World Cancer Day

Today is World Cancer Day. 

The day is promoted by the Union for International Cancer Control, and was created to "raise awareness about cancer, encourage its prevention, and mobilize action to address the global cancer epidemic."

This year's theme is "United by Unique." It is meant to highlight that each of us has a different experience with cancer, but we also share some common feelings, experiences, and goals. We are encouraged to tell our stories. I am a big believer in this -- when we tell our stories, and listen to one another, we really see just how unique each of us is, but we also see just how much we share at the same time. 

So I join the UICC in encouraging you to find ways to share your story. Share with individual you know, with people who ask questions. Share it online, in support groups with other patients. Share it on the World Cancer Day website. Share it here.

The more we hear about others' experiences, the more we learn, and the less alone we feel. 

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Now, I have another personal request of you. Educate yourself.

This seems like as good a day as any to share an article and make the request.

Last week, the Journal of the American Medical Association published an article called "Understanding of Clinical Trials Among Patients With Cancer and Their Relatives." The article described the results of a survey of 578 cancer patients and 382 of their relatives, asking about their knowledge of clinical trials. 

About 18% of the survey takers had already participated in a clinical trial, and about 44% said they were willing to participate in one. Those who called themselves knowledgeable about trials were much more likely to participate than those who were not knowledgeable. Reasons for participating included potential health benefits and access to new treatments. Reasons for being reluctant included potential side effects, feeling like a “test subject,” and the risk of "getting a placebo." 

I understand that last one, because I had that discussion with my own mom when she was being treated for cancer, and she had this concern. Too many people think the word "placebo" means "sugar pill." In other words, they believe incorrectly that in a clinical trial, half of the patients get the new treatment being tested, and half get a "fake" treatment. That is not how a cancer trial works, of course -- no researchers would be allowed to (or would want to) keep treatment from a patient. In a double blind trial, where two treatments are being compared (and not every trial is set up this way), the new treatment is given to half of patients, and the other half received the "standard of care" -- the treatment that the would have received anyway if they didn't participate in the trial.

That "placebo" language is loaded. It might be accurate, but it has too many negative meanings for too many patients. And the people who use it should know better than t use it, but that isn't always the case. A couple of years ago, I did some work advising a pharmaceutical company about the patient materials they were writing. One of the documents was about a clinical trial they were conducting, and they kept using the word "placebo." I advised them to change that to "standard of care." It's a little more accurate and a lot less negative for a cancer patient to hear. Using it would only keep some potential trial participants from being a part of it.

Clinical trials are much too important to all of us to have a single word keep people away from them. They may help the individuals who participate in them, but they help all of us by moving treatments forward so they can eventually be approved. (Or they can be shown to not be effective, and  that's just as valuable.)

But all of that requires some education. We need to understand how a trial works, what it includes, and what it doesn't include. And that takes some effort.

So on this World Cancer Day, tell your story. But also make a vow to learn as much as you can about your disease. That bit of education might now just help yourself - it might help all of us.

Also, on this World Cancer Day, do something to treat yourself. I'm going to have a big bowl of ice cream We've all earned it.