1- Treatment issues surrounding rare cancers are different than for more common cancers.
2- Increased research on rare cancers can provide additional benefits for the more common cancers.
Common cancers often have different, well-established treatment methods. Rare cancers are not blessed in the same way, they do not have multiple, established or proven treatment protocols. This means that when faced with a rare type of cancer you and your doctor need to behave differently than people with common cancer types.
Your doctor will need to actively work with other doctors, even those at other cancer facilities. Your doctor will also need to become very familiar with whatever literature, where ever it comes from, that might be appropriate to try to determine what might be your best treatment options.
The lack of standard treatment protocols for rare cancers is very concerning. Often, a doctor is forced to make things up as they go along through the treatment process, a very concerning reality.
Given this, it is best if you are diagnosed with a rare cancer that, if you are able, you go to a large academic center for your treatment.
The research and medical communities need to find a way to come to grips with the special problems faced by people with rare cancers. They need to find ways to gather as much data as possible, track those afflicted so they can begin to understand the cancer’s natural progression and how it responds to specific treatments.
Rare cancer research will provide us with other, additional benefits. What is learned can often be translated into a better understanding of other cancers, the underlying genetics, the immune system, and treatment resistance.
Joel T. Nowak, MA, MSW wrote this Post. Joel is the CEO/Executive Director of Cancer ABCs. He is a Cancer Thriver diagnosed with 5 primary cancers - Thyroid, Metastatic Prostate, Renal, Melanoma and a rare cancer, Appendiceal Cancer.