseph's Hospital in Santa Monica? / LA) Both are very, very knowledgable about Mel and I've found them to be wonderfully caring to work with.  I live in Huntington Beach and gladly go to Santa Monica to see them.

            You can check them out at

            http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx

            and

            http://www.jwci.org/cancer-info.aspx?id=110

            Julie

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            Julie in SoCal
            Participant

              Hi Wendy,

              Sorry you have to join us, but I can say you've found a good group!  Welcome.

              I don't know anything about neck disections (my primary was on the back of my left hand), but I can recommend a good surgeon and onc. in Southern California.    I go to Dr. Stephen J O'Day (Angeles Clinic in Santa Monica) for over all care, and Richard Essner (John Wayne Cancer Center  at St. Joseph's Hospital in Santa Monica? / LA) Both are very, very knowledgable about Mel and I've found them to be wonderfully caring to work with.  I live in Huntington Beach and gladly go to Santa Monica to see them.

              You can check them out at

              http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx

              and

              http://www.jwci.org/cancer-info.aspx?id=110

              Julie

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                Wendi Lynn
                Participant

                  Julie,

                  Thanks so much for the info!  I am going to check this out!!!

                  Wendi

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                  Wendi Lynn
                  Participant

                    Julie,

                    Thanks so much for the info!  I am going to check this out!!!

                    Wendi

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                  Julie in SoCal
                  Participant

                    Hi Wendy,

                    Sorry you have to join us, but I can say you've found a good group!  Welcome.

                    I don't know anything about neck disections (my primary was on the back of my left hand), but I can recommend a good surgeon and onc. in Southern California.    I go to Dr. Stephen J O'Day (Angeles Clinic in Santa Monica) for over all care, and Richard Essner (John Wayne Cancer Center  at St. Joseph's Hospital in Santa Monica? / LA) Both are very, very knowledgable about Mel and I've found them to be wonderfully caring to work with.  I live in Huntington Beach and gladly go to Santa Monica to see them.

                    You can check them out at

                    http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx

                    and

                    http://www.jwci.org/cancer-info.aspx?id=110

                    Julie

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                    StanN
                    Participant

                      I wonder if you could tell us the breslow depth of the primary,i assume it was  under .75 mm because I didn;t read where you had a snb.. The snb is really the tool that stages you..depending on node involvment.

                         Back in Oct 2001 I had a complete neck dissection,over 200 lymph nodes were removed,and the path on 84 nodes  came back clear. I did interferon  9 months,and have been N.E. D  since the Oct . surgery.I have  some mobility issues with the neck ,but not much.I I went to physicial rehab.which helped  greatly.The scarrs  have faded,and are barely noticable.

                        Don't get ahead of yourself yet…the lump maybe nothing,but if it turns out to be mm then  you  may be looking at a dissection..

                      There  are a  lot of variables,with your  case  so unfortunately  your stuck in a holding pattern for  while.

                      I know the waiting seems crazy when dealing with a cancer issue,but  most of us here have had to deal with it,sorry

                        If your new  here  you can get imformation on patients by clicking on  their profile.It gives a medical  history,

                        I hope the lump is bieng and this is a  fleeting memeory for you,

                                                                                                                                 Good luck,

                                                                                                                                                      StanN

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                        Wendi Lynn
                        Participant

                          Hi Stan!

                          You sound an awful lot like my husband!!! 

                          I was Breslow 1.67mm and Clarks IV.   I guess I didn't learn enough in the 2 weeks between initial dx and WLE because I would have asked why no SNB at the same time as the WLE.  After the Head & Neck doc saw and felt the lump he ordered an ultrasound biopsy which I had last Wednesday.  He did tell me that if it came back with melanoma, that we would then be doing the SNB.  All seems a little odd, but I guess I understand doing the biopsy first.  A lot less invasive.

                          We, of course, are hoping for the best but I am preparing for the worst.  And after these last 3 months, I think I feel better knowing up front what I COULD be in for!  Thanks so much for the info!  I was actually reviewing profiles in between this post and the replies :)

                          And congrats on NED!!  I strive to be in those shoes one day!!!

                          Thanks again!

                          Wendi

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                          Wendi Lynn
                          Participant

                            Hi Stan!

                            You sound an awful lot like my husband!!! 

                            I was Breslow 1.67mm and Clarks IV.   I guess I didn't learn enough in the 2 weeks between initial dx and WLE because I would have asked why no SNB at the same time as the WLE.  After the Head & Neck doc saw and felt the lump he ordered an ultrasound biopsy which I had last Wednesday.  He did tell me that if it came back with melanoma, that we would then be doing the SNB.  All seems a little odd, but I guess I understand doing the biopsy first.  A lot less invasive.

                            We, of course, are hoping for the best but I am preparing for the worst.  And after these last 3 months, I think I feel better knowing up front what I COULD be in for!  Thanks so much for the info!  I was actually reviewing profiles in between this post and the replies :)

                            And congrats on NED!!  I strive to be in those shoes one day!!!

                            Thanks again!

                            Wendi

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                          StanN
                          Participant

                            I wonder if you could tell us the breslow depth of the primary,i assume it was  under .75 mm because I didn;t read where you had a snb.. The snb is really the tool that stages you..depending on node involvment.

                               Back in Oct 2001 I had a complete neck dissection,over 200 lymph nodes were removed,and the path on 84 nodes  came back clear. I did interferon  9 months,and have been N.E. D  since the Oct . surgery.I have  some mobility issues with the neck ,but not much.I I went to physicial rehab.which helped  greatly.The scarrs  have faded,and are barely noticable.

                              Don't get ahead of yourself yet…the lump maybe nothing,but if it turns out to be mm then  you  may be looking at a dissection..

                            There  are a  lot of variables,with your  case  so unfortunately  your stuck in a holding pattern for  while.

                            I know the waiting seems crazy when dealing with a cancer issue,but  most of us here have had to deal with it,sorry

                              If your new  here  you can get imformation on patients by clicking on  their profile.It gives a medical  history,

                              I hope the lump is bieng and this is a  fleeting memeory for you,

                                                                                                                                       Good luck,

                                                                                                                                                            StanN

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                            paul
                            Participant

                              Hi Wendy,

                              I agree with Stan that you shouldn't get ahead of yourself. Sometimes Drs want to wait to see what something will do. The few weeks seems interminable for the patient, but is probably not medically significant, and might save an unnecessary procedure. I've had two neck dissections, a partial (2003) and a radical (2009). The main thing, should you get there, is to do the rehab as soon as possible. It's not always something the Drs push that much, since it's out of their specialty, but it makes a world of difference in terms of getting mobility back.

                              Here's hoping that you don't have to do the procedure, but, if you do, it's certainly something that people bounce back from, and how quickly depends on what they have to do.

                              Paul

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                                Wendi Lynn
                                Participant

                                  Paul,

                                  Thanks for the advice…and confirmation that it's not the end of the world!!!

                                  Physical Therapy will be at the top of my list of questions should I get there.

                                  Hope all is positive in your part of the world!

                                  Wendi

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                                  Wendi Lynn
                                  Participant

                                    Paul,

                                    Thanks for the advice…and confirmation that it's not the end of the world!!!

                                    Physical Therapy will be at the top of my list of questions should I get there.

                                    Hope all is positive in your part of the world!

                                    Wendi

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                                  paul
                                  Participant

                                    Hi Wendy,

                                    I agree with Stan that you shouldn't get ahead of yourself. Sometimes Drs want to wait to see what something will do. The few weeks seems interminable for the patient, but is probably not medically significant, and might save an unnecessary procedure. I've had two neck dissections, a partial (2003) and a radical (2009). The main thing, should you get there, is to do the rehab as soon as possible. It's not always something the Drs push that much, since it's out of their specialty, but it makes a world of difference in terms of getting mobility back.

                                    Here's hoping that you don't have to do the procedure, but, if you do, it's certainly something that people bounce back from, and how quickly depends on what they have to do.

                                    Paul

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                                    paul
                                    Participant

                                      Hi Wendy,

                                      I agree with Stan that you shouldn't get ahead of yourself. Sometimes Drs want to wait to see what something will do. The few weeks seems interminable for the patient, but is probably not medically significant, and might save an unnecessary procedure. I've had two neck dissections, a partial (2003) and a radical (2009). The main thing, should you get there, is to do the rehab as soon as possible. It's not always something the Drs push that much, since it's out of their specialty, but it makes a world of difference in terms of getting mobility back.

                                      Here's hoping that you don't have to do the procedure, but, if you do, it's certainly something that people bounce back from, and how quickly depends on what they have to do.

                                      Paul

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                                      paul
                                      Participant

                                        Hi Wendy,

                                        I agree with Stan that you shouldn't get ahead of yourself. Sometimes Drs want to wait to see what something will do. The few weeks seems interminable for the patient, but is probably not medically significant, and might save an unnecessary procedure. I've had two neck dissections, a partial (2003) and a radical (2009). The main thing, should you get there, is to do the rehab as soon as possible. It's not always something the Drs push that much, since it's out of their specialty, but it makes a world of difference in terms of getting mobility back.

                                        Here's hoping that you don't have to do the procedure, but, if you do, it's certainly something that people bounce back from, and how quickly depends on what they have to do.

                                        Paul

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                                        DonW
                                        Participant

                                          Wendi — From the sounds of things, a second opinion would seem a very good idea! The doctors Julie recommended are top notch, so you might try them. It really doesn't sound to me like your case has been handled correctly.

                                          It will be nice to know that you are in the hands of good melanoma specialists. Good luck and keep us posted!

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                                          DonW
                                          Participant

                                            Wendi — From the sounds of things, a second opinion would seem a very good idea! The doctors Julie recommended are top notch, so you might try them. It really doesn't sound to me like your case has been handled correctly.

                                            It will be nice to know that you are in the hands of good melanoma specialists. Good luck and keep us posted!

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