From The Ted Mann Family Resource Center  http://cancerresources.mednet.ucla.edu

http://cancerresources.mednet.ucla.edu/5_info/5c_archive_lec/2001/late_effects_survivor.htm

Cancer Survivorship: Understanding and Managing
the Late Effects of Cancer Treatment
By Patricia A. Ganz, M.D., UCLA Professor of Medicine and Director, Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center

This article is a summary of the lecture presented on December 4, 2001.

Even though there are 8.4 million cancer survivors living today, medical science is only recently beginning to understand the late effects of cancer treatment on survivors. Approximately 45 percent of survivors are less than five years from their diagnosis, but 12 percent have survived for 15 and 20 years beyond their initial diagnosis. The cancer survivor population is made up of the following types of cancer: breast (22%), prostate (18%), gynecological (12%), genitourinary (9%), colon (9%), hematologic (7%), lung (4%) and all others combined (19%). The sites with the largest number of survivors are the ones that are most likely to be studied because of the ease in finding participants for research. For this reason, breast cancer has received more attention than many other types of cancers.

Some of the difficulties facing researchers who are interested in studying this area is that, despite the expanding number of adults survivors, there are no specific programs or centers oriented toward survivorship and there is a lack of strong linkage between clinical trials databases and follow-up. There are efforts oriented toward changing this. However, there are other problems in the research which have to do with understanding whether the problems identified are truly cancer treatment related or the effects of other variables such as aging and other diseases. Sometimes there is a tendency to attribute a problem or condition to the cancer treatment when in fact it would have presented itself anyway. There are several large trials following patients over time and through this research it is hoped that the late effects of treatment will be better understood. Despite these limitations there have been some studies that shed light on this very important area.

PHYSICAL AND MEDICAL LATE EFFECTS
There is a variety of late effects in the physical and medical domains that affect cancer survivors. Some of the areas of greatest concern are
listed below:

Body changes/scars. Many patients undergo changes in body image as a result of surgery for cancer. Sometimes these surgeries affect the way the body functions, other times the consequences are more cosmetic. Similarly, radiation can also create visible signs and changes to the skin. These changes in body image may be public or private, but regardless, they often affect how a survivor feels and perceives him or herself. These changes often serve as reminders of the cancer experience and the vulnerability that they face even though functioning may remain normal.

Cardiorespiratory function. Certain types of chemotherapy have known toxicities that affect lung and heart functioning. While some of these difficulties may disappear with time, many times these toxicities are life long. One concern is that some of these changes might lead to earlier onset of heart disease for patients who were treated in their early to mid adulthood. In breast cancer patients, the initial studies suggest that there are no changes in lipid levels, however, there is still considerable research to be done in this area.

Cognitive dysfunction. In the early phases of treatment, patients have experienced cognitive impairment, commonly known as "chemo brain," probably caused by multiple sources including chemotherapy, sleep deprivation, anxiety and depression. Many patients have reported that these symptoms continue long after the treatment ends, which is making researchers take notice. Cognitive dysfunction in the form of learning disabilities has been well documented in the pediatric oncology literature in which leukemia patients received high doses of chemotherapy and whole brain radiation. Treatments have been adjusted to reduce the impact on children, but until very recently there has been little work in this area of adult oncology. There is some evidence in the breast cancer population that patients who received adjuvant chemotherapy with or without tamoxifen had deterioration in their neurocognitive performance in the areas of verbal and visual memory. For survivors, these cognitive difficulties are often annoying and must be studied systematically to identify the role of aging versus consequences of cancer treatment.

Fatigue/low energy. A frequent complaint of patients during and after treatment is fatigue and/or a reduction in their energy levels. Some of this may be attributable to changes in blood counts and there are treatments available for anemia-related fatigue. However, there is some evidence to suggest that in patients with persistent fatigue there may be higher levels of cytokines in their blood. Cytokines are a product of the immune system and are activated when people are sick. For some individuals these may not go away once the cancer and treatment is complete which raises many questions for future research.

Infertility. Patients who are treated during their reproductive years may receive injury to their eggs and/or sperm which has the potential to
render them infertile. This can be a devastating consequence for young cancer survivors. Sperm banking is often encouraged for men. For women it is more complicated with regard to reproductive technology. Specialists should be consulted and efforts made to preserve fertility whenever possible.

Premature menopause. Many of the treatments for cancers can create premature menopause. The closer a woman is to menopause at the time of the treatment, the greater the likelihood that it will push her into menopause. For patients with breast cancer, common side effects are increased hot flashes, night sweats and weight gain. One study with 1100 breast cancer survivors, conducted in Los Angeles and Washington DC by Dr. Ganz and colleagues, suggests that patients who had adjuvant treatment had more symptoms than those that did not. Education of patients and symptom management is very important to the well being of the individual.

Osteoporosis and fractures. These late effects may be indirect consequences of premature menopause and the absence of hormones in women. There is some evidence in women who were treated with chemotherapy for breast cancer and were pre-menopausal at the time of diagnosis that they had poorer bone density in the hip and spine than those not treated with chemotherapy. This work is preliminary. In addition, treatment with steroids may also contribute to the greater likelihood of fractures. There are treatments that can strengthen the bones and need to be considered as part of treatment for the cancer survivor who may be at risk.

Chronic pain. Radiation and surgery often cause scarring or damage to nerves. For a small number of patients, chronic pain can be a problem. Chronic pain syndromes can often be treated with a variety of medications and procedures. Behavioral interventions can also be helpful. Referral to comprehensive pain clinics is an important resource for these survivors as they often provide evaluation and treatment.

Sexual dysfunction. Many types of cancer (e.g., prostate, bladder, colorectal, and breast) are associated with changes in sexual functioning. These changes can be very direct effects such as nerve damage leading to erectile dysfunction in men to other more subtle issues related to feelings of sexuality. Sometimes the impact may be indirect in that treatment-caused menopause leads to hormonal changes and subsequent sexual difficulties, e.g., vaginal dryness and pain during intercourse. Early discussion with health care providers and mental health specialists can assist patients in understanding these difficulties and adapting to the changes.

Skin sensitivity to ultraviolet rays. Patients that have been treated with radiation and chemotherapy may be more susceptible to skin cancers. It is important to avoid sun exposure and to protect oneself with appropriate clothing and sun blocks if sun exposure is not avoidable.

Lymphedema. Lymphedema is a swelling that usually occurs when there has been damage to the lymph system. The swelling is the accumulation of lymph fluid that is not able to circulate normally through the vessels and nodes to be reabsorbed and processed by the body. For patients with breast cancer, lymphedema often occurs in the arms due to damage or removal of lymph nodes from surgery or radiation. Patients who have pelvic surgery are more likely to develop this in their lower extremities. This area needs additional research. Current treatment involves a special kind of massage called manual lymph drainage and the constant wearing of compression sleeves to help the body move fluid from the outer extremities back to the primary part of the body. This condition can occur any time after initial treatment and there is a belief that trauma to the extremity can be an initiating factor.

Second cancers. For some survivors, second cancers are an unwanted side effect of successful treatment. These are sometimes caused by the treatment. For example, lymphoma patients who received radiation to the upper body have a higher rate of developing breast cancer as a second cancer. Bladder cancers and leukemia are sometimes caused by chemotherapy. These are not highly frequent occurrences, but they warrant screening, follow-up and vigilance.

PSYCHOLOGICAL LATE EFFECTS
Just as cancers and their treatments affect the physical functioning of survivors, they also can affect the psychological well being of patients. Sometimes these affects are positive and sometimes not.

Depression and sadness. Many patients experience depression and sadness in the early phase of their cancer diagnosis. For most survivors, these psychological effects diminish over time, especially over the first year. For a small minority, depression can be an ongoing concern and should be attended to by an appropriate mental health practitioner.

Anxiety. Like depression and sadness, anxiety often accompanies the initial diagnosis. Most patients have a reduction in anxiety over time; however, there is a tendency to have this experience renewed around check-ups and visits to the doctor. Concern about the future is present for many survivors and worries about recurrence are often present, but rarely debilitating. Many survivors become hyper-vigilant about their health, which appears to come from the feeling that they have been let down by their bodies.

Uncertainty and vulnerability. A cancer diagnosis usually begins a process that makes people feel like life is out of control. This heightened awareness that one is not in control of one's destiny can become amplified for many survivors. It may lead to a real sense of uncertainty about the future. For some this may translate into an inability to plan.

Positive psychological effects. Most studies indicate that survivors of cancer have average to above average "sense of well being" and tend to function at high levels.
Self-esteem and mastery. For many survivors there is a triumphant feeling that they managed to get through a very difficult experience. This often provides them with a sense of accomplishment. Many survivors utilize this sense of mastery to help others who are undergoing cancer treatment. They serve as mentors and role models and participate in programs to assist newly diagnosed patients.

SOCIAL AND ECONOMIC LATE EFFECTS
Affinity and altruism. There is often a sense of affinity to others who have experienced cancer and a need to be in touch with those who have experienced cancer. For some, there can be a sense of isolation or alienation from their family and friends who may not understand what they have experienced. Some survivors experience a need to continue to talk about this experience while family and friends may have put the experience behind them. It is important to find someone to talk to who understands. Many survivors find that the quality of their relationships change. In the process, they identify those individuals who were present for them during the difficult times and may focus on these relationships more intently.

Economic concerns. Cancer can have a devastating impact on an individual's or their family's financial resources. It can also affect the choices that they make about jobs. Some survivors feel they are locked into a job because of the concern that changing jobs and a potential recurrence could have a negative impact. In addition, health insurance can be of concern because of the potential fear of losing it or not being able to be insured in other job situations. This can affect the survivor as well as the partner whose job maintains the health insurance. On the more positive side, a cancer diagnosis sometimes helps individuals to make other job choices such as returning to school or changing jobs to fulfill life long dreams.

EXISTENTIAL-SPIRITUAL EFFECTS
There are often a variety of spiritual and existential issues that arise with a cancer diagnosis and subsequent survivorship. Some of the effects noted include an appreciation for life, a greater sense of what is important, an emphasis on the quality of relationships, and an awareness of being present in the here and now. The awareness that death is possible can change a variety of values and goals. The preciousness of life is often mentioned by survivors when asked about the impact that their diagnosis has had on them.

IMPLICATIONS
It is clear that the growing body of survivors presents new questions for medical research. For example, what are the late effects of treatment and can these be associated with particular treatments? There is a need for more research and cooperation among researchers to identify the true impact of cancer treatment.

Another major concern is how survivors should be monitored after a cancer diagnosis. Many patients are followed by their primary care physician, but there still appears to be a role for oncology specialists. Some believe there should be specialized clinics. It is clear that patients need to play a role in their own care. Here are some recommendations for survivors:

1) Be aware of research on survivorship so that you can prompt your physician to screen for potential late effects, e.g., thyroid screening
for patients who have had upper
body radiation.

2) Keep records of the kinds of treatments that you received. Medical records often are archived and may not be readily accessible as time goes on. Knowing what parts of your body were radiated, what types of chemotherapy you received and the dosages could be helpful in the future as the knowledge about treatments and late effects expands.

3) Openly discuss the need for long term follow-up with your physician. Let your physician know your past history and your concerns about late effects. Ask your physician to be aware of these issues as they evaluate your concerns.

4) Seek opportunities to participate in studies that will assess late effects of survivorship. Through research, insight is gained.

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