I need to warn you that most of this page will be my own personal opinion on the concept of cancer prognosis. If you are looking for detailed information on this subject, you may want to visit this web page NCI - Understanding Cancer Statistics & Prognosis
Prognosis is a statistically formulated indication of what you can expect for your particular cancer. It may be considered a prediction of your survivability also. Your physician will base your prognosis on your cancer size, grade, stage, type, growth rate, location, metastasize, whether you had clean margins, and past statistical data for your particular cancer. Also, your age, general health condition, availability of proven treatments, and your attitude will be considered in the equation. Theoretically, if there were a large number of people, all in the same identical situation; then statistically the probabilities of cure, remission, survival and death can be predicted. But this theory does not consider the individual rare cancer patient in the equation and the small numbers that may be involved. Well founded statistics are usually done on larger numbers.
In order to explain how I derived my opinion on prognostic theory for rare cancers, I need to share with you my limited knowledge of cancer statistics gathering. In 1998 when I came to the web to find information on my rare cancer, I was looking for some statistical data to prove to me whether I would live or die. I am mathematical in nature, so I started to gather cancer statistics for my cancer in the United States. I found that cancer incidence reporting is not mandatory in all states; or in all institutions or areas of a state. Some cancers are reported under a ‘miscellaneous umbrella’, instead of under the name of the rare cancer type. The number of cases of my cancer for the year 1995 were a questionable 33, dispersed throughout the US. That is a small number and most likely this is why any research on my cancer has been done under the label of "retrospective study". That is a study that tries to go backwards and tries to follow the patients diagnosed in previous years. It does not include those patients who could not be 'lost' for one reason or another. It includes all treatment modalities. It is not based on following patients that undergo a particular treatment, through a specific period of time.
I have had prognostic theories about my cancer quoted to me by health professionals that were extremely varied in opinion. I have learned to ask for the scientific research papers that will support the theory being quoted to me. Statistically, if you are free from cancer (in remission) for longer than 5 years, you will be considered cured. Sadly, some rare cancers, like my own, grow so slowly at times, this five-year follow-up is not long enough. I have found that consistent statistical information and follow-up of rare cancer patients is lacking, in many cases.
I have many friends who were given a short time to live with their cancers and they lived many years. On the other hand, I have known people who were given a long prognosis and their disease progressed rapidly. I believe that in many cases there are not enough numbers of the particular rare cancer to prove or disprove prognosis theories. Live your life to the fullest for as long as you can, even if that turns out to be 100 years!