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Recent Diagnosis.

Forums General Melanoma Community Recent Diagnosis.

  • Post
    mattsterama
    Participant

      Okay here goes….Diaganosed with atypical nodular non-pigmented Melanoma on 1/13/12.  Surgery a week later with SNB, week later path came back negative.  Original in office shave biopsy showed depth of 1.85mm, however in the scope it looked to be very active at the bottom of the shave.  So assumed I would probably move to Stage II.  However the good news is the SNB came back negative and the excision showed no sign of the Melanoma, so due to depth I went back to Stage Ib.  Now my head is still spinning with the wait and see attitude that everything is telling me, d

      Okay here goes….Diaganosed with atypical nodular non-pigmented Melanoma on 1/13/12.  Surgery a week later with SNB, week later path came back negative.  Original in office shave biopsy showed depth of 1.85mm, however in the scope it looked to be very active at the bottom of the shave.  So assumed I would probably move to Stage II.  However the good news is the SNB came back negative and the excision showed no sign of the Melanoma, so due to depth I went back to Stage Ib.  Now my head is still spinning with the wait and see attitude that everything is telling me, diligent skin exams and regular checkups.  Is this it, after reading some posts I feel I have cheated and no big deal, but there is still a strong chance this thing will resurface elsewhere.  Just curious of other experiences and suggestions.  Even different health care professionals have different suggestions.  I really feel kind of crummy for asking due to many others who are fighting this disease much harder than I am.  However I know they are the ones with experience with it so I feel I have to ask, best to all and an advance thank you for any reply.

    Viewing 8 reply threads
    • Replies
        LynnLuc
        Participant

          Cheated?? I had mine removed from my neck. Was told not to worry and that they got it all. It came back in the same place and went through that all again except then then removed 5 sent.lymph nodes…all came back clear.  Told nothing to worry about, they got it all. It showed up about 8 years later as stage 4 in a lymph node by my heart and was 6.8 centimeters at its widest base…not to be a Debbie Downer, but just because they want you to wait and watch, thats exactly what it means…hopefully you won't have it show up again…but its also highly possible that years down the road that it will return- thats the nature of melanoma….don't feel cheated…feel blessed . Lynn

          LynnLuc
          Participant

            Cheated?? I had mine removed from my neck. Was told not to worry and that they got it all. It came back in the same place and went through that all again except then then removed 5 sent.lymph nodes…all came back clear.  Told nothing to worry about, they got it all. It showed up about 8 years later as stage 4 in a lymph node by my heart and was 6.8 centimeters at its widest base…not to be a Debbie Downer, but just because they want you to wait and watch, thats exactly what it means…hopefully you won't have it show up again…but its also highly possible that years down the road that it will return- thats the nature of melanoma….don't feel cheated…feel blessed . Lynn

              mattsterama
              Participant

                Cheated was a poor choice of words….I am just so used to all of the other surgeries I've had that fix things and if not what's next?  This just seems to be so arbitrary, as you are an example of.  I don't mean to belittle what you or others have gone through or are going through.  But I am sure you more than anyone understand how hard it is to wrap your mind around the wait and watch and keep your fingers crossed mindset.  Yes I do feel blessed as you stated, and yes I am hopeful, very hopeful it doesn't come back or show up somewhere else.  I understand the percentages are out there that I could die in a car crash tomorrow but these percentages feel different.  I am just simply trying to cover my bases as I am sure you did as well.  The people on here are the ones who have the experiences and have a far better understanding of what's in my head.  Thank you for your reply and I hope everything is going well for you now….actually I should ask how is or has your outcome been now?

                mattsterama
                Participant

                  Cheated was a poor choice of words….I am just so used to all of the other surgeries I've had that fix things and if not what's next?  This just seems to be so arbitrary, as you are an example of.  I don't mean to belittle what you or others have gone through or are going through.  But I am sure you more than anyone understand how hard it is to wrap your mind around the wait and watch and keep your fingers crossed mindset.  Yes I do feel blessed as you stated, and yes I am hopeful, very hopeful it doesn't come back or show up somewhere else.  I understand the percentages are out there that I could die in a car crash tomorrow but these percentages feel different.  I am just simply trying to cover my bases as I am sure you did as well.  The people on here are the ones who have the experiences and have a far better understanding of what's in my head.  Thank you for your reply and I hope everything is going well for you now….actually I should ask how is or has your outcome been now?

                  mattsterama
                  Participant

                    Cheated was a poor choice of words….I am just so used to all of the other surgeries I've had that fix things and if not what's next?  This just seems to be so arbitrary, as you are an example of.  I don't mean to belittle what you or others have gone through or are going through.  But I am sure you more than anyone understand how hard it is to wrap your mind around the wait and watch and keep your fingers crossed mindset.  Yes I do feel blessed as you stated, and yes I am hopeful, very hopeful it doesn't come back or show up somewhere else.  I understand the percentages are out there that I could die in a car crash tomorrow but these percentages feel different.  I am just simply trying to cover my bases as I am sure you did as well.  The people on here are the ones who have the experiences and have a far better understanding of what's in my head.  Thank you for your reply and I hope everything is going well for you now….actually I should ask how is or has your outcome been now?

                  LynnLuc
                  Participant

                    Cheated?? I had mine removed from my neck. Was told not to worry and that they got it all. It came back in the same place and went through that all again except then then removed 5 sent.lymph nodes…all came back clear.  Told nothing to worry about, they got it all. It showed up about 8 years later as stage 4 in a lymph node by my heart and was 6.8 centimeters at its widest base…not to be a Debbie Downer, but just because they want you to wait and watch, thats exactly what it means…hopefully you won't have it show up again…but its also highly possible that years down the road that it will return- thats the nature of melanoma….don't feel cheated…feel blessed . Lynn

                    Jamietk
                    Participant

                      The watch and wait is definitely scary and very hard to adjust to living with. But I wanted to give you something positive to hold onto while you go through the feelings that a melanoma diagnosis brings. Yes, melanoma is serious. And yes it can absolutely come back at any time. Your stage does hold a lower risk, although I've also been told that a shave biopsy means it is hard to determine the true depth. I guess it stands to reason that if you had no residual melanoma in your WLE then your original depth might be more accurate than others who have have shaves. In any event, my melanoma was 2.1 on my arm, SNB clear. That was 6 1/2 years ago. A few years back, when discussing adoption options, my Dr. wrote me a letter of recommendation for adoption that stated I only had about a 2% chance of the melanoma recurring (I go to MD Anderson). So there is hope, but be vigilent, pay attention, and see a melanoma specialist if you're not already doing so. Best wishes.

                      Jamietk
                      Participant

                        The watch and wait is definitely scary and very hard to adjust to living with. But I wanted to give you something positive to hold onto while you go through the feelings that a melanoma diagnosis brings. Yes, melanoma is serious. And yes it can absolutely come back at any time. Your stage does hold a lower risk, although I've also been told that a shave biopsy means it is hard to determine the true depth. I guess it stands to reason that if you had no residual melanoma in your WLE then your original depth might be more accurate than others who have have shaves. In any event, my melanoma was 2.1 on my arm, SNB clear. That was 6 1/2 years ago. A few years back, when discussing adoption options, my Dr. wrote me a letter of recommendation for adoption that stated I only had about a 2% chance of the melanoma recurring (I go to MD Anderson). So there is hope, but be vigilent, pay attention, and see a melanoma specialist if you're not already doing so. Best wishes.

                          mattsterama
                          Participant

                            Thank you for the reply….I definitely appreciate you taking the time to tell me your story, I am committed to being very vigilant with my check ups.  I appreciate the recommendation to see a Melanoma specialist and I will talk to my Oncologist about that, thanks again and hope all stays well with you and yours, best wishes to you as well.

                            mattsterama
                            Participant

                              Thank you for the reply….I definitely appreciate you taking the time to tell me your story, I am committed to being very vigilant with my check ups.  I appreciate the recommendation to see a Melanoma specialist and I will talk to my Oncologist about that, thanks again and hope all stays well with you and yours, best wishes to you as well.

                              mattsterama
                              Participant

                                Thank you for the reply….I definitely appreciate you taking the time to tell me your story, I am committed to being very vigilant with my check ups.  I appreciate the recommendation to see a Melanoma specialist and I will talk to my Oncologist about that, thanks again and hope all stays well with you and yours, best wishes to you as well.

                              Jamietk
                              Participant

                                The watch and wait is definitely scary and very hard to adjust to living with. But I wanted to give you something positive to hold onto while you go through the feelings that a melanoma diagnosis brings. Yes, melanoma is serious. And yes it can absolutely come back at any time. Your stage does hold a lower risk, although I've also been told that a shave biopsy means it is hard to determine the true depth. I guess it stands to reason that if you had no residual melanoma in your WLE then your original depth might be more accurate than others who have have shaves. In any event, my melanoma was 2.1 on my arm, SNB clear. That was 6 1/2 years ago. A few years back, when discussing adoption options, my Dr. wrote me a letter of recommendation for adoption that stated I only had about a 2% chance of the melanoma recurring (I go to MD Anderson). So there is hope, but be vigilent, pay attention, and see a melanoma specialist if you're not already doing so. Best wishes.

                                gtown
                                Participant

                                  hey matt,

                                  I'm in a real similiar situation, the depth of the original biopsy was 1.89 for me. I remember thinking" it's gotta be alot deeper than that I'm pretty much doomed" . I was scheduled to have the SNB and WLE at Penn, before the surgery the surgeon walked in and after looking at it stated " I think they got it all" wow , man I got up and gave the Dr the biggest hug I could give. Everything came out clear, the WLE proved his assertion correct, so I'm in a real similiar situation as you right now. I've gotten alot of good information from the discussions here and I don't hesitate to ask any question. What I have done is try to educate myself about the disease and take what steps I can to help my body fight this disease, diet changes and taking numerous supplements etc.When Iget bummed out I try to just look at the survival stats for 1b, I also remember what Janner wrote to another member, that people that don't have the disease recur usually just go on with their lifes and don't post on the boards. Anyhow, I was looking for someone in a similiar situation as mine so anytime you want to e-mail me feel free, [email protected]  . Good luck and don't hesitate to ask questions everyone here is very accomodating.  

                                    mattsterama
                                    Participant

                                      Hey Thanks for the reply.  It definitely is a scary diagnosis, period!  I do have a lot of questions, but luckily my wife works in the medical field and I have quite a few friends in the field, one of my best friends was my pathologist so I have had an advantage there in looking with him in the scope at my tissue samples.  The scariest part for me has been peoples reaction in the medical field, as some have spoke about on here, many people think that this is just nothing, just skin cancer.  They don't understand the difference or nature of melanoma.  The people around me did, so that scared the crap out of me.  I like you was ready to fight but got very lucky to find out my staging didn't change, my original shave biopsy showed major activity, mitotic index of 19, invasive tumor and looked like all the rest was leaning towards bad news.  However I came out on the fortunate end thus far.  I just struggle with watch and wait prognosis.  I also agree that the ones with good outcomes rarely come on here, so I would like to change that.  Because when you are first diagnosed you want the stories of good outcomes as well.  The cheated word I originally used came form the trials and battles that many on here are fighting, I know they wouldn't wish their disease and their fight on anyone, but it doesn't seem fair that you and I have this outcome, while they have to go through what they are going through.  I understand that could change, and I realize that, I hope it doesn't and I am sure none of them do as well.  I am realizing now that it is luck and I am lucky for now, cherish it, but I don't want to forget those who are doing battle with this beast.  So coming on here was a way to kind of do that and like you I hope to pass on words of encouragement.  Thanks for the e-mail and I'll be in touch.

                                      mattsterama
                                      Participant

                                        Hey Thanks for the reply.  It definitely is a scary diagnosis, period!  I do have a lot of questions, but luckily my wife works in the medical field and I have quite a few friends in the field, one of my best friends was my pathologist so I have had an advantage there in looking with him in the scope at my tissue samples.  The scariest part for me has been peoples reaction in the medical field, as some have spoke about on here, many people think that this is just nothing, just skin cancer.  They don't understand the difference or nature of melanoma.  The people around me did, so that scared the crap out of me.  I like you was ready to fight but got very lucky to find out my staging didn't change, my original shave biopsy showed major activity, mitotic index of 19, invasive tumor and looked like all the rest was leaning towards bad news.  However I came out on the fortunate end thus far.  I just struggle with watch and wait prognosis.  I also agree that the ones with good outcomes rarely come on here, so I would like to change that.  Because when you are first diagnosed you want the stories of good outcomes as well.  The cheated word I originally used came form the trials and battles that many on here are fighting, I know they wouldn't wish their disease and their fight on anyone, but it doesn't seem fair that you and I have this outcome, while they have to go through what they are going through.  I understand that could change, and I realize that, I hope it doesn't and I am sure none of them do as well.  I am realizing now that it is luck and I am lucky for now, cherish it, but I don't want to forget those who are doing battle with this beast.  So coming on here was a way to kind of do that and like you I hope to pass on words of encouragement.  Thanks for the e-mail and I'll be in touch.

                                        mattsterama
                                        Participant

                                          Hey Thanks for the reply.  It definitely is a scary diagnosis, period!  I do have a lot of questions, but luckily my wife works in the medical field and I have quite a few friends in the field, one of my best friends was my pathologist so I have had an advantage there in looking with him in the scope at my tissue samples.  The scariest part for me has been peoples reaction in the medical field, as some have spoke about on here, many people think that this is just nothing, just skin cancer.  They don't understand the difference or nature of melanoma.  The people around me did, so that scared the crap out of me.  I like you was ready to fight but got very lucky to find out my staging didn't change, my original shave biopsy showed major activity, mitotic index of 19, invasive tumor and looked like all the rest was leaning towards bad news.  However I came out on the fortunate end thus far.  I just struggle with watch and wait prognosis.  I also agree that the ones with good outcomes rarely come on here, so I would like to change that.  Because when you are first diagnosed you want the stories of good outcomes as well.  The cheated word I originally used came form the trials and battles that many on here are fighting, I know they wouldn't wish their disease and their fight on anyone, but it doesn't seem fair that you and I have this outcome, while they have to go through what they are going through.  I understand that could change, and I realize that, I hope it doesn't and I am sure none of them do as well.  I am realizing now that it is luck and I am lucky for now, cherish it, but I don't want to forget those who are doing battle with this beast.  So coming on here was a way to kind of do that and like you I hope to pass on words of encouragement.  Thanks for the e-mail and I'll be in touch.

                                        gtown
                                        Participant

                                          hey matt,

                                          I'm in a real similiar situation, the depth of the original biopsy was 1.89 for me. I remember thinking" it's gotta be alot deeper than that I'm pretty much doomed" . I was scheduled to have the SNB and WLE at Penn, before the surgery the surgeon walked in and after looking at it stated " I think they got it all" wow , man I got up and gave the Dr the biggest hug I could give. Everything came out clear, the WLE proved his assertion correct, so I'm in a real similiar situation as you right now. I've gotten alot of good information from the discussions here and I don't hesitate to ask any question. What I have done is try to educate myself about the disease and take what steps I can to help my body fight this disease, diet changes and taking numerous supplements etc.When Iget bummed out I try to just look at the survival stats for 1b, I also remember what Janner wrote to another member, that people that don't have the disease recur usually just go on with their lifes and don't post on the boards. Anyhow, I was looking for someone in a similiar situation as mine so anytime you want to e-mail me feel free, [email protected]  . Good luck and don't hesitate to ask questions everyone here is very accomodating.  

                                          gtown
                                          Participant

                                            hey matt,

                                            I'm in a real similiar situation, the depth of the original biopsy was 1.89 for me. I remember thinking" it's gotta be alot deeper than that I'm pretty much doomed" . I was scheduled to have the SNB and WLE at Penn, before the surgery the surgeon walked in and after looking at it stated " I think they got it all" wow , man I got up and gave the Dr the biggest hug I could give. Everything came out clear, the WLE proved his assertion correct, so I'm in a real similiar situation as you right now. I've gotten alot of good information from the discussions here and I don't hesitate to ask any question. What I have done is try to educate myself about the disease and take what steps I can to help my body fight this disease, diet changes and taking numerous supplements etc.When Iget bummed out I try to just look at the survival stats for 1b, I also remember what Janner wrote to another member, that people that don't have the disease recur usually just go on with their lifes and don't post on the boards. Anyhow, I was looking for someone in a similiar situation as mine so anytime you want to e-mail me feel free, [email protected]  . Good luck and don't hesitate to ask questions everyone here is very accomodating.  

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