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.

Unbelievable change of events! Request a second opinion!!

Forums General Melanoma Community Unbelievable change of events! Request a second opinion!!

  • Post
    brooke
    Participant

      There have been so many of you who have supported me through the scare of my husband's recent diagnosis. As you may know, he is a patient at Kaiser Permanente in Colorado and they are not melanoma specialits. 

      He had a WLE with sentinel node biopsy in early August. The report came back showing a Breslow depth of 1mm with a satellite lesion which categorized him as stage IIIb.

      There have been so many of you who have supported me through the scare of my husband's recent diagnosis. As you may know, he is a patient at Kaiser Permanente in Colorado and they are not melanoma specialits. 

      He had a WLE with sentinel node biopsy in early August. The report came back showing a Breslow depth of 1mm with a satellite lesion which categorized him as stage IIIb.

      I requested a copy of the pathology report and 'googled' the pathologists who read his biopsy. It appeared it was read by one general pathologist and signed off by a cytopathologist.

      I immediately reqeusted a second opinion by a dermatopathologist and pushed the issue. Somewhat reluctantly, they send the slides for a second opinion. Two weeks later, I still hadn't heard. In the mean time we had seen the oncologist, enrolled in a clinical trial and prepared for a long road with melanoma.

      Just late last week, we got the call from the surgeon who was shocked. The new path report, read by not only one, but 4 dermatopathologists, indicated that the 'satellite lesion' was a benign nevi (normal mole), and the new Breslow depth was actually 0.6mm.

      As you can imagine, the shock and excitement I experienced were beyond belief!  Both the surgeon and the oncologist had never seen this before. Of course, they are asking for a third opinion now or as the oncologist called it, a tie breaker.

      We are remaining cautiously optimistic that he may only be Stage I.

      I wanted to post this to urge everyone to get a copy of your pathology reports, be sure a dermatopathologist has read it and if not, insist that it is. It could be life changing! Also, as everyone else mentions, go to a melanoma center as well.

      Thank you again everyone who helped me through this trying time. I know that we are more fortunate than many and I will forever be grateful to this board for all the support. 

    Viewing 18 reply threads
    • Replies
        POW
        Participant

          W-o-o-o H-o-o-o, Brooke! Hip, hip, hooray!!! smiley smiley That is fantastic news. Thank you for sharing!

          This not only confirms the importance of specialists when dealing with melanoma (a notoriously tricky disease), but it also underlines the importance of BEING YOUR OWN HEALTH ADVOCATE. The vast majority of people will not even attempt to read their own path report (or any other medical reports) thinking that they will never understand them. But you can learn a lot just by TRYING to read them, even if you don't understand all the details. And you can look up the qualifications of the doctor, as you did. And for any really important decision, you can request a second opinion from a specialist, which you did.

          You did GREAT!! Your husband owes you flowers and champagne, at the very least. I'd have you in my foxhole anytime.

          POW
          Participant

            W-o-o-o H-o-o-o, Brooke! Hip, hip, hooray!!! smiley smiley That is fantastic news. Thank you for sharing!

            This not only confirms the importance of specialists when dealing with melanoma (a notoriously tricky disease), but it also underlines the importance of BEING YOUR OWN HEALTH ADVOCATE. The vast majority of people will not even attempt to read their own path report (or any other medical reports) thinking that they will never understand them. But you can learn a lot just by TRYING to read them, even if you don't understand all the details. And you can look up the qualifications of the doctor, as you did. And for any really important decision, you can request a second opinion from a specialist, which you did.

            You did GREAT!! Your husband owes you flowers and champagne, at the very least. I'd have you in my foxhole anytime.

            POW
            Participant

              W-o-o-o H-o-o-o, Brooke! Hip, hip, hooray!!! smiley smiley That is fantastic news. Thank you for sharing!

              This not only confirms the importance of specialists when dealing with melanoma (a notoriously tricky disease), but it also underlines the importance of BEING YOUR OWN HEALTH ADVOCATE. The vast majority of people will not even attempt to read their own path report (or any other medical reports) thinking that they will never understand them. But you can learn a lot just by TRYING to read them, even if you don't understand all the details. And you can look up the qualifications of the doctor, as you did. And for any really important decision, you can request a second opinion from a specialist, which you did.

              You did GREAT!! Your husband owes you flowers and champagne, at the very least. I'd have you in my foxhole anytime.

              Janner
              Participant

                Good news!

                The only thing that concerns me is that the original path didn't go to a dermpath to begin with.  Why is the surgeon sending tissue to a general path?  And if you have a biopsy in the future, are you going to have to request it be sent to a dermpath?  I'd prefer my surgeon to have a good working relationship with the dermpath and not just some anonymous pathologist.  And I'd also hope my doctor would think enough of me to make sure the tissue went to the right specialist.  Just a comment and a question you may need to ask the doctors.

                Best wishes,

                Janner

                Janner
                Participant

                  Good news!

                  The only thing that concerns me is that the original path didn't go to a dermpath to begin with.  Why is the surgeon sending tissue to a general path?  And if you have a biopsy in the future, are you going to have to request it be sent to a dermpath?  I'd prefer my surgeon to have a good working relationship with the dermpath and not just some anonymous pathologist.  And I'd also hope my doctor would think enough of me to make sure the tissue went to the right specialist.  Just a comment and a question you may need to ask the doctors.

                  Best wishes,

                  Janner

                  Janner
                  Participant

                    Good news!

                    The only thing that concerns me is that the original path didn't go to a dermpath to begin with.  Why is the surgeon sending tissue to a general path?  And if you have a biopsy in the future, are you going to have to request it be sent to a dermpath?  I'd prefer my surgeon to have a good working relationship with the dermpath and not just some anonymous pathologist.  And I'd also hope my doctor would think enough of me to make sure the tissue went to the right specialist.  Just a comment and a question you may need to ask the doctors.

                    Best wishes,

                    Janner

                    JerryfromFauq
                    Participant

                      Very glad for ya'll. What a woman! Waiting for the tie breaker.  (now if they can rurther rudece it – WOW.

                      JerryfromFauq
                      Participant

                        Very glad for ya'll. What a woman! Waiting for the tie breaker.  (now if they can rurther rudece it – WOW.

                        JerryfromFauq
                        Participant

                          Very glad for ya'll. What a woman! Waiting for the tie breaker.  (now if they can rurther rudece it – WOW.

                          hbecker
                          Participant

                            Brooke, I'm so relieved for you!! Congrats on fighting the most important battle and winning!

                            ~Hazel

                            hbecker
                            Participant

                              Brooke, I'm so relieved for you!! Congrats on fighting the most important battle and winning!

                              ~Hazel

                              hbecker
                              Participant

                                Brooke, I'm so relieved for you!! Congrats on fighting the most important battle and winning!

                                ~Hazel

                                POW
                                Participant

                                  By the way, just the other day JerryfromFauq posted a link to an article about a melanoma diagnostic test called "The DecisionDx-Melanoma" test. Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/non-metastatic-melanoma-patients-high-risk-recurre

                                  This might be a situation where that type of test (called a "FISH" test) could be very useful. 

                                  POW
                                  Participant

                                    By the way, just the other day JerryfromFauq posted a link to an article about a melanoma diagnostic test called "The DecisionDx-Melanoma" test. Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/non-metastatic-melanoma-patients-high-risk-recurre

                                    This might be a situation where that type of test (called a "FISH" test) could be very useful. 

                                    POW
                                    Participant

                                      By the way, just the other day JerryfromFauq posted a link to an article about a melanoma diagnostic test called "The DecisionDx-Melanoma" test. Check it out at http://www.melanoma.org/community/mpip-melanoma-patients-information-page/non-metastatic-melanoma-patients-high-risk-recurre

                                      This might be a situation where that type of test (called a "FISH" test) could be very useful. 

                                      JC
                                      Participant

                                        I thought that test was to distinguish a benign nevus from a melanoma (for instance, with spitz nevi).  It sounds like the discrepancy here is with the satellite lesion, not the primary melanoma.  Although, maybe you're saying to utilize this FISH assay with the satellite lesion to discriminate?

                                        JC
                                        Participant

                                          I thought that test was to distinguish a benign nevus from a melanoma (for instance, with spitz nevi).  It sounds like the discrepancy here is with the satellite lesion, not the primary melanoma.  Although, maybe you're saying to utilize this FISH assay with the satellite lesion to discriminate?

                                          JC
                                          Participant

                                            I thought that test was to distinguish a benign nevus from a melanoma (for instance, with spitz nevi).  It sounds like the discrepancy here is with the satellite lesion, not the primary melanoma.  Although, maybe you're saying to utilize this FISH assay with the satellite lesion to discriminate?

                                            POW
                                            Participant

                                              Right. If the ambiguity concerns the satellite lesion, the FISH test might be able to resolve the issue.

                                              POW
                                              Participant

                                                Right. If the ambiguity concerns the satellite lesion, the FISH test might be able to resolve the issue.

                                                POW
                                                Participant

                                                  Right. If the ambiguity concerns the satellite lesion, the FISH test might be able to resolve the issue.

                                              Viewing 18 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