Melanoma with unknown source.

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Has anyone been diagnosed with melanoma where they cannot find the source? Mine has spread to the lymph nodes under my arm. I have had lymph nodes removed and that has  as its own side affects. In total I had a total of 41 removed from each side and only 2 were cancerous.  I don’t know if I will need any more treatment, I have an appointment I. 3 weeks time but can’t wait to find out what may happen next. 

  • Hi

    I don't have personal experience of this myself, as no melanoma was found in my lymph nodes, but from what I've seen from others who have posted usually some form of adjuvant treatment, either targeted therapy or immunotherapy, is offered. Clicking on the links will give you further information.

    I can see that you've said "I just hope they will not give me any more treatment" and, of course, it's entirely your decision whether to have treatment or not. 

    When I first joined this community 4 years ago adjuvant treatment wasn't available and people whose melanoma had spread to their lymph nodes were simply monitored in the same way as those of us whose melanoma hadn't spread. Treatment could only begin when it was found to have spread to an organ, ie liver, lungs, etc.

    So, to answer your question "Have you heard of anyone that has not had any further treatment after the lymph nodes removed", the answer is yes but that was before treatment had been approved for patients with spread to their lymph nodes.

    x

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  • Hi again

    Thanks for your advice and I will look at the links  for the treatment I could be offered. When I said I hoped they don’t give me any more treatment I meant I hoped I would not need it. I was thinking if my melanoma had disappeared and they had cut the cancer out of the lymph nodes it was all gone. I clearly don’t know enough about having cancer. I will of course have any treatment offered. I suppose I am still trying to accept what has happened to me. It is great if they can stop it before it spreads.

    Again thank you and I do appreciate you taking the time to explain this to me.

    take care

    Daisy

  • Hi Daisy,

           I was in exactly the same boat as you. 2 years ago (Nov 2019) I found a small lump under my armpit, a biopsy gave me a diagnosis of Stage 3b melanoma with unknown primary. I had an armpit clearance and several lymph nodes were removed and, except for the node with the lump,  all were clear. I then underwent 12 months of immunotherapy ( monthly treatment - little or no side effects), for the 1st year I had 3 monthly skin checks, tumour marker blood tests and CT scans. In my 2nd year I was given 6 monthly skin checks, blood tests and chest/abdomen/pelvis CT scans (touch wood all clear so far). I had my end of 2nd year CT scan yesterday and am awaiting results. If this is all clear and obviously I hope it is, I will go to annual checks etc. for the next 3 years. That's my story in brief and I hope it gives you some hope that, although I'm far from being cured, there is a way forward with potential light at the end of the tunnel. I never felt physically bad or ill but the mental side of things were very difficult for me. Find out as much as you can (from reliable sources), ask your oncologist every question you can think of, the more you know the more you can understand your situation. Good luck, am thinking of you. Take care. Chris

  • Hi Chris

    Thank you for getting in touch. I had cancer in two nodes on one side. They took out loads both sides. You are virtually the same as me! I went to the oncologist on Wednesday and will have another scan 23 Dec and will start immunotherapy beg of Jan every six weeks for a year. Then checkups for the next four. I was worried about the side affects but you have made me feel much better about it. I will have a drip and the first two they do in hospital and then they will come to my house to do it. Again thanks so much for sharing your story.  Did you have any problems with arms swelling/lymphodimia?

    Daisy

  • Hi Daisy,

          After my right arm pit clearance I had a bag for 3 weeks for drainage but did not have any swelling at all. I only had the clearance / lymph node removal on one side. Once the output from the drain dropped below a certain level they removed the bag. The immunotherapy takes about an hour including the flushes. I had little or no side effects whatsoever except a bit of tiredness for a short while after treatment. They put my immunotherapy drip in the back of my hand each time, only issue was if they missed your vein they had to try again - a little painful but not too bad. Overall the treatment was no problem whatsoever. You hardly know you've had it. My first two scans were full body PET/CT scans, then I went to chest, abdomen, pelvis CT scans, a bit of an inconvenience but again no major problem. My issues were mainly mental - waiting for results etc. talk to people, ask your oncologist for referral to a psychologist who specializes in cancer patients undergoing treatment. Dont suffer mentally alone. Anything else you need to know please ask. Good luck and let me know how you get on. Take care. Chris

  • Hi again I replied to you before I read your story as I was so excited your case is just like mine even with the treatment. I loved your story so detailed which is so helpful. I hope your results are good. 
    thanks again

    Daisy

    ps I choose the name DaisyRed as I like a glass or to of red!’

  • On one of my early scans there were a couple of lessions on my liver, which initially made me panic. However, they were not FDG avid and so were not cancerous. I put them down to the red wine !!!! I believe they only scan chest, abdomen, pelvis as it covers lymph nodes and your liver and lungs as if it is going to spread thats where it will go first. My oncologist once said to me - and I quote "most people like you are cured", I remind myself of that when I'm feeling down. Every scan that is clear means its likelihood of returning lessens. The immunotherapy drug I had was 

    • Nivolumab (Opdivo®)
  • Hi they are going to give me Keytruda, (pembrolizumab)  Fingers crossed we both get cured. Will let you know how my first session goes.

  • great to read a positive story and you sound like you are doing amazing. I am on pembro as a preventative measure 3 doses in and all seems to be well.

    Felt 2 lymph nodes up in my neck last week so getting them checked on Thursday ( hoping all is ok). They said they would ct scan my head and neck too ( appointment to follow ) as the cat scan I had 4 weeks ago was a chest/ abdomen and pelvis scan only. 

  • Good luck DaisyRed for tomorrow, I was nervous first time round and had a strange shivery, cold feeling even before the treatment!

    It was over so quickly and the staff were all lovely so don't worry. And take a book!  They don't make up the Pembro til you get there and your bloods are ok as it's so expensive so plan for at least three hours there possibly. Take care xx