Tens of thousands of people in the UK are currently living with a form of rare cancer, such as cancer of the heart, ear or penis, according to new research by Macmillan Cancer Support and Public Health England’s National Cancer Intelligence Network (NCIN).

The new data, from a joint research programme between Macmillan and NCIN, reveals the surprising numbers of people living with some of the rarest forms of the disease including:

• Almost 700 people with heart cancer
• Almost 2,000 people with cancer of the nasal cavity and middle ear
• Around 4,000 men with cancer of the penis
• Around 5,000 people with cancer of the salivary glands
• Almost 5,800 people with cancer of the eye
• Around 6,700 people with cancer of the anus

This is the first time such a detailed picture of the number of people living with rare cancers has been known.

Macmillan is concerned that as the NHS is under increasing pressure to meet the needs of a growing number of cancer patients, it will struggle further to give people with rarer cancers – whose needs are often more complex – the level of care they deserve.

Existing research shows that some rarer cancers are more likely to be diagnosed through emergency admissions than other cancers.

This means treatment is likely to be more aggressive and many people will struggle to return to full health after their diagnosis.

In addition, people with rarer cancers are more likely to feel isolated and encounter poorer patient experience than those with more common cancers; one in five are not given any information about support or self-help groups after diagnosis.

Joanne Hill, 45 from Wiltshire had malignant melanoma in her eye. She says:

“When I was diagnosed, I was given plaque radiotherapy and kept in hospital for five days but I was really disappointed that when I left I wasn’t offered counselling. I was also discharged without any aftercare. I was referred back to my local hospital but the consultant there didn’t have experience treating my type of cancer, which left me feeling isolated and unsupported. Even six years after my diagnosis it’s not clear where to seek help.”

Lynda Thomas, Chief Executive at Macmillan Cancer Support, says:

“People with rarer cancers often feel incredibly isolated and lack the specialised care they need. They have a worse patient experience, worse survival rates and often poor access to support. This is not good enough.”

“It is vital the Government and NHS fully funds and implements the ‘Recovery Package’, a tailored support programme, recommended in the Cancer Strategy for England. This will ensure people with cancer get the help they need before, during and after treatment and give rarer cancer patients  the best possible chance of living well with their disease.”

Professor Julia Verne, Head of Clinical Epidemiology at Public Health England, said:

“Less common cancers account for over half the cancer deaths in England. Our work with Macmillan on understanding who is affected by which cancers helps us to assess where the burden lies so we can better support people, particularly those who feel isolated because they are unable to speak to someone suffering from the same condition. And, of course, support the NHS to provide the best possible treatment and care.”

Some examples of the type of support included in the ‘Recovery Package’ are access to a treatment summary, sent to the patient’s GP so they can monitor for any potential consequences of treatment, access to follow up care in different formats and education events to help cancer patients spot signs of recurrence.

Macmillan’s report ‘The Rich Picture on people with rarer cancers’ tells the unique story of the numbers, needs and experience of people living with a range of rarer cancers.

Source: Macmillan