Share your Story for National Cancer Survivors Day

nationalcancersurvivorsday

Thanks to advances in cancer treatment and research, there are more than 14 million cancer survivors alive in the United States today. Sunday, June 7 is the 28th Annual National Cancer Survivors Day, and the University of Chicago Medicine Comprehensive Cancer Center wants to celebrate by honoring those who have embraced life after a cancer diagnosis. We invite any of those touched by cancer, either as a patient or caregiver, to share their story of how they responded to a cancer diagnosis. Post a video, photo, or message to Facebook or Twitter and use the hashtag #MyAnswer2Cancer to let others know that there is hope after hearing the words, “you have cancer.”

One of our favorite examples of the power of sharing these personal stories comes from Nicholas Vogelzang, MD, a well-known medical oncologist and cancer researcher who focuses on the care of prostate, kidney, bladder and testicular cancer, as well as mesothelioma. He is also a long-time cancer survivor, diagnosed with Hodgkin’s disease in 1982.

In 1997, almost 20 years ago, he wrote a brief, instructive article, published in the Chicago Tribune, to help friends and relatives of those diagnosed with cancer initiate a genuine conversation about the malady. The science of cancer care has advanced radically since then, but the social and emotional issues, and the ways to approach them, have not really changed. His piece still holds up. Any reader who remembers Lee Atwater gets extra points.

Vogelzang was a professor of medicine at University of Chicago at the time. He now practices at Comprehensive Cancer Centers of Nevada (CCCN) and serves as Chair of the Genitourinary Committee for US Oncology Research.

How A Friend’s Words Can Ease—or Aggravate—the Anxiety

“Let’s put it this way: I’ve stopped flossing.” — Lee Atwater’s response to a colleague’s question: `Is it bad?’ referring to Atwater’s cancer diagnosis.

My teeth are immaculate. I eat a heart-healthy diet, and I exercise, at least sporadically. I start long novels, such as “War and Peace” or “Infinite Jest,” even if I only get 15 minutes in a good week to read for fun. I buy green bananas, wax my car, change the oil, plant hardwood saplings and invest in an IRA. A mere 47 now, I expect to look back fondly 40 years from now at the fun things I did after retiring at 65 or 70 or whatever age becomes customary.

Nicholas Vogelzang, MD

Nicholas Vogelzang, MD

I make long-range plans despite the fact that I’ve heard my doctor say those three alarming words, “You have cancer.” Before it’s over, one out of four of us will hear that same ominous phrase. One out of two will beat it. The others will live with it for varying lengths of time, more and more often for a long time. Either way, once we hear those words, we automatically become, for a time, cancer survivors. It’s a club no one chooses to join but even less do the inductees want their membership to lapse.

This is especially so on the first Sunday in June, National Cancer Survivors Day, celebrated by me and 7.4 million other Americans and their loved ones. Twenty-five years ago people tended to conceal a cancer diagnosis. Sometimes doctors wouldn’t even tell their patients for fear that they couldn’t handle it.

But now those with cancer–we don’t call ourselves victims–are open about it, telling friends, often continuing to work through treatment, and on days like this one, taking it to the streets.

Everywhere you go this Sunday you’re bound to see us, some at hospital-sponsored celebrations, more at family picnics or maybe just at the grocery or the gas station. You may not recognize us as club members. For the most part, we don’t look any different or have a secret handshake or anything. We do sometimes have special needs, strengths we like to display and vulnerabilities we try to protect.

So, after joking to a colleague about common social blunders, like that of Lee Atwater’s questioner (Atwater died in 1991), I was urged to put together this brief primer on how to converse with a cancer survivor. My set of simple rules follows, suggestions that may help you through those awkward moments.

First, my qualifications: I joined the club in 1982, at the age of 33, when I was diagnosed with Hodgkin’s disease, a cancer of the lymph system. It was much less frightening for me than for most because I was also a physician and a cancer specialist. In fact, I was flying home from a cancer research meeting when I noticed a lump in my neck. When I felt it, I did what any physician would do: I waited for it to go away.

When the second lump popped up six weeks later, I scheduled a checkup. I suspected Hodgkin’s, a very treatable cancer, kept telling myself all the symptoms pointed to Hodgkin’s, but nevertheless spent three miserable days imagining worse.

While I waited, I compiled and edited my own obituary. I penned long, emotive, stream-of-consciousness letters to my wife and children, explaining, inadequately, what they meant to me. So I was actually relieved by my not-so-deadly diagnosis.

I was treated with radiation therapy once a day for several weeks. Although it often left me nauseous (a complication we now can prevent), I continued to work. I knew that if I stayed home I would brood, dwell on the illness rather than focus on things I could do something about.

Treatment left me with some minor esophageal and lung damage and a scrawny neck, but 14 years later I’m fine. In fact, I’m certain I’m a better doctor and I suspect I’m a better person because of it.

The cancerous cells are gone but the memory lingers. I still think about it almost every day, still gaze periodically at my original X-ray, which I keep here in my office. But I have new things to worry about now. And I devote most of my time, more time than my wife thinks is wise, to seeing patients, teaching medical students and doing cancer research at the University of Chicago Medical Center.

So here’s a three-rule guide for friends, family and acquaintances of those with cancer. It’s built on a “4-H” foundation–in this sense, the letters stand for hope, help, humor and honesty, crucial elements for any conversation. The suggestions are designed primarily for talking to those who have been diagnosed recently, but they apply to situations involving anyone with cancer, the disconsolate as well as the victorious.

  • Rule No. 1: Talk to us. Don’t be afraid, don’t avoid friends when they need you most. Cancer is not contagious. You don’t have to call once an hour, just come by and say hi. And when you do, don’t avoid the topic. Don’t dance around it or allude to it then back away. We already know we have cancer, and we’ve gotten used to the idea. We’ll help you talk to us about it, and then you will feel better. First you have to come within range.
  • 2: Listen to us. People who have cancer or who have been cured of cancer have a great deal on their minds, and they need to let some of it out. For those recently diagnosed the disease immediately becomes the most important thing in the universe; it affects everything. They’re beginning a battle, a quest, a gut-wrenching science-fiction adventure that will take them places and through ordeals and explorations they never imagined.

Consequently, they have a lot to say. They get educated about their disease and their treatment options with extraordinary speed, and they want to talk about it, get opinions, weigh their choices and gather support. Listen, nod approval, ask questions and try not to give advice.

  • 2-B: Just as important, make the time to listen. A brief hallway encounter is better than nothing, but the best way to let a friend with cancer know that you are serious about the relationship is by setting aside the time to talk, making a genuine effort to understand what is going on in his or her life. This may not be easy. Keep in mind that cancer is not necessarily a death sentence, so a little hope is helpful and appropriate. An equal measure of honesty is also valued, for if a little more than 50 percent of those with cancer go on to live normal lives, a little less than 50 percent eventually lose the battle. That can take some getting used to, some careful balancing of hope and honesty, but I find that most patients tend to come to terms with their disease and their prospects quicker than their family or friends.

On the other hand, please, please, don’t look deeply into the eyes of a friend or, worse yet, a casual acquaintance with cancer and start the conversation with a whispered “How are you?” Don’t dive head first; ease into it, like into a hot tub. Just start with some basics: “What have you got? How is it treated? How is it going? How can I help?” The rest will follow from there.

  • 3: Be prepared to get visceral. Body parts such as bladders or breasts that don’t ordinarily appear in day-to-day conversation suddenly can become top-of-mind for a cancer patient. As a doctor, I expect to get down to the nitty-gritty with a patient. We chat about vomiting. We discuss diarrhea, describe bowel movements, or the lack of them, in detail. We talk about mouth sores and hair loss and fevers and fatigue and farts. I need to know that stuff, and patients who have problems need to talk about it. I find they develop wonderfully different styles of explaining it, humorous ways of approaching such topics.

That humor can make an exchange easier for all concerned. Probably the most important thing I have learned from patients, and not from my mentors, is how essential and how varied and unpredictable humor can be.

You also should be prepared for complaints. People with cancer are crabby–perhaps that’s really why they call it cancer (the Latin word for crab)–and they want to tell you, at length, precisely what’s wrong. They often share elaborate stories involving a constellation of problems in which the disease plays only a minor role. My advice: Enjoy their tales and don’t try to top them.

Finally, just remember that it’s no harder to talk to a pal who has cancer, or who had cancer, than with anyone else. We still care about sports, sex, books, movies, the weather, our families, all the usual things. We may go through a period where we have something more pressing on our minds that we need to talk about, but we’ll get past that quickly enough if you just listen with hope and help and humor. Then we can speak honestly about the Cubs.

The University of Chicago Medicine Comprehensive Cancer Center offers the following services for survivors: http://cancer.uchicago.edu/cancer-info/survivorship1.shtml

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