Positive Options for Colorectal Cancer, Second Edition: Self-Help and Treatment

Introduction

If you have been diagnosed with colorectal cancer, you are not alone. Statistics compiled from the American Cancer Society, the American Gastroenterological Association, and the Colon Cancer Alliance reveal the toll this disease has taken on our population. Colorectal cancer (also referred to as colon cancer) has affected too many American lives to be ignored. Here are some statistics:

Approximately eighty to ninety million Americans are considered at risk for developing colorectal cancer.

More than 142,000 new cases of colorectal cancer will be diagnosed this year in the United States. That translates into one person diagnosed almost every four minutes.

Colorectal cancer is the third-leading cancer-related killer of both men and women in America; it is also the fourth most commonly diagnosed cancer.

Although the majority of people diagnosed with colorectal cancer are over age fifty, it can strike people of any age.

Men and women over the age of fifty are at equal risk of developing colorectal cancer.

What’s regrettable is that despite these alarming figures—as well as increased information about the importance of early detection—too few Americans get regularly screened for colorectal cancer. This is probably due to social taboos and fear; colorectal cancer is the disease no one wants to talk about, let alone be tested for. Too many people are reluctant to find out what they need to know about colorectal cancer because they are simply too embarrassed or fearful of what they might discover, but we pay a high price for shying away from the subject. The truth is, what you don’t know about colorectal cancer could really hurt you, and accurate knowledge about your status could empower you to make good decisions and improve your chances of living a healthy life.

As a colorectal cancer patient, I longed to talk to people who could give me a personal account of their experiences coping with cancer. I wanted to compare their experiences with my own, but I also wanted to document that firsthand knowledge. As a former teacher, I wanted to pass on what I had learned and to inform others about their options when confronted with this illness.

Fortunately for me, the Minnesota Colon and Rectal Foundation had been founded by Dr. David Rothenberger and in 1997 hired Cindy Iverson as developmental director to raise funds for the association and to educate people about colon cancer. The next year, Katie Couric publicized her husband’s death from colon cancer to raise awareness for screening. In 1999 Rothenberger joined medical professionals throughout the nation to have March designated as National Colorectal Cancer Awareness month. Doctors and medical professionals formed the Minnesota Colorectal Cancer Consortium (MCCC) and, spearheaded by Iverson, developed a group called Advocates for Colorectal Education (ACE), a Minnesota-based grassroots nonprofit organization of colorectal cancer survivors. They contacted me and I found what I needed. ACE members made visitations, gave speeches, and attended legislative activities. Along with Ruth Edstrom, I became the coeditor of their newsletter, The Advocate, which we distributed to all the hospitals in the state. Each issue featured heartfelt and insightful stories written by survivors of colorectal cancer. Many of their stories are included in this book, produced in collaboration with ACE members and medical professionals.

The members of our ACE group came from all walks of life, were both men and women, and ranged in age from thirty to seventy. We had at least one thing in common: We were all too familiar with the ways in which fear can distort the experience of cancer. Most of us started out vowing we would only tell a select few people about our diagnosis. But instead of remaining silent, we decided to turn our experiences into opportunities to spread information and awareness. We learned invaluable lessons as we struggled to regain our health, lessons that we can now share with others affected by cancer.

Positive Options for Colorectal Cancer is a book for patients, written by patients. It is loaded with practical tips from people who have experienced firsthand the struggles of life with cancer. In this book we ask the following questions: What kinds of challenges does a person encounter when first diagnosed with colorectal cancer? What can help when going through invasive tests, negotiating with doctors, and dealing with unfamiliar equipment, drugs, and forms of treatment? How can a person cope with the depressing thoughts that accompany a life-threatening disease? How can people better communicate their needs during a crisis? Does radiation hurt? What things are useful to consider before surgery? What can help you get through the experience of chemotherapy? What is an ostomy and, if you need one, how does it change your life? What happens to family life and sexuality when cancer strikes and afterward? What is it like to be a cancer survivor?

The technical information contained in this book has been reviewed by the following medical professionals:

doctors from Colon and Rectal Surgery Associates, Ltd.

oncologists from Minnesota Oncology

Anna Leininger, MS, genetic counselor from Minnesota Oncology

Jane Nielsen, oncology nurse

Vicki Haugen and Julie Powell, enterostomal nurses from Fairview Hospital, Minneapolis

These individuals were contacted to answer some of the questions we, as patients, wondered about but never asked. Some of the information contained in this book is new, such as the effectiveness of virtual colonoscopy and the newest findings on genetics and chemotherapy. Progress in treating colorectal cancer will continue; new ways of looking at the disease will develop. What remains the same are the concerns of patients and their families as they find themselves encountering a diagnosis of colorectal cancer.

This is a book for cancer patients, for people who love and care for those patients, and for people just seeking information. It is about exercising positive options to cope with colorectal cancer and to overcome difficulties, and it is about being transformed by the experience.

Survivors

by Ann Favreau,

Past President of the United Ostomy Association

Caring people

Conquer affliction

Move as survivors

To comfort others.

Listening ears

Empathetic hearts

Hands outreached

To make a difference.

Touching others

Links of care

Connect us all

In the Healing Circle.

(Reprinted from The Healing Circle,

available from the United Ostomy Associations of America,

previously known as the United Ostomy Association)

CHAPTER 1

Facing the Unknown

You probably know very little about your colon. Who does? It’s like the plumbing in our houses: We rely on it daily, yet most of us don’t really know how it works.

Here are the basics: The colon is the large intestine or large bowel (see Figure 1 on page 6). It is approximately three inches in diameter and five feet long. Its job is to absorb water and work like a trash compactor, forming waste matter that can be eliminated through the anus. The beginning of the colon lies just past the ileum (the final part of the small intestine). It snakes its way up the right side of the lower abdomen, across, and down the left side, to the sigmoid colon, and then it joins the rectum.

What Is Colorectal Cancer?

Rectal cancers are found in the last six inches of the digestive tract, and colon cancers occur above the rectum, but both rectal and colon cancers are commonly called colorectal cancers. Colorectal cancers develop slowly over the years and most of them begin as polyps, flat or grapelike growths that can be detected using either a colonoscope or a sigmoidoscope. Not all polyps are malignant (cancerous), and even minor malignancies, if discovered early enough, can be eliminated fairly easily during certain tests. That’s the good news.

The bad news is that a person with colorectal cancer may not have any of the common symptoms that would indicate a problem, or the signs may be so subtle they go unnoticed. Symptoms can masquerade as other problems, such as ulcers or gastric (stomach) upsets. The only way to be sure is to undergo screening for colorectal cancer.

FIGURE 1. The human digestive tract, including the regions of the large intestine and the small intestine.

Warning Signs

The symptoms of colorectal cancer are varied and can be easily overlooked. You may or may not have bleeding, or there may be only traces of blood in your stools. The feeling of general stomach discomfort may be minor.

Symptoms may be related to how far the disease has progressed and the area where the cancer is located. Abdominal cramping and loss of weight, for instance, might be a product of cancer on the right side of the colon (that is, in the portion of the colon on the right side of the torso, also called the ascending colon), while problems with constipation and diarrhea might indicate cancer on the left side (also called the descending colon, because the contents of the colon are descending toward the rectum and anus). A sense of rectal fullness or a change in the appearance of the stools may signify rectal cancer.

You should not ignore any of the following symptoms:

any significant change in bowel habits, such as persistent diarrhea or constipation

a narrowing of the stools

bleeding

abdominal pain that is unexplained

bloating

fatigue

Paying Attention to Symptoms

When a person is facing an unknown disease, any fear they feel becomes magnified by silence. Some people are so convinced that cancer is a death sentence that they become fatalistic and believe there is nothing they can do. With increasing anxiety, they avoid seeking treatment as long as possible. Other people who experience rectal bleeding attribute it to hemorrhoids. If the bleeding stops, they might assume that the problem went away and there is no need for further investigation. These attitudes can just add to the stress level in the long run. Denial can be deadly if it prevents you from getting help.

In my case, the awareness of danger began like a faint siren, hardly noticeable but demanding attention. I was fifty-eight and wondering why I’d been having minor spotting of blood from my rectum for almost a month. The week before a vacation is always grueling, and my job as a high-school teacher in an alternative program was not an easy one, but as much as I tried to tell myself that the physical symptoms were just natural, some ancient wisdom inside of me told me this was not the case. The blood was bright red, and didn’t that mean it wasn’t dangerous? Still, I knew it was something I hadn’t experienced before, and finally I could make no more excuses.

On my way to a party, I stopped to see a doctor at an urgent-care facility. When he examined me, my worst fears were confirmed. His direct eye contact signaled he was serious about what he was going to say and that there was not going to be an easy fix.

Any kind of unexplained bleeding is a red flag, he said. You need to call your doctor right away Monday morning and schedule a colonoscopy. Don’t let them lose any time getting you in.

I was stunned. Everything in my life changed. I felt that I had suddenly come up against a barrier and was being directed urgently into unfamiliar territory. It felt like a flashing yellow signal was declaring:

At that moment, without a map, I became sick with fear. I felt frustrated and alone, unsure about what I should do. I’d never questioned it before, but now I became aware of my mortality. I knew my health was at risk, and I knew I wanted to survive. I had to face the fact that I might have colorectal cancer, a disease I knew nothing about.

The problem was that no one I knew talked about colorectal cancer, and that made it even more frightening to me. Relatives from both sides of my family had struggled with the disease, but I didn’t know what they’d gone through because it was politely hushed up and avoided as a topic of conversation. If I wanted to prepare myself for what I was going to have to endure, I was going to need more information.

I was referred to a gastroenterologist, a doctor who specializes in disorders of the digestive tract, and the following week I went in for a colonoscopy. The doctor found three polyps and removed them immediately. It was lucky for me that he did. The biopsy revealed that two of the polyps were malignant. Though I found out later that the cancer had spread to my lymph nodes, I would probably not be alive today if I had waited much longer to go to a doctor.

Knowing the early warning signs of colorectal cancer can help a person catch the disease before it has gone too far, as the storyc below illustrates.

MY STORY Jane

Jane was in her forties when she noticed subtle, gradual changes in her bowel habits. Like most women she knew, she questioned whether an irregularity was due to something she had eaten or to what is now termed irritable bowel syndrome. Those seemed like reasonable explanations to her. But in the back of her mind she wondered if it was something more. She knew colon cancer ran in her family. Her father had been diagnosed with colorectal cancer at the age of sixty-eight. So she kept watching.

Jane also knew from her experience as an oncology nurse that, tragically, many cancers are not caught in time. Many of her patients either discounted their symptoms due to ignorance or fear, or their physicians discounted them. Many went to their deaths consumed with regret for having lacked the courage to speak up or to seek a second opinion.

Jane’s awareness paid off. She had a moment of reckoning in the cramped quarters of a hospital employee restroom. She remembers, I was consumed with pain, holding onto the walls for support, resorting to Lamaze breathing to have a bowel movement. All I could think about was ‘What’s wrong with this picture?’ I couldn’t deny it anymore. This was not normal.

At her next OB/GYN physical, she mentioned her periodic difficulty having a bowel movement and the change in her stool’s color, texture, and frequency. Since a younger sister had recently undergone gall bladder surgery, the physician ordered an ultrasound and blood work. Later, a reassuring phone call from the doctor’s office announced that everything was okay. Jane was told she was just a little anemic.

Her search for an accurate diagnosis would have ended there if Jane had not continued it. Physically, she was not convinced that everything was okay. She found a highly regarded general practitioner and asked for help. Without hesitation, the doctor recommended a colonoscopy, because of her symptoms and family history. That intervention changed her life.

As Jane recalls, The procedure was performed on April Fool’s Day. When I was shown the pictures, I knew this was no joke, but something very serious. Following a colon resection for adenocarcinoma (a type of cancer), I received the encouraging news that I was lucky. The cancer had not spread through the intestinal wall or to my lymph nodes. I surrendered eight inches of colon and gained hope the length of a lifetime.

It is possible that working in health care may have given Jane an edge in discovering her cancer in its early stages. But she believes that taking responsibility for knowing her body and reporting her concerns is what really made a difference to her survival. We all have instincts, Jane says.