Being diagnosed with cancer is one of the scariest, most isolating experiences most people will ever go through. Following any cancer diagnosis, you might feel very alone, like nobody understands what you’re facing. But if you’ve been diagnosed with a rare cancer, these feelings of isolation can be even more difficult. This blog contains some tips for coping with a rare cancer, which we hope will help.
You can use our online community to talk to others who also have cancer. There are lots of groups, and many of them are for specific cancer types, including some rarer cancers.
Talking can help you let out your fears and worries and be honest about how you’re feeling with those who understand. Even if they don’t have exactly the same cancer as you, talking to someone who’s going through something similar can be helpful.
We have lots of cancer information on our website, including web pages about some rarer cancers. Use the search function on our website to search for your cancer type, or have a look in our cancer types A-Z. You can also find out more about the treatment you’re having and about living with and after cancer. If you can’t find the information you need on our website, call the Macmillan Support Line on 0808 808 00 00 or email us, and one of our nurses will be able to help.
Your cancer doctor or nurse should be able to give you information about your type of cancer. Don’t be afraid to ask them anything you need to. Writing down any questions you think of in a notebook can help you remember to ask them during appointments. You can write down the answers too – or ask someone else to do that for you during your hospital visit.
You could also ask your cancer doctor or nurse if they can put you in touch with other people who have the same type of cancer as you.
The Rarer Cancers Foundation offers support and information to people with rare and less common cancers. They also raisee awareness and campaign on behalf of people with rarer cancers.
Cancer.Net has an organisation search on its website, where you can select your particular condition and find organisations that can give you support.
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.
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