Cancer patients need compassion and balanced information

If you have to ask what jazz is, you will never know.
- Louis Armstrong

The stillness in the meeting room was electric.

First, one panelist addressed the audience members who have never experienced a malignancy. She described the unique and powerful bond that exists between cancer survivors. She described how the brush with mortality forces each survivor to renegotiate terms with Life itself. She reminded everyone that the cancer care system too often lets down both cancer patients and survivors.

Then she addressed the cancer survivors.  “As a fellow survivor, even if you and I have never met before, I would bet that we would find common ground within fifteen seconds.” Other survivors in the room agreed with her immediately.

This was not a typical cancer conference. The Cancer Survivorship Forum was part of the recent Wisconsin Comprehensive Cancer Control Summit. An eye-opening presentation on the value of physical activity for cancer patients and survivors was followed by a panel of articulate survivors and their significant others (co-survivors) reflecting on which policy initiatives will have the biggest impact on future cancer patients. Everyone in the audience was engaged from start to finish.

What did the survivors want? Patients and survivors expect appropriate, user-friendly, and balanced information about their treatment. They expect compassion from every person with whom they have contact. They demand quality, timely care that does not leave them financially devastated. They deserve a network of support for themselves and their families. They expect more resources that work and fewer things that do not.

The survivors were not shy about describing their experiences or how they felt about the care that they had received. With each comment from the panel or from a survivor in the audience, there was applause. Survivors craned their necks to see who was speaking and later made contact.

At most scientific meetings, I sit in rooms full of fellow clinicians, hear about the latest research, and jot down ideas for new projects. The following year, I realize that I never quite got around to initiating many of the project ideas I had explored. Oh, well, I think. Maybe next year. I shrug my shoulders and make excuses. Cancer will still be there.

At the Survivorship Forum, though, surrounded on all sides by people who have experienced cancer treatment, it is much harder to pass off our lack of progress. In the stillness of the conference room, the survivors listen intently to the presenters who articulately speak for them. They look at the clinicians and researchers expectantly. It is clear that cancer survivors can hold our feet to the fire in ways that petri dishes of cancer cells cannot. If we fail to act, the survivors will be at the next meeting. They are the real people to whom we will answer.

Bruce Campbell is an otolaryngologist who blogs at Reflections in a Head Mirror.

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