CancerGuide: Some Advice on Dealing With a Rare Cancer

The first thing to consider is whether your cancer is really all that rare. One of my doctors told me that kidney cancer was "rare". In fact, it is not one of the more common cancers, and it would be perfectly reasonable to call it rare, but tens of thousands of people get my type of kidney cancer each year. It turns out that there are dozens of clinical trials for patients with kidney cancer and thousands of references in the medical literature. There is no difficulty finding information on this cancer. On the other hand, I once helped someone with a "renal carcinoid" carcinoid" research his disease. This cancer is truly rare with well less than 100 cases reported in the medical literature. If there is a PDQ State of the Art Treatment Statement for your cancer in Cancer.gov, it is probably not truly rare.

If you have a rare cancer, the chances are pretty good that your doctor has never treated even a single case of it, and doesn't really know very much about it. This means that the chances that you could gain a major benefit by researching your cancer are much greater than usual. So the first piece of advice is to research the technical literature in detail.

Search the Medical Literature

If the cancer is really very rare, you may find very little about it in the usual online sources such as Cancer.gov or OncoLink. The best strategy in this case is to use MedLine to search the world's medical literature. Even MedLine may have less information than for most cancers. This may actually make the job of searching easier since the usual problem is sorting through an overwhelming amount of information. You may have to rely on case reports and case series rather than extensive clinical studies.

Find the Experts

There may be an expert in your cancer somewhere out there, so the second strategy is to try to find such an expert. The best way to do this goes hand and hand with searching the medical literature. Those who publish papers on your cancer are some of the few doctors who have actual experience. If you search the medical literature you'll find out who these doctors are.

Keep in mind that not all authors of medical journal articles are medical doctors, some are scientists or even statisticians. Often doctors who don't normally see patients like pathologists and diagnostic radiologists have their names on papers. You want to contact a clinician - a doctor who sees patients. It's often not clear who has what role just from the abstract. If you get the full paper, either on line or from a library you can usually figure out which authors are clinicians. If you do get ahold of someone who isn't a clinician - they can probably refer you to the appropriate co-author.

Every reference you find in MedLine will have the names of the authors and probably other important information which will help you track them down, including:

The information in MedLine almost always includes the name and location of the institution or hospital for at least one author (and maybe more than one).
The e-mail address for one or more authors is often included, especially for more recent articles.

Once you have this information there are several routes you can take to get ahold of the doctor:

Virtually every hospital and research institute has a web site. You can find the web site by searching for the name of the institution with a web search engine like Google. If the hospital name is very common like "St. Luke's" you may need to add the name of the city in which it's located to narrow down the search. You may also need to try variations on the name like "St. Luke's" and "Saint Luke's". You'll often find a directory with contact information on the insitution's web site, but if not, there's always a phone number, so just call them.
If you have the name of a US Doctor and the State in which they practice (from the location in the MedLine abstract) you can almost certainly find their contact information through the American Medical Association's Doctor Finder.
The Cancer Information Service at 800-4-CANCER has a physician directory and should be able to help.

Maybe Your Cancer is Similar to a More Common Cancer

Your rare cancer may be similar to a more common kind of cancer. If so, you can learn a lot be researching the options for the more common kind of cancer. For instance, one of the ways I helped my friend with the renal carcinoid was to research the much more common small bowel carcinoid. Another friend I helped had a rather rare cancer called peripheralneuroepithelioma. It turned out that this cancer was usually treated similarly to a more common cancer called Ewing's Sarcoma. So I was able to learn a lot by also researching Ewing's Sarcoma.

Clinical Trials for Rare Cancers

There are often few options in clinical trials available for patients with a truly rare cancer, because most clinical trials require patients to have a particular kind of cancer. Phase I trials, on the other hand, often accept patients with any kind of cancer, as long as the cancer is advanced without any remaining good treatment options. Unfortunately, phase I trials overall have a very poor success rate. But there are exceptions, and careful research might uncover a trial with some promise.

CancerGuide Info on Clinical Trials

Rare Cancer Websites and Organizations

This isn't about websites for specific rare cancers. I have links to some of those in my Specific Cancers page. Instead, this section lists websites which are about dealing with rare cancers in general.

The Rare Cancer Alliance

The Rare Cancer Alliance appears to be the creation of a single dedicated patient, Sharon Lane. It has extensive original content. Much of it isn't really specific to the problem of rare cancers but more applicable to cancer in general - but then rare cancers are still cancers. After poking around here you will leave you didn't have before. An approach, a support groups, a web page, some understanding... [Reviewed January 2004]

Rare Disease Organizations

These organizations cover all rare diseases - not just cancer.

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) maintains a database on rare diseases including rare cancers. Their definition of "rare" is pretty liberal, so cancers like kidney cancer, that are less common, but not truly rare will also be listed. On the other hand, there are so many rare conditions that they don't have information on all of them. Their database is searchable from the NORD Web Page.

Contact Info:

National Organization for Rare Disorders

55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
(800) 999-6673
(203) 744-0100

NIH Office of Rare Diseases

The Office of Rare Diseases is part of the US National Institutes of Health . Like NORD, this covers many cancers which are not truly rare, as well as many more which are. Their rare disease list links to useful information from several databases for each disease, and they have a contact phone number for more personalized help. Definitely worth a visit.

OrphaNet

OrphaNet is an international multilingual resource on rare diseases from France, with information on a huge list of diseases. They've got translations into at least five six different European languages which is quite an accomplishment considering the size of their site. The quality and usefulness of the information varies considerably depending on the disease. For one, I found a complete original review with references to the medical literature, while for others, information is mainly limited to links (which can be valuable). [Reviewed January 2004]

Rare Cancer Mailing List

This e-mail discussion group is specifically for patients dealing with a rare cancer. Exactly how helps its members who presumably have a variety of different rare cancers I'm not sure, but I bet that they are used to helping people research their cancers.

To subscribe: Send a message to listserv@listserv.acor.org
Leave the subject blank, and set the first message line to:
subscribe RARE-CANCER your_first_name your_last_name

Or you can use the rare-cancer on-line sign-up form on the Association of Cancer Online Resources (ACOR) website.

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