Breakthrough Patient Recruitment

: The Difference between Dying from Cancer and Living with Cancer

The Difference between Dying from Cancer and Living with Cancer

Managing Editor

The way we talk about cancer is outdated. It was this headline in a Vox article that caught my eye earlier this month. Wondering what it meant, I clicked (so yes, sometimes the clickbait on Vox works, quite effectively actually) and stumbled onto an article that has real-life parallels for me.

My aunt has been sick--really sick--for about a year, with unexplained gastrointestinal issues that have caused her to lose a great deal of weight. Despite tests for nearly everything (including various types of cancer), the doctors have been unable to confirm a diagnosis.

After losing her husband (my uncle) to cancer, she is terrified that she may also have what she considers to be a deadly disease. When I heard this, my first reaction was this: "But we know how to fight cancer. We have treatments that are incredibly effective. Isn't having cancerbetterthan not knowing what is wrong?"

But in her world, cancer is a death sentence.

This way of thinking is not uncommon. Nearly everyone I know has lost someone to cancer. It's a horrific disease that takes people too young, causes people to suffer, and, as is the case with my aunt, instills fear in all of us.

But, as the Vox headline suggests, despite all the pain, and yes, death, that cancer causes, we should re-thing the way we talk about cancer. And that means health communicators have some work to do to help patients step outside of a world where one of two scenarios prevail: complete cancer remission or death.

In fact, many people live with cancer as a chronic condition. Since 1991, the cancer death rate has declined by 23 percent. The reality for most patients with cancer is that the disease is never truly gone (perhaps recurring from time to time) but it's also not killing them. Nevertheless, many people, including politicians such as Joe Biden, are frequently vowing to "cure" cancer, a notion with which some don't necessarily agree.

Siddhartha Mukherjee, a physician, scientist, and author of " The Emperor of All Maladies: A Biography of Cancer," for example, says that cancer is far too complex for a single "silver bullet" that cures all types of cancers. Mukherjee says that "To imagine that we will find a simple solution to this doesn't do service to the true complexity of the problem."

What does this mean? There has been so much time and energy spent on "finding a cure" for cancer, and it is exceedingly difficult to change rhetoric about any topic, let alone one that carries such emotional baggage.

But maybe, if we starttalkingabout people living with cancer--not just talking about people who are dying from cancer or not just talking about people who are celebrating that their cancer has been cured--we can start to change the way wethinkabout cancer.

Patients shouldn't be afraid to use the "C" word. And they shouldn't feel as if they have to keep their diagnosis a secret.

That doesn't mean we stop hoping for a cure for cancer. It just means that when cancer is not cured, we don't hide it. We talk about it. And we learn from it.

A version of this post appeared at HealthComU on March 14, 2015.

 [BL1]Will provide a link once I have it.

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