In our latest blog, our editorial assistant Maxine looks at rare cancers and what people can do when they need more information and answers to their questions.

Being diagnosed with any type of cancer is one of the scariest and most isolating experiences most people will ever go through. This can be even worse when it is a rare cancer. This blog is about how to cope with a rare cancer and where to go for support, information and advice.

If you are diagnosed with a rare cancer, there are a few things you can do to help you feel more in control:

Ask questions

It can be hard to find information about rare cancer types. Because they’re uncommon, there may not be very much research or information out there. So don’t be afraid to ask your doctor any questions that you may have. This can be about anything from treatment and outlook to your worries and feelings. Write down any questions and take them to your hospital visit. You can then write down any answers. 

Find out more

We have lots of information on our website, including web pages about many cancer types. Use the A-Z cancer types tab to search. You’ll be able to find general information about treatments, as well as living with and after cancer. If you can’t find the information you are looking for, call the Macmillan Support Line on 0800 808 00 00 or email us and one of our nurses will be able to help and answer any of your questions.

There are other websites where you might find out more about a specific rare cancer type:

Cancer Research UK has an A-Z list of rare cancers and up-to-date information on research into rare cancers including diagnosis, treatment and living with a rare cancer.

The Rarer Cancers Foundation provides information including leaflets about specific types of rare cancers. They also campaign at a government level to improve the cancer journey for people affected by rarer cancers.

Talk about it

Being told you have a rare type of cancer can make you feel very alone. Some people find it helps to talk it through with someone who understands.

Our online community is a good place to start. You will be able to find others who are having similar cancer experiences. By talking about it, you will be able to share your fears and worries with someone who can relate to you. There are a lot of groups and many of them are for specific cancer types, including some rare cancers.

The Rarer Cancers Foundation offers support and information through their helpline as well as online. Their online forums can be a great source of information and may be a way to connect with other people with the same type of cancer.

Sometimes your doctor can put you in touch with someone who has the same cancer type as you or who has had similar treatment.

We hope the information in this blog has helped you find the support you need. We’re here for everyone affected by cancer – those diagnosed, relatives, friends, and colleagues – so please get in touch if you need information or support.

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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