- The Washington Times - Sunday, September 30, 2001

Ellen Stovall compares being treated for cancer to being dropped in the ocean. It is as though you are flailing about and someone reaches in and rescues you, but what then?

"Then they throw you up on the dock and leave you there, wet and sputtering," says Ms. Stovall, 55, of Gaithersburg, who has beaten two episodes of Hodgkin's disease.

Cancer changes everything, Ms. Stovall says. Everything from the way food tastes to how you relate to your spouse to what you will do with the rest of your life.

"Life just goes along, and until something happens, you think you are going to live forever," she says. "It was a life-altering experience for me. I can't say it is for everyone. Many people get their treatment and walk away, and that is fine, but many others see it as a chance to live life differently."

Ms. Stovall, who has now been cancer-free for more than 20 years, has devoted the past 15 years to supporting others in her situation. As the president of the National Coalition of Cancer Survivors, a Maryland-based advocacy group, she wants to be the towel that helps those patients shivering on the dock.

As modern medicine advances, there are more and more people like Ms. Stovall each year. About 1 million Americans are diagnosed with cancer annually, according to the American Cancer Society. Of that number, about half can expect to live disease-free for at least five years. The number of cancer survivors in this country is about 10 million and growing, says Susan Nessim, founder of Cancervive, a national survivor's support group, and the author of "Can Survive: Reclaiming Your Life After Cancer."

"When you are in treatment, the focus is on getting through it," says Ms. Nessim of Los Angeles. "You don't have time to look at the trajectory of how it affects your whole life."

Ms. Nessim, 44, had a rare leg tumor removed when she was a teen-ager. She says she was eventually given a clean bill of health physically, but was frustrated at the lack of support for those who technically were no longer cancer patients.

"When you finish treatment, you are relieved it is over, but then there is a second wave of anxiety of what is going to happen next," Ms. Nessim says. "It can really catch you off-guard. You don't think at the time, [when] you should be celebrating, that you will be afraid and reassessing things you never had to before. A lot of times, relationships fall apart. There are conflicting emotions. There are still physical problems. I think it takes a long time to get over that."

After her cancer treatment, Ms. Nessim tried to resume her life as usual. She returned to college and typical activities, but the fact she had cancer was always there. In the years that followed, her fiance was pressured by his parents to break off their engagement because they did not want him to be a widower. Ms. Nessim says she was passed over for a job promotion because of her former condition. She has lingering health effects, such as a limp and swelling of her leg.

"I'd fought hard to beat cancer and I was fiercely proud," Ms. Nessim says. "But with a growing sense of outrage, I realized that cancer was continuing to reroute my life and cloud my future."

Living, but not forgetting

The psychological impact of facing cancer can be both a positive and a negative one, says Linda Seligman, a Fairfax psychologist who is on the advisory board of Y-Me, a national support group for breast cancer survivors.

Ms. Seligman says she has seen some patients recover from cancer and use the experience as the impetus for change, such as quitting work to spend more time at home with children or making a career change to a lower-paying but more spiritually fulfilling line of work.

"It often forces people to re-evaluate priorities and recognize what is really important," she says. "A lot of people want to stop putting things off and do the things they want to do now."

But the negatives can have a nagging effect, too, Ms. Seligman says.

"Many people are also waiting for the other shoe to drop," she says. "With many types of cancer, you are not declared cured for three or five years. With breast cancer, there is no point at which you are deemed cured. You can have a recurrence 10 or 15 years later. Many women tend to carry that fear that it will recur with them."

Finding a balance between monitoring one's health and worrying that every twinge must be a tumor can be difficult. Since many cancer treatments such as radiation and chemotherapy can put patients at risk for secondary cancers, it is hard to not to let health concerns become overwhelming.

"Before cancer, an ache or symptom could be taken care of with two aspirin," Ms. Seligman says. "After cancer, any of those things become worrisome. Sometimes it can be cancer again, but people need to learn to trust their instincts. I try to help patients to think more clearly."

Another aftereffect can be a communication gap. Family members might see the end of treatment as the end of the problem. The patient might see it as a new problem just beginning, she says. Saying goodbye to medical personnel the patient has come to care for and to the faith that the medicine is doing its job presents a whole new set of issues.

"That is when a support group or counseling may be helpful," Ms. Seligman says. "A husband may say, 'You're done with treatment, why do you need support?' but experiences like this have a very deep impact on women."

Indeed, male cancer patients tend to cope differently, says Sabine Gnesdiloff, a licensed clinical social worker and the psychosocial program coordinator at Life With Cancer, a support organization affiliated with Inova Fairfax Hospital.

"Men are generally less expressive," Ms. Gnesdiloff says.

Ms. Seligman adds that male patients are much less likely to seek counseling.

Cancer also can wreak havoc on a couple's relationship because chemotherapy often throws women into menopause. So, in addition to coping with the disease and the immediate side effects of treatment, there can be a loss of estrogen, hot flashes and a drop in sexual desire as well, Ms. Seligman says.

"Cancer changes the whole family dynamic," Ms. Gnesdiloff says. "Sometimes spouses do not know how to treat the other person. It can be a no-win either way. Some people want special attention; some people don't. But everyone has an idea of what they should do."

Cancer can change relationships outside of the family, as well.

"There often is a weeding out of old friendships," Ms. Seligman says. "Certainly, some friends can't deal with the situation. Others will try to help by saying, 'I know someone who is in a worse situation than you.' They may be trying to help, but they really are not helpful. Ending relationships are not necessarily a bad thing, but survivors need to know those friends mean well. I work with clients to tell them how to assert themselves, how to not talk about cancer if they don't want to."

Sometimes, new relationships form from the circumstances. When Debbie Hayes, 45, of Sterling, was undergoing treatment for breast cancer 12 years ago, there were few support opportunities in the small Indiana town in which she was living. She asked her surgeon to help her find another young patient.

"The doctor had another woman call me," Mrs. Hayes says. "It was ideal. This was someone I could call when I had a symptom and say, 'Is this something or is this nothing?' She had a lot to do with saving my life."

Moving on, slowly

It has been more than a decade, but Mrs. Hayes says cancer is with her every day.

"I used to think about it 30,000 times a day," she says. "Now it is down to about 500. Every time something hurts, of course, you think it is cancer. It crosses my mind, but now I don't have that panic."

Mrs. Hayes says humor and helping others who are going through similar treatment have aided her progress over the years.

"I have a warped sense of humor," she says, laughing at how she made self-deprecating jokes with her friends following her mastectomy.

Mrs. Hayes also is a volunteer counselor for Y-Me.

Ms. Stovall has made cancer survivorship her life's work. She points out that cancer can affect everything from fertility to future access to health insurance to cognitive deficits that may show up later.

"Cancer does not take place in a vacuum," Ms. Stovall says. "It turns someone's life upside down."

Ms. Stovall advises survivors to go on with the rest of their lives as vigilant about their health as if they had a chronic condition such as diabetes.

"You need to have that antennae up," she says. "You have to take good care of yourself to diminish your risk for future cancer."

Finding a physical or psychological outlet will give survivors a sense of control, Ms. Gnesdiloff says.

"Once they understand 'my body betrayed me,' some people approach the next step as what can they do to gain more control," she says.

Some popular activities are nutritional approaches, positive imagery, yoga, tai chi and journal writing, Ms. Gnesdiloff says.

"There is a certain sorrow that life isn't the same," she says. "There is mourning of the self you were. We all have our own style of recovery, though. We all have to do what feels right for us. And, eventually, there is a different kind of normal."

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