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2004 Meet the Expert: Cancer Survivorship—Increasing Survival, Improving Lives
While the improvement of cancer care and prevention have always been central to the mission of the American Society of Clinical Oncology (ASCO), ASCO also recognizes another facet to its mission: helping people living with cancer manage the issues of survivorship.
For this reason, ASCO has developed patient resources, such as the People Living With Cancer website (www.PLWC.org), Patient Guides, and this Cancer Advances series to help people with cancer and their families become better educated about various aspects of cancer including its prevention, screening, diagnosis, treatment, and care.
This issue of Cancer Advances focuses specifically on cancer survivorship. According to the Centers for Disease Control and Prevention, the number of people living with cancer in the United States has increased dramatically from 3 million in 1971 to 9.8 million in 2001 (see figure on page 3). This number represents about 4% of the population.
"While this issue is not new, and there have already been many organizations working hard to address the needs of cancer survivors for many years, we've seen heightened attention and new momentum on the cancer survivorship front," said Roy S. Herbst, MD, PhD, Chair of this Meet the Experts event and Chair-Elect, ASCO Cancer Communications Committee.
A person is defined as a survivor from the moment of a cancer diagnosis. The good news is that today, 64% of adults diagnosed with cancer will be alive five years after diagnosis, and nearly 75% of childhood cancer survivors will be alive in 10 years. While more survivors are living longer after their diagnosis, they must often cope with various issues after treatment.
These include the possibility of a recurrent cancer (cancer that comes back after treatment), a second cancer, physical and psychosocial effects from cancer and its treatment, and a range of practical issues related to adjusting to life after cancer.
"We have learned in detail from survivors that being cancer-free does not mean being free of your cancer," said Julia Rowland, PhD, Director of the Office of Cancer Survivorship (OCS) at the National Cancer Institute (NCI).
The information in this publication was presented at an ASCO Meet the Experts event held in New York City in December 2004. This event highlighted progress against cancer and cancer survivorship in the United States, including a summary of the President's Cancer Panel report on survivorship, survivorship issues in children and young adults, recurrence and second cancers, and the long-term effects faced by cancer survivors.
The information contained in this publication is not intended as medical advice or as a substitute for a doctor's opinion.
Cancer Survivorship in the United States
Who are the nearly 10 million cancer survivors in the United States? According to the OCS: - 70% are between the ages of 50 and 85.
- Approximately 14% were diagnosed more than 20 years ago.
- 60% are survivors of breast, prostate, colorectal, and gynecologic (such as ovarian, uterine, and cervical) cancers.
- 24% of adults with cancer are parents who have a child 18 years old or younger living in the home.
To address the growing needs of cancer survivors and their families, the NCI established the OCS in 1996. The goals of the OCS are to enhance the length and quality of survival, support research on the needs of cancer survivors, and to educate health-care professionals, survivors, and family members about issues and practices important to the overall well-being of cancer survivors.
Cancer is not something that affects just an individual. It affects whole families, communities, and societies, noted Dr. Rowland.
One reason for the increasing number of cancer survivors is the progress made against cancer over the past 30 years. For example, the five-year relative survival rate (the number of people who survive at least five years after being diagnosed with cancer) has improved in children under age 15, rising from 60% in 1975 to 80% in 1996.
According to W. Archie Bleyer, MD, Mosbacher Chair Emeritus and Professor of Pediatrics at The University of Texas M. D. Anderson Cancer Center in Houston and Co-Chair of this event, the progress against cancer in children is well known, but the improvement in survival of adult patients is less well known. Although the number of cancer diagnoses in adults between 50 and 85 years old continues to increase, the five-year survival rates have also increased by an average of 1.7% per year. This statistic means that the increase in adult survival rates has surpassed the rate in children.
What has led to this progress?- Improvements in early detection, such as mammography, prostate screening, and colonoscopy
- A better understanding of the cause of cancer and how cancer develops in people
- The development of new technology that improves the diagnosis and treatment of cancer
- Newer and safer drugs
- Improvements made to supportive care (treatment that improves a person's quality of life, such as antinausea medicine), both during and after treatment
- The presence of national organizations, such as the NCI, cooperative groups, patient advocacy groups, and other organizations that promote awareness and fund cancer research
- Lessons learned from treating children with cancer
Improvements made to the survivorship of children with cancer is due to the fact that nearly every new cancer patient under the age of 15 is seen by a member of the Children's Oncology Group (a large network of researchers, doctors, and other health-care professionals that conduct clinical trials for children at hospitals and clinics throughout the United States and Canada). The only age group that is not showing improved survival is older adolescents and younger adults between the ages of 15 and 40.
A History of Survivorship
The reality of survivorship has evolved along with advances in treating cancer. Fifty years ago, there were no cancer screening tests, and people weren't diagnosed until the cancer was advanced. In addition, there were few treatments available, and many people died shortly after their diagnosis.
When chemotherapy (drugs that kill cancer cells) was introduced, it meant that people might be able to survive cancer, but they suffered serious side effects. However, people still thought of cancer as a death sentence.
"In the 1970s, when I was treated for my cancer...it was a stigmatized disease, not talked about openly or publicly so much as it is today," stated Ellen Stovall, President and CEO of the National Coalition for Cancer Survivorship (NCCS), a survivor-led organization that advocates for quality cancer care. The NCCS was founded in 1986 to advocate on behalf of cancer survivors.
Cancer survivors 20 to 30 years ago faced many challenges:- There were fewer medical information resources available, which made it difficult to find information about a certain type of cancer.
- Treatments were more toxic, such as higher doses of chemotherapy and exposure of more of the body to radiation therapy.
- Treatment lasted longer, mainly because there were no supportive therapies to help neutralize the side effects of treatment.
- Support groups were uncommon.
- There was no legislation to prevent workplace discrimination for people with cancer.
In the 1980s, the issues of survivorship started gaining attention. For instance, CancerCare of New York started a workplace program to help cancer survivors who were working during their cancer treatment.
Today, information about cancer is widely available to the public, and people are more willing to talk about the disease. Chemotherapy doses have been reduced and radiation therapy is now focused on just the tumor instead of the entire body. Targeted therapies, which can control a person's cancer with limited side effects, allow survivors to manage cancer like a chronic disease. Finally, support groups for survivors and their families are available at most hospitals and cancer centers, and many survivors receive specialized advice about nutrition and exercise during and after cancer treatment.
"We now have the opportunity to optimize health after treatment—something we didn't even think about before. We were just trying to get people through treatments," said Dr. Rowland.
The Role of the Oncologist
The increasing number of cancer survivors also changes how oncologists doctors who treat people with cancer) do their job. Fitzhugh Mullan, MD, a cofounder of the NCCS, was one of the first doctors to recognize how cancer care was changing.
"He [Dr. Mullan] pointed out that all too often in cancer care we focus on the issue of cure, and maybe lose perspective when we're only focused on cure," said David H. Johnson, MD, ASCO President.
As an oncologist and cancer survivor, Dr. Johnson has a unique perspective on the challenges faced by both survivors and oncologists: "Shortly after I had completed treatment, I went to my oncologist... and I said, 'Okay, now that I am through treatment, what do I do now? How do I rehabilitate myself?' And his statement to me was 'What do you mean?' And I said, 'Well, there's got to be more to this.' And he told me, 'You should just be happy to be alive.' And I thought about this and suspect that many oncologists had a similar attitude toward their patients, and I thought...have we simply made it through this illness to suffer from many other illnesses?"
Dr. Johnson described Dr. Mullan's concept of the three "seasons of Survival":- Diagnosis, which is characterized by being newly diagnosed, learning about treatment options, confronting one's own mortality, and experiencing constant fear and anxiety
- Extended survival, when patients are coping with a change in body image, a fear of recurrence, physical limitations, and returning to life after cancer
- Permanent survival, when patients are typically thought of as "cured," recognizing that there is no exact moment of a cure
"As he [Dr. Mullan] indicated, it's not a Humpty Dumpty moment. You're not put back together again and all of a sudden back to being completely normal," said Dr. Johnson.
Given the needs of survivors, the role of the oncologist in cancer survivorship should include the following:- Educating survivors about potential long-term effects of treatment and helping them manage these late effects
- Educating and helping survivors and their family members cope with the psychological, social, and economic issues related to cancer and its treatment
- Linking survivors and their families to support services
- Providing guidance on long-term screening and surveillance for recurrent and second cancers
- Ensuring continuity of care, such as assisting survivors with the transition from their oncologist back to the primary care doctor or from a pediatric oncologist to an oncologist who treats adults
As the world's leading professional organization representing physicians of all oncology subspecialties who care for people with cancer, ASCO conducted a survey on survivorship that found that oncologists are becoming more aware of the challenges of treating survivors.
"Roughly three-quarters of oncologists believe that they should be involved in the ongoing care of patients who are survivors of cancer, and that includes general health maintenance, screening, and prevention.
Interestingly, though, only about a third of oncologists say they actually present this information, and about half say they sometimes do, and only 60% say they really feel comfortable providing these services," said Dr. Johnson.
To help bridge this gap and to address the recommendations of the President's Cancer Panel (see sidebar, page 15), ASCO established a Survivorship Task Force to develop, implement, and manage ASCO's survivorship programs. Some of the planned initiatives include:- Incorporating survivorship topics in the updated ASCO Core Curriculum and ASCO Cancer Prevention Curriculum
- Establishing a cancer prevention symposium at ASCO's 2005 Annual Meeting that will address prevention strategies for survivors at high risk for second cancers
- Developing clinical practice guidelines on various survivorship topics, such as late effects of cancer treatment, second cancers, and psychosocial issues
- Working with other major cancer organizations to develop more complete recommendations to guide the post-treatment care of survivors
- Funding awards for research on survivorship issues; four such awards were already funded in 2004
- Highlighting survivorship issues in the Journal of Clinical Oncology, ASCO's peer-reviewed medical journal
- Enhancing survivorship content on ASCO's patient website, People Living With Cancer (www.PLWC.org) in a partnership with the Lance Armstrong Foundation's LIVESTRONG website (www.livestrong.org)
- Partnering with other organizations to enhance knowledge and increase research on survivorship issues
"We definitely want to be able to communicate better," said Dr. Johnson. "Even if we have the knowledge, if we don't communicate that knowledge in the most appropriate way to our patients, it's of no value...So we're going to have to educate, communicate, investigate, legislate, and not procrastinate. That really is the role of the oncologist in survivorship."
Last Updated: March 30, 2005
A Word From The President
Dear Friends,
As the number of cancer survivors continues to grow and the medical needs of cancer survivors continue to be recognized, ASCO is expanding its role to meet these needs. Since the founding of the Society in 1964, improving the treatment, prevention, care, and quality of life for each person with cancer has been at the heart of ASCO's mission. ASCO has enhanced its commitment in recent years by formally expanding its mission to serve not only the informational needs of its members, but also those of its members' patients.
To support this commitment, ASCO publishes Cancer Advances, a series of consumer information resources designed to help inform people of the latest advances in cancer research. This issue of Cancer Advances: Information from the Experts is designed to provide patients and their families with the latest information about cancer survivorship, including survivorship of pediatric and young adult cancers, recurrence and second cancers, and the long-term effects of cancer treatment.
In addition, I am pleased to announce that ASCO has formed a Survivorship Task Force to address the long-term physical, emotional, and practical needs of cancer survivors. This task force will develop, implement, and manage ASCO survivorship programs. As an oncologist and cancer survivor, I am keenly aware of both the medical and nonmedical needs of survivors, and ASCO has an important role in educating physicians about survivor care.
I hope you find this newsletter helpful in understanding the issues faced by more than 10 million cancer survivors. For more information, please visit ASCO's People Living With Cancer website at www.PLWC.org.
Sincerely,
David H. Johnson, MD
ASCO President
Last Updated: March 30, 2005
Survivorship in Children and Young Adults
There are about 250,000 childhood cancer survivors (about 1 in 1000) in the United States, according to the National Cancer Institute's Surveillance Epidemiology and End Results (SEER) program. One in 570 survivors are between the ages of 20 and 34.
"Childhood cancer survivors are an ever-growing population," said Leslie Robison, PhD, Director of the Division of Pediatric Epidemiology and Clinical Research and Professor of Pediatrics at the University of Minnesota in Minneapolis. However, a large proportion of these individuals are not receiving active follow-up care or surveillance, he added.
Why is follow-up so important? About two-thirds of childhood cancer survivors experience a range of long-term effects, and many of these so-called "late" effects may not show up for five, 10, or 20 or more years after treatment. Some of the potential late effects include damage to the heart, lungs, bones, kidneys, and digestive system, and a variety of emotional issues.
Childhood Cancer Survivor Study
To study the needs of childhood cancer survivors and identify those at highest risk for long-term effects, the Childhood Cancer Survivor Study (CCSS) was begun. The CCSS is a resource for the scientific community to address questions in cancer survivorship, according to Dr. Robison.
More than 14,000 childhood cancer survivors from 26 institutions in the United States and Canada agreed to participate in this study. Each participant had to be age 21 or younger at the time of diagnosis, and the diagnosis had to have occurred between 1970 and 1986. This study was a retrospective study, meaning that the participants were chosen after the diagnosis and treatment of cancer. Because all of these survivors were treated at children's hospitals or cancer centers, researchers had access to detailed treatment information.
Some interesting findings from the CCSS include the following: - 68% of all cancer-related deaths were due to a recurrence (return) of cancer.
- 22% of all cancer-related deaths were a result of the late effects of treatment.
- Survivors of childhood cancer were six times more likely to develop a new cancer.
- Bone, breast, thyroid, and brain cancers were the most common second cancers.
- Survivors who had received radiation therapy were at highest risk for developing a new cancer.
"Within 30 years from the diagnosis of the original cancer, we estimate that 15% of childhood cancer survivors will develop a new cancer," said Dr. Robison. "The risk is highest in those that received radiation therapy, and also the risk is...significantly higher in females compared to males. The reason for much of that increased risk is the occurrence of secondary breast cancers."
Aside from breast cancer, childhood cancer survivors are also at risk for the following:
Pulmonary (lung) problems. This includes fibrosis (scarring of the lungs) and recurrent pneumonia. In addition, five-year survivors were three times more likely to require supplemental oxygen.
Endocrine (hormone system) function. For example, 34% of childhood Hodgkin survivors were diagnosed with at least one thyroid problem.
Obesity. Survivors of childhood acute lymphoblastic leukemia (ALL) were at significantly increased risk for being obese as adults due to previous radiation therapy to the head.
Underweight. Survivors of childhood cancer were more likely to be underweight than the general population, which increases the risk of other health problems.
On a positive note, chemotherapy did not increase the risk of miscarriages or stillbirths. However, the children of women who received pelvic irradiation were at a much higher risk of having a low birth weight. Furthermore, women were almost 10 times as likely to experience premature menopause, especially those survivors who received radiation therapy to the ovaries or higher doses of drugs called alkylating agents (drugs that stop cancer cells from growing).
The late effects of childhood cancer are not limited to physical problems. Many survivors also experience changes to their emotional health. According to Kevin Oeffinger, MD, Professor of Family Medicine and Pediatrics at the University of Texas Southwestern Medical Center in Dallas and Director of the After the Cancer Experience (ACE) Young Adult Program, children experience a variety of emotions after cancer, including post-traumatic stress, depression, and anxiety. However, some childhood cancer survivors became more resilient after their experience with cancer.
The CCSS examined the health status (overall health) of 9,500 young adult survivors, including their general health, mental health, physical challenges, the extent to which regular activities were limited, pain after cancer, and anxiety or fears after cancer. Women, survivors of brain and bone cancer, survivors who had a lower income, and those who did not complete high school were more likely to experience these health problems. In addition, survivors had an 80% increased risk of poor mental health (such as anxiety or depression).
The long-term health of childhood cancer survivors is also affected by risky health behaviors, including physical inactivity, smoking, and binge drinking. While these behaviors can cause problems for the general population, they are even worse for survivors. Survivors diagnosed as pre-adolescents (between the ages of 10 and 12) are especially vulnerable to developing risky behaviors.
Finally, obtaining medical care that is tailored to the individual and unique needs of the survivor can be difficult for a variety of reasons: - Inadequate health insurance, which affects a survivor's ability to receive follow-up care and appropriate screening tests
- Lack of understanding and knowledge about the type and dose of cancer treatment received
- Lack of training or experience of primary care doctors in providing survivor care
- Fears and concerns about future health or a desire to "forget" the previous cancer experience
- The process of becoming disconnected from the cancer center where treatment was delivered
An ideal follow-up care plan for survivors incorporates information about the risks of their previous cancer and cancer treatment with lifestyle behaviors, genetic predispositions, and other medical conditions.
"The challenges we have in the upcoming years is increasing our capacity for survivor health care at the cancer centers and children's hospitals, developing and targeting interventions, learning how to transition survivors as they get older, and then, importantly, standardizing our best practices," said Dr. Oeffinger.
Children's Oncology Group Guidelines for Follow-Up Care
The Children's Oncology Group (COG) recently issued guidelines (www.survivorshipguidelines.org) to assist doctors and childhood cancer survivors in identifying and reducing the risk of long-term effects of childhood cancer. "Our goals were to facilitate early identification of late effects, promote healthy lifestyles, provide ongoing monitoring of health status, and finally, to provide timely intervention of the late effects," said Smita Bhatia, MD, MPH, Director, Epidemiology and Outcomes Research, Division of Pediatrics, City of Hope Cancer Center, Duarte, CA.
These guidelines are intended for survivors of childhood cancers who received treatment two or more years ago and who did not have any symptoms of long-term effects and the doctors and nurses who provide ongoing health care to survivors, explained Dr. Bhatia. The guidelines are unique in that they are based on the type of therapy survivors received rather than their cancer diagnosis.
Furthermore, these guidelines are based on evidence from the medical literature and the combined clinical experience of the panel of experts that helped develop the guidelines.
The guidelines include: - Lists and descriptions of the various cancer treatments a survivor may have been given, such as chemotherapy, radiation therapy, surgery, stem cell transplantation, and blood transfusions
- The potential late effects of treatment
- Known risk factors for developing late effects, such as the type and dose of therapy, health behaviors (smoking, exercising), and pre-existing or co-existing medical conditions, along with personal characteristics of the survivor (age at treatment, sex, genetic predispositions, ethnicity, and race)
- Recommended evaluations, such as clinical exams, screening tests, and psychosocial assessments, and how often these evaluations should be performed
- Recommended counseling to reduce the risk of late effects and promote early detection
One resource that may help survivors and their doctors in the future is called the Passport for Care developed by David Poplack, MD, and Marc Horowitz, MD. Passport for Care is an Internet-based resource that allows both survivors and their doctors to access individualized health-care guidelines and resources, based on the survivor's previous cancer treatment.
When Passport for Care is complete, the program will provide a summary of treatments for each survivor, individualized guidelines for care, alerts to changes in these guidelines, and information about opportunities to participate in relevant clinical trials. "Survivor participation is voluntary," said Dr. Horowitz. "The survivor controls the sharing of information on the site, and of course, the information and access is secured by the latest technology." Dr. Horowitz also emphasized that Passport for Care will not provide a comprehensive medical record, nor will it substitute for ongoing medical care. "The purpose of Passport for Care is to empower survivors to facilitate their own long-term care."
Cancer Survivorship and the Institute of Medicine
The Institute of Medicine (IOM) is a nonprofit organization that was chartered in 1970 as a component of the National Academy of Sciences. The mission of the IOM is to serve as adviser to the nation to improve health. The Institute provides unbiased, evidence-based, and authoritative information and advice concerning health and science policy.
The National Cancer Policy Board is part of the IOM, and its role is to address broad policy issues that affect cancer in the United States and to recommend ways to advance the Nation's effort against cancer. The board consists of 20 members drawn from outside the federal govern-ment, include health-care consumers, providers, and researchers.
In 2003, the IOM published a report, "Childhood Cancer Survivorship: Improving Care and Quality of Life," which addresses many of the issues facing survivors of childhood cancer. A similar report on improv-ing the care and quality of life for adult survivors is expected in late 2005 and will define appropriate post-treatment care, with recommen-dations that will include developing standards of care for follow-up and surveillance of adult cancer survivors.
More information about both reports can be found at www.iom.edu.
Last Updated: March 30, 2005
Facing the Risk of Recurrence and Second Cancers
After treatment concludes, cancer survivors of all ages face the risk of their cancer returning. This return is called a recurrence. The difficult aspect for survivors is the unpredictability—the cancer could come back several months later, many years later, or not at all.
Recurrent cancer results from cancer cells that were not completely removed or destroyed by the original treatment. Recurrences may occur near the original site of the cancer, in lymph nodes or tissues near the original site of the cancer, or in a tissue or organ far from the original site of the cancer.
In contrast, a second cancer is a new cancer that develops in someone who was previously diagnosed with a different cancer. Cancer survivors have almost twice the risk of developing a second cancer as the general population has of developing cancer in the first place. Unlike a recurrence, second cancers are biologically different from the original cancer.
One reason that cancer survivors are more likely to develop another cancer could be due to the same risk factors that were linked to the first cancer, such as smoking or specific genetic conditions.
Another cause of second cancers is the treatment for the first cancer, including chemotherapy, radiation therapy, and bone marrow transplantations. For example, a cancer of the mouth called oral squamous cell carcinoma is the most common second cancer that occurs in survivors who have had bone marrow transplantations.
Childhood cancer survivors have an especially high risk of developing second cancers. The most common second cancers are leukemia, lymphoma, central nervous system cancers (such as brain cancer), sarcoma, melanoma, and thyroid cancer. Like adult survivors, the original cancer treatment may increase a childhood cancer survivor's risk of developing a second cancer.- Women survivors of non-Hodgkin lymphoma who received radiation therapy to the chest have an increased risk of breast cancer about 20 to 25 years after treatment.
- Some groups of chemotherapy drugs are associated with an increased risk of leukemia, including alkylating agents (drugs that stop cancer cells from growing), platinum compounds (drugs that slow down the growth of cancer cells and contain a metal called platinum), and anthracyclines (a group of antibiotics used to treat cancer).
- Radiation therapy is associated with an increased risk of leukemia and tumors of the thyroid, skin, breast, bone, and brain.
Chemoprevention
Chemoprevention is the use of drugs to reduce the risk of the development or recurrence of cancer. According to the National Cancer Institute, more than 40 chemoprevention agents are being studied in cancer clinical trials.
The first clinical trials to study the prevention of second cancers in survivors were done about 15 years ago, according to Scott Lippman, MD, the Ellen F. Knisely Distinguished Chair in Colon Cancer Research and Professor of Medicine and Cancer Prevention at The University of Texas M. D. Anderson Cancer Center in Houston. These trials examined whether a nutritional supplement could prevent a second cancer in survivors of head and neck cancer.
According to Dr. Lippman, this study was important because it demonstrated that a drug could reduce the risk of developing a second cancer in survivors. This clinical trial led to a number of other important studies.
The following therapies have been developed or are in development to reduce a survivor's risk of a recurrence or development of a second cancer:- Tamoxifen is used to reduce the risk of recurrence in women treated for hormone receptor-positive breast cancer and the risk of cancer in the opposite breast (contralateral breast cancer).
- Aromatase inhibitors, such as anastrozole (Arimidex), exemestane (Aromasin), and letrozole (Femara), are also being used to reduce the risk of recurrence in postmenopausal women with hormone receptor-positive breast cancer.
- Celecoxib (Celebrex) and other drugs called COX-2 inhibitors are being studied to determine whether they prevent recurrence or second cancers in survivors; however, recently these studies have shown that these drugs also increase the risk of heart attack and stroke.
- Retinoids (drugs similar to vitamin A) reduce the risk of second cancers and prevent precancerous growths in survivors of head and neck and lung cancers. However, retinoids were shown to be harmful in lung cancer survivors who were smokers, but helpful in survivors who had never smoked. In addition, these drugs can cause skin disorders and birth defects.
According to Dr. Lippman, new research indicates that tobacco smoke helps turn on the molecular switch that is already overactive in lung cancer cells. This finding may help explain why retinoids are harmful in lung cancer survivors who smoke.
While chemoprevention is a promising way of reducing the risk of recurrence and second cancers, these agents are currently only available for certain types of cancer. In addition, more research needs to be done to understand how a person's behavior (such as smoking) and type of cancer (such as hormone receptor-positive breast cancer) influence the effectiveness of chemoprevention methods.
Last Updated: March 30, 2005
Physical, Emotional, and Practical Issues
Long-term effects of cancer treatments, also called late effects, are physical and emotional side effects that occur months or years after treatment. A survivor's individual risk of developing late effects depends on the type and amount of cancer treatment they received and their age at the time of treatment.
Predicting this risk for an individual is difficult because virtually all tissues and organs in the body may be affected by cancer treatment. In addition, survivors face a variety of related practical issues after cancer treatment.
Physical Effects
The physical effects of cancer treatment can occur weeks, months, or years after treatment ends. These late effects can include:
- Cardiorespiratory difficulties, such as shortness of breath, fibrosis (scarring) of the lungs, and congestive heart failure
- Fatigue (extreme tiredness), which can persist for a long time after treatment
- Cognitive dysfunction ("chemo brain"), including difficulty concentrating or finishing tasks, short-term memory problems, confusion, and an inability to think clearly
- In men: impotence (the inability to have or maintain an erection), infertility, and incontinence (inability to control the flow of urine from the bladder)
- In women: premature menopause, infertility, vaginal dryness, loss of libido (sexual desire), pain during sexual intercourse, and the inability to reach climax
- Chronic (long-term) pain
- Kidney damage
- Lymphedema (swelling caused by extra fluid in the tissue, usually in the arms or legs)
- Osteoporosis (brittle bones) and fractures, especially in survivors treated with hormone therapies (such as breast and prostate cancers)
- Second cancers
- Neuropathy (tingling or numbness in the hands or feet)
While many of these late effects can be monitored by doctors, many survivors may not connect new symptoms with their previous cancer treatment. "I think that what a lot of people with cancer deal with, and what's not often talked about are a lot of hidden disabilities," said Ellen Stovall, President and CEO of the National Coalition for Cancer Survivorship. These hidden issues can include pain, numbness, and physical difficulties caused by surgery or scar tissue.
Although it is important for survivors to be aware of the potential late effects of cancer treatment, not all survivors experience them. "I think the positive message is that most survivors are actually going to be doing well in spite of some of these serious and less-serious side effects," said Patricia Ganz, MD, Director of the Division of Cancer Prevention and Control of the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles.
Emotional Issues
Cancer survivors experience a variety of short-term and long-term emotions, both positive and negative. While sadness and depression are common in some survivors, and it's realistic to have concerns about the future, many survivors are grateful, said Dr. Ganz. They often feel a sense of accomplishment, find substantial meaning in this experience, and gain a new perspective on life.
According to Dr. Ganz, many survivors function well after cancer. They have a better self-esteem and sense of mastering the cancer experience. However, survivors do have increased health worries and concerns about the future, and many survivors feel as if their body has "let them down." In addition, it is common for survivors to experience a sense of loss for what might have been had they not been diagnosed with cancer.
Living with uncertainty is a difficult reality for survivors, according to Diane Blum, MSW, Editor-in-Chief of ASCO's patient website, People Living With Cancer (www.PLWC.org)and Executive Director of CancerCare, Inc., a national nonprofit organization that provides emotional support, information, education, and financial assistance to anyone affected by cancer.
"We have a lot of people who call us and say, 'you know, I checked off every day on a calendar while I was getting treated, counting the days until I could be done. And now I'm done, and I'm a nervous wreck...I'm not seeing my doctor all the time...How am I going to cope with this on my own?'"
According to Doug Ulman, Director of Survivorship for the Lance Armstrong Foundation and young survivor of three different cancers, fear of recurrence is common among survivors. "Every time I get a headache, my wife automatically fears the worst," he said.
Moreover, relationships with parents, siblings, and spouses may become strained because problems that existed before the diagnosis resurface. "We see people all the time who are dealing with old problems," said Ms. Blum. Once the cancer treatment is finished, previous issues resurface, such as an unhappy marriage or dissatisfaction with a job.
Dating and developing new relationships can also become more stressful. Changes to a person's body from cancer treatment or sexual side effects of cancer treatment add to this anxiety. In addition, friends that survivors had before cancer treatment may always see the survivor as "sick," even if the cancer was treated many years ago.
Some survivors experience isolation from their peers, especially if they are younger. "The older people get, the more of a peer group they have of people who have had cancer, but the younger you are, the more you have that unpleasant sense of being alone with this," said Ms. Blum. Younger survivors also struggle with becoming independent of their family and the medical community once treatment ends.
Socially, many survivors express a desire to help other cancer patients or people in general. For example, many survivors volunteer with patient advocacy groups or hospitals or start their own organization that meets a unique need. In addition, many survivors find that their values and goals have changed. For example, Dr. Ganz described a fellow doctor who decided to go back to school after her breast cancer diagnosis and now conducts a community orchestra.
Practical Issues
Aside from the physical and emotional issues, survivors must cope with a variety of financial, insurance, and employment issues. Many cancer survivors, even those with insurance, have large medical bills, which can become a burden of debt if the survivor had to stop working or cut back on their hours.
Once diagnosed, obtaining health, life, and disability insurance can be difficult. Even those survivors who have health insurance may not be able to afford the copayment for continuing care, such as computerized tomography (CT) scans. In addition, insurance coverage for psychosocial and follow-up care is inadequate to meet their needs.
Mr. Ulman agreed: "I stand here before you as somebody with a dream job and a great insurance plan, and yet for me long-term follow-up is very expensive..." Life and disability insurance for cancer survivors is either unavailable or unaffordable.
Transportation is another significant issue facing cancer survivors. According to Ms. Blum, "50% of the people who call CancerCare each week have a financial assistance request, and of those 50%, 80% fall into transportation. Transportation to treatment, to followup, to whatever kind of care you need, is a problem if you live in Brooklyn or if you live in Montana..."
Although survivors are more protected from workplace discrimination by various laws (see list below), many survivors report subtle forms of discrimination. "In my early career, people really were discriminated against—they were fired when they had cancer; it is much harder to do that now, but there's all kinds of subtle discrimination we hear," Ms. Blum said.
Over the past 30 years, laws have been enacted that provide limited employment and insurance protection for workers or family members of workers with disabilities or serious illness such as cancer.
These include the following laws:
- Americans With Disabilities Act (ADA) of 1990
- Federal Rehabilitation Act of 1973 (which also includes a 1998 amendment)
- Employee Retirement Income Security Act (ERISA) of 1974
- Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1985
- Health Insurance Portability and Accountability Act (HIPAA) of 1996
More information about the protection these laws provide can be found on the websites of the following organizations: CancerCare (www.cancercare.org), Lance Armstrong Foundation (www.livestrong.org), and NCCS (www.canceradvocacy.org).
Survivorship and the 2004 LIVESTRONG Poll
A recent LIVESTRONG poll from the Lance Armstrong Foundation surveyed 1,000 people living with cancer in the United States. According to the results, nearly half (49%) of survivors feel that their nonmedical needs are not being met by the current healthcare system and are more difficult to cope with than the actual medical issues.
In addition, 78% of respondents did not seek the services of a counselor, social worker, psychologist, or psychiatrist. "The poll also found that people living with cancer lack resources for emotional support," said Mr. Ulman. "People living with cancer are often not seeking out emotional support services, which we found very interesting...if you're not given information and you don't know that things are out there, you're not going to seek them out."
On a positive note, 47% of the respondents agreed that dealing with cancer has forced them to focus on their lives, and as a result, feel that they are leading better lives after the diagnosis.
Furthermore, more than half of the respondents want to share their experience with others. "The people, no matter what they've been through, no matter the harshness of their treatment, they come away with something positive," said Mr. Ulman.
To assist survivors in dealing with these issues and finding the necessary resources, CancerCare and the Lance Armstrong Foundation have formed a collaborative program called LIVESTRONG SurvivorCare that is free to cancer survivors and their families who are referred through the LIVESTRONG survivor education program. "People need to know about these resources so they can make use of them to try and help them overcome some of the obstacles they might have," said Ms. Blum.
The services include individual counseling with CancerCare's trained oncology social workers, telephone support groups, an online forum on survivorship issues moderated by trained social workers, and other forms of education, information, and referrals.
To learn more, please visit www.cancercare.org, www.livestrong.org, or call CancerCare at 1-800-813-HOPE (4673).
"The overwhelming goal is, you really want people to be able to live the kind of life they want to with the kind of quality that they want, if they are fortunate enough to be cured of their cancer," said Ms. Blum.
Last Updated: March 30, 2005
Infertility Risks and Options
Infertility refers to the inability to conceive a child or maintain a pregnancy and is a concern of many cancer survivors. In fact, a study published in the October 15, 2004 issue of the Journal of Clinical Oncology reports that concern about infertility resulting from chemotherapy is very common among young women.
What are the risks? It is estimated that a woman who undergoes chemotherapy or receives radiation therapy to the pelvic region has a 40% to 80% chance of becoming infertile. Many chemotherapy drugs cause premature menopause, which can be permanent or temporary. Furthermore, only 57% of cancer survivors in their reproductive years recall receiving information from a health-care provider about the risk of infertility from cancer treatment.
"A lot of people think infertility is only a risk if you have testicular cancer or cervical cancer, not if you have—as I had—tongue cancer or a brain tumor," said Lindsay Nohr Beck, Founder and Executive Director of Fertile Hope, a national nonprofit organization that provides reproductive information and support to cancer patients and survivors.
According to Ms. Beck, there are many options to preserve fertility or to have a family before, during, and after cancer treatment.
Fertility-preserving options for men before beginning cancer treatment include the following:- Sperm banking (freezing of sperm for later use)
- Testicular sperm extraction, where sperm are removed from a biopsy of testicular tissue and preserved for future use
- Testicular freezing, an experimental procedure in which tissue from the testis is removed, frozen, analyzed, and stored for later use
Options for men after treatment (if fertility was not preserved) include:- Testicular sperm extraction (with residual sperm that may be present in testicular tissue)
- Use of donor sperm
- Adoption
Fertility preservation options for women exist before, during, and after treatment and include:- Embryo freezing, where a woman's eggs are removed, fertilized, and stored until she is ready to become pregnant
- Freezing unfertilized eggs, which is still experimental
- Freezing ovarian tissue that will later be transplanted back into the woman's body, which is also experimental
- Ovarian transposition, which is the surgical movement of ovaries away from the field of radiation before radiation therapy
- Gonadotropin-releasing hormone (GnRH) analog treatment, which artificially causes prepuberty and may reduce damage to reproductive organs during chemotherapy
- Ovarian shielding, which is the protection of the ovaries during radiation therapy
- Radical trachelectomy, which is the surgical removal of the cervix but not the uterus, so that women with cervical cancer can still have children
Many survivors are able to conceive a child naturally. "It's really important to know that infertility isn't a given. It's not guaranteed. But fertility isn't guaranteed either, so really understanding treatment options and how specific treatments will affect the body and how people need to plan for that over time is important," said Ms. Beck.
Although the research is limited, pregnancy after cancer treatment appears to be safe. For example, the birth defect rates of children born to survivors are similar to that of the general population, about 2% to 3%. In addition, pregnancy after cancer does not appear to cause the cancer to return. Based on studies of breast cancer survivors, most cancer doctors recommend waiting two years before attempting to become pregnant, mainly because this is the time in which the cancer is most likely to return.
Recognizing that fertility treatment decisions can be expensive, Fertile Hope created the first-ever financial assistance program to help patients afford fertility preservation. This program is called Sharing Hope and assists both men and women through partnerships with the Genetics & IVF Institute, Serono Inc., and the Lance Armstrong Foundation. More information and applications for financial assistance can be found at www.fertilehope.org or by calling 1-888-994-HOPE (4673).
Last Updated: March 30, 2005
Living Beyond Cancer: Finding a New Balance
In 2003 – 2004, the President's Cancer Panel formally examined the issues of survivorship in the United States. The President's Cancer Panel was established in 1971 and is charged with overseeing the National Cancer Program and reporting any delays in the execution of this program to the President and the United States Congress.
Between May 2003 and January 2004, the panel held five hearings to learn about the issues facing cancer survivors. "People let us know it was not just that you live, but how you live. The quality of life is very important," said LaSalle D. Lefall, Jr., MD, Chair of the President's Cancer Panel and Charles R. Drew Professor of Surgery at Howard University College of Medicine in Washington, DC. The other members of the panel included Margaret L. Kripke, PhD, Executive Vice President and Chief Academic Officer of The University of Texas M. D. Anderson Cancer Center in Houston, and Lance Armstrong, cancer survivor and six-time Tour de France winner.
The major issues faced by survivors depended upon the age at diagnosis. For example, survivors of childhood cancers were most concerned about getting back to their regular lives, such as school, after treatment; not having a record of the treatment they received; and not knowing about the possible long-term effects of cancer treatment.
Adolescents and young adults (ages 15 to 29) faced similar issues as the children, but also faced unique financial issues. Furthermore, people in this age group were diagnosed with a wide variety of cancers, some more common in children and some more common in adults, making it difficult to develop treatment protocols.
The primary issues facing cancer survivors that were diagnosed between the ages of 30 and 59 were balancing their roles as primary caregivers and wage earners while continuing to work during cancer treatment to maintain insurance coverage. Cancer survivors over the age of 60 were generally underinsured, on a fixed income, and had coexisting health problems. In addition, these survivors reported a lack of adequate support systems.
To address these concerns, the President's Cancer Panel issued general recommendations for healthcare providers and cancer survivors as well as specific recommendations for each age range described above. The general recommendations were published in the final report, Living Beyond Cancer: Finding a New Balance, and include:
- Maintaining a record of care
- Developing an individualized follow-up care plan
- Providing access to psychosocial support
- Developing a confidential, electronic health record
- Investigating effects of new privacy laws on survivors' ability to access information
- Reforming the health-care system in the United States to better meet the needs of survivors
Specific recommendations include:
- Assisting childhood and adolescent survivors, along with their parents and teachers, to successfully reenter school
- Working with public agencies and private organizations to find the best ways to capture treatment and survival data for adolescent and young adult survivors
- Providing information before cancer treatment about options for preserving fertility and the possible long-term effects of treatment on pregnancy or future children
- Assessing the impact of changes to Medicare legislation on access to care and follow-up services for older adult survivors
- Helping health-care providers determine the social and caregiver support system of older adult survivors at diagnosis, during treatment, and at intervals after treatment is finished
Last Updated: March 30, 2005
Survivor Spotlight: Geraldine Ferraro
Geraldine A. Ferraro, former Congresswoman and the first woman candidate to run for Vice President of the United States, is a survivor of multiple myeloma.
"In December of 1998, I had gone for a routine annual checkup, just coming off losing a primary race for the United States Senate, and though I was feeling a little bit tired, I attributed that to a little bit of old age and a little bit to political battle fatigue," Ms. Ferraro said.
Once she learned of her diagnosis, she was stunned. "Not only had I been slammed in the head by the two-by-four known as mortality, but neither John [her husband] nor I had a clue about multiple myeloma. We'd never even heard of it." Her doctor explained that it was a blood cancer that attacks the bones, and most people don't know they have it until a bone breaks. "I had no such symptoms. I was feeling just fine," she said.
Her cancer was indolent (inactive) for 18 months before she needed treatment. Two years later, Ms. Ferraro made the decision to publicize her diagnosis and raise public awareness about multiple myeloma. "I also wanted to raise government monies for research, and we achieved both goals. In May of 2001, after a bit of lobbying, we were invited to the Oval Office for the signing of the Hematological Research Act, which authorizes $275 million for research and education; $250 million goes to the Joe Moakley Research Bill. Joe was a good friend of mine. He served in the Congress with me. He was a leader. He died of leukemia." The rest, $25 million, goes to the Geraldine Ferraro Education Fund.
Ms. Ferraro has taken a variety of medications to treat her myeloma and participated in a clinical trial for lenalidomide (Revlimid). In the future, Ms. Ferraro plans to continue to promote education and awareness about multiple myeloma. "Since my testimony, I've been deluged with letters and emails and also phone calls from people all over the United States experiencing multiple myeloma...I always begin my part of the conversation with, 'So, the first thing I want you to know is, this is not a death sentence.' I think organizations like ASCO have helped make it possible for me to say something like that."
Last Updated: March 30, 2005
Cancer Survivorship Resources
Last Updated: March 30, 2005
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