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Cancer Moonshot can change our Cancer Conversation

imageI sat on the case of Syrah, breathing deeply to slow my racing heart, letting the dizziness pass in the cool silence of the industrial wine storage cooler. Sitting alone in the dark, I finally accepted that no amount of toughness, fight, positive thinking, survival spirit or resiliency was going to give me the prize I sought: to spectacularly defeat cancer.

Before breast cancer, I biked across the US and India. Now, after a year of surgeries, chemotherapy and radiation, I set an audacious goal: to bike 10,000 miles over three months in Asia and spectacularly thumb my nose at the cancer that had stopped me cold and left my body broken.

And why not? The media and the Internet promote glorious stories of cancer patients completing near-impossible physical feats. And I took this message to heart. I was a survivor. I had beat cancer. If they could do it, I would too.

I trained for months, gradually increasing the miles and difficulty of each ride and slowly building strength and stamina. But now, after nearly passing out during a bike ride in front of a rural winery I had to face facts. My hard work, determination and positive attitude were not enough to restore my health or pedal my damaged body back to pre-cancer strength.

Consultations with my doctors later – and their warnings to get to the emergency room if anything like that ever happened again – confirmed my fears. I had failed.

The months after were the most depressing of my life. In hindsight I realize that trying to do that ride was completely unreasonable … and probably dangerous. It certainly delayed my true healing, and led to a host of other painful, avoidable medical problems. I had listened to the hype and myth of cancer survival instead of listening to my body. And I paid for that mistake for the next two years.

When someone says, “I have cancer.” We say to them, “You can beat this. Be strong. You can win this battle.”

I recently watched a young friend, newly diagnosed with breast cancer, declare on her cancer-care blog and Facebook page she will “Beat this disease. Cancer doesn’t know who it’s messing with.” She adopted this fighting language because this is what patients are supposed to say. It’s what a “survivor” says.

So she rallied her troops for the medical war on her body. And her virtual army responded in kind … cheering for the winning side, sending strength and virtual fist pumps along with soup and flowers. “You can beat this! You are so strong! Keep fighting!”

But cancer is a complex disease. And weeks later she learned her cancer had already spread. Her disease is incurable. She tried to explain her diagnosis. Well-meaning friends continued to post, “Be strong – you can beat this!”. They did not understand that every comment telling her to beat her disease implied that her eventual death will because she failed fight hard enough to survive.

The battle language of cancer is a relic of President Nixon’s 1970’s “War on Cancer”. Today we still cling to the comfort of the old, familiar rhetoric – mostly because we don’t know what else to say.

We mean well. But what happens when treatment fails? Or cancer comes back? Or a patient chooses to stop treatment? Or dies from her disease? Did the patient “lose”, “fail to fight hard enough”, “succumb” or “give up?” Of course not.

Our limited language hurts patients and families as they cope with diagnosis and treatment. As we rebuild our lives after treatment ends. It even follows us to our deaths.

A friend who watched her father die of lung cancer bristled at a well-meant comment that her father lost his battle. “He didn’t lose anything. He died, but he was so strong and brave. It’s wrong to say he was a loser. He was amazing.”

Now, with new cancer drugs costing over $100,000, many offering little benefit to patient survival or quality of life, we should ask ourselves why so many patients choose the most aggressive treatments possible. Even if these treatments bankrupt families.

While many factors influence care decisions, the assumption that not fighting cancer as hard as possible – regardless of how minor the benefit, regardless of how terrible the quality of life – frames our expectations and pressures the choices we make.

With the President’s and Vice-president’s Moonshot to cure cancer, we should seize the opportunity to overhaul the language of cancer. It’s time to leave the outdated battle language and Nixon’s “War on Cancer” sound bites behind. Let’s move forward with innovative approaches for a cure and a new, more thoughtful cancer conversation to enable patients to make the best possible choices for their futures and families.

16 thoughts on “Cancer Moonshot can change our Cancer Conversation

  1. We all have. We’ve been trained to for 45 years since Nixon’s War on Cancer. It took me a long time to understand the impact that message had on my own decisions and then see how it impacts others.

  2. As always, you are incredibly eloquent. Thank you for saying this and putting things in words easy to understand. I like the moonshot analogy much better than the “War on Cancer” message.

  3. you write so well! this will make me re-think my language to those who are in the same position. thanks for the mindset change!

  4. Great blog post, Leigh. And yes, it’s definitely time for the public to become more educated about the disease and the pitfalls of turning a patient’s diagnosis into some kind of battle that they win or lose. Cancer is an incredibly complicated, almost diabolical disease and pretty much everybody “fights hard” (i.e., goes through the recommended treatment). If the biology allows it, they live. If it doesn’t, they die. If things turn south for me and I die of this disease, I want my obit to reflect the fact that I took cancer down with me. ; )

  5. Great information.

    Sorry I pushed you that day and left you in dark.
    What a journey it has been please continue to share so others learn.

  6. Thanks for sharing your story with us Leigh. Speaking up is real leadership. I hope those who work for cancer care organizations will pay attention and start making change.

  7. I seem to remember I was out front setting the brisk pace and you were the one who got me back the last miles safely after the wine cooler crash.

  8. Next project is to track down the communications directors of the organizations that use this message frame to promote their fundraisers and events and share that they may be inadvertently harming those they want to inspire and help. Anyone who is doing these events and working with cancer advocacy organizations … please share this perspective with them.

  9. Thank you. I’m also friends with your young friend who was recently diagnosed with metastatic breast cancer. Thank you for sharing your perspective on how I can support her, using different words to lift her up, but not to set her up to fight a battle.

  10. You are welcome. I think one way we can all help cancer patients is to gently help others understand the power of words, and learn to just simply and honestly say we love them and we have their back. Which is really – for me anyway – the main thing that matters and we want to hear when we are sick and scared.

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