Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program
Late Effects After Cancer
“Important Research on Quality of Life After Treatment” a personal reflection by Win Hodges
Sole Proprietor, Cancer Communications
The National Cancer Institute’s Office of Cancer Survivorship was established in 1996 to focus on improving the length and quality of life for our growing survivor population. Research sponsored by the Office of Cancer Survivorship has been documenting a number of physical, psychosocial and economic “late effects” of cancer treatment and looking for ways to prevent or treat these effects to improve life for survivors. Equally important is building a knowledge base for survivors and healthcare providers that will help them identify and address these late effects and optimize health after cancer treatment. These issues not only impact quality of life for survivors, they also impact the lives of their families or partners.
In many cancer centers, once treatment has been completed, oncology caregivers expect to be involved only in follow up checkups or in the event of a recurrence or second cancer. It often falls to primary care or pediatric physicians and nurse practitioners to recognize and deal with late effects of cancer and its treatment. Cancer survivors themselves also need to be aware of late effects and their symptoms to help them understand what may be happening when they experience a symptom, so that they can raise the question with their physician or nurse practitioner. Screening tests will play an important role as well in identifying late effect issues. For example, it has been common to provide hearing tests prior to chemotherapy treatment with cisplatin to establish a baseline against which post-treatment tests can be measured to assess the impact of chemotherapy. Testing to establish baselines will need to be expanded to facilitate assessment of the impact of cancer and cancer treatments on quality of life and it will need to be covered by insurance.
The reality for cancer survivors is that symptoms present at diagnosis may or may not disappear after treatment. Side effects which are largely viewed as lingering for a short time after treatment may or may not continue. Late effects may appear months or years after treatment. The good news is that these issues are now being recognized and addressed. Information is being gathered about symptoms and linked symptoms (symptom clusters) and treatments are being explored.
The links between cancer treatment and pain are not always easy to identify since pain is also present with arthritis, heart disease, injury, neurological problems, infection, etc. Fatigue is frequently an acute side effect of cancer treatment, but it is also a symptom of arthritis, heart failure, multiple sclerosis, chronic fatigue syndrome, HIV, anemia, renal failure, lung disease, infection, stroke, etc. The impact of fatigue on quality of life can be significant. Depression often comes with illness, pain, and fatigue, which last for extended periods of time. Sufferers from fatigue find they can do less, that everything takes longer, that they have problems thinking and concentrating and that they make more mistakes. Fatigue may affect family income and is certain to affect family relationships.
Some longer term effects of cancer treatment such as fear of recurrence, lymphedema, sexual dysfunction, and second cancers are more readily linked to the patient’s cancer and/or its treatment. The links are harder to establish with certainty for problems such as arthritis, cardiovascular disease, social or professional insecurity, depression, cognitive loss and memory problems. Many of these latter symptoms also occur as part of the aging process. Researchers are working to prove that late affects from aggressive cancer treatment can accelerate or intensify aging symptoms in older patients. Perhaps research can establish normal ranges of aging symptoms and then be able to better measure the impact of cancer and its treatment. Such impact is much more readily identified in children and young adults where symptoms of aging are not a factor. With a 75% rate for survival for 10 years, children represent a significant survivor population where quality of life issues have a longer term impact.
The two most important issues for improving quality of life for cancer survivors are continuing to fund research and raising awareness among healthcare professionals and among patient and family populations. Research will increase our understanding of the ways in which cancer and cancer treatment can impact quality of life for survivors. It will also help clinicians to develop strategies and treatments for coping with these issues. Not all solutions will involve great expense. It has recently been noted, when treating breast, lung and other chest cancers with radiation—depending on the path of radiation during treatment—that simply having the patient take a deep breath and hold it during radiation can move the heart out of the path of the radiation treatment. This discovery provides a perfect example of a way to reduce cardiac risk while pointing out the importance of raising awareness.
Research into ways to treat cancer that focus on tumor growth triggers and take advantage of genetic discoveries holds great promise for treatments that are more effective and less toxic and damaging than the ones we depend on today. In the meantime, researchers are identifying the late effects of treatment and coming up with ways to prevent or ameliorate them. All of this means enhanced quality of life for cancer survivors and their families.