Submitted by Dr. Robert F. Lane on
Cancer rarely takes a life suddenly, so most everyone will get a homestretch but few recognize when they are on it. No one looks forward to it, but if run well, it can be an extraordinary time that no one would want to miss. You can get up from the table after the main course, but why skip dessert if you don’t have to.
Hopefully, the homestretch is a long way off, but it will pose challenging questions and the Dragon will be there messing with your head; you had best start thinking about it now. If you do, your readiness will afford you a measure of peace and grace for the rest of you run. And if you consider how to make the tough homestretch decisions now, it will actually help you make other pesky decisions in the interim.
Those in denial will blow by this suggestion.
If the disease relapses a second time, i.e. is found to be growing despite a second course of treatment or combination of drugs, it means for most, but not all cancers, that the homestretch is not far off. Even though a third or fourth type of treatment is unlikely to significantly lengthen your life, you are likely to be offered it because many doctors don’t know what else to do. So you must ask, "What is the average prolongation of survival for an average patient with my stage of my disease with the treatment proposed? “
Get ready for all kinds of hedging. The precise information you need is hard to come by. The doc usually can't just look it up, though he can certainly give you his best educated estimate. Because there are different types and grades of cancer, there are exceptions to what I’m going to say next, but they are only exceptions. If you have metastatic cancer that has failed at least one treatment regimen and is therefore usually incurable, expect his answer about the prolongation of survival by new treatment to be measured in weeks to months. Failing one regimen usually means incurability and failing two means chances of much further benefit from any treatment are small – usually.
Breast cancer and lymphomas and a very few others cancers are exceptions to this rule, but the same issues will arise eventually for them as well, so always ask the question. The truth is often so shocking that physicians won't offer it unless you ask - and you need to know. Both the length and the quality of the time you have left hinges upon your next decision. They may be both longer and better if you say no to another treatment and you can only do that if you have all the available information and done some thinking and maybe praying ahead of time.
At this point, be especially wary of the lure of experimental therapies and apply the same rigid questioning. I have been asked, “What is the best way to press the doctor for truthful but negative information? Sometimes there exists a willful bias towards hope in the physician.” Simply say, “Doc, I need to know the worst case. Give it to me straight.” And be wary if he/she ever uses the word “maybe” and beware of what you interpret that to mean. Instead ask.
Beware if the word “maybe” is ever used that you make certain to get what is meant clearly defined. Otherwise, you are likely to erroneously ascribe all kinds of unrealistic expectations to the word.
Here is why this is all so important. Frequently, when I was having this conversation with a patient, their average survival was only three, six or twelve months. Often the best treatment option could only prolong their life an average of a few weeks or a few months. We know that when there are three, six, or nine months on average left, the last month will be unpleasant and, most likely in bed. The one to two months before that will likely be problematic, and at least mediocre, with poor appetite, energy and ambition compelling most to stay near home and the clinic. However, the first few months are going to be the very best and will be the last good months remaining for good times, celebration and travel. They may not be as good as a patient would like, but they will be the best that is left.
The only way for the patient to improve the quality of their live is to stop treatment and thereby avoid the side effects, as well as tests and clinic visits, which become no longer necessary. Most who stop treatment will start feeling somewhat or occasionally a lot better for a while, as the cumulative bad effects from previous treatments wear off. This holiday will last until the inevitable cancer symptoms recur, usually weeks to months down the road.
The only situation in which patients miss out on this holiday is when they don't quit soon enough. If they go hopping only on their right foot, hope, choosing to drag their left food, acceptance, they will endure the side effects of ineffective treatment and postpone stopping until they are actively dying with all kinds of symptoms from the cancer and have no other choice. Most good doctors can sense when a treatment is no longer working, but if patients are feeling okay, they don't want to hear the bad news. Many doctors delay the bad news and continue worthless therapy to offer hope, albeit false, until the patient has more symptoms and their body tells them the truth – albeit too late. It is easier for a patient to hear the word “hopeless” from a doctor when their body is already feeling terrible, but at that point they have missed their holiday off treatment and everything they could have done with it. It can be such a precious time. Don’t miss it.
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