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Diagnosed In Situ – lentigo maligna; nervous about Doc’s advice

Forums General Melanoma Community Diagnosed In Situ – lentigo maligna; nervous about Doc’s advice

  • Post
    JL44
    Participant

    I was diagnosed with a lentigo maligna in the bowl of my ear and had surgery and a skin graft a few months ago.  I am a teacher and coach; my job puts me in the sun many hours a day in the deep south.  I'm a 49 year old male in otherwise, good shape.  I spotted this new "spot" and showed my dermatoligist.  The shave biopsy came back as a lentigo maligna…I have been seeing my derm on a regular basis for years, have had a few moles removed, and  most came back "mild" with one or two coming back "moderatley" atypical…until this one. So, I saw an ENT oncologist who gave me some options. I chose to stay with him and do an aggressive WLE instead of Moh's.  He took out the skin in the bowl of my ear and the cartilage underneath.  All the margins can back negative and no evidence of any melanoma in the underlying cartilage.  The pathology again came back as lentigo maligna – in situ.

    They tell me  I am lucky to have caught this early, but I still feel somewhat confused.  I worry that my job puts me in the sun so much and that lentigo maligna has a high recurrence rate.   When I asked my derm and the oncologist about moving forward…should I stop coaching or participating in outdoor activities?.. they say, "No, just be "sun safe".  I have been and will continue to be "sun safe", but the anxiety I have when outside is sometimes all I can think about. Should I even be outside in the heat of the day?  If I am, will it make it more likely to recur or get a new or different melanoma?   Too many questions….

     

     

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  • Replies
      Janner
      Participant

      Additional sun exposure has not been shown to increase recurrence rates.  Your worry is a new primary melanoma (and the other skin cancers).  Less than 10% of melanoma warriors have a second primary melanoma so your odds are still good.  Yes, Lentigo Maligna does have a higher local recurrence rate so watch your graft area.  My derm did a clinical trial using Aldara (topical chemo) before the WLE to reduce the size of the lesion – so maybe you could keep that in the back of your mind for future.

      I was diagnosed at age 29 and was an outdoors person playing lots of competitive tennis.  I have since had 2 other primaries, but it was determined I had a fairly rare genetic defect making that high risk for me.  I think the strategy I developed over time is….. DON'T LET MELANOMA WIN.  Do what you want to do in life.  You stop coaching, you let melanoma win even if it never comes back.  There are ways to do all your activities safely with clothing, hats and sunblock.  (I prefer covering up to sunblock).  I don't play tennis nearly as much as I did 20+ years ago, but that is not because of melanoma.  I live with melanoma but I don't let it dictate to me.  I just do things smarter.  If I have choices, I might choose to do things at less sunny times of the day.  But if that isn't possible, I cover up and live my life just like I want.  Give melanoma the respect it deserves, then LIVE LIFE!!!

      Janner

      Stage IB since 1992, 3 MM primaries

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        JL44
        Participant

        Janner,

        Thanks so much for the reply. I'm trying to continue with life as normal…or the new normal.  I just wasn't really sure how to move on after surgery.  It was like, "You're cured, now forget it happened and move on" and I needed more answers.  Don't get me wrong, the care I recieved was great, but because of my profession, I had more questions.  I'm seeing my derm as ordered…but everything seems to be a symptom.  I had a sinus infection 2 weeks ago that caused me to have some swollen lymph nodes along my jaw.  I was worried so talked to my general practicioner and got a CT scan of my head/neck.  All came back normal and after my antibiotics, no issues.  It's hard to know when to press the panic button and when I'm just worrying myself (and wife) unneccessarily.  I'm checking and rechecking every spot on my body…I guess in time, the "new" normal will be, just normal.  

        I've read so many stories and tried to get as much info as possible.  I asked about depth and staging, but they tell me mine was just very early and "in situ".  But there are even stories about those…I appreciate the info and pray for all those dealing with this; along with the researchers and scientists working for better treatments.  

        Thanks again, my best to you.

        Loading spinner
        Janner
        Participant

        Internet stories are just that, stories.  You CANNOT take what someone else posts as truth or even relevant to your situation.  I've read so many stories over the years of people who KNEW all about their lesion, but when they post details — they don't add up.  They are missing something or misinformed.  Take everything you read on the internet with a grain of salt.

        Maybe try my derm's 6 week rule (which I have shortened to maybe 3 weeks).  Like with your sinus infection.  If you had waited a normal time for things to resolve – say 6 weeks, then you would know this was normal, not melanoma related.  You need to give things a certain amount of time for normal healing.  If the symptom in question does not heal in that 3-6 weeks, then you call your doc.  Obviously, if you have rapidly changing symptoms that seem to require more attention, then that doesn't work.  But in reality, most things are NOT related to melanoma and most things heal on their own given time.  That's the new normal you need to understand.  Realistically, a CT was well above normal protocol for simple node swelling when you have a sinus infection.  You really need to come in with the attitude that  NOTHING is related to melanoma and only if something persists – then rule melanoma out.  That's really what an in situ diagnosis means.  I'm not saying ignore anything or putting things off, just really common sense.  If something wouldn't have worried you PRIOR to your diagnosis, then it's not likely to be related to melanoma AFTER your diagnosis.  Keep that in mind when you worry.

        In situ is stage 0 with no depth, that's the definition of in situ.

        Loading spinner
        JL44
        Participant

        That's where that little bit of doubt came in; reading stories and reading that in situ has an almost 100% cure rate.  Why almost? — misdiagnosed or is there something I'm missing…maybe that was me?  As of now, I plan on continuing my coaching career and outdoor activities with my family.  After 25 years of coaching, I finally get to coach my own son.  I've been looking forward to this for a long time.  I thank you for your insight and I will give the 6 week rule a try (maybe I'll go to 4 weeks). 

        One more question: is there a time frame when I am more likely to get a 2nd primary or recurrence? Like 1 year or 5 years…

        Thanks again for sharing you knowledge and experiences

        Loading spinner
        Janner
        Participant

        A local recurrence could be any time, but more likely to be sooner than later. The first two years are considered highest risk.  LM has a higher local recurrence rate but is considered slow growing and typically takes its time before becoming invasive.  So you get the good and the bad with LM.  A new primary is totally independent of any previous melanoma so could occur at any interval.  I had one in 1992, 2000 and 2001.  No rhyme or reason with those.

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        JL44
        Participant

        I appreciate the reply.  I'm sure I will continue to research and read, which is probably not helpful all the time…thank you for taking the time to discuss this with me, it's a tremendous help.  I guess all things cosidered, I'm in a pretty good place as far as the statistics I've read.  

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        JL44
        Participant

        I appreciate the reply.  I'm sure I will continue to research and read, which is probably not helpful all the time…thank you for taking the time to discuss this with me, it's a tremendous help.  I guess all things cosidered, I'm in a pretty good place as far as the statistics I've read.  

        Loading spinner
        JL44
        Participant

        I appreciate the reply.  I'm sure I will continue to research and read, which is probably not helpful all the time…thank you for taking the time to discuss this with me, it's a tremendous help.  I guess all things cosidered, I'm in a pretty good place as far as the statistics I've read.  

        Loading spinner
        Janner
        Participant

        A local recurrence could be any time, but more likely to be sooner than later. The first two years are considered highest risk.  LM has a higher local recurrence rate but is considered slow growing and typically takes its time before becoming invasive.  So you get the good and the bad with LM.  A new primary is totally independent of any previous melanoma so could occur at any interval.  I had one in 1992, 2000 and 2001.  No rhyme or reason with those.

        Loading spinner
        Janner
        Participant

        A local recurrence could be any time, but more likely to be sooner than later. The first two years are considered highest risk.  LM has a higher local recurrence rate but is considered slow growing and typically takes its time before becoming invasive.  So you get the good and the bad with LM.  A new primary is totally independent of any previous melanoma so could occur at any interval.  I had one in 1992, 2000 and 2001.  No rhyme or reason with those.

        Loading spinner
        JL44
        Participant

        That's where that little bit of doubt came in; reading stories and reading that in situ has an almost 100% cure rate.  Why almost? — misdiagnosed or is there something I'm missing…maybe that was me?  As of now, I plan on continuing my coaching career and outdoor activities with my family.  After 25 years of coaching, I finally get to coach my own son.  I've been looking forward to this for a long time.  I thank you for your insight and I will give the 6 week rule a try (maybe I'll go to 4 weeks). 

        One more question: is there a time frame when I am more likely to get a 2nd primary or recurrence? Like 1 year or 5 years…

        Thanks again for sharing you knowledge and experiences

        Loading spinner
        JL44
        Participant

        That's where that little bit of doubt came in; reading stories and reading that in situ has an almost 100% cure rate.  Why almost? — misdiagnosed or is there something I'm missing…maybe that was me?  As of now, I plan on continuing my coaching career and outdoor activities with my family.  After 25 years of coaching, I finally get to coach my own son.  I've been looking forward to this for a long time.  I thank you for your insight and I will give the 6 week rule a try (maybe I'll go to 4 weeks). 

        One more question: is there a time frame when I am more likely to get a 2nd primary or recurrence? Like 1 year or 5 years…

        Thanks again for sharing you knowledge and experiences

        Loading spinner
        Janner
        Participant

        Internet stories are just that, stories.  You CANNOT take what someone else posts as truth or even relevant to your situation.  I've read so many stories over the years of people who KNEW all about their lesion, but when they post details — they don't add up.  They are missing something or misinformed.  Take everything you read on the internet with a grain of salt.

        Maybe try my derm's 6 week rule (which I have shortened to maybe 3 weeks).  Like with your sinus infection.  If you had waited a normal time for things to resolve – say 6 weeks, then you would know this was normal, not melanoma related.  You need to give things a certain amount of time for normal healing.  If the symptom in question does not heal in that 3-6 weeks, then you call your doc.  Obviously, if you have rapidly changing symptoms that seem to require more attention, then that doesn't work.  But in reality, most things are NOT related to melanoma and most things heal on their own given time.  That's the new normal you need to understand.  Realistically, a CT was well above normal protocol for simple node swelling when you have a sinus infection.  You really need to come in with the attitude that  NOTHING is related to melanoma and only if something persists – then rule melanoma out.  That's really what an in situ diagnosis means.  I'm not saying ignore anything or putting things off, just really common sense.  If something wouldn't have worried you PRIOR to your diagnosis, then it's not likely to be related to melanoma AFTER your diagnosis.  Keep that in mind when you worry.

        In situ is stage 0 with no depth, that's the definition of in situ.

        Loading spinner
        Janner
        Participant

        Internet stories are just that, stories.  You CANNOT take what someone else posts as truth or even relevant to your situation.  I've read so many stories over the years of people who KNEW all about their lesion, but when they post details — they don't add up.  They are missing something or misinformed.  Take everything you read on the internet with a grain of salt.

        Maybe try my derm's 6 week rule (which I have shortened to maybe 3 weeks).  Like with your sinus infection.  If you had waited a normal time for things to resolve – say 6 weeks, then you would know this was normal, not melanoma related.  You need to give things a certain amount of time for normal healing.  If the symptom in question does not heal in that 3-6 weeks, then you call your doc.  Obviously, if you have rapidly changing symptoms that seem to require more attention, then that doesn't work.  But in reality, most things are NOT related to melanoma and most things heal on their own given time.  That's the new normal you need to understand.  Realistically, a CT was well above normal protocol for simple node swelling when you have a sinus infection.  You really need to come in with the attitude that  NOTHING is related to melanoma and only if something persists – then rule melanoma out.  That's really what an in situ diagnosis means.  I'm not saying ignore anything or putting things off, just really common sense.  If something wouldn't have worried you PRIOR to your diagnosis, then it's not likely to be related to melanoma AFTER your diagnosis.  Keep that in mind when you worry.

        In situ is stage 0 with no depth, that's the definition of in situ.

        Loading spinner
        JL44
        Participant

        Janner,

        Thanks so much for the reply. I'm trying to continue with life as normal…or the new normal.  I just wasn't really sure how to move on after surgery.  It was like, "You're cured, now forget it happened and move on" and I needed more answers.  Don't get me wrong, the care I recieved was great, but because of my profession, I had more questions.  I'm seeing my derm as ordered…but everything seems to be a symptom.  I had a sinus infection 2 weeks ago that caused me to have some swollen lymph nodes along my jaw.  I was worried so talked to my general practicioner and got a CT scan of my head/neck.  All came back normal and after my antibiotics, no issues.  It's hard to know when to press the panic button and when I'm just worrying myself (and wife) unneccessarily.  I'm checking and rechecking every spot on my body…I guess in time, the "new" normal will be, just normal.  

        I've read so many stories and tried to get as much info as possible.  I asked about depth and staging, but they tell me mine was just very early and "in situ".  But there are even stories about those…I appreciate the info and pray for all those dealing with this; along with the researchers and scientists working for better treatments.  

        Thanks again, my best to you.

        Loading spinner
        JL44
        Participant

        Janner,

        Thanks so much for the reply. I'm trying to continue with life as normal…or the new normal.  I just wasn't really sure how to move on after surgery.  It was like, "You're cured, now forget it happened and move on" and I needed more answers.  Don't get me wrong, the care I recieved was great, but because of my profession, I had more questions.  I'm seeing my derm as ordered…but everything seems to be a symptom.  I had a sinus infection 2 weeks ago that caused me to have some swollen lymph nodes along my jaw.  I was worried so talked to my general practicioner and got a CT scan of my head/neck.  All came back normal and after my antibiotics, no issues.  It's hard to know when to press the panic button and when I'm just worrying myself (and wife) unneccessarily.  I'm checking and rechecking every spot on my body…I guess in time, the "new" normal will be, just normal.  

        I've read so many stories and tried to get as much info as possible.  I asked about depth and staging, but they tell me mine was just very early and "in situ".  But there are even stories about those…I appreciate the info and pray for all those dealing with this; along with the researchers and scientists working for better treatments.  

        Thanks again, my best to you.

        Loading spinner
      Janner
      Participant

      Additional sun exposure has not been shown to increase recurrence rates.  Your worry is a new primary melanoma (and the other skin cancers).  Less than 10% of melanoma warriors have a second primary melanoma so your odds are still good.  Yes, Lentigo Maligna does have a higher local recurrence rate so watch your graft area.  My derm did a clinical trial using Aldara (topical chemo) before the WLE to reduce the size of the lesion – so maybe you could keep that in the back of your mind for future.

      I was diagnosed at age 29 and was an outdoors person playing lots of competitive tennis.  I have since had 2 other primaries, but it was determined I had a fairly rare genetic defect making that high risk for me.  I think the strategy I developed over time is….. DON'T LET MELANOMA WIN.  Do what you want to do in life.  You stop coaching, you let melanoma win even if it never comes back.  There are ways to do all your activities safely with clothing, hats and sunblock.  (I prefer covering up to sunblock).  I don't play tennis nearly as much as I did 20+ years ago, but that is not because of melanoma.  I live with melanoma but I don't let it dictate to me.  I just do things smarter.  If I have choices, I might choose to do things at less sunny times of the day.  But if that isn't possible, I cover up and live my life just like I want.  Give melanoma the respect it deserves, then LIVE LIFE!!!

      Janner

      Stage IB since 1992, 3 MM primaries

      Loading spinner
      Janner
      Participant

      Additional sun exposure has not been shown to increase recurrence rates.  Your worry is a new primary melanoma (and the other skin cancers).  Less than 10% of melanoma warriors have a second primary melanoma so your odds are still good.  Yes, Lentigo Maligna does have a higher local recurrence rate so watch your graft area.  My derm did a clinical trial using Aldara (topical chemo) before the WLE to reduce the size of the lesion – so maybe you could keep that in the back of your mind for future.

      I was diagnosed at age 29 and was an outdoors person playing lots of competitive tennis.  I have since had 2 other primaries, but it was determined I had a fairly rare genetic defect making that high risk for me.  I think the strategy I developed over time is….. DON'T LET MELANOMA WIN.  Do what you want to do in life.  You stop coaching, you let melanoma win even if it never comes back.  There are ways to do all your activities safely with clothing, hats and sunblock.  (I prefer covering up to sunblock).  I don't play tennis nearly as much as I did 20+ years ago, but that is not because of melanoma.  I live with melanoma but I don't let it dictate to me.  I just do things smarter.  If I have choices, I might choose to do things at less sunny times of the day.  But if that isn't possible, I cover up and live my life just like I want.  Give melanoma the respect it deserves, then LIVE LIFE!!!

      Janner

      Stage IB since 1992, 3 MM primaries

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