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Finding Myself Worrying About The What If’s…
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Finding Myself Worrying About The What If’s…

› Forums › General Melanoma Community › Finding Myself Worrying About The What If’s…

  • Post
    • June 28, 2014 at 4:32 am
    ltalley
    Participant

      I was dx with melanoma in December of 2013. It was a .30mm SSM, no ulceration, no mitosis, no lymphovascular invasion seen, clark level 2 lesion. I had my WLE in January and now just going to my every 3 month check ups. In the beginning my shock kept my fears at bay, then my 15 year old cousin was killed, and 20 days later my mother died…. So I believe my mind was too occupied to worry if I was gonna be ok. But now that everything has calmed down I find myself worrying all the time if I'm going to be around for my kids. I have also done the dreaded searches on the net and really don't see a lot of good news when it comes to melanoma. I mean even early stagers have reoccurrences and die from this horrible disease.. Right now I just could use some encouragement… thanks ahead of time to all who replies…

    Viewing 11 reply threads
    • Replies
        • June 28, 2014 at 5:43 am
        JerryfromFauq
        Participant

          Gal I think I have somme understanding of your fears.  I am entering the Chat room now if you arre available jump in with me.  Will have my volume turned up and will come baack and enter more here and will jump back to the Chaat window if I hear you enter.  Give me time.

           

          • June 28, 2014 at 5:43 am
          JerryfromFauq
          Participant

            Gal I think I have somme understanding of your fears.  I am entering the Chat room now if you arre available jump in with me.  Will have my volume turned up and will come baack and enter more here and will jump back to the Chaat window if I hear you enter.  Give me time.

             

            • June 28, 2014 at 5:43 am
            JerryfromFauq
            Participant

              Gal I think I have somme understanding of your fears.  I am entering the Chat room now if you arre available jump in with me.  Will have my volume turned up and will come baack and enter more here and will jump back to the Chaat window if I hear you enter.  Give me time.

               

              • June 28, 2014 at 8:56 am
              leslieann79
              Participant

                Italley,

                As far as technology goes, there's been quite a few breakthroughs and drugs the past few years in regards to melanoma and the research keeps going! It's nice to know that this is not some rare cancer that no one knows about. Some people's bodies just won't work with certain drugs or the cancer is just too far advanced for anything to work. Luckily you are at an early stage and my best advise is not to worry past the stage you are at. You never know what tomorrow will bring. I'm not saying "don't worry" because that's a foolish thing to say to a cancer patient, however, don't worry beyond your means and don't get trapped in worry world. You'll miss out on today. 

                My kids are informed of what is going on and what may happen. We love taking "selfies" and spending quality time together. It makes them feel like everything is still okay but when I have my bad days (ie side effects kick in) they understand.  It took a while, but I live my life for today and not tomorrow in regards to my cancer. Not everyone can get there, however, it really can happen, I promise. I'm not scared anymore and it feels good.  I have hope that I will beat this or at least not pass from it anytime soon. I really hope you can find this place, or at the very least, know that it does exist and it gives you hope. All my best to you and your family.

                  • June 28, 2014 at 10:27 am
                  JC
                  Participant

                    Usually in the past when people have posted with such lesions as .30mm, level 2, they are told their worry is exceeding their risk, their risk is very low, they were probably cured with the biopsy/excision, etc….  I’m not saying I agree with that because as you state “even early stagers have reoccurrences and die from this horrible disease” . . but then they are told that those stories are the exception rather than the rule because those who have not experienced recurrence are not posting on this board they are out living their lives. . those who have experience recurrence and post here might skew your perception etc…….  This is often what is said to people, I’m not saying whether I totally agree or not, but sometimes the mental battle is as hard as anything

                    • June 28, 2014 at 10:44 am
                    JC
                    Participant

                       In a study by Taran & Heenan in 2001, only 5 of 1716 patients with Clark’s level 2 (with <1 mm thickness) developed metastatic disease; and all those five patients had established regression. Their conclusion from that study was that metastasis from Clark’s level 2 malignant melanoma occur rarely, if at all, in the absence of regression.

                      • June 28, 2014 at 10:45 am
                      JC
                      Participant

                        Population-based 20-year survival among people diagnosed with thin melanomas in Queensland, Australia.

                         

                        Available clinical and histologic data from the Queensland Cancer Registry were obtained for all patients diagnosed with a single thin invasive melanoma from 1982 to 2006 and matched against national death registration data. Melanoma-specific survival estimates to December 31, 2007, were assessed, and subgroup differences in prognosis were determined by fitting multivariate Cox proportional hazard models.

                         

                        RESULTS: Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20-year survival was 96%

                        • June 28, 2014 at 10:45 am
                        JC
                        Participant

                          Population-based 20-year survival among people diagnosed with thin melanomas in Queensland, Australia.

                           

                          Available clinical and histologic data from the Queensland Cancer Registry were obtained for all patients diagnosed with a single thin invasive melanoma from 1982 to 2006 and matched against national death registration data. Melanoma-specific survival estimates to December 31, 2007, were assessed, and subgroup differences in prognosis were determined by fitting multivariate Cox proportional hazard models.

                           

                          RESULTS: Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20-year survival was 96%

                          • June 28, 2014 at 10:45 am
                          JC
                          Participant

                            Population-based 20-year survival among people diagnosed with thin melanomas in Queensland, Australia.

                             

                            Available clinical and histologic data from the Queensland Cancer Registry were obtained for all patients diagnosed with a single thin invasive melanoma from 1982 to 2006 and matched against national death registration data. Melanoma-specific survival estimates to December 31, 2007, were assessed, and subgroup differences in prognosis were determined by fitting multivariate Cox proportional hazard models.

                             

                            RESULTS: Among 26,736 people in the state of Queensland diagnosed with thin melanomas, the 20-year survival was 96%

                            • June 28, 2014 at 10:44 am
                            JC
                            Participant

                               In a study by Taran & Heenan in 2001, only 5 of 1716 patients with Clark’s level 2 (with <1 mm thickness) developed metastatic disease; and all those five patients had established regression. Their conclusion from that study was that metastasis from Clark’s level 2 malignant melanoma occur rarely, if at all, in the absence of regression.

                              • June 28, 2014 at 10:44 am
                              JC
                              Participant

                                 In a study by Taran & Heenan in 2001, only 5 of 1716 patients with Clark’s level 2 (with <1 mm thickness) developed metastatic disease; and all those five patients had established regression. Their conclusion from that study was that metastasis from Clark’s level 2 malignant melanoma occur rarely, if at all, in the absence of regression.

                                • June 28, 2014 at 10:27 am
                                JC
                                Participant

                                  Usually in the past when people have posted with such lesions as .30mm, level 2, they are told their worry is exceeding their risk, their risk is very low, they were probably cured with the biopsy/excision, etc….  I’m not saying I agree with that because as you state “even early stagers have reoccurrences and die from this horrible disease” . . but then they are told that those stories are the exception rather than the rule because those who have not experienced recurrence are not posting on this board they are out living their lives. . those who have experience recurrence and post here might skew your perception etc…….  This is often what is said to people, I’m not saying whether I totally agree or not, but sometimes the mental battle is as hard as anything

                                  • June 28, 2014 at 10:27 am
                                  JC
                                  Participant

                                    Usually in the past when people have posted with such lesions as .30mm, level 2, they are told their worry is exceeding their risk, their risk is very low, they were probably cured with the biopsy/excision, etc….  I’m not saying I agree with that because as you state “even early stagers have reoccurrences and die from this horrible disease” . . but then they are told that those stories are the exception rather than the rule because those who have not experienced recurrence are not posting on this board they are out living their lives. . those who have experience recurrence and post here might skew your perception etc…….  This is often what is said to people, I’m not saying whether I totally agree or not, but sometimes the mental battle is as hard as anything

                                  • June 28, 2014 at 8:56 am
                                  leslieann79
                                  Participant

                                    Italley,

                                    As far as technology goes, there's been quite a few breakthroughs and drugs the past few years in regards to melanoma and the research keeps going! It's nice to know that this is not some rare cancer that no one knows about. Some people's bodies just won't work with certain drugs or the cancer is just too far advanced for anything to work. Luckily you are at an early stage and my best advise is not to worry past the stage you are at. You never know what tomorrow will bring. I'm not saying "don't worry" because that's a foolish thing to say to a cancer patient, however, don't worry beyond your means and don't get trapped in worry world. You'll miss out on today. 

                                    My kids are informed of what is going on and what may happen. We love taking "selfies" and spending quality time together. It makes them feel like everything is still okay but when I have my bad days (ie side effects kick in) they understand.  It took a while, but I live my life for today and not tomorrow in regards to my cancer. Not everyone can get there, however, it really can happen, I promise. I'm not scared anymore and it feels good.  I have hope that I will beat this or at least not pass from it anytime soon. I really hope you can find this place, or at the very least, know that it does exist and it gives you hope. All my best to you and your family.

                                    • June 28, 2014 at 8:56 am
                                    leslieann79
                                    Participant

                                      Italley,

                                      As far as technology goes, there's been quite a few breakthroughs and drugs the past few years in regards to melanoma and the research keeps going! It's nice to know that this is not some rare cancer that no one knows about. Some people's bodies just won't work with certain drugs or the cancer is just too far advanced for anything to work. Luckily you are at an early stage and my best advise is not to worry past the stage you are at. You never know what tomorrow will bring. I'm not saying "don't worry" because that's a foolish thing to say to a cancer patient, however, don't worry beyond your means and don't get trapped in worry world. You'll miss out on today. 

                                      My kids are informed of what is going on and what may happen. We love taking "selfies" and spending quality time together. It makes them feel like everything is still okay but when I have my bad days (ie side effects kick in) they understand.  It took a while, but I live my life for today and not tomorrow in regards to my cancer. Not everyone can get there, however, it really can happen, I promise. I'm not scared anymore and it feels good.  I have hope that I will beat this or at least not pass from it anytime soon. I really hope you can find this place, or at the very least, know that it does exist and it gives you hope. All my best to you and your family.

                                      • June 28, 2014 at 1:26 pm
                                      LuckyMan51
                                      Participant

                                        yesHi,

                                        Just wanting to confirm that you are seeing a Melanoma specialist as well as a dermatologist. Some Dermatologists focus on Melanoma as well and those quarterly scans are critical as are daily application of lotion with high sunblock on exposed skin. I do think getting a Melanoma Oncologist from a teaching/research type center in your rotation earlier rather than later will be important as new treatment options are coming through trials quickly. You do have a lot on your emotional as well as medical plate right now so you might benefit from getting a referral from your Doctor to a Therapist to help work through this period. One can only handle so much on their own shoulders so a bit of  help from a trained professional might offer some de stressing techniques that would let you prioritize and focuse on that which you can measure and monitor and are under your control. This might not be something you ever pictured yourself  doing but perhaps worth a try to see if it helps. Insurance could cover given your diagnosis and any way you can reduce your personal stress when faced with a challenge (albeit you appear to be in a low probably of mortality position currently) certainly can't hurt could it? Good luck! 

                                        • June 28, 2014 at 1:26 pm
                                        LuckyMan51
                                        Participant

                                          yesHi,

                                          Just wanting to confirm that you are seeing a Melanoma specialist as well as a dermatologist. Some Dermatologists focus on Melanoma as well and those quarterly scans are critical as are daily application of lotion with high sunblock on exposed skin. I do think getting a Melanoma Oncologist from a teaching/research type center in your rotation earlier rather than later will be important as new treatment options are coming through trials quickly. You do have a lot on your emotional as well as medical plate right now so you might benefit from getting a referral from your Doctor to a Therapist to help work through this period. One can only handle so much on their own shoulders so a bit of  help from a trained professional might offer some de stressing techniques that would let you prioritize and focuse on that which you can measure and monitor and are under your control. This might not be something you ever pictured yourself  doing but perhaps worth a try to see if it helps. Insurance could cover given your diagnosis and any way you can reduce your personal stress when faced with a challenge (albeit you appear to be in a low probably of mortality position currently) certainly can't hurt could it? Good luck! 

                                            • June 28, 2014 at 1:39 pm
                                            JC
                                            Participant

                                              I doh't think there is much an oncologist would be doing for you – dermatologist definitely to continue checking your skin, but an oncologist treats active disease – for a 0.30mm level II melanoma after surgery there isn't really anything an oncologist would do other than check your lymph nodes maybe which a regular primary care physician can do as part of routine exam

                                              • June 28, 2014 at 1:39 pm
                                              JC
                                              Participant

                                                I doh't think there is much an oncologist would be doing for you – dermatologist definitely to continue checking your skin, but an oncologist treats active disease – for a 0.30mm level II melanoma after surgery there isn't really anything an oncologist would do other than check your lymph nodes maybe which a regular primary care physician can do as part of routine exam

                                                • June 28, 2014 at 1:39 pm
                                                JC
                                                Participant

                                                  I doh't think there is much an oncologist would be doing for you – dermatologist definitely to continue checking your skin, but an oncologist treats active disease – for a 0.30mm level II melanoma after surgery there isn't really anything an oncologist would do other than check your lymph nodes maybe which a regular primary care physician can do as part of routine exam

                                                • June 28, 2014 at 1:26 pm
                                                LuckyMan51
                                                Participant

                                                  yesHi,

                                                  Just wanting to confirm that you are seeing a Melanoma specialist as well as a dermatologist. Some Dermatologists focus on Melanoma as well and those quarterly scans are critical as are daily application of lotion with high sunblock on exposed skin. I do think getting a Melanoma Oncologist from a teaching/research type center in your rotation earlier rather than later will be important as new treatment options are coming through trials quickly. You do have a lot on your emotional as well as medical plate right now so you might benefit from getting a referral from your Doctor to a Therapist to help work through this period. One can only handle so much on their own shoulders so a bit of  help from a trained professional might offer some de stressing techniques that would let you prioritize and focuse on that which you can measure and monitor and are under your control. This might not be something you ever pictured yourself  doing but perhaps worth a try to see if it helps. Insurance could cover given your diagnosis and any way you can reduce your personal stress when faced with a challenge (albeit you appear to be in a low probably of mortality position currently) certainly can't hurt could it? Good luck! 

                                                  • June 29, 2014 at 12:02 am
                                                  ltalley
                                                  Participant

                                                    Thanks to all who has replied so far and sorry I missed you Jerry.  I do see a dermatologist which specializes in Melanoma. I am seen every three months for skin checks and actually am waiting on another biopsy result at the moment. My primary care physician and my Dermatologist both say my chance of reoccurrance is extremely low considering that my lesion had no apparent signs of being more aggressive. When I first noticed the lesion I knew it was something I needed to keep an eye on. It just looked different than any other mole I had. I actually had it for a year before it ever even changed in the least bit, but when it did I immediately scheduled an appointment and had it removed. I am very thankful I did. I should of had it removed the year before but didn't want to look like a worry wart. But now if I see something I don't like or if my dermatologist sees something it is gone right then and there! My melanoma was so small that the actual biopsy itself gave me clear margins, but of course I still had to have a WLE for protocol. I hope the worrying will go away, I just need some peace of mind for awhile….

                                                    • June 29, 2014 at 12:02 am
                                                    ltalley
                                                    Participant

                                                      Thanks to all who has replied so far and sorry I missed you Jerry.  I do see a dermatologist which specializes in Melanoma. I am seen every three months for skin checks and actually am waiting on another biopsy result at the moment. My primary care physician and my Dermatologist both say my chance of reoccurrance is extremely low considering that my lesion had no apparent signs of being more aggressive. When I first noticed the lesion I knew it was something I needed to keep an eye on. It just looked different than any other mole I had. I actually had it for a year before it ever even changed in the least bit, but when it did I immediately scheduled an appointment and had it removed. I am very thankful I did. I should of had it removed the year before but didn't want to look like a worry wart. But now if I see something I don't like or if my dermatologist sees something it is gone right then and there! My melanoma was so small that the actual biopsy itself gave me clear margins, but of course I still had to have a WLE for protocol. I hope the worrying will go away, I just need some peace of mind for awhile….

                                                      • June 29, 2014 at 12:02 am
                                                      ltalley
                                                      Participant

                                                        Thanks to all who has replied so far and sorry I missed you Jerry.  I do see a dermatologist which specializes in Melanoma. I am seen every three months for skin checks and actually am waiting on another biopsy result at the moment. My primary care physician and my Dermatologist both say my chance of reoccurrance is extremely low considering that my lesion had no apparent signs of being more aggressive. When I first noticed the lesion I knew it was something I needed to keep an eye on. It just looked different than any other mole I had. I actually had it for a year before it ever even changed in the least bit, but when it did I immediately scheduled an appointment and had it removed. I am very thankful I did. I should of had it removed the year before but didn't want to look like a worry wart. But now if I see something I don't like or if my dermatologist sees something it is gone right then and there! My melanoma was so small that the actual biopsy itself gave me clear margins, but of course I still had to have a WLE for protocol. I hope the worrying will go away, I just need some peace of mind for awhile….

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