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In need of some moral support
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In need of some moral support

› Forums › General Melanoma Community › In need of some moral support

  • Post
    • June 21, 2011 at 9:42 pm
    Linny
    Participant

      I have Stage III melanoma with an unknown primary. Only one lymph node had tested positive for melanoma in December. Back in January I had all the lymph nodes removed from under my left arm and am NED. Or, I hope I still am.

      In March I qualified for the MAGE vaccine trial and in order to qualify I needed to have clean scans, which I did.

      I have Stage III melanoma with an unknown primary. Only one lymph node had tested positive for melanoma in December. Back in January I had all the lymph nodes removed from under my left arm and am NED. Or, I hope I still am.

      In March I qualified for the MAGE vaccine trial and in order to qualify I needed to have clean scans, which I did.

      Fast forward to last week. I had begun noticing soreness and tenderness at the surgical site. There was no bruising, there was no redness — it just was sore and tender to the touch. I had a CAT scheduled anyway so I figured that if something was going on it should show up on the scan.

      When I went to see Dr. Scharfmann at Johns Hopkins today, I mentioned the pain and tenderness to him and coincidentally enough, he mentioned there was an abnormality found on the CAT scan at my surgical site. All the major organs were fine, though. He could not say with 100% certainty that it was scar tissue but he seems to be favoring that. The pain and tenderness might be an inflammation caused by surgical clips that were left inside. During his exam he found no unusual lumps anywhere. I will need to undergo an ultrasound so the folks at Hopkins can get a closer look at that abnormality. If it looks suspicious they will do a needle biopsy.

      He didn't seem overly worried so I'm still on the trial. But it's easy for him to not worry, he's not me! LOL.

      I'm trying to remember the positive things (major organs are fine and if melanoma has decided to rear its ugly head it will have been caught early) but I just don't want to dig myself into the same hole I was in back in December when I was first diagnosed. So I'm posting this to find out if anyone here has had a similar experience or knows of someone else who has.

      Thanks,
      Linda

    Viewing 9 reply threads
    • Replies
        • June 21, 2011 at 9:59 pm
        Carol Taylor
        Participant

          Linda,

          I can identify!  All 27 nodes removed from under left arm, like you, clips inside like you. This was late 2008. Like you there was no obvious reason for soreness. My onc felt all around surgical site, so did his resident, and they both agreed that there was nothing wrong, not to sleep on that side at all, not to put pressure at all there, it would take care of itself.  Apparently it takes a long time for this to completely heal. Though I've healed by now, I still have problems with the scar tissue and the lymphedema that quickly developed, it all caused a real bad flare up of my RSD that's in that arm that I still deal with, my left arm's a mess…but hey, I'm here and can handle it. You can too and hopefully you're just dealing with healing.

          I'm a tosser and a turner when I sleep so though I tried not to get on my left side, I probably did. I'm still stage 3b and have been ned all this time. Relax. Hopefully you'll have a happy ending too. You may need to notice movements that aggravate it and then don't move like that or other adjustments, but you can do it.

          Lord, in Your mercy, let this be nothing but aggravation and then please remove even that. Amen.

          Grace and peace,

          Carol

          • June 21, 2011 at 9:59 pm
          Carol Taylor
          Participant

            Linda,

            I can identify!  All 27 nodes removed from under left arm, like you, clips inside like you. This was late 2008. Like you there was no obvious reason for soreness. My onc felt all around surgical site, so did his resident, and they both agreed that there was nothing wrong, not to sleep on that side at all, not to put pressure at all there, it would take care of itself.  Apparently it takes a long time for this to completely heal. Though I've healed by now, I still have problems with the scar tissue and the lymphedema that quickly developed, it all caused a real bad flare up of my RSD that's in that arm that I still deal with, my left arm's a mess…but hey, I'm here and can handle it. You can too and hopefully you're just dealing with healing.

            I'm a tosser and a turner when I sleep so though I tried not to get on my left side, I probably did. I'm still stage 3b and have been ned all this time. Relax. Hopefully you'll have a happy ending too. You may need to notice movements that aggravate it and then don't move like that or other adjustments, but you can do it.

            Lord, in Your mercy, let this be nothing but aggravation and then please remove even that. Amen.

            Grace and peace,

            Carol

            • June 22, 2011 at 12:32 am
            Carmon in NM
            Participant

              It's been over two years since my left axilary LND and it still gets sore and tender at times. Also, there is always a note on my PET scans about uptake activity typical of a surgical site.

              It's good you are getting it checked out soon but try not to worry too much until then!

              • June 22, 2011 at 12:32 am
              Carmon in NM
              Participant

                It's been over two years since my left axilary LND and it still gets sore and tender at times. Also, there is always a note on my PET scans about uptake activity typical of a surgical site.

                It's good you are getting it checked out soon but try not to worry too much until then!

                • June 22, 2011 at 12:50 am
                washoegal
                Participant

                  I also am stage 3 and have a similar situation.  It's not at the surgical site, it's in the breast near where I had lymph nodes taken out.  I have had the breast checked out every way except surgically.  I have minor to moderate lymphedema and the breast seems to be affected worse than the arm so "we" are pretty sure it's tissue damage from that.  But every check up it's the same thing. 

                   

                  When I first noticed there was also that moment of panic.  I had a mammogram done and a ultrasound immediately.  Both of which were inconclusive.  But it hasn't changed in 6-8 months, so it's probably not Mel. 

                   

                  Anyway, you're not alone.  We all have lumps and bumps.  I think it's odd how all the surgical staples show up on the Ct scans, I assumed the body absorbed these. 

                   

                  Mary

                  Stage 3

                  • June 22, 2011 at 12:50 am
                  washoegal
                  Participant

                    I also am stage 3 and have a similar situation.  It's not at the surgical site, it's in the breast near where I had lymph nodes taken out.  I have had the breast checked out every way except surgically.  I have minor to moderate lymphedema and the breast seems to be affected worse than the arm so "we" are pretty sure it's tissue damage from that.  But every check up it's the same thing. 

                     

                    When I first noticed there was also that moment of panic.  I had a mammogram done and a ultrasound immediately.  Both of which were inconclusive.  But it hasn't changed in 6-8 months, so it's probably not Mel. 

                     

                    Anyway, you're not alone.  We all have lumps and bumps.  I think it's odd how all the surgical staples show up on the Ct scans, I assumed the body absorbed these. 

                     

                    Mary

                    Stage 3

                    • June 22, 2011 at 2:51 am
                    michelleg
                    Participant

                      You and I have a  lot in common.  I am stage 3b……one positive node and unknown primary.  My LND was 7-7-10 and I started the MAGE DERMA trial in Aug 2010.  I also have an area of "thickness" at my incision that is thought to be scar tissue.  So far, I am still NED…….will have my next CTs on 7-1-11…….so hopefully, I can still report "NED" after that.  I have mild to moderate lymphedema that is worse in my breast but it is manageable.  I hope everything turns out good for you!

                       

                      Michelle/3B

                      • June 22, 2011 at 2:51 am
                      michelleg
                      Participant

                        You and I have a  lot in common.  I am stage 3b……one positive node and unknown primary.  My LND was 7-7-10 and I started the MAGE DERMA trial in Aug 2010.  I also have an area of "thickness" at my incision that is thought to be scar tissue.  So far, I am still NED…….will have my next CTs on 7-1-11…….so hopefully, I can still report "NED" after that.  I have mild to moderate lymphedema that is worse in my breast but it is manageable.  I hope everything turns out good for you!

                         

                        Michelle/3B

                        • June 22, 2011 at 2:50 pm
                        Linny
                        Participant

                          Thank you! You folks are great. smiley

                          I wasn't aware that these lumps, bumps, anomalies, whatever, were not unusual at the surgical site. Same for the notion that the area can remain sore and tender for quite a while after the surgery. I've had other surgeries but have never paid the scar tissue any mind and the post surgical discomfort normally went away after two months or so. 

                          Dr. Scharfmann seemed calm and had said if I weren't on the trial he'd have waited 3 months until the next CT scan to see if anything had changed with the anomaly. But since I'm on the trial, he needed to act more aggressively. I guess that's not such a bad thing, either.

                          Those surgical clips are made of metal. Titantium, I think. Yesterday I found some information about them on a breast cancer forum. Apparently it's common practice to leave them in if you've had a lymphadenectomy. They're used to control bleeding. They don't make airline security scanners go off, in case any of you are worried about that. But it is weird to suddenly realize that you're "metallic".

                          Linda

                          • June 22, 2011 at 2:50 pm
                          Linny
                          Participant

                            Thank you! You folks are great. smiley

                            I wasn't aware that these lumps, bumps, anomalies, whatever, were not unusual at the surgical site. Same for the notion that the area can remain sore and tender for quite a while after the surgery. I've had other surgeries but have never paid the scar tissue any mind and the post surgical discomfort normally went away after two months or so. 

                            Dr. Scharfmann seemed calm and had said if I weren't on the trial he'd have waited 3 months until the next CT scan to see if anything had changed with the anomaly. But since I'm on the trial, he needed to act more aggressively. I guess that's not such a bad thing, either.

                            Those surgical clips are made of metal. Titantium, I think. Yesterday I found some information about them on a breast cancer forum. Apparently it's common practice to leave them in if you've had a lymphadenectomy. They're used to control bleeding. They don't make airline security scanners go off, in case any of you are worried about that. But it is weird to suddenly realize that you're "metallic".

                            Linda

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