Getting information about a rare cancer

Getting information about a rare cancer can be difficult. You may want information about the cancer to help you make the best decisions. You may also need information and support to manage symptoms and cope with practical issues like finances.

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. Some patient organisations have online communities where you can read other people’s experiences, ask questions and share your feelings. Macmillan has its own Online Community, with groups for some rare cancers.

The Macmillan website has information about many types of rare cancer. We have also listed some other websites you may find helpful below. If you can’t find the information you are looking for, you could call our cancer support specialists free on 0808 808 00 00.

The internet can be a source of good-quality information, but there are many sites with unreliable and misleading information. Ask your cancer team if you are not sure about something you read online.

Getting information and support

Having information about the type of cancer you have and its treatment can often make coping with your situation easier. But getting information about a rare cancer can be difficult. You may want to know as much as possible about the cancer and its treatments to help you make the best decisions. You may also need information and support to manage any symptoms you have and cope with practical issues such as work and money.

The first people to talk to are your cancer team at the hospital. They know the details of your situation and can tell you about plans for treatment. They can help with emotional support and put you in touch with people who can help with practical issues like finances.

There is information about many types of rare cancers on this website. If you can’t find what you are looking for, you can also call our cancer support specialists free on 0808 808 00 00.


Patient organisations

There are patient organisations for many rare cancers. These can be a good source of information and support. Patient organisations may know about new treatments and research trials that are being run. They may also have contact with the leading specialists for that cancer in the UK. Some patient organisations have online communities where you can read other people’s experiences, ask questions and share how you feel. The Macmillan Online Community has groups for several rare cancers.

Your cancer team may be able to tell you if there is a patient organisation for the type of cancer you have. You can also check our organisations database for patient organisations.


How general cancer information can help

It can be frustrating and isolating if there is not a lot of information about the type of cancer you have. But there may still be a lot of information that can help you and give you support. Whatever type of cancer you have, you may have questions about coping with side effects or symptoms, how to deal with work or money worries, or how to talk with family and friends about the cancer. Your cancer team can help you with these issues.

I was going to turn radiotherapy down because it didn’t seem possible to manage without earning a living. But my Macmillan nurse helped me get the benefits I needed.

Barbara


Using the internet

The internet can be a source of good-quality, evidence-based information. But there are also many sites with unreliable and misleading information. Always ask your cancer team if you are not sure about something you read.

Here are some tips for finding reliable information:

  • Look for websites of patient organisations and well-known charities.
  • Look for sites which end with .org (not-for-profit organisations) or .gov (government-run).
  • Look for the Information Standard logo if the website is based in the UK. Organisations that are members of the Information Standard are audited to ensure they produce high-quality information.
  • If you find the same details on a few different websites, it is more likely the information is accurate.
  • Be wary of websites offering cures or that ask you to buy products as treatments.

Our website has information on many different types of rare cancer.


Helpful websites for rare cancers

  • Orphanet provides information on rare conditions, including cancers. This includes treatment that may be used and patient organisations for that cancer. You can also use Orphanet to find out if there are other names used for the type of cancer you have. This can be helpful when you are searching for information.
  • Cancer52 is an alliance of patient organisations for less common cancers in the UK.
  • Rareconnect is run by the European Rare Disease Organisation (EURORDIS). It provides a space where people affected by rare diseases can connect with each other, share experiences and find helpful information and resources.
  • Rare Cancer Alliance is a US website. It was set up to share information and provide support to people with rare cancers and parents of children with cancer.

Back to Rare cancers

Types of rare cancer

We have information on many types of rare cancers. Use our A-Z list to find out more.

Treating rare cancer

If you have a rare cancer, your treatment will usually be planned by a team of specialists.