You may have a belief that rare cancers are relatively new to the scientific community, but they are not. Examples of rare cancers go back centuries. In the Textbook of Uncommon Cancer, second edition, published in 1999 by Wiley Publishing, you will see that there are many additional rare cancers listed since the first edition was published in 1988. Does that mean that there are more rare cancers occurring or does it mean that more variants of cancer are being detected through the microscope? I tend to believe the latter. I believe that as science, pathology, and technology improves; many more rare cancer variants will be discovered.
This section of the website will give you some information on the special needs of researching your cancer. The very first thing that will help with your research efforts is to make sure that you truly have a form of rare cancer. I have had many people approach me who were told that there cancer was rare; only to find out that it is not considered to be in a rare classification. It may just be a subtype of a much more common cancer. And I have even had a few people approach me who believed they had a rare cancer, when they actually had a benign disease. I would advise that you talk to all of the medical professionals that you have seen about your cancer diagnosis. Ask them if your cancer is considered to be rare and if they have any literature on it. Also, ask them to give you all the names that your rare cancer might be described as in research literature. For example, mine is adenoid cystic carcinoma, aka (also known as) cylindroma, aka cribriform cancer, aka adenocystic, aka AdCC, aka ACC; with the variant AdCC/B for the breast, and AdCC/M for metastatic disease. If you choose to do research, you will want to do it on each one of the names in order to acquire as much information as you can.
I am contacted, on a daily basis, by people who are looking for a physician who has treated their rare cancer in the past. They do exist, although they are as rare as your disease in some circumstances. Hopefully this website and it's constant evolution will make more of them known to potential patients. The most important element of finding a professional to treat your rare cancer, is that you find one who will allow you to be a part of your treatment team. A practitioner who will let you bring them research documents and will show an interest in them is a real asset to your treatment team. If you find one who is actually willing to do the research on your rare cancer for you and share that information; you will have found a sought-after treasure, indeed!
Please keep in mind that the primary purpose of this website is YOU. We hope that you joing our forums and share your information. Hopefully that will help this site to keep evolving and offering the information that the newly diagnosed require. I would be remiss if I did not tell you that I know what it feels like to be diagnosed with a rare cancer. I know what it feels like to have each member of my treatment team tell me completely different theories about my disease and suggest entirely different treatments. And I know what it feels like to know that I will have to be responsible to wade through this confusion at a time in my life when I barely have enough energy to brush my teeth in the morning. You are not alone. There are many of us who have traveled this incredible journey ahead of you....