Testing on offer after melanoma stage 1A

FormerMember
FormerMember
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Hello,

I lost my sister to melanoma in February. She had a mole removed 4 years ago and was given a basic leaflet advising to check her lymph nodes and 2 follow up external checks within 12 months following this. Then signed off I believe. Suddenly in November she had a staggering pain on one side. Quite quickly they worked out she had cancer and by December stage 4 melanoma. After 2 strokes and an attempt with immunotherapy she passed away. 

When I looked up symptoms of melanoma, as well as checking lymph nodes, I read that breathing difficulties was one. She had this for a few years but it was not picked up on by her GP and not mentioned in the guidance she was given. I think there should be a yearly CT scan on offer following mole removal or at least guidance that states melanoma can suddenly reappear and a CT scan is an option for checking internally. We would have paid for her to have this done if necessary.

Just wondering if anyone else knows whether internal scans/tests are done in other countries as standard even if you are signed off after mole removal. Or if you have been through a similar experience.

If I'd known 4 years ago about other symptoms (as nothing was evident in the lymph nodes) I'd have suggested she get a yearly scan. I can't help but feel she could still be with us if it had been detected internally earlier.

Thanks,

Ches

  • Hi  and welcome to the online community

    I'm very sorry to read that your sister passed away from melanoma earlier this year. It must have been a tremendous shock to discover that the melanoma had come back after several years clear.

    I was diagnosed with melanoma stage 2a nearly 4 years ago now so I thought I'd reply with what I know about follow ups. As you're probably aware, stage 1a is the best stage you can be without being told you don't have melanoma. However, we are all aware that it can come back which is why your sister will have been told to regularly check her skin and lymph nodes.

    My follow-ups consist of being seen by a dermatologist every 3 months when my skin is visually checked and also my lymph nodes felt. In between time I check my skin and lymph nodes on a monthly basis. I don't have any scans. 

    I've created a link to the NICE Guidelines on Follow-Up Care After Treatment where you'll see that it says "if you've had stage 1A melanoma you may be offered between 2 and 4 check‑ups during the first year after you finish treatment. You may be discharged at the end of that year." From what you've said this is the follow-up care that your sister had. CT or MRI scans are only routinely offered if you are stage 2C or stage 3.

    Although it can be reassuring to have scans they can put you at risk of other problems because of being exposed to radiation and you might like to take a look at this NICE decision aid on whether to have regular CT scans..

    I don't know if other countries do anything different to the UK but you could put this question to the other members of the melanoma group as I think there may be a few members who are not based in the UK. If you'd like to do this clicking on the link I've created will take you to the group which you can then join.

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  • Hi Ches,

    I lost Mum 4 years ago next week. Mum was diagnosed with stage 2b melanoma in April 2015. She had surgery and 3 monthly follow ups. At a follow up in September 2016 Mum told the registrar filling in for the regular consultant that she felt generally rubbish and had backache. The doctor’s response was that Mum should see her GP. Mum felt embarrassed, like she was being paranoid or moaning. 

    Mum died 6 weeks later. The cancer was in her bowel, her bile duct, her hip and neck. She was a young 64 and energetic and enjoying life. I still feel so shocked that she has gone and like so much more could have been done for her. I also think all the time how I should have pushed for yearly scans or had these done privately. 

    I should say that Mum’s death certificate stated that she died of cancer of unknown primary but we always assumed Melanoma had a part to play. Another level to this was that one doctor said though there were no lesions on the pancreas, her cancer behaved like a pancreatic cancer. Through my own reading, I have since found out that melanoma and pancreatic cancer are linked. This was never mentioned to us though a dermatologist friend has confirmed this is the case. 

    I understand how you feel that perhaps your sister could still be here. I hope you’re OK. I still find it very hard to accept and I feel like Mum was let down,

    Take care, Ali. 

    Ali x