Chemo–What we expect versus what we get…

Was browsing this blog that I really like, and saw this report;

Most falsely believe chemo is curative
According to a study in the New England Journal of Medicine although chemotherapy is the primary treatment for patients with lung and colorectal cancer, it is not curative.

In an American national survey of 1193 advanced-stage patients, 69% of patients with lung cancer and 81% of those with colorectal cancer misunderstood the intent of chemotherapy, mistakenly believed that chemotherapy might cure their disease.

This seemed a little crazy to me, so of course I looked up the original New England Journal of Medicine article.  If you are feeling geeky, you can read it here:  NEJM Article. (It should download as a PDF.)

As you might expect, the rate of misunderstanding was greater within non-white ethnic groups. I’d guess perhaps there were some language barriers (doctors often throw around the term “palliative,” and for a long time, I wasn’t sure what “palliative” really meant). Also, the way serious illness is treated varies by culture.  BUT the rate for white (and I assume English as a first language) patients who thought chemo might cure their Stage 4 colorectal cancer was still 74%, which is high.  Consider: For every demographic, more than half of patients with a terminal illness mistakenly believed chemo treatments might cure them.

And, as you might also expect, the rate of misunderstanding among patients who had lower levels of education was slightly greater…but here again, even among patients who had a college degree or higher 75% still thought chemo might cure their Stage 4 colorectal cancer.

The article brings up several issues to consider and the researchers offer up ideas why this might be. I was interested in the idea that while the oncologists do communicate the truth of the situation to the patients, there tends to be a very quick transition from discussion of the prognosis to discussion of treatment.  I have experienced this myself, where a doctor–I think with all good intent– quickly steers away from the emotionality of a diagnosis, and toward the logistics of treatment.  As soon as we can start talking about the pros and cons of various options and setting up a schedule etc., it starts to feel like we are “doing something.” This can be comforting and work as a coping mechanism to get you through that first appointment, but the authors here (based on yet another study ) propose that this focus on treatment can lead to false optimism–and I have a tendency to agree.

I can imagine there is a great temptation to bolster a patient’s morale. And I even believe that good morale can help extend someone’s life…but this kind of misunderstanding ultimately takes control from the patient. 

If a chemo is going to extend your life by a few months, but you’re going to feel terrible for much of that time, do you want to it?  It seems like people should get to make that choice.  People should also have time to come to terms with the end of life, to do what things they can to put their affairs in order.  Finally, for those who are truly committed to trying to beat the odds– given the information that conventional means are not likely to cure they might want to try alternative means to prolong life–be it diet, meditation or whatever. And regardless of outcome, it could be argued that a by-product of these alternative practices could be a better life–or a more peaceful end of life.


In February of 2003, a few months after my cancer diagnosis and surgery, I attended a cancer retreat in the Yarra Valley outside Melbourne, Australia.  It was an amazing ten days, that helped me transform my cancer experience into something that had value and meaning for me.  Part of what made the experience amazing were my four roommates. We were all under forty, among the youngest of the larger group.  We’d all experienced a life-threatening illness, and yet when we started talking at night, it could still seem like a slumber party! But while four of us were considered cancer-free after our surgeries and treatments,  that was not the case for Lisa.  She carried a burden greater than ours–the knowledge that cancer had already spread to her spine and her liver.  They’d already taken her uterus, and one arm was swollen with lymphedema.  She had endured many of the outcomes I most feared… and at the same time, she modeled for me how alive and vibrant a person could be even in the face of such feared outcomes.

Roomies at Gawler 2003Lisa (in the striped shirt) was not fearless, but she was fierce.  I saw her break down and cry at night, and I saw her wake in the morning newly determined to do everything in her power to live  more years–often citing her son, who was just a toddler at the time, and her daughter.  She did proud by her goals, surviving for a full decade since our time together.  Yesterday I woke to an email saying that she had died.

In my last post I talked about I’ve been struggling recently, to make decisions, to find meaning in the things that I do. Remembering Lisa is, for me, also about remembering perspective.  The worries I have currently are, in a way, a luxury. The kind of worries one has when one has health and the likelihood of a future. I am grateful for the time I have to figure things out, grateful for pain-free days, grateful for all the beautiful things and people in the world around me.  I’m grateful for the chance I have to try, again and again, to put experiences into words in a way that does them justice. In this moment, I am blessed.