Newly diagnosed with a rare cancer

Monday 13 January 2020

I recently wrote a blog on tips aboutcoping with a new cancer diagnosis. However,  there are additional aspects to think about, depending which cancer you have.

Many cancers are better known, and there is an abundance of information and support available for the more common cancer groups. This doesn’t always make things feel any less scary or emotional, but usually there will be other people around who have a similar cancer, which can help reduce the sense of isolation.

Being diagnosed with cancer may be a shock at the best of times, but perhaps even more so when it’s an unusual cancer.

What is a rare cancer?

‘Rare cancers are generally classified in the group of rare diseases which is defined in the European Union as diseases with a prevalence of fewer than 5 cases out of a population of 10,000’ (Rare Cancers Europe).

According to Cancer Research UK, a cancer is defined as rare, if it starts in an unusual place in the body, the cancer is an unusual type and may need special treatment, or it is not one of the common types of cancer. In Europe, one in five cancer cases are classed as rare.

A feature of having a rarer cancer means it can often take a while longer to be diagnosed, and that can leave weeks of uncertainty and anxiety. Recent research has shown that people with rarer cancers often have three or four consultations with their GP before they are referred onto a specialist, and this can lead to frustrations at delays in diagnosis.

What happens next?

Sometimes the doctors themselves may have little information to go on, and you may find you’re referred to a specialist hospital in another geographical region for some of the diagnosing and treatment. Ask questions – (it’s not perceived as nagging) – your concerns are understandable. How long before you get a definitive diagnosis, and what will the treatment options be. Where would your treatment happen, and what information can they offer on the cancer specifics. With a rarer cancer, it sometimes ends up being that you become the ‘expert’ patient, as you may have to be explaining it to others in more detail.

Once you have a defined diagnosis, check out where you can find out more about it. Cancer Research UK has a useful alphabetical list, ‘cancers by name’. Meanwhile, Macmillan Cancer Support have produced a list of rarer cancers. ( As always, you’ll find links to any useful resources at the end of my blog).

It can be demoralising sitting in a clinic or discussing your cancer with friends and family, when no-one else has even heard of it. Finding others who understand what you are your family are going through can help relieve the sense of isolation. In an ideal world, you will find others through forums and support groups who have what you have. The international organisation, Rare Cancer Alliance has an online forum which may be worth a look.

However, there is considerable mutual support available in other cancer group settings. If you have a cancer in part of the body, which will be having similar treatments to the more common types of cancer, they can be very helpful. The core themes that many people with cancer face can be unifying in any cancer support setting.

Within our Maggie’s Centres, for example, you can find information, cancer support specialists who will listen, and guide you to programmes which will help you feel part of a group, and be able to take control again. In addition, you’ll meet other people who are facing the daily challenges of living with cancer - and it can be reassuring to find what you’re feeling is normal, and can be manageable.

Additionally, introducing yourself in a conversation post on our online forum gives you contact with a wider audience, and the opportunity to link up with others who may have the same cancer.

Don’t despair because you have an unusual diagnosis – many of the tried and tested tested treatments for other more common cancers will be similar to what you will be offered. Ask about clinical trials, and check what clinical support you will have – particularly a clinical nurse specialist, who can answer questions and concerns and liaise with your consultant and other teams involved in your care.

Warm wishes


Original blog written by Sue Long, Cancer Support Specialist, June, 2016 (updated Sept 2019)


About rare cancers    - Rare Cancers Europe

Rare cancers    -  Cancer Research UK

Rare cancers    -  Macmillan Cancer Support

Types of rare cancers   -   Macmillan Cancer Support

Rare Cancer Support

Rare cancer types - specific patient support and organisations and sites  - Rare Cancers Europe

Finding information and support resources for rarer cancers  -  Cancer.Net

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