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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

      Loading spinner
      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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