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Newly diagnosed young mommy… finally joining board

Forums General Melanoma Community Newly diagnosed young mommy… finally joining board

  • Post
    simone
    Participant

      So sad to be joining this club…

      So sad to be joining this club…

      I have been reading the posts for weeks now, but just finally joining.  So, here's the story.  I am a 37 yr old happily-married mom of 2 toddlers.   The Melanoma bomb hit our lives almost 2 months ago.  I was diagnosed in August w/ Melanoma Stage 1C (1.2mm with mitosis) on my arm and had the WLE a month ago w/ Sentinal Node Biopsy in New York.  Lymph nodes were not involved… thank God.  Then, my Melanoma team  tells me that I should be "focused on survival" for the next 2-3 yrs & need to be monitored for 6-10 yrs due to the mitosis.  WHAAAA?!?!?!?!?!  Needless to say, I almost fell off my chair!!!  I thought my news of lymph nodes being clear was starting to sound pretty good…. well, I don't mean "good" but you know, not "survival" discussions.  Then they told me that we should not pursue having another child (as were in the midst of trying & really hoping for). 

      Sounds pretty scary & even scarier when I go online to research more. Not sure what to think…. or which part of this should be keeping me up at night.  Also, I got a second opinion from another Mela specialist & he said Mitosis is only relevant if primary is less than 1mm & you are determining whether or not to do SNB.  Have you heard this?  I have mitosis, which one group seems really concerned about in terms of risk for recurrence.  Other doc said no longer relevant.  What have you heard?  Should I really be "focused on survival" and also halt the baby plans? 

      Thank you!  You all seem like an amazing group of people -sorry we have to meet this way!  :)

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    • Replies
        Jackie W
        Participant

          Welcome to the board and also sorry you have to be here.  The Mitotic rate is the rate at which the cells divide.  The higher the number, the faster the cells are dividing.  Do you have a copy of your pathology report?  If not, get a copy.  In fact, get a copy of the results of everything that is done.  You can post a copy of the path report here.  There are many people here who can interpret it for you.

           

          Jackie W

           

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          Jackie W
          Participant

            Welcome to the board and also sorry you have to be here.  The Mitotic rate is the rate at which the cells divide.  The higher the number, the faster the cells are dividing.  Do you have a copy of your pathology report?  If not, get a copy.  In fact, get a copy of the results of everything that is done.  You can post a copy of the path report here.  There are many people here who can interpret it for you.

             

            Jackie W

             

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            lhaley
            Participant

              Welcome to the club that none of us wants to be a part of. When you read this board please realize that there are definitely more advance staged members, therefore it can be a scary place. Hopefully you will not ever progress. Mitosis is part of the staging guidelines, and it is mentioned up to stage 2C.

              Can it come back? Unfortunately yes, but right now your odds are that it won't.  There are mixed opinions about pregnancy and melanoma. I was stage 1A  (with restaging guidelines that might be 1B now) when I became pregnant (we waited a few years) . I have to tell you that I was worried the entire time. That son is now about to turn 29!

              Recurrances can come happen immediately, never or 30 + years after original diagnosis.  As time passes you will be able to put it into perspective and go back to enjoying your life and family. Just remember to be proactive and learn your body. Know when there are changes and act on them.

              Wishing you the best,

              Linda

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                DonW
                Participant

                  Linda — where do you see this about mitosis being mentioned through stage 2c? What I see seems to agree with the doc who said it's relevant for tumors under 1mm. In general a lower mitosis is better, but from what I can find where it effects staging beyond 1mm.

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                  lhaley
                  Participant

                    Don,

                    You are right, I am so sorry!  When searching I started looking for ulceration instead of mitosis.   Actually when I went back just now to the chart that I looked at (on this site) there was no mention of mitosis at all for any stage. I thought that was changed with the last guidelines.  I guess that's what got me onto ulceration when no stage had mitosis.  Also noticed that stage 1C was not even on this particular chart.

                    Don, thank you for catching my mistake.  Simone I am sorry for the misinformation.

                    Linda 

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                    DonW
                    Participant

                      Linda — Yes, I have not seen a good chart for the new staging system like the old one we used. I may have to make one myself! Also, I think you are right that there is no stage 1C, I've never seen one mentioned. This site has a decent rundown of the new staging guidelines: http://www.melanomacenter.org/staging/stages.html

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                      DonW
                      Participant

                        Linda — Yes, I have not seen a good chart for the new staging system like the old one we used. I may have to make one myself! Also, I think you are right that there is no stage 1C, I've never seen one mentioned. This site has a decent rundown of the new staging guidelines: http://www.melanomacenter.org/staging/stages.html

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                        lhaley
                        Participant

                          Don,

                          You are right, I am so sorry!  When searching I started looking for ulceration instead of mitosis.   Actually when I went back just now to the chart that I looked at (on this site) there was no mention of mitosis at all for any stage. I thought that was changed with the last guidelines.  I guess that's what got me onto ulceration when no stage had mitosis.  Also noticed that stage 1C was not even on this particular chart.

                          Don, thank you for catching my mistake.  Simone I am sorry for the misinformation.

                          Linda 

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                          DonW
                          Participant

                            Linda — where do you see this about mitosis being mentioned through stage 2c? What I see seems to agree with the doc who said it's relevant for tumors under 1mm. In general a lower mitosis is better, but from what I can find where it effects staging beyond 1mm.

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                          lhaley
                          Participant

                            Welcome to the club that none of us wants to be a part of. When you read this board please realize that there are definitely more advance staged members, therefore it can be a scary place. Hopefully you will not ever progress. Mitosis is part of the staging guidelines, and it is mentioned up to stage 2C.

                            Can it come back? Unfortunately yes, but right now your odds are that it won't.  There are mixed opinions about pregnancy and melanoma. I was stage 1A  (with restaging guidelines that might be 1B now) when I became pregnant (we waited a few years) . I have to tell you that I was worried the entire time. That son is now about to turn 29!

                            Recurrances can come happen immediately, never or 30 + years after original diagnosis.  As time passes you will be able to put it into perspective and go back to enjoying your life and family. Just remember to be proactive and learn your body. Know when there are changes and act on them.

                            Wishing you the best,

                            Linda

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                            washoegal
                            Participant

                              My dear young mother,

                              It doesn't get much scarier, I am so sorry for you and your husband.  My mother was in your position almost 60 years ago, she waited 5 years to have ME!  Fast forward to early this year, I was diagnosed with stage 3a. 

                              It's hard to tell someone what to do.  You can go on line and read the statistics yourself and see you have and excellent chance of survival.  That does not mean the Mel may not come back, one never knows.  But if you choose to go with Dr #1 and monitor ( I assume that means PET/CT scans) know that baby plans would be out.  You'll be using radioactive materials to check you body so you wouldn't want to be pregnant.

                              To me I think the Dr #2 was much more current on his line of thinking. 

                              Before you go on with any life changes just get your head and your heart wrapped around what has happened.  You will need to see a derm. regularly, take care in the sun and be more aware of chances in you body at minimum. 

                              I see nothing but a bright future for you.  Good luck and let us know what you decide.

                               

                              Mary

                              Stage 3a

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                              washoegal
                              Participant

                                My dear young mother,

                                It doesn't get much scarier, I am so sorry for you and your husband.  My mother was in your position almost 60 years ago, she waited 5 years to have ME!  Fast forward to early this year, I was diagnosed with stage 3a. 

                                It's hard to tell someone what to do.  You can go on line and read the statistics yourself and see you have and excellent chance of survival.  That does not mean the Mel may not come back, one never knows.  But if you choose to go with Dr #1 and monitor ( I assume that means PET/CT scans) know that baby plans would be out.  You'll be using radioactive materials to check you body so you wouldn't want to be pregnant.

                                To me I think the Dr #2 was much more current on his line of thinking. 

                                Before you go on with any life changes just get your head and your heart wrapped around what has happened.  You will need to see a derm. regularly, take care in the sun and be more aware of chances in you body at minimum. 

                                I see nothing but a bright future for you.  Good luck and let us know what you decide.

                                 

                                Mary

                                Stage 3a

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                                bluepeople
                                Participant

                                   I am so sorry that you are having to deal with this.  When I read your post it really hit me hard because we are dealing with some of the same issues.  My husband was diagnosed 2C in August, we have a 1 year old, and we were thinking of trying for another.  Hubby is 43, I'm 36, so it's not like we can wait and hold off on trying for another, so pretty much, our baby plans are over.  It's been very upsetting, but we are in the same place, watch and wait, except that he is considering doing interferon.  It is so scary and frustrating just thinking "Will this disease strike again?"  It seems that most likely it will, but hopefully later rather than sooner. 

                                  Just know that you have a group of people here that you can come to for support, information or just to vent.  Good luck

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                                  bluepeople
                                  Participant

                                     I am so sorry that you are having to deal with this.  When I read your post it really hit me hard because we are dealing with some of the same issues.  My husband was diagnosed 2C in August, we have a 1 year old, and we were thinking of trying for another.  Hubby is 43, I'm 36, so it's not like we can wait and hold off on trying for another, so pretty much, our baby plans are over.  It's been very upsetting, but we are in the same place, watch and wait, except that he is considering doing interferon.  It is so scary and frustrating just thinking "Will this disease strike again?"  It seems that most likely it will, but hopefully later rather than sooner. 

                                    Just know that you have a group of people here that you can come to for support, information or just to vent.  Good luck

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                                    simone
                                    Participant

                                      Thanks so much for your responses!  It's great to have a board like this to run things by.  I am currently deciding on which Melanoma team to go with, since it sounds like we are going to be close friends in the years to come.  I am fortunate b/c both Yale and Memorial Sloan Kettering have great teams, and both are close by.  Have my PET scan in a couple wks.  The Mela teams didn't think I needed it (b/c of no lymph node involvement –Ib), but I insisted. 

                                      My husband and I think we'll wait a year before we make any decisions on having a baby, but we are feeling like YES, I will survive this, the outlook is good & that's how we want to live with this… HOPE.  Cautiously optimistic!  :)  Thank you all for being out there and for many of you with the inspiring stories.  We REALLY need them.  Thank you all and good luck.  Let's beat this.

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                                      simone
                                      Participant

                                        Thanks so much for your responses!  It's great to have a board like this to run things by.  I am currently deciding on which Melanoma team to go with, since it sounds like we are going to be close friends in the years to come.  I am fortunate b/c both Yale and Memorial Sloan Kettering have great teams, and both are close by.  Have my PET scan in a couple wks.  The Mela teams didn't think I needed it (b/c of no lymph node involvement –Ib), but I insisted. 

                                        My husband and I think we'll wait a year before we make any decisions on having a baby, but we are feeling like YES, I will survive this, the outlook is good & that's how we want to live with this… HOPE.  Cautiously optimistic!  :)  Thank you all for being out there and for many of you with the inspiring stories.  We REALLY need them.  Thank you all and good luck.  Let's beat this.

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