Disclaimer

Although we take care to ensure accuracy, Macmillan Cancer Support does not accept liability for the information and materials provided or referenced in Ask an Expert or for any errors or omissions in them, or for third-party information or services such as other websites we may link to. The information and materials provided or referenced in Ask an Expert are for information purposes only and are not intended to be legal, financial or medical advice or opinions. If you need more details on your rights, please contact a financial, legal or other appropriate adviser.

We recommend that you consult your doctor if you are concerned about your health. Any You should not rely on any information and materials provided or referenced in Ask an Expert including by our Experts as they are not a replacement for advice, diagnosis or treatment from your medical team, and our Experts cannot provide a second opinion to that of your medical team.

Your question can be read by others – so please don't post your contact details or any other information that could personally identify you. Please read our Terms and Conditions and Community Guidelines for more details.

merkel cell carcinoma stage 4

FormerMember
FormerMember
  • 1 reply
  • 41 subscribers
  • 549 views

Hello, my father has been dianosed with Merkal cell carcinoma stage 4 that has also spread to the lymph nods. He has had a massive tumor removed from his neck and had 30 sessions of radiotherapy. Since treatment has finished he seemed to perk up but recently he is in a lot of pain, sleeps all the time and seems depressed. I dont know what to do to help him and my mum who both are not coping well and also not accepting the fact that he will never be cured. We also belive they are not asking the right the questions during appointment because they dont want to know the answer. My mums getting annoyed with im because he wont eat, but then cries because she feels guilty about going on at him so much. He is keeping his feelings to himself because he doesnt want her worrying but none of this is helping them cope of deal with anything going on.  Any advice would be very welcome.

Also how long after Radiotherapy has finished would he have to wait for a pet scan to seeif the cancer shrank?

  • Hi Kels

    Thanks for getting in touch and welcome to the Online Community. I’m Fiona one of the Cancer Information nurse Specialists  here on the Macmillan Support Line. It sounds like your mum and dad are having a difficult time just now with everything that’s going on.

    Your dad needs to get back in touch with his team to let them know that he has a lot of pain, they would want to know about anything your dad’s experiencing that’s persistent and worsening.

    Radiotherapy can contribute to both pain and fatigue but your dad’s team will still want to know about it and can help manage it. They will also want to know why he is not eating and can make a referral to a dietician for additional advice around eating and drinking. It may be due his pain and that if that is improved, he will find eating easier.

    You also mention that your dad appears to be depressed. We have some good sources of support he could access or he could chat to his GP about getting some local support with how he is feeling.

    Denial about a prognosis with an incurable cancer is not unusual. It can take time and a lot of support to accept that an illness is terminal and some people never do. Would your dad give you permission to speak to his specialist or Clinical Nurse Specialist (CNS) on his behalf? This can often help everyone get a clear picture of what is going on and will give you the opportunity to ask some questions and voice any concerns.

    It might also be helpful to suggest more support for them at home. Although your dad’s cancer has been treated because it’s not curable, he will have on going issues with symptoms. He can be referred at this stage to the local palliative care team.   I’m not suggesting this because I think anything is imminently going to happen but because part of their role is to help manage symptoms, refer on to other support services and support both your mum and dad.  Your dad’s GP or specialist can make this referral if your dad is agreeable.

    PET scans are usually organised for a couple of months after treatment is finished and before a follow up oncology appointment. This is to allow for any inflammation to settle so that they can get a clear picture of response to treatment. In some cases, this can be done earlier which is why it’s important your dad lets his hospital team know about his current symptoms.  

    We also have a supportive Family and Friends group on our Online Community that you may want to think about joining. Sometimes the support from others in a similar situation is invaluable. It's important that you try to look after yourself as much as possible in this situation.

    If you want to talk things through, then please don’t hesitate to contact us. We are open 7 days a week from 8am till 8pm. Our number is 0808 808 0000. 

    Best wishes,

    Fiona

    Macmillan Cancer Information Nurse Specialist

    Our ref:LJ

     

     

     

Help us do whatever it takes, because we’ve never been needed more.

© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007