Submitted by Dr. Robert F. Lane on
Ask Your Doctor About Prognosis Repeatedly
Prognosis tells you what to expect in terms of length of life only as of that moment, but not quality. It will change as time passes and new information comes in, so you must ask repeatedly. Initially it estimates how long you will live if you take no treatment to give you a baseline against which you can consider treatment.
Researchers study hundreds or thousands of patients with your specific type, grade and stage of cancer and average their findings to provide estimates how long the average patient will live with or without various treatments. Your doctor will use those averages to generate you prognosis.
But you are not necessarily average so he/she can often adjust the prognosis somewhat based upon your unique circumstances. Even after that has been done you need to know that there are outliers: patients who will for as yet unknown reasons do dramatically better or worse than the averages.
There may also be new treatments discovered during your lifetime which may change your prognosis altogether. These are rare so you cannot build your plans for the bell lap on those but they are good to put in your hope chest. So ask these questions:
1. What is the average survival of someone with my stage of my cancer with no treatment at all or with the same treatments available to me?
2. What is the long term/short term survival range? Is there anything special about my circumstances that suggest I may be more toward one end of the survival range or another?
3. If my cancer is thought to be incurable, i.e., Stage IV, and my present cancer symptoms are not interfering with living my life, what difference would it make if starting treatment were delayed until symptoms appear or worsen? What would the absolute difference in the length of survival be measured in months or years?
4. If the difference isn’t much, then would a delay in treatment which allows me to go on with my life unaltered by treatment side effects likely result in otherwise avoidable symptoms that would be more difficult to control later?
Doctors speak most about RR (response rates), DFS (disease-free survival rates) and OS (overall survival rates).These are important metrics, but don’t answer the above nitty gritty questions which you need answered in order to plan your life and bell lap. The RR is the rate that a given treatment will result in tumor shrinkage as either a PR (partial response, which is 50% tumor shrinkage), or a CR (complete response which is complete disappearance of all cancer on both physical exam, scans and blood markers). RR equals PRs plus CRs. Unfortunately CR does not equal the cure rate as we have no test to measure the presence or absence of every last cancer cell which may be hidden beyond the sensitivity of our tests and could regrow later.
The smallest tumor mass we can detect contains about 500 million cancer cells. This means there can be innumerable masses smaller than that which can go undetected with even our best scans in an anyone who has achieved a CR. Doctors start talking about cure rates only in those individuals who achieve a CR and remain in CR for a number of years, sometimes after 2 years in the case of fast-growing cancers, or after 5 to 10 years for slower growing ones.
When they can't talk about cure, they can talk about MDR, or median duration of remission. This is roughly the average time that any remission will last before new or growing cancer can be detected requiring a change of treatment. During this time one may be off treatment altogether or on maintenance medication. One must recognize that the MDR is only an average. Any individual’s remission may be shorter or longer. At least knowing the average gives one some information for planning life.
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