February 28th is Rare Disease Day. It aims to raise awareness about rare diseases, including rare cancers, and the impact they can have on people’s lives. About one in five people with cancer in the UK (20%) have a rare cancer.

In this blog, editor Sadie takes a look at what rare cancers are and the extra challenges having a rare cancer can bring. We will also suggest ways of coping with these challenges if you are affected by a rare cancer. And finally, we will let you know where to get further information and support.

What is rare cancer?
A rare cancer is a cancer that fewer than 6 in 100,000 people in the UK are diagnosed with each year.

The diagram below shows the proportion of common, less common, rare and very rare cancers diagnosed in the UK:

This is a pie chart. It shows that 20% of cancers are rare and very rare. 53% of all cancers are called common cancers, such as breast, prostate, lung and bowel. 27% of cancers are called 'less common cancers' which includes cancers like bladder and melanoma.

There are 198 different types of rare cancer. You may have heard of some of them, such as thyroid cancer, acute lymphoblastic leukaemia (ALL) and mouth cancer. But there are many very rare cancers most people will not be familiar with. We have information about many rare cancers – this A–Z list has links to the different types.

Diagnosing and treating rare cancer
Having a rare cancer can mean extra challenges during diagnosis and treatment. The cancer may take longer to diagnose. This could be because:

  • the symptoms mimic other more common conditions
  • the symptoms are unusual and less well known by doctors
  • the cancer develops in a person ‘not expected’ to get cancer, such as a young adult or teenager
  • extra tests are needed to diagnose the cancer
  • the person with cancer needs to be referred to more than one specialist before the specific type can be diagnosed.

This is a quote from Harriet. She says ‘I was diagnosed with a rare type of non-Hodgkin lymphoma when I was 39. Because the disease is rare and usually affects older people, it took several months to get diagnosed.’

Finding the best treatment for a rare cancer may involve travelling to a specialist centre some distance from home. The treatment may be planned by an MDT (multi-disciplinary team) at the specialist centre and given in a hospital closer to home. Or the treatment may be highly specialised and given in the specialist centre.

If you are having treatment for a rare cancer in more than one hospital, you may want to keep a record of your treatment and appointments to help you to keep track. Our Macmillan Organiser can help with this. 

Some people with rare cancer are invited to take part in a cancer research trial (clinical trial). This means they may be offered a new treatment that might not otherwise be available.

Coping with rare cancer
Two issues people with a rare cancer may face are uncertainty and isolation. There is often less information available about rare cancers, so it can be harder for doctors to answer your questions or predict what may happen. You may also need to travel a long distance for treatment, and you may feel your family and friends don’t understand what you are coping with.

Some things that may help are:

  • talking about your feelings to someone you trust and feel comfortable with
  • talking to your cancer team or GP
  • calling the Macmillan Support Line on 0808 808 00 00
  • writing your feelings down or writing a blog about your experiences
  • making contact with others through an online cancer community, such as Macmillan's Online Community.

This is a quote from Waheed, saying ‘I found the Macmillan Online Community, where I could talk to other people going through similar experiences. I wasn’t expecting to find that. It was really helpful.’

Further information and support
Your cancer team at the hospital will know the details of your situation and are in the best position to give you information and support.

Patient organisations may also be able to offer helpful information. They may know about new treatments, research trials and leading specialists in the UK.

The Macmillan website has information about many types of rare cancer. Here are some other websites you may find helpful:

  • Orphanet provides information on rare conditions, including cancers.
  • Cancer52 is an alliance of patient organisations for less common cancers in the UK.
  • Rareconnect provides a space where people affected by rare diseases can connect with each other, share experiences and find helpful information and resources.

If you can’t find the information you are looking for, speak to your healthcare team or call our cancer support specialists free on 0808 808 00 00.

To see what else Macmillan's cancer information team has been blogging about, please visit our blog home page! You can subscribe to receive our blogs by email or RSS too.

We're with you every step of the way

The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00.

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