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Trying to Calm Down – Newly Diagnosed

Forums General Melanoma Community Trying to Calm Down – Newly Diagnosed

  • Post
    ENaggle29
    Participant

      First off, researching something when you get diagnosed is not the way to handle things, but unfortunately, it is what I am having to do.  This is going to be my first post, and probably my most frightening, not because I found out I have Melanoma, but because I know NOTHING about what I am about to embark on.  Sure, I've heard all about it, been scared about it, but always had this "never will it happen to me" idea stuck in my head.  But, here I am, writing about it because it is true.  Regardless on how I want to think.

      My derm is having me go to the oncologist for treatment and finding the stage.  I have been having moles removed most of my life.  This last time I went, I only had one removed from my right, middle back, and was going to have more removed later during a surgery (it was scheduled for Tuesday of next week).  That has since been cancelled and they are wanting the oncologist to take care of further removal along with plastics.  

      This is all forgein to me.  I have read through a lot of posts, but most of the new diagnosis seem to have a few answers.  Me..I have none.  The diagnosis came from left field.  I am not even sure of what questions I should ask.  Shoudl I call and try to get my appointment moved up to stop the madness going on in my head?  What do all of these words mean?  What will my treatment be like?  

      What kind of assistance can any of you help with?  Where should I start?

      Thank you all for listening to my rant and help!  I appreciate it!

    Viewing 17 reply threads
    • Replies
        Janner
        Participant

          You need to get a copy of your pathology report.  Without that, we can only give basic generalizations.  The path report won't state a stage, but if you look at all the different parts, you can determine your stage.  It tells us low risk to high risk.  People can relate based on the depth of the lesion — is it deeper or less deep than theirs.  So call and get a copy of your pathology report.  Post it here and THEN we can help you.  At the very least, you need to know the Breslow depth.  That would get us in the ballpark even though it would be the whole picture.  I have answered thousands of posts of newly diagnosed on this site over the past 13 years and I'd be happy to answer yours but I need more information from you to get started.

            ENaggle29
            Participant

              My derm advised me I can pick up my path report tomorrow, so I will have that in hand.  It will at least help me have a little more piece of mind and gather the information I will need.  Thank you, Janner.  I appreciate your willingness to assist!

              ENaggle29
              Participant

                Peace – 

                ENaggle29
                Participant

                  Peace – 

                  ENaggle29
                  Participant

                    Peace – 

                    ENaggle29
                    Participant

                      My derm advised me I can pick up my path report tomorrow, so I will have that in hand.  It will at least help me have a little more piece of mind and gather the information I will need.  Thank you, Janner.  I appreciate your willingness to assist!

                      ENaggle29
                      Participant

                        My derm advised me I can pick up my path report tomorrow, so I will have that in hand.  It will at least help me have a little more piece of mind and gather the information I will need.  Thank you, Janner.  I appreciate your willingness to assist!

                        ENaggle29
                        Participant

                          Janner – I posted some of the numbers I found from my path report below, under Jay's response.  Do you think you can come up with anything from this?  The path report is more big words and jargon than anything, which makes me irate.  

                          ENaggle29
                          Participant

                            Janner – I posted some of the numbers I found from my path report below, under Jay's response.  Do you think you can come up with anything from this?  The path report is more big words and jargon than anything, which makes me irate.  

                            ENaggle29
                            Participant

                              Janner – I posted some of the numbers I found from my path report below, under Jay's response.  Do you think you can come up with anything from this?  The path report is more big words and jargon than anything, which makes me irate.  

                            Janner
                            Participant

                              You need to get a copy of your pathology report.  Without that, we can only give basic generalizations.  The path report won't state a stage, but if you look at all the different parts, you can determine your stage.  It tells us low risk to high risk.  People can relate based on the depth of the lesion — is it deeper or less deep than theirs.  So call and get a copy of your pathology report.  Post it here and THEN we can help you.  At the very least, you need to know the Breslow depth.  That would get us in the ballpark even though it would be the whole picture.  I have answered thousands of posts of newly diagnosed on this site over the past 13 years and I'd be happy to answer yours but I need more information from you to get started.

                              Janner
                              Participant

                                You need to get a copy of your pathology report.  Without that, we can only give basic generalizations.  The path report won't state a stage, but if you look at all the different parts, you can determine your stage.  It tells us low risk to high risk.  People can relate based on the depth of the lesion — is it deeper or less deep than theirs.  So call and get a copy of your pathology report.  Post it here and THEN we can help you.  At the very least, you need to know the Breslow depth.  That would get us in the ballpark even though it would be the whole picture.  I have answered thousands of posts of newly diagnosed on this site over the past 13 years and I'd be happy to answer yours but I need more information from you to get started.

                                JC
                                Participant

                                  There should be general cancer support groups in your area.  Check with the American Cancer Society in your area.  There might be melanoma specific support groups as well.  There are a few organizations that can link you up with someone else who has a similar cancer diagnosis.  The organization I connected with is Immerman Angels.  http://www.imermanangels.org/  Sometimes it just helps to talk to someone who "gets it"

                                    ENaggle29
                                    Participant

                                      Thank you for this information!  I am going to be sure to utilize it!

                                      ENaggle29
                                      Participant

                                        Thank you for this information!  I am going to be sure to utilize it!

                                        ENaggle29
                                        Participant

                                          Thank you for this information!  I am going to be sure to utilize it!

                                        JC
                                        Participant

                                          There should be general cancer support groups in your area.  Check with the American Cancer Society in your area.  There might be melanoma specific support groups as well.  There are a few organizations that can link you up with someone else who has a similar cancer diagnosis.  The organization I connected with is Immerman Angels.  http://www.imermanangels.org/  Sometimes it just helps to talk to someone who "gets it"

                                          JC
                                          Participant

                                            There should be general cancer support groups in your area.  Check with the American Cancer Society in your area.  There might be melanoma specific support groups as well.  There are a few organizations that can link you up with someone else who has a similar cancer diagnosis.  The organization I connected with is Immerman Angels.  http://www.imermanangels.org/  Sometimes it just helps to talk to someone who "gets it"

                                            LaurenE
                                            Participant

                                              This website actually has a wonderful introduction under the 'Understand Melanoma' tab, for the 'Newly Diagnosed.' It helps guide you as to what questions you should ask and what is important to consider early on.

                                              You can't do anything until you have been staged, so I think right now, reaching out to people to support you will be really important. Take deep breaths, do yoga, go run, try to refocus your mind and keep telling yourself that there is nothing more you can do right now. Actually focusing on being active and eating healthy could fortify you for WHATEVER lies ahead! 

                                              When my dad was diagnosed with metastatic melanoma, I already started grieving his death. My mind was also racing, trying to predict the future and deal with it before it even happened. I thought this was his death sentence, and that it would be immediate. And hear I am four months later and he has no evidence of disease – that doesn't mean it won't come back, but now that I have had some time to cope and look into things, I know that there are so many options out there for treatment! More and more every year! I am so hopeful for him getting past this, but I couldn't feel that at the beginning, and I think it's important to realize that your reaction now is perfectly normal, but it's fear-based, not reality-based. You could still live forever! 🙂 sort of. You are an individual, not a statistic, so right now just take care of yourself while you are figuring out what you need to know.

                                              I am very sorry you were diagnosed. It's miserable – but it doesn't have to beat you. 🙂

                                              LaurenE
                                              Participant

                                                This website actually has a wonderful introduction under the 'Understand Melanoma' tab, for the 'Newly Diagnosed.' It helps guide you as to what questions you should ask and what is important to consider early on.

                                                You can't do anything until you have been staged, so I think right now, reaching out to people to support you will be really important. Take deep breaths, do yoga, go run, try to refocus your mind and keep telling yourself that there is nothing more you can do right now. Actually focusing on being active and eating healthy could fortify you for WHATEVER lies ahead! 

                                                When my dad was diagnosed with metastatic melanoma, I already started grieving his death. My mind was also racing, trying to predict the future and deal with it before it even happened. I thought this was his death sentence, and that it would be immediate. And hear I am four months later and he has no evidence of disease – that doesn't mean it won't come back, but now that I have had some time to cope and look into things, I know that there are so many options out there for treatment! More and more every year! I am so hopeful for him getting past this, but I couldn't feel that at the beginning, and I think it's important to realize that your reaction now is perfectly normal, but it's fear-based, not reality-based. You could still live forever! 🙂 sort of. You are an individual, not a statistic, so right now just take care of yourself while you are figuring out what you need to know.

                                                I am very sorry you were diagnosed. It's miserable – but it doesn't have to beat you. 🙂

                                                  ENaggle29
                                                  Participant

                                                    Right now, my reality is my fear.  The waiting game is the worst game.  I have to sit and literally wait for another 4 days to get answers.  I don't understand why or how they make that happen, but I am just going with it. 

                                                     

                                                    Thank you so much for all your thought.  I appreciate your understanding and I promise – I will not let it beat me!

                                                    ENaggle29
                                                    Participant

                                                      Right now, my reality is my fear.  The waiting game is the worst game.  I have to sit and literally wait for another 4 days to get answers.  I don't understand why or how they make that happen, but I am just going with it. 

                                                       

                                                      Thank you so much for all your thought.  I appreciate your understanding and I promise – I will not let it beat me!

                                                      ENaggle29
                                                      Participant

                                                        Right now, my reality is my fear.  The waiting game is the worst game.  I have to sit and literally wait for another 4 days to get answers.  I don't understand why or how they make that happen, but I am just going with it. 

                                                         

                                                        Thank you so much for all your thought.  I appreciate your understanding and I promise – I will not let it beat me!

                                                      LaurenE
                                                      Participant

                                                        This website actually has a wonderful introduction under the 'Understand Melanoma' tab, for the 'Newly Diagnosed.' It helps guide you as to what questions you should ask and what is important to consider early on.

                                                        You can't do anything until you have been staged, so I think right now, reaching out to people to support you will be really important. Take deep breaths, do yoga, go run, try to refocus your mind and keep telling yourself that there is nothing more you can do right now. Actually focusing on being active and eating healthy could fortify you for WHATEVER lies ahead! 

                                                        When my dad was diagnosed with metastatic melanoma, I already started grieving his death. My mind was also racing, trying to predict the future and deal with it before it even happened. I thought this was his death sentence, and that it would be immediate. And hear I am four months later and he has no evidence of disease – that doesn't mean it won't come back, but now that I have had some time to cope and look into things, I know that there are so many options out there for treatment! More and more every year! I am so hopeful for him getting past this, but I couldn't feel that at the beginning, and I think it's important to realize that your reaction now is perfectly normal, but it's fear-based, not reality-based. You could still live forever! 🙂 sort of. You are an individual, not a statistic, so right now just take care of yourself while you are figuring out what you need to know.

                                                        I am very sorry you were diagnosed. It's miserable – but it doesn't have to beat you. 🙂

                                                        arthurjedi007
                                                        Participant

                                                          Take some deep breaths. Listen to Janner. I was diagnosed from day 1 at stage 4 metasticized. That was over 15 months ago. It is wonderful yours seems to have been caught way early. I'm actually not familiar with anything above stage 4 so Janner and others will have to help. I know nothing about breslow depth and such because mine was way beyond that. So you are starting way better than I did and I'm still here. Just try to relax and believe you are going to be fine. You will do what you need to do but you will control this disease and be NED before you know it. You have come to the best place for melanoma help. It took me 5 months to find this place. I would not still be here without these people. Good luck to you.

                                                          Artie

                                                          arthurjedi007
                                                          Participant

                                                            Take some deep breaths. Listen to Janner. I was diagnosed from day 1 at stage 4 metasticized. That was over 15 months ago. It is wonderful yours seems to have been caught way early. I'm actually not familiar with anything above stage 4 so Janner and others will have to help. I know nothing about breslow depth and such because mine was way beyond that. So you are starting way better than I did and I'm still here. Just try to relax and believe you are going to be fine. You will do what you need to do but you will control this disease and be NED before you know it. You have come to the best place for melanoma help. It took me 5 months to find this place. I would not still be here without these people. Good luck to you.

                                                            Artie

                                                              ENaggle29
                                                              Participant

                                                                Thank you for the kind words, Artie.  I am trying to be calm.  I have been having more problems sleeping, but other than that, I am still processing the "C-Word".  I am happy you found this place, and I am hoping I found myself a good home with everyone.  

                                                                ENaggle29
                                                                Participant

                                                                  Thank you for the kind words, Artie.  I am trying to be calm.  I have been having more problems sleeping, but other than that, I am still processing the "C-Word".  I am happy you found this place, and I am hoping I found myself a good home with everyone.  

                                                                  ENaggle29
                                                                  Participant

                                                                    Thank you for the kind words, Artie.  I am trying to be calm.  I have been having more problems sleeping, but other than that, I am still processing the "C-Word".  I am happy you found this place, and I am hoping I found myself a good home with everyone.  

                                                                  arthurjedi007
                                                                  Participant

                                                                    Take some deep breaths. Listen to Janner. I was diagnosed from day 1 at stage 4 metasticized. That was over 15 months ago. It is wonderful yours seems to have been caught way early. I'm actually not familiar with anything above stage 4 so Janner and others will have to help. I know nothing about breslow depth and such because mine was way beyond that. So you are starting way better than I did and I'm still here. Just try to relax and believe you are going to be fine. You will do what you need to do but you will control this disease and be NED before you know it. You have come to the best place for melanoma help. It took me 5 months to find this place. I would not still be here without these people. Good luck to you.

                                                                    Artie

                                                                    Kerrid74
                                                                    Participant

                                                                      I feel ur pain.  I was blown out of the water a couple of weeks ago with a new melanoma diagnosis from a mole removed at the derm. Also.   I was a mess- I have 2 little children at home and I kept going into the bathroom and crying hysterically .  It's the worst phone call u'll ever get.    The people on this site are wonderful, very compassionate and informative.  I just had my large excision and lymph node biopsy a few days ago, and the waiting is a nitemare.  Try to keep things in perspective.  While melanoma diagnosis seems to be everywhere these days, that also means there are more and more drugs and treatments to help it.  Breathe.  Get ur path report and just go one moment at a time.  Best wishes to u.  It sounds like it was an early catch.  

                                                                      Kerrid74
                                                                      Participant

                                                                        I feel ur pain.  I was blown out of the water a couple of weeks ago with a new melanoma diagnosis from a mole removed at the derm. Also.   I was a mess- I have 2 little children at home and I kept going into the bathroom and crying hysterically .  It's the worst phone call u'll ever get.    The people on this site are wonderful, very compassionate and informative.  I just had my large excision and lymph node biopsy a few days ago, and the waiting is a nitemare.  Try to keep things in perspective.  While melanoma diagnosis seems to be everywhere these days, that also means there are more and more drugs and treatments to help it.  Breathe.  Get ur path report and just go one moment at a time.  Best wishes to u.  It sounds like it was an early catch.  

                                                                          ENaggle29
                                                                          Participant

                                                                            Thank you for the kind words!  I am hoping it was an early catch.  My last removal was in April of 2009, and that is also the last time I went to the derm (yes, my fault on that).  I answered below some of the "answers" i got from my path report, if you want to take a look and see if you can come up with anything?  I know we aren't doctors, but not getting any answers and being patient with the "process" is not helping me one bit!

                                                                            ENaggle29
                                                                            Participant

                                                                              Thank you for the kind words!  I am hoping it was an early catch.  My last removal was in April of 2009, and that is also the last time I went to the derm (yes, my fault on that).  I answered below some of the "answers" i got from my path report, if you want to take a look and see if you can come up with anything?  I know we aren't doctors, but not getting any answers and being patient with the "process" is not helping me one bit!

                                                                              ENaggle29
                                                                              Participant

                                                                                Thank you for the kind words!  I am hoping it was an early catch.  My last removal was in April of 2009, and that is also the last time I went to the derm (yes, my fault on that).  I answered below some of the "answers" i got from my path report, if you want to take a look and see if you can come up with anything?  I know we aren't doctors, but not getting any answers and being patient with the "process" is not helping me one bit!

                                                                              Kerrid74
                                                                              Participant

                                                                                I feel ur pain.  I was blown out of the water a couple of weeks ago with a new melanoma diagnosis from a mole removed at the derm. Also.   I was a mess- I have 2 little children at home and I kept going into the bathroom and crying hysterically .  It's the worst phone call u'll ever get.    The people on this site are wonderful, very compassionate and informative.  I just had my large excision and lymph node biopsy a few days ago, and the waiting is a nitemare.  Try to keep things in perspective.  While melanoma diagnosis seems to be everywhere these days, that also means there are more and more drugs and treatments to help it.  Breathe.  Get ur path report and just go one moment at a time.  Best wishes to u.  It sounds like it was an early catch.  

                                                                                stayhealthy6
                                                                                Participant

                                                                                  Relax you are in good hands. I hope the best for you! I had the same feeling that something like Melanoma would never happen to me but May 2005 I had a Stage 1A diagnosis. Now, be positive, as of my last check-up by my derm 2 days ago I am fine. And I feel better than ever so again just be vigilant and careful.

                                                                                  Do you have any idea what the clark level and depth of your melanoma is?

                                                                                   

                                                                                  Jay

                                                                                  stayhealthy6
                                                                                  Participant

                                                                                    Relax you are in good hands. I hope the best for you! I had the same feeling that something like Melanoma would never happen to me but May 2005 I had a Stage 1A diagnosis. Now, be positive, as of my last check-up by my derm 2 days ago I am fine. And I feel better than ever so again just be vigilant and careful.

                                                                                    Do you have any idea what the clark level and depth of your melanoma is?

                                                                                     

                                                                                    Jay

                                                                                    stayhealthy6
                                                                                    Participant

                                                                                      Relax you are in good hands. I hope the best for you! I had the same feeling that something like Melanoma would never happen to me but May 2005 I had a Stage 1A diagnosis. Now, be positive, as of my last check-up by my derm 2 days ago I am fine. And I feel better than ever so again just be vigilant and careful.

                                                                                      Do you have any idea what the clark level and depth of your melanoma is?

                                                                                       

                                                                                      Jay

                                                                                        ENaggle29
                                                                                        Participant

                                                                                          Thank you Jay.  I don't have a stage.  I found out from my path that my derm does not test what is "absolute necessary" for staging (which I don't like.  I will be staged on Wednesday with my Melanoma Center I am going to.  I will then decide if I will stay where I am or seek alternate treatment in a larger city.  They did not get the "whole area" out.  I can tell that because it says "peripheral margins involved".  And my mitotic rate is at least 1 per square milimeter.  My depth of invasion as we stand is 1.8 mm.  It is in my mid-back.  So, that area scares the shit out of me.  

                                                                                          I am hoping to get more answers Wednesday, as I am not even sure what to expect right now.  I am being told so many different things, and I'm just trying to keep my brain clear.  I have bounced around from the very good outcomes, to the decent outcomes, to the not so decent outcomes.  I keep telling myself "if it is bad they would of done something with me by this point".  

                                                                                          Carlos P
                                                                                          Participant

                                                                                            I am in the same boat as you. I had a mole removed 4 weeks ago and found out last Friday it was melanoma. This is all new to me and I  am also trying to learn more about it. I am waiting for an appointment with a plastic surgeon. I will get a copy of my pathilogy report as others have recommended and share it with hopes to get some direction from anyone that hs gone down this road before,

                                                                                            Carlos P
                                                                                            Participant

                                                                                              I am in the same boat as you. I had a mole removed 4 weeks ago and found out last Friday it was melanoma. This is all new to me and I  am also trying to learn more about it. I am waiting for an appointment with a plastic surgeon. I will get a copy of my pathilogy report as others have recommended and share it with hopes to get some direction from anyone that hs gone down this road before,

                                                                                              Carlos P
                                                                                              Participant

                                                                                                I am in the same boat as you. I had a mole removed 4 weeks ago and found out last Friday it was melanoma. This is all new to me and I  am also trying to learn more about it. I am waiting for an appointment with a plastic surgeon. I will get a copy of my pathilogy report as others have recommended and share it with hopes to get some direction from anyone that hs gone down this road before,

                                                                                                ENaggle29
                                                                                                Participant

                                                                                                  Thank you Jay.  I don't have a stage.  I found out from my path that my derm does not test what is "absolute necessary" for staging (which I don't like.  I will be staged on Wednesday with my Melanoma Center I am going to.  I will then decide if I will stay where I am or seek alternate treatment in a larger city.  They did not get the "whole area" out.  I can tell that because it says "peripheral margins involved".  And my mitotic rate is at least 1 per square milimeter.  My depth of invasion as we stand is 1.8 mm.  It is in my mid-back.  So, that area scares the shit out of me.  

                                                                                                  I am hoping to get more answers Wednesday, as I am not even sure what to expect right now.  I am being told so many different things, and I'm just trying to keep my brain clear.  I have bounced around from the very good outcomes, to the decent outcomes, to the not so decent outcomes.  I keep telling myself "if it is bad they would of done something with me by this point".  

                                                                                                  ENaggle29
                                                                                                  Participant

                                                                                                    Thank you Jay.  I don't have a stage.  I found out from my path that my derm does not test what is "absolute necessary" for staging (which I don't like.  I will be staged on Wednesday with my Melanoma Center I am going to.  I will then decide if I will stay where I am or seek alternate treatment in a larger city.  They did not get the "whole area" out.  I can tell that because it says "peripheral margins involved".  And my mitotic rate is at least 1 per square milimeter.  My depth of invasion as we stand is 1.8 mm.  It is in my mid-back.  So, that area scares the shit out of me.  

                                                                                                    I am hoping to get more answers Wednesday, as I am not even sure what to expect right now.  I am being told so many different things, and I'm just trying to keep my brain clear.  I have bounced around from the very good outcomes, to the decent outcomes, to the not so decent outcomes.  I keep telling myself "if it is bad they would of done something with me by this point".  

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