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Feel like a Newbie and freaking out
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Feel like a Newbie and freaking out

› Forums › General Melanoma Community › Feel like a Newbie and freaking out

  • Post
    • October 16, 2018 at 1:53 pm
    Bethharte
    Participant

       

      I orginally had stage IIIA SS Melanoma with 1 micromatasteses in SN and RLND  in 2010. I followed with the full course of Interferon A and been NED since then. Three weeks ago I found a lump in the goid where I had the RLND and saw my oncologist last week. I was told, from just pyhsical examination so far at this point it is recurrence. My family doctor helped me out a little and had me in for an unltrasound on the area. The results show a probable 2cm soft tissue tumor. I have gotten my CT scans moved up from December to Oct 22nd, working on getting the MRI moved up. Talked to peer support via the Cancer Society but they were unable to "reach" me. They are long term disease free but they were stage IV when they started in 1993 and 2002 and hvae never been recurrent after this long. I am trying to reach out to someone whose story might be similar, I am trying to find my fight.  

      I have attempted to do some resarch, I am in health care, know what to stay away from and that statistics now are lagging in accuracy because of the newer protocals . I am having trouble finding any information on recurrence in the basin where the RLND was done and if that constitues local or locoregional recurrence. I know a lot of you are thinking, well at least you got the past almost 9 years, but now it feels like I have had a time bomb ticking away and didn't even know someone had started the clock. 

      Please help talk me down and find my fight. The waiting to do something is destroying my mental health.

       

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    • Replies
        • October 16, 2018 at 3:19 pm
        kandx
        Participant

          I'm so sorry you are in that terrible waiting place for scans/tests/information. I am a new IIIA patient myself, so I'm learning and I don't have much helpful advice to share. It sounds like you are being proactive and doing all you can to get ahead in getting your scans moved up (and I think you are also waiting for BRAF testing results?). I'd repeat advice about not researching too much until you have more information, but I can't follow that advice myself. Hopefully someone else here can chime in with more specific advice, but in the meantime, I just wanted to respond that you are being heard out here and I'm wishing you good answers soon. Do keep us posted. – Kelly

            • October 16, 2018 at 6:03 pm
            sharonlynn210
            Participant

              Did they speak with you about braf testing?Can they test your orginal Melanoma?I know it took six weeks for my sons test to come back.

              • October 16, 2018 at 8:14 pm
              Bethharte
              Participant

                Yes they are doing the BRAF testing on the original tumor now.

              • October 16, 2018 at 6:43 pm
              Sissi
              Participant

                Hi,

                I can certainly relate, as I had a recurrence this year. After 11 years at stage 1, melanoma showed up in a groin lymph node. I'm about to have a LND, I am stage 3. From the moment I felt the node and knew melanoma was back to the final diagnosis, more than 4 months passed.

                I know where you are. It was tough waiting for the biopsy report after the ultrasound, then wait for the results from the CT and PET scan. I kept crying. At home before going to work. On my way back home, and after I put my daughter to sleep. I spent hours in the early morning looking for answers on the internet.

                I just reread stuff I wrote 8 months ago and the words "I am so tired" and "I can't stand this anymore" come up all the time. I am way, way better now. You will feel better too, but it is tough in the meantime.

                I wish I had advices for you, I have none, except don't Google too much. I'll tell you what my dear oncologist told me the first time I saw him. He said "the game has changed for melanoma". People will take care of you, professionnals who know what they are doing, you will have a plan sooner than you think.

                  • October 16, 2018 at 8:24 pm
                  Bethharte
                  Participant

                    Thanks, I feel better than I did this morning. I spoke to one of my Melanoma Sepcialists who has pushed up my CT scan from December until Oct 23 and she is working on the MRI for the next two weeks. I should have all the reports back and a plan by the end of October. Without scan confirmation, only local ultrasound, it appears to be a local reoccurence in the basin where I had LND 9 years ago. My hope is to remain stage IIIA, have a LWD of the new tumor, adjuvant therapy and move on. 

                    When I research I only use Google Scholar or Medscape ( I have access) so when I do my information is up to date and accurate. I know I will feel better once I have a plan, I always knew I was high risk for recurrence, just thought I almost escaped the camp….

                     

                    • October 16, 2018 at 9:32 pm
                    ed williams
                    Participant

                      Hi Bethharte, a pretty good place to get back up to speed on latest and greatest in melanoma is a series of videos on ONclive made at this years ASCO in June. There are 4 or 5 specific to adjuvant therapy since so much is going on in this area over the last year! Here is a link, not sure if you have to join ONclive or not. It if you do,don't worry they don't bug you with stuff afterwards!!!Ed https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-options-in-melanoma

                      • October 16, 2018 at 9:36 pm
                      ed williams
                      Participant

                        Just wanted to add when you are watching video if you click on YouTube icon it takes you to better screen view of video!!! Also under link I gave you there are 6 #'s and the adjuvant stuff that is really good is found around # 5 and 6. Best Wishes!!!Ed

                      • October 17, 2018 at 3:35 pm
                      MelanomaMike
                      Participant
                        Hi Beth, oh boy, well, in a scense you are a newbie, maybe more like an old fossel of the new scene (NOT calling old!!), you been doing this a minute & now the Melanoma pot has stirred, ok, deep breath, since 2010 A LOT HAS CHANGED!! thank God & i feel that once you get BRAF tested, your on your way back to NED…put yer boots back on sis! Keep us posted!!
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