confused about post treatment reviews

Hello Nance,

Thanks for getting in touch. My name is Helen, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

Welcome to the online community. I see you have joined Macmillan’s lung cancer forum and hope you have found it a warm and supportive community.

You have explained that your dad has had treatment for a limited-stage small cell lung cancer, which has included prophylactic cranial radiotherapy, and you are wondering what follow-up he should expect.

When lung cancer treatment has been completed, it’s helpful when patients receive a treatment summary and a personal follow-up care plan describing how their health will be monitored over the coming months and years, including check-ups at the hospital.

How often these check-ups happen will depend on the treatment received, but the National Institute for Care and Health Excellence (NICE), which governs NHS cancer treatment and care, has a statement regarding follow-up after lung cancer treatment: Offer all people with lung cancer an initial specialist follow-up appointment within six weeks of completing treatment. Offer regular appointments after this.

That appointment is 6 weeks from the completion of all therapies and can be in the form of a phone call, rather than a hospital visit, and can be with the specialist lung cancer nurse, rather than the oncologist.

Although it seems your dad hasn’t received a written follow-up plan, you mention a three month scan. I would expect any follow-up scan to be from the end of all treatment i.e. the brain radiotherapy.

So, ideally you might have expected your dad to have an initial follow-up conversation with a member of his lung cancer team at the end of September and if he has been told he will have a scan three months after his treatment, I think that should be around the end of October. 

I hope that make sense.  

You said that your dad remains breathless but is also losing weight. It is important his team is aware of his ongoing issues if he hasn’t spoken to them post-treatment.

I have linked Roy Castle Lung Foundation’s information on living with lung cancer which has a good deal of helpful advice on managing breathlessness and weight loss. But do see if you can encourage your dad to give his hospital lung cancer nurse specialist a call as they can offer additional advice on managing symptoms, reassure you both regarding his recovery, and explain your dad’s follow-up plan.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Helen

Cancer Information Nurse Specialist 

Ref HM/ GJ

Thank you so much for this!  It is very helpful.  I have assumed a scan (as opposed to him being told he will have one) as I am not sure how else he will know if the treatment is working or not.   This is our biggest worry that he now has a call scheduled in 2 weeks but without a scan/test, how do they know if the treatment worked or not?

I will look at the forums and webpages you have suggested too.

Thanks, Nance

Hello Nance, 

I am glad the information was helpful and hope the links will be of use.

Do encourage your dad to speak to his lung cancer nurse specialist sooner, rather you both being at home worrying. It's perfectly acceptable to do that, especially as he continues to lose weight and still has his cough.

If your dad can't find their contact details, you can call the hospital switchboard and simply ask to be put through to them - they usually work Mon-Fri. 

You can say that Macmillan suggested you do this because of his ongoing symptoms. 

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Helen

Cancer Information Nurse Specialist