Be open with patients about life after cancer treatment

Cancer patients should not be left in the dark about long-term side effects

More than 40% of cancer patients are not being told about the long-term side effects of their treatment. Macmillan Cancer Support's Dany Bell explains why greater openness is essential

Cancer worries
It is important to tell patients about potential long-term side effects after cancer diagnosis.
Picture: Alamy

Thousands of people who have already had the devastation of a cancer diagnosis might might be completely unaware that they are at increased risk of developing serious illnesses such as heart disease, lymphoedema or fertility issues.

Macmillan Cancer Support's analysis of the Cancer Patient Experience Survey 2015, a national survey of 71,186 cancer patients in England, shows that 42% said staff did not fully explain the long-term side effects they could face. 

Vital knowledge to share

As a nurse of 30 years, I understand where the problem might lie. We are time-poor and we don’t want to overwhelm patients with information. You might only get a few minutes with a patient after they have been diagnosed with cancer to comfort them, help them absorb the news and tell them what is happening next. And at such a distressing time patients do not take in everything they need to know.

But I cannot emphasise enough how important it is that we tell patients about these potential long-term side effects. I know of one patient, Pauline, who had a radical hysterectomy and radiotherapy after being diagnosed with womb cancer. 

She was told that the radiotherapy could possibly damage her bowel or bladder, but not that it could weaken her bones. Six months later she fractured her pelvis and it was so weak, surgeons couldn’t repair it. She ended up using a wheelchair and now needs a daily carer. 

It has had a huge impact on her quality of life. She used to look after her granddaughter, but her disability made that impossible and she now experiences depression.

'Forewarned is forearmed'

This is such a sad story. Perhaps if Pauline had been told about the possibility she would have weak bones she could have been prepared. It might have gone on her treatment summary. 

She could have had medication to strengthen her bones or been encouraged to stay active, which would have helped her get mobile again after she had fractured her pelvis. She could also have been referred for a physical activity assessment and to see a dietitian. 

Forewarned is forearmed. If we tell cancer patients about potential long-term side effects of treatment they can spot them early on and get support to manage them. They can ensure serious illnesses do not go untreated, or they can make lifestyle changes to prevent or manage problems. For example, if someone with cancer is at risk of a heart condition from their treatment, they could benefit from altering their diet or exercise regime.

Useful resources

I would advise all nurses to order Macmillan Cancer Support’s free booklets and leaflets on long-term side effects and use them as a starting point with patients. You can give them to the patient to digest in their own time and follow up with them next time you see them. 

We should also all be working with cancer patients to develop a care plan (something recommended in Cancer Research UK's Cancer Strategy in England), regularly checking it and updating it according to the person’s needs. This gives you a chance throughout a patient’s cancer journey to remind them of the potential side effects they need to look out for and when to get help, as well as how to maintain a healthy lifestyle. 

If we all work together we can make sure cancer patients do not fall through the gaps and get the best support they need throughout their cancer treatment and beyond.

Dany Bell
Dany Bell is Macmillan Cancer Support treatment and recovery programme lead 

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