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Informed Yesterday

Forums General Melanoma Community Informed Yesterday

  • Post
    Resilient4Life
    Participant

      The letter from my dermatologist arrived after a week of alternating between minimization and cold fear. The introductory sentence was brief: "I am writing to inform you of your results:" 1. Malignant melanoma on upper left arm. A business card was enclosed with the name of a general surgeon with the advice to call the office and schedule removal. That's it.

      I immediately started searching for information; what is it, who has it, how does it develop, how to cope. Now I wonder what I can do next, besides removal. Can I go to the Dr's office, who was new to me and I've only seen once, and ask for the lab report? Would I get it? Should I have expected more? It doesn't seem like I could have gotten less.

      I'm absolutely new here, and hope I'll find some answers. Thanks for reading and responding.

    Viewing 5 reply threads
    • Replies
        Janner
        Participant

          Call the doctor's office and ASK QUESTIONS.  Yes, you should be able to get a copy of the pathology report from them.  I agree, I doubt you could get less feedback than you have, but call and make waves and ask questions.  Specifically over the phone, I'd want to know DEPTH, MITOSIS, ULCERATION.  (These are keys to initial staging).   I'd ask if this was read by a dermatopathologist (skin pathologist).  Then I'd ask why I couldn't have been notified by phone so I could ask questions.  This would piss me off big time and I don't blame you for being upset with NO answers.

          Janner
          Participant

            Call the doctor's office and ASK QUESTIONS.  Yes, you should be able to get a copy of the pathology report from them.  I agree, I doubt you could get less feedback than you have, but call and make waves and ask questions.  Specifically over the phone, I'd want to know DEPTH, MITOSIS, ULCERATION.  (These are keys to initial staging).   I'd ask if this was read by a dermatopathologist (skin pathologist).  Then I'd ask why I couldn't have been notified by phone so I could ask questions.  This would piss me off big time and I don't blame you for being upset with NO answers.

            Janner
            Participant

              Call the doctor's office and ASK QUESTIONS.  Yes, you should be able to get a copy of the pathology report from them.  I agree, I doubt you could get less feedback than you have, but call and make waves and ask questions.  Specifically over the phone, I'd want to know DEPTH, MITOSIS, ULCERATION.  (These are keys to initial staging).   I'd ask if this was read by a dermatopathologist (skin pathologist).  Then I'd ask why I couldn't have been notified by phone so I could ask questions.  This would piss me off big time and I don't blame you for being upset with NO answers.

                Resilient4Life
                Participant

                  Janner, thank you very, very much for your response! Yes, I called and spoke with the office manager, who seemed confused about why I was calling. She tried to pass it off as someone else's problem. Eventually, I managed to get her to commit that she would mail me out a copy of the lab. The lab was not even sent to my Primary Care, who referred me. I will be switching dermatology offices, since they standard of care doesn't seem to be very high there.

                  I ended up being seen at my clinic by nurse at my request this afternoon to look at the biopsy site to determine whether it was "normal". Although she admitted she didn't have a lot of experience in this area, her opinion was it was acceptable. My complaint was it seemed to be increasing in size, and the edges, which previously were not red, now were. I was told that the staging was done by the surgeon, because you can't stage by sight alone. In absence of the path report, we are all in the dark.

                  I will definitely go over the report in depth and I thank you for bringing to my attention the credentials of the interpreting person. I also appreicate knowing things to ask about. Going from zero knowledge to a tiny bit of literacy in this issue in 24 hours looks kind of steep! Out of all the sites I've looked at, none had those words depth, mitosis and ulceration together.

                  I posted this anonymously, but I actually have a profile. In it, I identify myself as deaf/hearing impaired. The tricky part of communication is having to use a third party over the internet to make calls. I call out, but people who call me get a Google voice number, which is analyzed by voice recognition software, and accuracy is 50% or less. That's why the office couldn't call me. I asked them for a letter instead.

                  Resilient4Life
                  Participant

                    Janner, thank you very, very much for your response! Yes, I called and spoke with the office manager, who seemed confused about why I was calling. She tried to pass it off as someone else's problem. Eventually, I managed to get her to commit that she would mail me out a copy of the lab. The lab was not even sent to my Primary Care, who referred me. I will be switching dermatology offices, since they standard of care doesn't seem to be very high there.

                    I ended up being seen at my clinic by nurse at my request this afternoon to look at the biopsy site to determine whether it was "normal". Although she admitted she didn't have a lot of experience in this area, her opinion was it was acceptable. My complaint was it seemed to be increasing in size, and the edges, which previously were not red, now were. I was told that the staging was done by the surgeon, because you can't stage by sight alone. In absence of the path report, we are all in the dark.

                    I will definitely go over the report in depth and I thank you for bringing to my attention the credentials of the interpreting person. I also appreicate knowing things to ask about. Going from zero knowledge to a tiny bit of literacy in this issue in 24 hours looks kind of steep! Out of all the sites I've looked at, none had those words depth, mitosis and ulceration together.

                    I posted this anonymously, but I actually have a profile. In it, I identify myself as deaf/hearing impaired. The tricky part of communication is having to use a third party over the internet to make calls. I call out, but people who call me get a Google voice number, which is analyzed by voice recognition software, and accuracy is 50% or less. That's why the office couldn't call me. I asked them for a letter instead.

                    Resilient4Life
                    Participant

                      Janner, thank you very, very much for your response! Yes, I called and spoke with the office manager, who seemed confused about why I was calling. She tried to pass it off as someone else's problem. Eventually, I managed to get her to commit that she would mail me out a copy of the lab. The lab was not even sent to my Primary Care, who referred me. I will be switching dermatology offices, since they standard of care doesn't seem to be very high there.

                      I ended up being seen at my clinic by nurse at my request this afternoon to look at the biopsy site to determine whether it was "normal". Although she admitted she didn't have a lot of experience in this area, her opinion was it was acceptable. My complaint was it seemed to be increasing in size, and the edges, which previously were not red, now were. I was told that the staging was done by the surgeon, because you can't stage by sight alone. In absence of the path report, we are all in the dark.

                      I will definitely go over the report in depth and I thank you for bringing to my attention the credentials of the interpreting person. I also appreicate knowing things to ask about. Going from zero knowledge to a tiny bit of literacy in this issue in 24 hours looks kind of steep! Out of all the sites I've looked at, none had those words depth, mitosis and ulceration together.

                      I posted this anonymously, but I actually have a profile. In it, I identify myself as deaf/hearing impaired. The tricky part of communication is having to use a third party over the internet to make calls. I call out, but people who call me get a Google voice number, which is analyzed by voice recognition software, and accuracy is 50% or less. That's why the office couldn't call me. I asked them for a letter instead.

                    BrianP
                    Participant

                      Absolutely you can get a copy of the pathology report and you should.  Recommend when you do post the pertinent parts here for advice.  Janner is real good at giving guidance in this regard.  Removal is obviously in your future but you may also want to do a Sentinel Node Biopsy (SNB) prior to removal.  That will be determined by the depth of the melanoma.  Sorry you have had to come to this board but you will find it is a great wealth of information and compassion. 

                      Brian

                        Resilient4Life
                        Participant

                          Brian, thank you for your reply! I have requested the pathology report and yes, I will post because I know virtually nothing. I finally have a "referral" but it will take at least 2 business days for it to bounce back and forth between offices. I have to go look up what a Sentinel Node Biopsy is.  I'm impressed  that this site encourages self-advocacy and that people on the discussion board are caring and supportive with nuts and bolts info.  I am grateful for your advice and also Janner's. Not having any other means of learning, this looked like the best thing. Will keep you posted.

                          Resilient4Life
                          Participant

                            Brian, thank you for your reply! I have requested the pathology report and yes, I will post because I know virtually nothing. I finally have a "referral" but it will take at least 2 business days for it to bounce back and forth between offices. I have to go look up what a Sentinel Node Biopsy is.  I'm impressed  that this site encourages self-advocacy and that people on the discussion board are caring and supportive with nuts and bolts info.  I am grateful for your advice and also Janner's. Not having any other means of learning, this looked like the best thing. Will keep you posted.

                            Resilient4Life
                            Participant

                              Brian, thank you for your reply! I have requested the pathology report and yes, I will post because I know virtually nothing. I finally have a "referral" but it will take at least 2 business days for it to bounce back and forth between offices. I have to go look up what a Sentinel Node Biopsy is.  I'm impressed  that this site encourages self-advocacy and that people on the discussion board are caring and supportive with nuts and bolts info.  I am grateful for your advice and also Janner's. Not having any other means of learning, this looked like the best thing. Will keep you posted.

                            BrianP
                            Participant

                              Absolutely you can get a copy of the pathology report and you should.  Recommend when you do post the pertinent parts here for advice.  Janner is real good at giving guidance in this regard.  Removal is obviously in your future but you may also want to do a Sentinel Node Biopsy (SNB) prior to removal.  That will be determined by the depth of the melanoma.  Sorry you have had to come to this board but you will find it is a great wealth of information and compassion. 

                              Brian

                              BrianP
                              Participant

                                Absolutely you can get a copy of the pathology report and you should.  Recommend when you do post the pertinent parts here for advice.  Janner is real good at giving guidance in this regard.  Removal is obviously in your future but you may also want to do a Sentinel Node Biopsy (SNB) prior to removal.  That will be determined by the depth of the melanoma.  Sorry you have had to come to this board but you will find it is a great wealth of information and compassion. 

                                Brian

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