5 Great Resources For When You Have a Rare Cancer

by GregP_WN

Typically, people associate the word “rare” with either a) a way to prepare your steak, or b) something valuable and unique. Unfortunately, that’s not the case if you have a rare cancer . Along with the usual uncertainty of a cancer diagnosis, there’s that extra layer of anxiety that comes from having something that even your doctor doesn’t fully understand.

Rare Cancer Quote

If doctors don’t know much about your cancer, what hope do you have? We get that feeling…but there are resources.

One of the first stops on your rare cancer research tour is one of the best all-around cancer research stops: the National Institutes of Health. Their Office of Rare Diseases Research has an information center on all kinds of genetic and rare diseases, including rare cancers. Pay them a visit to see if your rare cancer is listed or if they have information about living with and treating rare cancers.

Rare Cancer Bumper Bumper Sticker

ASCO’s Cancer.net has a page dedicated to finding information and support for rare cancers. It includes links to organizations specifically dedicated to rare cancers or rare diseases, including the National Organization for Rare Diseases (NORD). NORD’s website is worth a look too; their comprehensive list of rare disease information includes several cancer diagnoses and details everything from cancer signs and symptoms to treatment and support groups. Cancercare.org also has a page devoted to rare cancers, and they’ll point you to counseling services and financial support and support groups.

No matter what type of cancer you have or how stumped your doctor is by it, there are others out there who know what you’re going through. So don’t rule out connecting with others and sharing your experiences. Some of the sites above offer links to support groups; you might also try the Rare Cancer Alliance , which offers a lot of patient forums for a wide variety of adult and childhood cancers. Chances are good that if you can find people with the same rare cancer as you, they’ll be willing to talk. People dealing with rare diseases—not just rare cancers—are usually eager to connect because they know how hard it can be to find good information. They may also be able help with one of the other tricky aspects of this journey: Finding a doctor who has experience with your rare cancer. Even if you can’t use their specific doctor recommendations, they may have some tips that can point you in the right direction of someone who can help.

Coping With A Rare Cancer 2

Of course, if you’re reading this article you’ve already found a great resource! The WhatNext community is full of ideas and insights, and we’re all here to help each other. But we aren’t mind readers…so speak up and ask! What questions do you have? And how can we help?

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