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New here and need advice/support

Forums General Melanoma Community New here and need advice/support

  • Post
    Sharona19
    Participant
      Hello, my name is Sharon and was diagnosed with invasive nodular melanoma 5/7/12 and am currently recovering from a WLE with a full thickness skin graft on my left ankle and SLNB from 6/5/12. My margins are clear and the three nodes taken show clear as well. The primary tumor was 1.79mm. I see the general surgeon Tuesday for a wound check and to go over my pathology report. What can I expect as far as the next step in treatment? The surgeon mentioned that I might be placed in a clinical trial.

      Hello, my name is Sharon and was diagnosed with invasive nodular melanoma 5/7/12 and am currently recovering from a WLE with a full thickness skin graft on my left ankle and SLNB from 6/5/12. My margins are clear and the three nodes taken show clear as well. The primary tumor was 1.79mm. I see the general surgeon Tuesday for a wound check and to go over my pathology report. What can I expect as far as the next step in treatment? The surgeon mentioned that I might be placed in a clinical trial. My biggest question is where and how do I find information on nodular melanoma and it’s treatments and outcomes. I’ve been Googling like a crazy person but I can’t seem to find any thorough information. It all seems vague and contradictory. I just found this site and I haven’t learned how to navigate it yet. Any help would be appreciated as well as any hints to make this WLE recovery any better – it’s very painful and I’m not good at sitting.

      I thank you in advance for any help I get and I send peace to those who know the answers I need.

      Sharon

    Viewing 14 reply threads
    • Replies
        alicia
        Participant
          Hi Sharon, I was also diagnosed with invasive nodular melanoma in 2006 2.3mm with positive Lymph node. At the time there wasn’t a lot of trials and only option was interferon that my oncologist recommended so that’s what I did. I’ve also developed two primaries since my 2006 diagnosis with most recent being in 2011 stage 2. After the stage two diagnosis which was another amelanotic invasive melanoma I wasn’t offered any treatment options just watch and wait. Here is a link to my blog where I journal about my experience with this http://www.theskinimn.blogspot.com

          I hope this helps.

          Best wishes,

          Alicia

            Sharona19
            Participant
              Alicia,

              Thank you so much for the reply. I took a moment to peek at your blog too. I know I will go there often for support. I’m scared and lost right now because I know I’ve begun a very long battle. I haven’t had my total body check yet since I’m still in a cast from the WLE and skin graft. I do know that I have a few gazillion moles that will need attention. I’m glad for a place like this where I can go for support. God Bless you and your family and thank you again for reaching out to me.

              Sharon

              Sharona19
              Participant
                Alicia,

                Thank you so much for the reply. I took a moment to peek at your blog too. I know I will go there often for support. I’m scared and lost right now because I know I’ve begun a very long battle. I haven’t had my total body check yet since I’m still in a cast from the WLE and skin graft. I do know that I have a few gazillion moles that will need attention. I’m glad for a place like this where I can go for support. God Bless you and your family and thank you again for reaching out to me.

                Sharon

                Sharona19
                Participant
                  Alicia,

                  Thank you so much for the reply. I took a moment to peek at your blog too. I know I will go there often for support. I’m scared and lost right now because I know I’ve begun a very long battle. I haven’t had my total body check yet since I’m still in a cast from the WLE and skin graft. I do know that I have a few gazillion moles that will need attention. I’m glad for a place like this where I can go for support. God Bless you and your family and thank you again for reaching out to me.

                  Sharon

                alicia
                Participant
                  Hi Sharon, I was also diagnosed with invasive nodular melanoma in 2006 2.3mm with positive Lymph node. At the time there wasn’t a lot of trials and only option was interferon that my oncologist recommended so that’s what I did. I’ve also developed two primaries since my 2006 diagnosis with most recent being in 2011 stage 2. After the stage two diagnosis which was another amelanotic invasive melanoma I wasn’t offered any treatment options just watch and wait. Here is a link to my blog where I journal about my experience with this http://www.theskinimn.blogspot.com

                  I hope this helps.

                  Best wishes,

                  Alicia

                  alicia
                  Participant
                    Hi Sharon, I was also diagnosed with invasive nodular melanoma in 2006 2.3mm with positive Lymph node. At the time there wasn’t a lot of trials and only option was interferon that my oncologist recommended so that’s what I did. I’ve also developed two primaries since my 2006 diagnosis with most recent being in 2011 stage 2. After the stage two diagnosis which was another amelanotic invasive melanoma I wasn’t offered any treatment options just watch and wait. Here is a link to my blog where I journal about my experience with this http://www.theskinimn.blogspot.com

                    I hope this helps.

                    Best wishes,

                    Alicia

                    LynnLuc
                    Participant

                      Once you know your stage etc, you could also check out http://www.cancer.gov for clinical trials. You can also ask the docs who know about melanoma at http://talkabouthealth.com/

                      LynnLuc
                      Participant

                        Once you know your stage etc, you could also check out http://www.cancer.gov for clinical trials. You can also ask the docs who know about melanoma at http://talkabouthealth.com/

                        LynnLuc
                        Participant

                          Once you know your stage etc, you could also check out http://www.cancer.gov for clinical trials. You can also ask the docs who know about melanoma at http://talkabouthealth.com/

                          Tim–MRF
                          Guest

                            Sharon:

                            I am sorry to hear about your diagnosis, but am glad you found this community.  You will receive a lot of good information and support here.

                            As you know from your research, Nodular Melanoma tends to grow fast, and to move deeper rather than wider. Because most people delay having spots checked out and NM grows quickly, the diagnosis often occurs after the melanoma has metastasized.  Since your lymph nodes were clear that may not be the case with you, which is good.  The full body scans will help with a final determination on that.

                            Until you know for sure if you have other tumor sites, you really cannot create a treatment plan. The standard of care for people whose tumor is removed and who have no further spread of cancer is to do nothing except close observation.  Sometimes Interferon is offered, but this is a highly personal choice.  For most people Interferon creates flu-like symptoms during the year-long course of treatment.  The overall benefit of Interferon is relatively low–basically no benefit in overall survival and about 3-5% extension of progression-free survival.  For some people those odds are worth  dealing with the side effects.

                            As your doctors mentioned, several clinical trials are open for your situation–what is called, in medical terms, the "adjuvant setting".  Most of these trials involve trying to activate the immune system to "mop up" any stray tumor cells that might exist.

                            in considering whether or not to enter a trial, you may want to ask about the mitotic rate in your tumor.  Your doctor may give you that information in going over the path report.  Mitosis is the process of cell division.  The mitotic rate is a count of how many cells are actively dividing in a specific area of the tumor.  The higher the mitotic rate the more aggressive the tumor.

                            If you decide to look into clinical trials, MRF has a free service that helps identify trials for which you are qualified.  To the left of the window for this bulletin board you will see a small window that reads "Are you getting all the facts?"  If you click on that window you will be taken to a tool that asks about your specific situation, then shows trials for which you are qualified.  You will also see a toll-free number you can call to talk to someone who is trained in answering questions about trials.  We do not endorse or promote any particular trial or company, so you will receive objective information.

                            Keep us posted as you receive more information, and don't hesitate to ask more questions.

                            Tim–MRF

                            Tim–MRF
                            Guest

                              Sharon:

                              I am sorry to hear about your diagnosis, but am glad you found this community.  You will receive a lot of good information and support here.

                              As you know from your research, Nodular Melanoma tends to grow fast, and to move deeper rather than wider. Because most people delay having spots checked out and NM grows quickly, the diagnosis often occurs after the melanoma has metastasized.  Since your lymph nodes were clear that may not be the case with you, which is good.  The full body scans will help with a final determination on that.

                              Until you know for sure if you have other tumor sites, you really cannot create a treatment plan. The standard of care for people whose tumor is removed and who have no further spread of cancer is to do nothing except close observation.  Sometimes Interferon is offered, but this is a highly personal choice.  For most people Interferon creates flu-like symptoms during the year-long course of treatment.  The overall benefit of Interferon is relatively low–basically no benefit in overall survival and about 3-5% extension of progression-free survival.  For some people those odds are worth  dealing with the side effects.

                              As your doctors mentioned, several clinical trials are open for your situation–what is called, in medical terms, the "adjuvant setting".  Most of these trials involve trying to activate the immune system to "mop up" any stray tumor cells that might exist.

                              in considering whether or not to enter a trial, you may want to ask about the mitotic rate in your tumor.  Your doctor may give you that information in going over the path report.  Mitosis is the process of cell division.  The mitotic rate is a count of how many cells are actively dividing in a specific area of the tumor.  The higher the mitotic rate the more aggressive the tumor.

                              If you decide to look into clinical trials, MRF has a free service that helps identify trials for which you are qualified.  To the left of the window for this bulletin board you will see a small window that reads "Are you getting all the facts?"  If you click on that window you will be taken to a tool that asks about your specific situation, then shows trials for which you are qualified.  You will also see a toll-free number you can call to talk to someone who is trained in answering questions about trials.  We do not endorse or promote any particular trial or company, so you will receive objective information.

                              Keep us posted as you receive more information, and don't hesitate to ask more questions.

                              Tim–MRF

                              Tim–MRF
                              Guest

                                Sharon:

                                I am sorry to hear about your diagnosis, but am glad you found this community.  You will receive a lot of good information and support here.

                                As you know from your research, Nodular Melanoma tends to grow fast, and to move deeper rather than wider. Because most people delay having spots checked out and NM grows quickly, the diagnosis often occurs after the melanoma has metastasized.  Since your lymph nodes were clear that may not be the case with you, which is good.  The full body scans will help with a final determination on that.

                                Until you know for sure if you have other tumor sites, you really cannot create a treatment plan. The standard of care for people whose tumor is removed and who have no further spread of cancer is to do nothing except close observation.  Sometimes Interferon is offered, but this is a highly personal choice.  For most people Interferon creates flu-like symptoms during the year-long course of treatment.  The overall benefit of Interferon is relatively low–basically no benefit in overall survival and about 3-5% extension of progression-free survival.  For some people those odds are worth  dealing with the side effects.

                                As your doctors mentioned, several clinical trials are open for your situation–what is called, in medical terms, the "adjuvant setting".  Most of these trials involve trying to activate the immune system to "mop up" any stray tumor cells that might exist.

                                in considering whether or not to enter a trial, you may want to ask about the mitotic rate in your tumor.  Your doctor may give you that information in going over the path report.  Mitosis is the process of cell division.  The mitotic rate is a count of how many cells are actively dividing in a specific area of the tumor.  The higher the mitotic rate the more aggressive the tumor.

                                If you decide to look into clinical trials, MRF has a free service that helps identify trials for which you are qualified.  To the left of the window for this bulletin board you will see a small window that reads "Are you getting all the facts?"  If you click on that window you will be taken to a tool that asks about your specific situation, then shows trials for which you are qualified.  You will also see a toll-free number you can call to talk to someone who is trained in answering questions about trials.  We do not endorse or promote any particular trial or company, so you will receive objective information.

                                Keep us posted as you receive more information, and don't hesitate to ask more questions.

                                Tim–MRF

                                DonW
                                Participant

                                  Sharon — Sorry you have to join our group. I wouldn't be looking for info on "nodular" or "invasive" melanoma, since those terms are not important once you have had your primary tumor removed. The thickness– 1.79mm in your case — is the most important prognostic factor. The other important factor is "ulceration" — was it mentioned whether your primary was ulcerated or not? Your staging would be based on those factors and you would be either stage IB or 2A depending on the presence or absense of ulceration.

                                  Tim and the others gave good advice about looking into trials. I think some of the new treatments might be a good option if you can find one for your stage.

                                  Good luck and let us know how you are doing.

                                    Sharona19
                                    Participant
                                      Hi,

                                      Each day I learn more and more about this creepy melanoma. I was very hung up on the words like invasive and such. I have learned that tumor thickness and the presence or absence of ulceration is vital in making a treatment plan. My primary tumor was not ulcerated, so I guess I’m an A and not a B. How do I find out about the meitotic rate numbers? Mine was a 4 and I don’t know where that stacks up in the scheme of things. I have some minor control issues, as you may have guessed. I try very hard to be a well educated partner in my healthcare and I’m just frustrated at how hard it is to gleen information from the different journals and forums. I so hope I get an active oncologist.

                                      Thank you for listening and replying. It is greatly appreciated.

                                      Sharon

                                      DonW
                                      Participant

                                        Sharon — Mitosis is not a prognostic factor as far as staging goes, except for very thin melanomas (the difference between zero and non-zero mitosis). It is considered a minor factor by many docs however, along with location, sex and a few others. A mitotic rate of 4 I believe is considered moderate, not low or high, and probably is about average for your thickness. All of this is not going to make much difference for you other than the thickness and ulceration (good news on that, btw!). If you can find a trial, which might be difficult at your stage, you probably should consider it. Good luck! Keep posting, we like to hear what you decide and how you are doing.

                                        DonW
                                        Participant

                                          Sharon — Mitosis is not a prognostic factor as far as staging goes, except for very thin melanomas (the difference between zero and non-zero mitosis). It is considered a minor factor by many docs however, along with location, sex and a few others. A mitotic rate of 4 I believe is considered moderate, not low or high, and probably is about average for your thickness. All of this is not going to make much difference for you other than the thickness and ulceration (good news on that, btw!). If you can find a trial, which might be difficult at your stage, you probably should consider it. Good luck! Keep posting, we like to hear what you decide and how you are doing.

                                          DonW
                                          Participant

                                            Sharon — Mitosis is not a prognostic factor as far as staging goes, except for very thin melanomas (the difference between zero and non-zero mitosis). It is considered a minor factor by many docs however, along with location, sex and a few others. A mitotic rate of 4 I believe is considered moderate, not low or high, and probably is about average for your thickness. All of this is not going to make much difference for you other than the thickness and ulceration (good news on that, btw!). If you can find a trial, which might be difficult at your stage, you probably should consider it. Good luck! Keep posting, we like to hear what you decide and how you are doing.

                                            Minnesota
                                            Participant

                                              Sounds like you are stage 1B with a T2a primary tumor (same as me).

                                              You will be given the option of meeting an oncologist, but prepare yourself for nothing further to be done about your melanoma at this point other than having full-body skin checks every 3 months by your dermatologist.  This may sound crazy right now, but its because your SLNB results were so good.

                                              Like DonW said, forget the term "nodular" now – your tumor is gone.

                                              My doctor told me that because of my mitotic rate being higher than they wish it had been, my greatest concern would be a recurrance in the same area. That was somewhat reassuring to me because it meant that I had some control by being able to watch closely for any changes.

                                              Minnesota
                                              Participant

                                                Sounds like you are stage 1B with a T2a primary tumor (same as me).

                                                You will be given the option of meeting an oncologist, but prepare yourself for nothing further to be done about your melanoma at this point other than having full-body skin checks every 3 months by your dermatologist.  This may sound crazy right now, but its because your SLNB results were so good.

                                                Like DonW said, forget the term "nodular" now – your tumor is gone.

                                                My doctor told me that because of my mitotic rate being higher than they wish it had been, my greatest concern would be a recurrance in the same area. That was somewhat reassuring to me because it meant that I had some control by being able to watch closely for any changes.

                                                Minnesota
                                                Participant

                                                  Sounds like you are stage 1B with a T2a primary tumor (same as me).

                                                  You will be given the option of meeting an oncologist, but prepare yourself for nothing further to be done about your melanoma at this point other than having full-body skin checks every 3 months by your dermatologist.  This may sound crazy right now, but its because your SLNB results were so good.

                                                  Like DonW said, forget the term "nodular" now – your tumor is gone.

                                                  My doctor told me that because of my mitotic rate being higher than they wish it had been, my greatest concern would be a recurrance in the same area. That was somewhat reassuring to me because it meant that I had some control by being able to watch closely for any changes.

                                                  Sharona19
                                                  Participant
                                                    Hi,

                                                    Each day I learn more and more about this creepy melanoma. I was very hung up on the words like invasive and such. I have learned that tumor thickness and the presence or absence of ulceration is vital in making a treatment plan. My primary tumor was not ulcerated, so I guess I’m an A and not a B. How do I find out about the meitotic rate numbers? Mine was a 4 and I don’t know where that stacks up in the scheme of things. I have some minor control issues, as you may have guessed. I try very hard to be a well educated partner in my healthcare and I’m just frustrated at how hard it is to gleen information from the different journals and forums. I so hope I get an active oncologist.

                                                    Thank you for listening and replying. It is greatly appreciated.

                                                    Sharon

                                                    Sharona19
                                                    Participant
                                                      Hi,

                                                      Each day I learn more and more about this creepy melanoma. I was very hung up on the words like invasive and such. I have learned that tumor thickness and the presence or absence of ulceration is vital in making a treatment plan. My primary tumor was not ulcerated, so I guess I’m an A and not a B. How do I find out about the meitotic rate numbers? Mine was a 4 and I don’t know where that stacks up in the scheme of things. I have some minor control issues, as you may have guessed. I try very hard to be a well educated partner in my healthcare and I’m just frustrated at how hard it is to gleen information from the different journals and forums. I so hope I get an active oncologist.

                                                      Thank you for listening and replying. It is greatly appreciated.

                                                      Sharon

                                                    DonW
                                                    Participant

                                                      Sharon — Sorry you have to join our group. I wouldn't be looking for info on "nodular" or "invasive" melanoma, since those terms are not important once you have had your primary tumor removed. The thickness– 1.79mm in your case — is the most important prognostic factor. The other important factor is "ulceration" — was it mentioned whether your primary was ulcerated or not? Your staging would be based on those factors and you would be either stage IB or 2A depending on the presence or absense of ulceration.

                                                      Tim and the others gave good advice about looking into trials. I think some of the new treatments might be a good option if you can find one for your stage.

                                                      Good luck and let us know how you are doing.

                                                      DonW
                                                      Participant

                                                        Sharon — Sorry you have to join our group. I wouldn't be looking for info on "nodular" or "invasive" melanoma, since those terms are not important once you have had your primary tumor removed. The thickness– 1.79mm in your case — is the most important prognostic factor. The other important factor is "ulceration" — was it mentioned whether your primary was ulcerated or not? Your staging would be based on those factors and you would be either stage IB or 2A depending on the presence or absense of ulceration.

                                                        Tim and the others gave good advice about looking into trials. I think some of the new treatments might be a good option if you can find one for your stage.

                                                        Good luck and let us know how you are doing.

                                                        Minnesota
                                                        Participant

                                                          Hi Sharon, you and I have similar stories – your tumor was a little bigger, and my mitotic rate was a little higher, and we are close in age.

                                                          I'm 6 mos. into this and just want to tell you that it gets better. All things considered, you've received great news post-surgery, so cling to that and do whatever you have to do to take care of your ankle so that it heals well. 

                                                           

                                                          Minnesota
                                                          Participant

                                                            Hi Sharon, you and I have similar stories – your tumor was a little bigger, and my mitotic rate was a little higher, and we are close in age.

                                                            I'm 6 mos. into this and just want to tell you that it gets better. All things considered, you've received great news post-surgery, so cling to that and do whatever you have to do to take care of your ankle so that it heals well. 

                                                             

                                                            Minnesota
                                                            Participant

                                                              Hi Sharon, you and I have similar stories – your tumor was a little bigger, and my mitotic rate was a little higher, and we are close in age.

                                                              I'm 6 mos. into this and just want to tell you that it gets better. All things considered, you've received great news post-surgery, so cling to that and do whatever you have to do to take care of your ankle so that it heals well. 

                                                               

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