10 December 2015
Thousands of people in Scotland are currently living with a form of rare cancer, such as cancer of the heart, ear or penis.
The research, by Macmillan Cancer Support and Public Health England’s National Cancer Intelligence Network (NCIN), reveals the surprising numbers of people living with some of the rarest forms of the disease including:
• Almost 50 people with heart cancer
• Over 170 people with cancer of the nasal cavity and middle ear
• Around 380 men with cancer of the penis
• Almost 400 people with cancer of the salivary glands
• Over 700 people with cancer of the eye
• Almost 580 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.
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.
People with rarer cancers are also more likely to feel isolated and have a poorer patient experience than those with more common cancers, with one in five not given any information about support or self-help groups after diagnosis.
Fiona Gibson ,55, knows all too well how isolating having a rarer cancer can be, after being diagnosed with an extremely rare sinus cancer just weeks after her 50th birthday.
The Newton Mearns mum-of-two was diagnosed with Olfactory Neuroblastoma after going to the doctor because of a persistent blocked nose and headaches.
She found it impossible to find anyone in the UK who had the same cancer, only getting in touch with a few people with the same illness after sending out appeals on message boards in America.
Fiona, who volunteers with Macmillan offering emotional support to cancer patients in Glasgow, said: 'I didn't think for a second that my blocked nose might be cancer. I actually said to my husband that I couldn't believe I was being referred to hospital for a blocked nose and a few headaches.
'I was completely shocked when I was diagnosed and felt quite isolated. I think cancer is an isolating experience for everyone, but because my cancer was so rare I couldn't talk to anyone else who was going through the same thing or who had tips or information to share.
'My cancer wasn't even listed on most information websites and no one seemed to have heard about it apart from my surgeon and his team.
'I think cancer can be a really isolating experience for those around the person as well and they often don't know what to do or how to get support.'
Head of Macmillan Cancer Support in Scotland, Janice Preston, said: 'People with rarer cancers often feel incredibly isolated. They can have a worse patient experience and often poor access to support.
'Treating someone with cancer isn't just about surgery or drugs. Cancer can impact on every aspect of someone’s life and the effects can last for years after treatment ends, especially if they don’t get the support they need to help them recover.
'That’s why every cancer patient in Scotland must be offered a Holistic Needs Assessment, an assessment that asks them about their emotional, practical, financial and medical needs.
'This must be followed by putting in place a tailored package of support, whether that’s access to counselling, benefits advice or help caring for themselves at home.'