By Kathy LaTour

The long awaited day has come. Treatment is over and life can get back to normal. Or can it?

More patients than ever are arriving at that day. According to the National Cancer Institute (NCI)‚ there are an estimated nine million cancer survivors in the United States today‚ a number that is growing as the population ages and more people survive.

Each cancer survivor travels a unique journey when treatment ends‚ says Julia Rowland‚ PhD‚ director of the Office of Cancer Survivorship (OCS) at the NCI. And surviving cancer doesn’t mean its impact is gone.

“Although every person is different‚” Dr. Rowland emphasizes‚ “all survivors face physical‚ emotional‚ social‚ and existential issues as a result of their cancer diagnosis and treatment. Addressing these issues can take time.”

After months of focusing on medical issues and being acutely aware of their physical state‚ cancer patients are sent back to the world to resume living once treatment ends. Ecstatic at first‚ the reality soon settles in that the body‚ family‚ work‚ and world they left have been altered.

And it doesn’t take a medical degree to figure out that for many of these new survivors‚ the next part of their lives will be watchful waiting to see if the cancer recurs.

Understanding Surviving
The OCS was created at the NCI in 1996 to enhance the length and quality of life of cancer survivors through research into the short–and long–term effects of cancer and its treatment‚ including the physical‚ psychological‚ social‚ and economic. The OCS educates healthcare professionals‚ survivors‚ their family members‚ and those who care about them‚ about cancer survivorship issues.

The OCS defines survivors as those individuals diagnosed with cancer‚ their family‚ friends‚ and caregivers. An individual is considered a cancer survivor from the moment of diagnosis and for the balance of that individual’s life.

Prior to being appointed director of the OCS in September 1999‚ Dr. Rowland was involved in research‚ teaching‚ and program development in the psychosocial aspects of cancer at Georgetown University in Washington‚ D.C.‚ and at Memorial Sloan–Kettering Cancer Center (MSKCC) in New York.

“Whether you realize it or not‚ cancer changes you. You will never be the same person again‚” says Dr. Rowland.

More Than the Physical
A survivor’s physical condition will depend in large part on the type of cancer he or she had‚ its extent‚ and the treatment received‚ as well as the person’s state of health before diagnosis‚ Dr. Rowland explains.

“The time needed for recovery may often take about as long as the active cancer treatment itself‚” she adds. According to the situation‚ a survivor might need medication‚ cosmetic aids‚ rehabilitation‚ home care‚ or pain control. There may be chronic effects from treatment‚ such as persistent fatigue‚ pain‚ or lymphedema. Possible long–term effects include second malignancies or cardiac problems. Many people will have concerns about body image and sexual intimacy.

Today‚ new treatments have meant that‚ for many people‚ cancer is more like a chronic disease‚ Dr. Rowland says. It’s something that is managed rather than cured outright.

Psychological/Psychosocial
The psychological impact of cancer‚ like the physical‚ is subject to numerous influences. Anger and sorrow at facing mortality are common‚ but for many people‚ the fear of recurrence overwhelms all other concerns. It is a fear that‚ at times‚ does not match the risk‚ Dr. Rowland says‚ explaining that a person with a very small risk of recurrence may become panic stricken at even a minor illness.

“At the same time‚” she says‚ “someone who has a high risk of recurrence may not bother to have a significant symptom checked by a doctor.”

Triggers for the fear of recurrence can be idiosyncratic or common‚ Dr. Rowland says‚ but clearly a definitive trigger for a lot of people‚ she finds‚ is a follow–up visit to a medical professional.

“A patient will become anxious days or sometimes weeks before the appointment‚ and the anxiety will heighten until repeat screening and lab results are in.” Fear of recurrence may be triggered by an anniversary‚ such as the anniversary of the diagnosis or bone marrow transplant. “Things as seemingly minor as driving by the hospital‚ the smell of rubbing alcohol‚ or the aroma of perfume that a nurse wore may trigger fear.”

Other triggers include an unusual ache or pain‚ a friend’s diagnosis or recurrence‚ or the diagnosis or death from cancer of a famous person.
Murray Brennan‚ MD‚ chairman of the Department of Surgery at MSKCC‚ says it is normal for survivors to have some anxiety about having had cancer. In an online article for survivors‚ Dr. Brennan says some anxiety is good.

“We know that the patients who do best are those with realistic expectations‚ so a small degree of anxiety is not only normal but appropriate‚ and can even be helpful in the same way that some apprehension can make athletes perform better.”

But inordinate fear that immobilizes the patient can only be harmful. Dr. Brennan says that patients should have a straightforward discussion with the oncologist about risk of recurrence when they talk about their fear. Don’t let fear feed on fear‚ he adds.

Researchers have found that some survivors exhibit symptoms of traumatic stress disorder‚ a set of reactions similar to those experienced by people who have survived other life–threatening situations‚ such as combat or natural disasters. Symptoms such as nightmares‚ flashbacks‚ intrusive or upsetting thoughts‚ difficulty sleeping and communicating‚ and avoiding situations that remind the person of the cancer are included in this syndrome.

They can be treated with a variety of methods‚ including crisis intervention and cognitive behavior methods. At times‚ medication may be appropriate. Helping patients understand symptoms and learn coping and stress management skills can help‚ as can participation in a support group where patients receive emotional support and can share and learn from other survivors who have faced and mastered similar experiences.

Who is Watching Me Now?
Patricia Ganz‚ MD‚ director of cancer prevention and control research at the UCLA Jonsson Comprehensive Cancer Center‚ says many of her patients’ fears are based on the sense that they are not being watched once treatment has ended and the knowledge that there are often no good techniques to determine if cancer has recurred. She recommends that patients experiencing fear first determine if there is any validity to their concern.

“The partnership between patient and doctor is critical because the patient needs to know that he or she is not hampered in expressing fears and concerns. And the physician needs to give appropriate reassurance‚” Dr. Ganz says.

She says “appropriate reassurance” may include scans or other diagnostic procedures‚ but the patient needs to believe the physician when he or she says that an ache that has been there for a week does not need to be looked into—but it will be explored if it’s there for a month or two.

“If the anxiety persists‚ the patient should seek out support where they can talk about their fears. This is probably not the family‚ but a medical professional such as a social worker‚ counselor‚ or support group‚” she says. “The important thing is for the patient to feel that someone is listening.”

Patients need to explore the history of their reactions before cancer‚ Dr. Ganz says. People who worried before cancer will worry after cancer.

“They have to understand that after cancer‚ they will be different. And it will take time to stop worrying‚” she says.