Life after colon cancer

Happy to be cancer-free today, author Curtis Pesmen still thinks about the disease. "There will always be a cloud in my skies," he says.
Happy to be cancer-free today, author Curtis Pesmen still thinks about the disease. "There will always be a cloud in my skies," he says.
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March is National Colorectal Cancer Awareness Month, and thankfully there's a growing understanding of the importance of screening, early detection and prompt treatment. As a result, more Americans are now beating the disease. So what's it like to be a cancer survivor?

It's an issue that's only recently getting much attention. In his new book, "The Colon Cancer Survivor's Guide" (Tatra Press, 2005), veteran health writer and editor Curtis Pesmen discusses life after cancer. Diagnosed with advanced colon cancer four years ago, Pesmen is now among the estimated 10 million cancer survivors in the United States.

Recently,’s Jane Weaver spoke with Pesmen about his journey from cancer patient to survivor.

Question: You were just 43 when you were diagnosed with colon cancer. What went through your mind when you heard the word cancer?

Answer: I was just this side of shocked. I had seemingly done the right thing and been screened at age 40. When I was in my 20s, I was diagnosed with colitis so I knew that somewhere in my past and in my future there was a reason to keep a close watch on my body. My doctors had said, "Don’t wait until you’re 50 [to get screened for colon cancer]." I was at a higher risk for colon cancer than the normal population. I wasn’t biologically a man with a 40-year-old colon and small intestine. I was a man with a 65-year-old colon and small intestine.

Shock hits everybody when they’re diagnosed. In my mind, it streamed back to me what they had told me in my 20s. I was screened and my doctor missed some early-stage cancer apparently. When I was finally diagnosed at 43, the colorectal specialist said it was his belief that I had a slow-growing cancer that had been there at least five years, maybe eight to 10 years. Some doctors would have found it, but not everyone is equally adept at performing a colonoscopy. I don’t say that to scare people out of colonoscopies — well over 95 percent are done accurately. I was in a small percentage of misdiagnoses.

Question: As a health journalist, you’ve covered cancer issues. You even helped launch the pink ribbon campaign for breast cancer awareness. Did any of it help prepare you for what you were facing?

Answer: Yes, it did. I must have written or edited over three dozen stories on breast cancer cases and survivors. I had traveled some of the emotional highways of the disease, if not personally then as a tourist. I once edited a story written by a doctor who wrote about telling his friend she had cancer. He was someone who did breast exams and felt the lump [in his friend]. As an editor I was startled by how emotional it was when he felt something bad. He knew he couldn’t stop. He finished the exam and went back to the tumor area. You could tell and he could tell it was not good news. That image stayed with me. Did my doctor feel this? I was a stage III diagnosis. There are four main stages, and stage IV is the worst.

Question: How does life compare now to before the diagnosis?

Answer: The biggest change between when I had cancer and now that I am cancer-free is that now I am a dad. So fatherhood has absolutely ripped me out of the world of cancer in the last couple of years, in a good way. It always underscores the notion that there will always be a cloud in my skies. I have had friends who lived with depression whose clouds may be darker than mine are on a day-to-day basis. But no one thinks about the crush of other diseases the way they think about the crush of cancer. We all have something in our past and our future. How do you keep it away from 90 percent of what you do each day?

Question: Some people say the experience of cancer has made them stronger. Do you see it that way?

Answer: I read that in Lance Armstrong’s book ("It's Not About the Bike: My Journey Back to Life"). It was fairly inspirational. Toward the end of the book he said that if he had to choose winning the Tour de France or cancer, he'd choose cancer. He said cancer made him a better person. That’s what I didn’t buy. I didn’t buy it as a journalist or cancer patient that it made him better. I don’t mean to sound haughty, but maybe the difference is I didn’t think I was that bad a guy to begin with. I didn’t believe certain biology could make me better.

It’s made me a stronger person, but not better. If you’ve been in the fire and come out of the fire, does that make you better? There is a difference between being better and stronger. I believe I have become stronger. Hopefully the quirks of my biology didn’t make me better.

Question: In your book, you talk about the transition from being a patient to being a survivor. Where is that point?

Answer:  It has no one answer. The quickest answer is in most cancer research and studies and articles there is the notion of the five-year cure. But, again, cure doesn’t equal survivor. I believe survivor is a more encompassing word. For me, the transition was when all the treatment was done for my first course, second course and third course of chemotherapy. I felt like my course was over and if I’m going to be healthy for the next 30, 40, 50 years, then the survivor starts now, whether or not I’m cured.

Doctors aren’t 100 percent sure if a recurrence happens two to three years later, whether it's the same disease or a new disease. I’ll agree with the five-year cure rate, but I won’t wait for that. I say the survivorship starts now, as soon as the treatment is behind you.

Question: There's now increasing attention being paid to the physical, emotional and financial issues that cancer survivors face. Which ones affect you?

Answer:All three. The physical and emotional were the same for me. You hear the phrase body-mind medicine being the same thing. I’ve always looked at it as being a little off — since when did someone decree that the mind is not part of the body? How can we not include the brain as part of the body? If there are severe physical issues there are emotional issues, despite what you may call them. To me, they were married and intertwined and I couldn’t separate them.

Eventually, the healthier I became the more time I had to worry about the financial impact of cancer. There is a chapter in the book about insurance issues and how cancer survivors begin to return to their jobs and their lives to be full-fledged workers again. I quote someone who came back to work from colorectal cancer, and someone asked if they could catch it. Or if you work for a small company, there will be whisperings, "will all our insurance premiums go up?"

When I got healthier and the bills started coming in, I remember thinking, "at what point am I going to hit the $300,000 mark in billings?" Fortunately I didn’t have to pay all that myself. But the financial side is a real concern. The numbers do get scary.

There are some big legislative acts that help cancer survivors, which in theory keep folks from being discriminated against. The first one is the Americans with Disabilities Act. Some states require the sale of health insurance to people no matter what their past histories are. There are also the Family and Medical Leave Act and the Health Insurance Portability and Accountability Act. Together those laws can help you think about lessening the burdens of insurance and repairing your financial health once you’re out of the worst of the treatment and suffering.

Question: We know now that cancer is the No. 1 killer of Americans under 85. So sooner or later, most of us will know someone with cancer or even be diagnosed with it ourselves. It’s not an easy thing to talk about. Do you have any advice on how to approach it?

Answer:Most people don’t rehearse when they’re talking to a cancer patient. I do know it would help a lot of families and cancer patients who are at their worst if the people who talk to them did rehearse.

The one question that’s become lingua franca: does it run in your family? Think through that question. If it does and a grandparent or a sister or a mother had it, then that means you are a marked individual, you have bad biology. If it doesn’t run in the family, you’ve just asked a question that leads the patient to start thinking, "Did I do something wrong, did I eat something or drink something, did I live in the wrong area of the country, did my lifestyle cause cancer because it's not in my biology?" My question is, how does it help the patient to ask that? How do you ease a family’s or patient’s burden? That may not be the best question to ask.

I do offer in the book things you might be able to say or do. Don’t ever say, "I know how you feel." You don’t, even if you have had the same disease.

The better question to ask if you’re uncomfortable is, "When you’re thinking about this, what helps you get through the darker times?" Whether it’s prayer or limited exercise or things they may do or create, just asking them what helps them get through the darker times is a way to have a conversation rather than a misinformed accusation.

Question: And, finally, any parting thoughts for the patients who are battling colon cancer right now?

Answer:There is a family of treatments now and that is extremely good news. In the last few years, there have been major drug advances, including Avastin and Erbitux, that can extend life when used in combinations with the drugs 5-FU and Camptosar. It’s happening so fast and not all doctors have experience with these combinations, but that’s a great message for patients and their families to have.