21 - How Can I Prepare for What Might Happen Later - and Sleep Better

 If the disease progresses requiring a change in therapy, the risks, expectations and prognosis are often not readdressed with the same diligence they received early on. Many patients really don't want to know. They would rather live with outdated information than have to deal with new unfavorable information. Unexamined assumptions can misinform one's decisions.

A traditional attitude of many people is that the ends must justify the means. You need to know that cancers progress by outsmarting the original therapies which were chosen not just because they were the best but because they were the least toxic. Hence what is left are the treatments that are less effective and more toxic.  In addition everyone at this stage will be more vulnerable to the toxicities because they are already weakened by the cumulative effect of growing cancer and the toxicity of the most recent sadly ineffective treatment.

The possibility of increased toxicity may get little discussion, or be sanitized by the physician; if he thinks there is no other choice. But there is another positive choice and you're the only one who can make it; bravely consider not taking the new therapy. Perhaps the ends don’t justify the means. Perhaps the ends have no chance of being what you hope for. You need to know. Perhaps your life would be better without it.

 What matters to most people is Real Survival, a name I just made up, which is the quality of life, multiplied times the duration of life measured in days. Clearly, if the quality of days alive is so lousy such that you can’t enjoy it as you wish, then having more of it is less valuable than high quality time for fewer days. The unintended, seldom discussed reality is that most patients assume any treatment is going to lengthen their overall lifetime, Real Survival. That is patently false for most 3rd or 4th line treatments.   

 You must insist on an accurate assessment of what you can personally expect for your exact condition in terms of outcome and toxicity in order to make your best decision. Only the wisdom of your physician can give you this, not the literature or internet. Physicians are afraid of hurting your feelings with the truth. If you want it, ask for it straight up.

Even less often discussed is how expectations have changed. After a relapse, 

An assertion that a treatment is "new “can create unjustified expectations; so 

there is too much to say here- check out the book for more thoughts

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