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Today is Rare Disease Day. The aim of the day is to raise awareness about rare diseases and their impact on people’s lives. In this blog, information development nurse Ali explains some key facts about rare cancers.
What is a rare cancer?
A rare cancer is a cancer that is diagnosed in fewer than 6 in 100,000 people a year.
Rare cancers are more common than you might think
About 1 in 5 cancers (22%) diagnosed in the UK each year are rare cancers. There 198 different types of rare cancer.
Some rare cancers are much rarer than others
Rare cancers include some cancers you may have heard of, such as thyroid cancer, which affects about 3,500 people in the UK each year.
But there are also lots of very rare cancers that most of us haven’t heard of. Some of these affect fewer than 10 people a year.
There are different reasons why a cancer might be rare:
Having a rare cancer can bring extra challenges:
Where you can get help and support
Your cancer team are the best people to answer any specific questions you have about the cancer or your treatment. They can tell you if there are patient organisations for the type of cancer you have.
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. Cancer52 is an alliance of over 80 patient organisations for less common cancers in the UK.
Some patient organisations have online communities where you can read other people’s experiences, ask questions and share how you feel. Macmillan’s online community has groups for several rare cancers.
Check our website for information on many types of rare cancer. It also has general information on coping with cancer such as coping with side effects or symptoms, how to deal with work or money worries, and how to talk with family and friends about cancer.
If you can't find information on the type of cancer you have, the website Orphanet may be helpful. Remember that there might be other names used for the type of cancer you have. This can be helpful when you are searching for information.
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We're with you every step of the wayThe 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.Comments? Feel free to add them below (you need to be logged in).Keep in touch Follow Macmillan’s cancer information team on Twitter @mac_cancerinfo
Maybe it's just the way it's reported now, but when my brother was diagnosed with cancer at the age of 18 back in 1975 cancer seemed fairly uncommon especially in young people. He died in 1976 after the surgery, chemotherapy and radiotherapy, pretty much the same treatment on offer today, 40 years later. Smoking was allegedly the biggest cause of cancer back then, we have seen a major reduction in smoking over the decades yet cancer is on the increase. As a friend remarked recently " it's not a disease anymore it's a bloody plague " , so what is the main cause now whatever it is the treatment is getting more like an industry, many jobs would go if a cure is found. Just a thought, probably get deleted
As a teenager in the 70's, i lost a couple of people close to me through cancer........
since then, for me, cancer has played a major part in the loss of family and friends for me, most recently my beloved husband, so yes, sometimes you have to wonder!!!!!!
Hello. Thanks for your comments. It’s always hard when you have seen family members and friends die from cancer. There are over 200 different types of cancer, and they are all treated in different ways. We know a lot more about cancer than we did 40 years ago and treatments have come a long way too. For example, there are many more drugs available now and more are being developed all the time. There is more known about causes too, although in many situations we still don’t know why a person will have developed a particular type of cancer. If you have any questions or would like to chat, please contact the Macmillan Support Line on 0808 808 00 00 Monday to Friday 9am to 8pm.
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