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Does anyone have any experience of stage 1b Melanomas spreading to other parts of the body?

Liz2024
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Two years ago both my brother and I had melanomas, his was assessed as Stage 2 and mine was at stage 1b, and we both had lymph nodes tested.  We both received the ‘all clear’. 

Am very sad to say my brother had a fall and they did a routine scan of his head, and found lesions on the brain and the cancer has spread.  Apparently it spread through the blood. He is now receiving palliative care and has very little time left.

This really concerned me so I made contact with my specialist, who said it is highly unlikely that my cancer had spread and wouldn’t recommend a scan, just to keep an eye on my skin.   My question:  Is this just another form of cost cutting? Does anyone else have experience or knowledge of stage 1b melanomas travelling to other parts of the body and not to the lymph nodes?  Am wondering whether to ask for a second opinion and request a scan.  

Any knowledge or experience most welcome.  

  • Hi Liz2024,

    Welcome to Cancer Chat. I'm sorry to hear of the situation with your brother, and I can understand your concerns and questions.

    You are always entitled to a second opinion, so you could certainly explore this if you would like to.

    You are also welcome to talk things through with our nurses - either by posting in the 'Ask the Nurses' section of this forum, or by calling freephone 0808 800 4040 (Monday-Friday, 9-5), if you would like to speak to one of the nurses.

    Otherwise, if others here have anything in particular to add then hopefully you'll get some more replies soon.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

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    Hi Liz,

    I'm sorry to hear about your brother's advanced melanoma & that you were also diagnosed with the same cancer at the same time.

    Your consultant is correct in that it is highly unlikely that yours has spread - the chances of a spread in a Stage 1b patient are far lower than in a Stage 2 patient. However, in a small number of Stage 1b patients it can - I, unfortunately was one of them. The problem is that they will not routinely scan Stage 1 patients as the risk of radiation from several routine scans far outweighs the minimal chance of finding a spread - it's not due to cost cutting, it's always been the same.

    That is why we are told to get to know our body so that we can check it for any moles, lesions, lumps or bumps & bring up any such concerns with our consultants. That's what happened to me - Stage 1b in 1996, found a lump in my groin in 2009 - fine needle aspiration biopsy confirmed melanoma. In those days we had no drug therapy so we weren't monitored by regular scans (as they do now for Stage 3) - in my 14 years as a melanoma patient I've only had 3 scans (I've had triple that amount in 2 years as a pancreatitis patient). 

    Melanoma can spread through the lymphatic system to the nodes (and then possibly onwards) or through the blood to organs.

    Due to your family history perhaps you could ask for genetic testing. You could also pay privately for a scan, if you can afford it, but I doubt a second opinion on the NHS would agree to arranging a scan. 

    My thoughts are with you & your brother,

    Angie (Stage 3 melanoma patient since 2009)

  • Offline in reply to AngieT

    Hi Angie,

    Thank you so much for your response. A difficult decision then to have a scan but given my level of worry it may be my best option.  I think I will have a discussion with my GP about it and genetic testing.  

    Stay well. 
    Kind regards

    Liz

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