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.

stage 1A low risk conflicting diagnoses

Forums Cutaneous Melanoma Community stage 1A low risk conflicting diagnoses

  • Post
    KatieB
    Participant

      I wish there was a stage 1A message board for melanoma as this post is really appropriate for people who have experience with or were diagnosed with low risk melanomas.

      I am so respectful of the people who are struggling with a life-threatening disease and this post has so little importance in comparison so I hope I am not being disrespectful by posting on this board.

      That said, I have an interesting situation and I'm grappling with how to wrap my head around it. So I'd love any insight or advice.

      I was diagnosed in April with stage 1A melanoma. The mole was removed the day after I returned from a week on a boat in the Bahamas. Unfortunately, there was no shade in the Bahamas and I didn't yet realize my risk factors so I was badly sunburned when the mole was removed. In fact, the reason given for removing the mole was that it was red. My back looked tan and I didn't mention how much sun exposure I had gotten to the doctor because I was a bit embarrassed that I had been so careless.

      Anyhow, I received a 1A diagnosis which was confirmed by a second pathologist who works with the first.

      As I was researching (or over – researching) on the Internet, I came across a number of articles which discussed overdiagnosis, and the possibility of being misdiagnosed when one has mitigating factors such as a sunburned mole. 

      Anyhow, I sent my mole off for a third opinion to a Yale pathologist who has closely studied misdiagnosis. I felt very confident that he would give me the same result as the first two, but felt it would make my head rest easier just knowing that I had explored all avenues so I could have a really competent feeling on what exactly my stage and breslow depth was.

      I just received my results and he diagnosed my mole as a severely atypical nevus, not melanoma.

      He also said that he brought the mole to conference with a group of pathologists and they all unanimously agreed that it was an atypical mole.

      I was incredibly fearful after my original diagnosis. I have three kids who need me and I felt so very fearful that I was going to miss something big in their lives: graduations, marriages, everything, because I had been so foolish and hadn't been safe in the sun.  My worry level definitely outweighed my actual risk based on my diagnosis.

      If you're still reading, here are my questions. 

      My first thought getting the recent diagnosis was one of relief. Should I be relieved?  I now have diagnoses that say both. Who do I believe? Did I have melanoma?

      Does this affect my status for future health insurance and life insurance applications? Should I do anything about that one way or the other?

      My husband says I should now just be cautious and grateful and I think that is good advice. I have obviously learned lessons about the sun and about being proactive about body scans and I plan to act as though the first diagnosis is correct in terms of getting regular skin checks and being careful in the sun. I had an extensive WLE and I am grateful that I did.

      I like thinking that my most recent diagnosis is the actual correct one…  that would definitely help my head…  I'm interested if you all think that I can trust the recent diagnosis or if you think my diagnosis is just uncertain.

      Thank you for listening. I'm sorry this is so trivial and I appreciate any thoughts that anyone has.

    Viewing 0 reply threads
    • Replies
        Julie in SoCal
        Participant

          Hello Anon,

          You're not being disrespectful at all.  This board is for everyone!!

          A few things I've noticed about this bulletin board:

          1) It does not represent the full melanoma population. People with early stage melanoma tend to come here when they are first diagnosed.  They are scared and looking for answers.  We are happy to welcome them to the community and give what answers we have.  Then, after the shock of having a melanoma diagnoses wears off and they get through the procedures, they get on with their life and don't hang out in this space (although there are some notable exceptions!).  The people who stay tend to be the ones with a later stage.

          2) Reading a slide for melanoma or severely atypical nevus is as much art as science. And it's difficult.  Getting a second or third opinion is a good idea.  Well Done!  All of this said, the treatment for severely atypical nevus or early stage melanoma is the exact same: Wide local excision to get any remaining cells that may have been left behind from the biopsy.  Also you should continue to have skin checks from a derm.  So: A question to ask yourself is does it matter if I have severely atypical nevus or melanoma?  I'll be treated the same.

          3) insurance.Yes, for some insurance companies having a melanoma dx will make a difference.  You'll have to work with each insurance.  Sorry.

          4) It sounds like your husband has given you good advice.  Yes!  You have caught this early. And in doing so you might not ever see melanoma again!  May that be so!  Do the recommended treatment, Enjoy your kids, stay sun safe and watch your skin for change.

          Shalom,

          Julie

            Sophietx
            Participant

              Congratulations on getting 2nd opinion. I had Melanoma insitu. And would love to get 2nd opinion. What place/hospital would you recommend in the US? 

        Viewing 0 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