One of the most important lessons I’ve learned being diagnosed with a rare cancer is that it is really important to be your own advocate. It is important to research and learn about your disease (as difficult as it may be to find information) and to seek out those physicians and oncologists who have treated many cases of your particular cancer. Many good oncologists and physicians may not have experience with rare cancers.
I have been in touch with 700 patients diagnosed with appendix cancer and am all to familiar with cases of misdiagnosis (one woman was treated for ovarian cancer for 5 years before she was correctly diagnosed with appendiceal cancer- she lost her battle). I have also communicated with many who received incorrect treatment initially and only sought treatment with rare cancer specialists when their cancer recurred, often in advanced stages; by then their choices were more limited than if they had sought specialized care initially.
One good resource is NORD, the National Organization for Rare Disorders, though that list of rare diseases is not complete (appendix cancer is not listed there, though Pseudomyxoma Peritonei (PMP), a syndrome caused by mucinous appendix cancers is listed). Other good web sources are the National Cancer Institute or National Institutes of Health.
Many rare cancers also have on-line forums, and while you need to be cautious of the information posted on these boards, often you can find good information about disease treatment and specialists from patients who share your diagnosis.
The best thing you can do is to arm yourself with good information and to compile a written list of questions to ask physicians when you seek opinions for treatment; often it is good to get more than one opinion on treatment protocols. You can self-refer for a second opinion, the request for a referral to a specialist does not always have to be made by your attending physician.
In my case, I sought three opinions before agreeing to treatment, and though it delayed my treatment for a month and a half, it was a good thing, as I in the end treated correctly for my disease. A great article to read about experiences others have had when diagnosed with a rare cancer is Cure Magazine’s Rare Cancer Survey, published in April of 2009. Being aware of the pitfalls others have faced may help you avoid your own as you seek treatment for your rare cancer.