The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

I guess I don’t understand

Forums General Melanoma Community I guess I don’t understand

  • Post
    CourtneyDMiller
    Participant
    Can someone please explain:

    Ive been reading all these stories about how people have melanoma in situ or stage 1 or 2 and then it suddenly reoccures in the lymph nodes or organs months to years later. My question is HOW? I thought in situ is 100% cureable with wide local incision – and about the same with stage 1 and 2. Would it be wrong pathology results? Or does this happen more often than what I thought?

Viewing 5 reply threads
  • Replies
      Janner
      Participant

      Nothing is 100%, but in situ is close.  There are no blood vessels or lymph vessels in the epidermis so there is no way for melanoma to spread.  Having said that, it appears with an extremely small subset, it happens.  Could it be from the biopsy or WLE?  Misread pathology?  Another undiagnosed or unknown primary?  No one knows.  Or someone doesn't really understand their own situation – that happens more than you would think. Some people think they know their story but if they post their pathology report, you find that things are a little different.  Like their in situ having a depth (meaning it is not in situ), or Clark's Level being mistaken for stage.

      As for stage 1a, 1b, and 2a,2b,2c – there is a huge difference in survival stats.  Take stage 1b – has somewhere in the range of 90% survival stats.  That means ~10% have melanoma come back.  So you say you read about this all the time.  You don't read about the 90% because they aren't hanging around a melanoma bulletin board anymore.  You see the exceptions only – the 10%.  It looks like 100% because the only ones who post are those dealing with recurrences or those who are newly diagnosed.  The others have no need to ask questions – they are living life.  Bulletin boards are NOT a representative sample of the melanoma population.

      I have been on this site for 15+ years.  I cannot tell you the number of early stagers who have posted, then moved on.  I used to moderate a stage 0/1 BB and the same thing happened there – people moved on when melanoma was no longer occupying their every thought.

      Melanoma can come back – and no one is given a guarantee.  Agonizing if your own melanoma will return only makes you more anxious.  We lose our feeling of "control" and that is a struggle for everyone.  But if you're early stage and you hang around here and aren't newly diagnosed and asking questions, then you are feeding into that anxiety – and not doing yourself any favors.  Just my thoughts. 

      Janner
      Participant

      Nothing is 100%, but in situ is close.  There are no blood vessels or lymph vessels in the epidermis so there is no way for melanoma to spread.  Having said that, it appears with an extremely small subset, it happens.  Could it be from the biopsy or WLE?  Misread pathology?  Another undiagnosed or unknown primary?  No one knows.  Or someone doesn't really understand their own situation – that happens more than you would think. Some people think they know their story but if they post their pathology report, you find that things are a little different.  Like their in situ having a depth (meaning it is not in situ), or Clark's Level being mistaken for stage.

      As for stage 1a, 1b, and 2a,2b,2c – there is a huge difference in survival stats.  Take stage 1b – has somewhere in the range of 90% survival stats.  That means ~10% have melanoma come back.  So you say you read about this all the time.  You don't read about the 90% because they aren't hanging around a melanoma bulletin board anymore.  You see the exceptions only – the 10%.  It looks like 100% because the only ones who post are those dealing with recurrences or those who are newly diagnosed.  The others have no need to ask questions – they are living life.  Bulletin boards are NOT a representative sample of the melanoma population.

      I have been on this site for 15+ years.  I cannot tell you the number of early stagers who have posted, then moved on.  I used to moderate a stage 0/1 BB and the same thing happened there – people moved on when melanoma was no longer occupying their every thought.

      Melanoma can come back – and no one is given a guarantee.  Agonizing if your own melanoma will return only makes you more anxious.  We lose our feeling of "control" and that is a struggle for everyone.  But if you're early stage and you hang around here and aren't newly diagnosed and asking questions, then you are feeding into that anxiety – and not doing yourself any favors.  Just my thoughts. 

      Janner
      Participant

      Nothing is 100%, but in situ is close.  There are no blood vessels or lymph vessels in the epidermis so there is no way for melanoma to spread.  Having said that, it appears with an extremely small subset, it happens.  Could it be from the biopsy or WLE?  Misread pathology?  Another undiagnosed or unknown primary?  No one knows.  Or someone doesn't really understand their own situation – that happens more than you would think. Some people think they know their story but if they post their pathology report, you find that things are a little different.  Like their in situ having a depth (meaning it is not in situ), or Clark's Level being mistaken for stage.

      As for stage 1a, 1b, and 2a,2b,2c – there is a huge difference in survival stats.  Take stage 1b – has somewhere in the range of 90% survival stats.  That means ~10% have melanoma come back.  So you say you read about this all the time.  You don't read about the 90% because they aren't hanging around a melanoma bulletin board anymore.  You see the exceptions only – the 10%.  It looks like 100% because the only ones who post are those dealing with recurrences or those who are newly diagnosed.  The others have no need to ask questions – they are living life.  Bulletin boards are NOT a representative sample of the melanoma population.

      I have been on this site for 15+ years.  I cannot tell you the number of early stagers who have posted, then moved on.  I used to moderate a stage 0/1 BB and the same thing happened there – people moved on when melanoma was no longer occupying their every thought.

      Melanoma can come back – and no one is given a guarantee.  Agonizing if your own melanoma will return only makes you more anxious.  We lose our feeling of "control" and that is a struggle for everyone.  But if you're early stage and you hang around here and aren't newly diagnosed and asking questions, then you are feeding into that anxiety – and not doing yourself any favors.  Just my thoughts. 

        Kimba67
        Participant

        Beautifully said.

        Kimba67
        Participant

        Beautifully said.

        Kimba67
        Participant

        Beautifully said.

      debwray
      Participant

      Hi,

      Just like Janner says there seems to be a very small subset of melanomas that progress in spite of being thin and small when removed. Maybe in the future they will find out why- it maybe something in the genes that make these small but dangerous for certain individuals.The majority of recurrences following WLE seem to occur around the 2 year mark- and after that the risk declines…so if you are in the Melanoma club -best to attend follow up appointments and be aware that  any hard non painful lumps in the lymph nodes should be investigated.  For the majority a WLE is the end of the story.. something which is good to keep in your mind.

      debwray
      Participant

      Hi,

      Just like Janner says there seems to be a very small subset of melanomas that progress in spite of being thin and small when removed. Maybe in the future they will find out why- it maybe something in the genes that make these small but dangerous for certain individuals.The majority of recurrences following WLE seem to occur around the 2 year mark- and after that the risk declines…so if you are in the Melanoma club -best to attend follow up appointments and be aware that  any hard non painful lumps in the lymph nodes should be investigated.  For the majority a WLE is the end of the story.. something which is good to keep in your mind.

      debwray
      Participant

      Hi,

      Just like Janner says there seems to be a very small subset of melanomas that progress in spite of being thin and small when removed. Maybe in the future they will find out why- it maybe something in the genes that make these small but dangerous for certain individuals.The majority of recurrences following WLE seem to occur around the 2 year mark- and after that the risk declines…so if you are in the Melanoma club -best to attend follow up appointments and be aware that  any hard non painful lumps in the lymph nodes should be investigated.  For the majority a WLE is the end of the story.. something which is good to keep in your mind.

Viewing 5 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics