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Confused…Diagnosed with Stage 2 initially, then the Onc says mistake, now back to square one…

Forums Cutaneous Melanoma Community Confused…Diagnosed with Stage 2 initially, then the Onc says mistake, now back to square one…

  • Post
    Jessicaanneli
    Participant

      Hello all, please tell me this is somewhat typical, I'm scared..

      Hello all, please tell me this is somewhat typical, I'm scared..

      First off, I am high risk for skin-cancer, which is the reason why I visit the Derm every 2 or 3 years for check-ups. I was born in Sweden, of Swedish parents. I'm a 36 year old female, blue eyes, blonde hair, fair skin…I probably have 100+ moles on my body. Spent 5 years in West Africa age 4-9, suffered a few severe sunburns, according to mom. I've been living in the Southern US for the last 20 years. Texas and Mississippi. Never been a tanner but I spend much time outside..Either way, I realize I am a high risk person. Never have had a problem until now.

      June 6th I went to a Derm, picked one who is known to specialize in skin-cancer. He spotted a very dark mole on the back of my ear, I had seen it last year but didn't think much of it, I just thought 'wow that's ugly' but I've always hated all these ugly moles on my body. The derm regularly removes them prophylactically. So a week later I got a lovely call from the PA at the Derm-office, she told me the mole on my ear was a 2mm, stage 2 Malignant Melanoma. They refered me to MD Anderson. What the…? I know nothing about Melanoma except its dangerous. 

      So I went to my appointment at Anderson, to meet the doctor and have a Sentinel Lymph Biopsy. Well, the first doctor comes in, starts talking about having part of my ear removed. He was, by the way, very unprofessional, I don't think he had even reviewed my records before coming in the room…to make it worse, he basically told me having one ear smaller than the other is really no big deal since " you never really see both ears of a person when you  are looking at them." Really? Wow. So now Doctor Number 2 comes in, with Doctor number 1…she proceeds to tell me that the whole thing may be a mistake and the path-report could be wrong!? At this point my head is spinning…So I ask if I need the Biopsy, she tells me that is up to me. Again. What? Who is the doctor here? I declined. So they tell me they want their people to look at the slides of my lesion and in a few days they will most likely call me and tell me the good news. Ok, great. 

      They PA called me today to tell me it will be another 2 weeks because as of right now they have established that the lesion is an 'atypical melanocytic proliferation' but they haven't made a definite diagnosis of Melanoma, yet. They want more tissue from the original lesion to make a diagnosis. What is going on here? They haven't done one test, nothing. I'm scared. Is this typical? Nothing to worry about..?

    Viewing 11 reply threads
    • Replies
        Janner
        Participant

          I can't say this is typical, but the most important thing right now is getting the correct diagnosis.  Having more tissue taken so they can make a better diagnosis sounds like a good thing.  If this isn't melanoma, you don't want to be treated for it.  And if it is, it is best to be sure.  MD Anderson sees a lot of melanoma so their pathologists are well versed.  However, not all lesions are "cut and dried" melanoma or benign.  There are "atypical" or "dysplastic" moles that aren't normal, but not cancer either.  It sounds like it is possible that your lesion might meet this description.  Until you get that final diagnosis, however, it's hard for us to give you any concrete advise.  I will say that if you do not like the doctor's advise or attitude, I'd find another.  You want someone you feel comfortable with!  But I'd probably proceed with the pathology at MD Anderson for now because it is important that been done by experienced pathologists. Then if you prefer to deal with different doctors, I'd pursue that route.

          Best wishes,

          Janner

          Janner
          Participant

            I can't say this is typical, but the most important thing right now is getting the correct diagnosis.  Having more tissue taken so they can make a better diagnosis sounds like a good thing.  If this isn't melanoma, you don't want to be treated for it.  And if it is, it is best to be sure.  MD Anderson sees a lot of melanoma so their pathologists are well versed.  However, not all lesions are "cut and dried" melanoma or benign.  There are "atypical" or "dysplastic" moles that aren't normal, but not cancer either.  It sounds like it is possible that your lesion might meet this description.  Until you get that final diagnosis, however, it's hard for us to give you any concrete advise.  I will say that if you do not like the doctor's advise or attitude, I'd find another.  You want someone you feel comfortable with!  But I'd probably proceed with the pathology at MD Anderson for now because it is important that been done by experienced pathologists. Then if you prefer to deal with different doctors, I'd pursue that route.

            Best wishes,

            Janner

            Janner
            Participant

              I can't say this is typical, but the most important thing right now is getting the correct diagnosis.  Having more tissue taken so they can make a better diagnosis sounds like a good thing.  If this isn't melanoma, you don't want to be treated for it.  And if it is, it is best to be sure.  MD Anderson sees a lot of melanoma so their pathologists are well versed.  However, not all lesions are "cut and dried" melanoma or benign.  There are "atypical" or "dysplastic" moles that aren't normal, but not cancer either.  It sounds like it is possible that your lesion might meet this description.  Until you get that final diagnosis, however, it's hard for us to give you any concrete advise.  I will say that if you do not like the doctor's advise or attitude, I'd find another.  You want someone you feel comfortable with!  But I'd probably proceed with the pathology at MD Anderson for now because it is important that been done by experienced pathologists. Then if you prefer to deal with different doctors, I'd pursue that route.

              Best wishes,

              Janner

              mlbjab
              Participant

                Hi,

                I think you should have your path report sent to Dr Mihm for another opinnion, he specializes in this type of proliferation. 

                 

                  mlbjab
                  Participant

                    Oops, I forgot to add that they it is probably MELTUMP.  You can google it.

                    mlbjab
                    Participant

                      Oops, I forgot to add that they it is probably MELTUMP.  You can google it.

                      mlbjab
                      Participant

                        Oops, I forgot to add that they it is probably MELTUMP.  You can google it.

                      mlbjab
                      Participant

                        Hi,

                        I think you should have your path report sent to Dr Mihm for another opinnion, he specializes in this type of proliferation. 

                         

                        mlbjab
                        Participant

                          Hi,

                          I think you should have your path report sent to Dr Mihm for another opinnion, he specializes in this type of proliferation. 

                           

                          Jessicaanneli
                          Participant

                            Thanks for all of your advice guys. 

                            Guess I'm just freaking quite a bit. I've always been a very healthy person. Hardly any visits to the doctor, always the one taking care of everyone else both personally and professioanlly (I actually am a Registered Nurse, but no experience with Oncology). Actually being the patient is very unfamiliar to me. Especially when it comes to cancer. 

                            Another reason for mine being extra-worried is the appearance of some other symptoms I started having well before the Dermatologist called me with this disturbing news. Mainly fatigue, night-sweats and weightloss (30+ pounds), after a lifetime struggle with keeping my weight down…I thought these were Thyroid issues or possibly TB. Asked my regular doc to check me out, everything checks fine. No explanation. So, OFCOURSE I was freaking out even more about this right…?

                            I also feel my Derm has very little interest in me and I still, after 20 years in this country, have a hard time comprehending the lack of compassion that many of the physicians here have. I have not had one phonecall from my Dermatologists office to check up on me or follow up, even though I have this new diagnosis. That in itself makes it very difficult for me to trust any of the doctors in my "healthcare team"…

                            Either way, I appreciate the input, and I shall just wait patiently for the new results…

                            Jessicaanneli
                            Participant

                              Thanks for all of your advice guys. 

                              Guess I'm just freaking quite a bit. I've always been a very healthy person. Hardly any visits to the doctor, always the one taking care of everyone else both personally and professioanlly (I actually am a Registered Nurse, but no experience with Oncology). Actually being the patient is very unfamiliar to me. Especially when it comes to cancer. 

                              Another reason for mine being extra-worried is the appearance of some other symptoms I started having well before the Dermatologist called me with this disturbing news. Mainly fatigue, night-sweats and weightloss (30+ pounds), after a lifetime struggle with keeping my weight down…I thought these were Thyroid issues or possibly TB. Asked my regular doc to check me out, everything checks fine. No explanation. So, OFCOURSE I was freaking out even more about this right…?

                              I also feel my Derm has very little interest in me and I still, after 20 years in this country, have a hard time comprehending the lack of compassion that many of the physicians here have. I have not had one phonecall from my Dermatologists office to check up on me or follow up, even though I have this new diagnosis. That in itself makes it very difficult for me to trust any of the doctors in my "healthcare team"…

                              Either way, I appreciate the input, and I shall just wait patiently for the new results…

                              Jessicaanneli
                              Participant

                                Thanks for all of your advice guys. 

                                Guess I'm just freaking quite a bit. I've always been a very healthy person. Hardly any visits to the doctor, always the one taking care of everyone else both personally and professioanlly (I actually am a Registered Nurse, but no experience with Oncology). Actually being the patient is very unfamiliar to me. Especially when it comes to cancer. 

                                Another reason for mine being extra-worried is the appearance of some other symptoms I started having well before the Dermatologist called me with this disturbing news. Mainly fatigue, night-sweats and weightloss (30+ pounds), after a lifetime struggle with keeping my weight down…I thought these were Thyroid issues or possibly TB. Asked my regular doc to check me out, everything checks fine. No explanation. So, OFCOURSE I was freaking out even more about this right…?

                                I also feel my Derm has very little interest in me and I still, after 20 years in this country, have a hard time comprehending the lack of compassion that many of the physicians here have. I have not had one phonecall from my Dermatologists office to check up on me or follow up, even though I have this new diagnosis. That in itself makes it very difficult for me to trust any of the doctors in my "healthcare team"…

                                Either way, I appreciate the input, and I shall just wait patiently for the new results…

                                Jamietk
                                Participant

                                  Sorry you're dealing with this. Nothing about melanoma is good. I have been a patient at MD anderson for 7 years now and I experienced something similar with my pathology. The surgeon who removed my melanoma at home (I live 750 miles away from MD Anderson in Houston), had to reschedule my follow-up twice because the local pathologists had a hard time determining if it was melanoma. They decided it was. I then went to MD Anderson where they performed their own pathology. This is very common for them to do their own pathology, I think they always do so. They too had a hard time determining if it was melanoma. They were hosting a conference at the time and my slides were reviewed at the conference. So all in all, I had numerous pathologists in 2 different cities who had extreme difficulty in determining if it was melanoma. I would not let it concern you that they are taking time to ensure a proper diagnosis. It is a good thing and doesn't mean they don't know what they are doing. Quite the opposite. They are one of the best melanoma centers in the World. Now if you are not comfortable with your particular Dr then you always have the right to ask for someone else. I will pass along something someone once said to me though. I think it was someone on mpip as a matter of fact. When it comes to your health, especially a life threatening disease, do you want someone who is nice, or someone who knows what they're doing? I am one who normally does take exception to healthcare providers who have no compassion. But after having melanoma, I have decided that as long as they are good at what they do, that's all I care about. And I know sometimes there are many doctors I have (for multiple health issues) that come from a different culture than me and I often think they come across rude, when in reality, I think there are just cultural differences. Just my two cents worth. What you have experienced so far in regards to making sure you are diagnosed properly, does sound like proper protocol and very similar to what I experienced. Good luck to you.

                                  Jamietk
                                  Participant

                                    Sorry you're dealing with this. Nothing about melanoma is good. I have been a patient at MD anderson for 7 years now and I experienced something similar with my pathology. The surgeon who removed my melanoma at home (I live 750 miles away from MD Anderson in Houston), had to reschedule my follow-up twice because the local pathologists had a hard time determining if it was melanoma. They decided it was. I then went to MD Anderson where they performed their own pathology. This is very common for them to do their own pathology, I think they always do so. They too had a hard time determining if it was melanoma. They were hosting a conference at the time and my slides were reviewed at the conference. So all in all, I had numerous pathologists in 2 different cities who had extreme difficulty in determining if it was melanoma. I would not let it concern you that they are taking time to ensure a proper diagnosis. It is a good thing and doesn't mean they don't know what they are doing. Quite the opposite. They are one of the best melanoma centers in the World. Now if you are not comfortable with your particular Dr then you always have the right to ask for someone else. I will pass along something someone once said to me though. I think it was someone on mpip as a matter of fact. When it comes to your health, especially a life threatening disease, do you want someone who is nice, or someone who knows what they're doing? I am one who normally does take exception to healthcare providers who have no compassion. But after having melanoma, I have decided that as long as they are good at what they do, that's all I care about. And I know sometimes there are many doctors I have (for multiple health issues) that come from a different culture than me and I often think they come across rude, when in reality, I think there are just cultural differences. Just my two cents worth. What you have experienced so far in regards to making sure you are diagnosed properly, does sound like proper protocol and very similar to what I experienced. Good luck to you.

                                    Jamietk
                                    Participant

                                      Sorry you're dealing with this. Nothing about melanoma is good. I have been a patient at MD anderson for 7 years now and I experienced something similar with my pathology. The surgeon who removed my melanoma at home (I live 750 miles away from MD Anderson in Houston), had to reschedule my follow-up twice because the local pathologists had a hard time determining if it was melanoma. They decided it was. I then went to MD Anderson where they performed their own pathology. This is very common for them to do their own pathology, I think they always do so. They too had a hard time determining if it was melanoma. They were hosting a conference at the time and my slides were reviewed at the conference. So all in all, I had numerous pathologists in 2 different cities who had extreme difficulty in determining if it was melanoma. I would not let it concern you that they are taking time to ensure a proper diagnosis. It is a good thing and doesn't mean they don't know what they are doing. Quite the opposite. They are one of the best melanoma centers in the World. Now if you are not comfortable with your particular Dr then you always have the right to ask for someone else. I will pass along something someone once said to me though. I think it was someone on mpip as a matter of fact. When it comes to your health, especially a life threatening disease, do you want someone who is nice, or someone who knows what they're doing? I am one who normally does take exception to healthcare providers who have no compassion. But after having melanoma, I have decided that as long as they are good at what they do, that's all I care about. And I know sometimes there are many doctors I have (for multiple health issues) that come from a different culture than me and I often think they come across rude, when in reality, I think there are just cultural differences. Just my two cents worth. What you have experienced so far in regards to making sure you are diagnosed properly, does sound like proper protocol and very similar to what I experienced. Good luck to you.

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