To be an exceptional responder, you must maintain hope that treatment will work for you, even if it rarely works in patients like you. My concern about success stories like mine and Ella Remmings' is that some people draw the wrong conclusion from stories of exceptional responders.
I am NOT suggesting that as long as there is a sliver of hope that treatment can help, all patients should keep doing treatments. Just because you can, it doesn't mean you should.
For some patients, the price of holding on to hope of improvement is too high. They are not willing to risk receiving treatments that may disable them without extending their life at all, worsening their quality of life in what time they have. They are not willing to risk possibly shortening their life, compared to if they switched to compassionate end-of-life care and optimized their time off cancer treatment.
The answer to "When is it time to let go of hope that treatment can help?" is found through informed decision making. You have to weigh all the pros and cons for you of...
- receiving treatment with a slim chance of improvement
- stopping anticancer treatments and receiving expert comfort care.
In many cases, the hope of being an exceptional responder is worth it, whatever happens. For those patients, maintaining the possibility of treatment-induced recovery trumps everything.
In other cases, the price of preserving that possibility is too high.
Healthy Survivors obtain information, guidance and support to make the best decision.
[Talking About Phase I Trials is a 50-minute presentation for clinicians in which I discuss the pros and cons of choosing between Phase I and comfort care.]