Making the Transition from Cancer Patient to Cancer Survivor
About the Lecture
After a cancer diagnosis, many patients are consumed with the details of treatment: recovering from surgery, enduring chemotherapy and/or radiation. But what happens when the day comes that treatment is completed? There is a growing movement to coordinate communication and care between cancer specialists and primary care physicians so that cancer survivors can receive appropriate medical care throughout their lifetime. This session equips cancer survivors to ask the right questions and to obtain the best information on follow-up care after cancer treatment ends, including needed cancer surveillance, cancer prevention and health promoting activities after their treatment is completed. This session is sponsored in part by the UCLA-LIVESTRONG™ Survivorship Center of Excellence as designated by the Lance Armstrong Foundation.
Patricia Ganz, MD, is a Professor of Medicine in the Division of Hematology/Oncology at the David Geffen School of Medicine and Professor of Health Services as well as the Director of the Division of Cancer Prevention and Control Research at UCLA’s Jonsson Comprehensive Cancer Center. Dr. Ganz is a medical oncologist and active researcher in the field of quality of life and survivorship issues and developed and serves as the director of UCLA’s LIVESTRONG™ Survivorship Center for Excellence for Cancer Survivors. Dr. Ganz is also an American Cancer Society Clinical Research Professor. She has a keen interest in all areas of survivorship and the short and long term effects of cancer therapies on individuals treated for cancer and her numerous awards, recognitions and publications reflect a long history of scholarship and practice in this area.
Janet P. Pregler, MD, is a Clinical Professor of Medicine at the David Geffen School of Medicine and director of the Iris Cantor-UCLA Women’s Health Center and the director of the UCLA National Center of Excellence in Women’s Health. As a practicing primary care physician, she has a special interest in care of cancer survivors. Dr. Pregler is a nationally recognized educator and advocate in women’s health, including in the area of primary care of breast cancer survivors, and is board certified in internal medicine. Dr. Pregler has received numerous honors and awards recognizing her impact on women’s health and policy.
This is a summary of a lecture presented on June 15, 2010.
There are currently approximately 12 million Americans who have a personal history of cancer, equivalent to approximately 3.7% of the United States population. Each year approximately 1.5 million people are diagnosed with cancer; 1 million of those will be treated with intent to cure. Many of these people will go on to have cancer free survivals, with some being managed as a chronic disease or having intermittent episodes of disease recurrence. We anticipate the number of cancer survivors will increase sharply during the next 25 years as baby boomers live past 65 years old, the peak years when cancer is diagnosed. These individuals are the ones towards whom survivorship care needs to be most pointedly directed.
Cancer treatment is particularly complex, expensive and often involves using multiple modalities, e.g., surgery, radiation therapy, chemotherapy and now more novel targeted therapies. Each of these treatments has its own associated toxicities. Because treatment is multi-modal there are many specialists involved in the care of patients with cancer; on average at least three specialists per patient. One outcome of having such a large multi-disciplinary team is that care is not always well coordinated among the specialists. Treatments are often given across time and in a variety of settings: as outpatients, as inpatients and in specialized treatment facilities. When a person is seen in an inpatient setting, treatment summaries or discharge notes are required. Outpatient settings do not require treatment summaries at the end of a course of therapy; instead, there are usually individual progress notes done by the physician on many separate dates. A summary that outlines the treatment received, side effects and potential late effects is rarely done and never required in the outpatient setting. Communication among treating physicians may be limited, especially if they are not working in the same healthcare facility and sharing a common medical record. All of this creates multiple medical records making it more difficult to have a comprehensive medical file for a cancer patient.
Survivorhood has other challenges and there are few systematic studies of the late effects of cancer therapies to which physicians can turn for guidance as problems develop. Follow-up care plans are ad hoc with much of the focus on surveillance for a cancer recurrence rather than on late effects of prior treatments. This raises the question: Should the care team begin to focus on health promotion and chronic disease prevention when cancer therapy has ended?
There have been a number of strategies proposed to address these challenges. Having integrated and electronic medical records is one such strategy that is increasingly considered. Some facilities have patient navigators that help patients manage their care and there could be some sort of consultation model to help patients plan their cancer treatment care plan. The problem is that none of these strategies are widely available for patients receiving active treatment and the question still remains about what happens when treatment ends.
One potential solution is to make certain that every patient has a survivorship care plan. The purpose of a such a plan is to (1) summarize and communicate what transpired during cancer treatment, (2) to describe known and potential late effects of cancer treatments and the expected time course, (3) to communicate to the survivor and other health care providers what has been done, (4) determine what needs to be done in the future, and to (5) promote a healthy lifestyle to prevent recurrence and reduce the risk of other co-morbid conditions.
The key elements included in a high quality survivorship care plan are:
- Specific tissue diagnosis and stage
- Initial treatment plan and dates of treatment including whether planned treatment was completed
- Toxicities during treatment
- Expected short-and long-term effects of treatment
- Monitoring that is needed for the detection and treatment of late toxicities
- Surveillance for recurrence or second cancer
- Who will take responsibility for survivorship care such as mammograms, bone density scans, etc.
- Psychosocial needs that often do not arise until after treatment is over or changes as the individual begins to return to their previous life
- Vocational needs
- Recommended preventive behaviors/interventions
In 2006, the Institute of Medicine (IOM) issued a report related to cancer survivorship entitled From Cancer Patient to Cancer Survivor: Lost in Transition. The importance of continuity of care and these survivorship care plans were an important recommendation that came from this extensive report about the needs of survivors post treatment.
Various organizations have encouraged the development of strategies to make survivorship care planning more integral to care, including the American Society of Clinical Oncology (ASCO), LIVESTRONG Survivorship Care Plans and Journey Forward. ASCO has developed a rather simple checklist to be completed at the end of treatment by the oncology physician coordinating care (e.g. often the medical oncologist). It does not address some of the longer term psychosocial and late effects issues but describes what transpired during treatment. The LIVESTRONG Care Plan is available through Penn Medicine’s OncoLink and can be found at http://www.livestrongcareplan.org. It can be completed by the patient/survivor or their health professional. If patients complete the form they should get specific treatments, dosages and dates from their health care professional since it cannot provide an effective survivorship care plan without this information. It gives a comprehensive listing of a wide range of potential side effects from different treatment exposures. Patients should review the plan with their physicians. It is also in the process of being refined and updated.
Journey Forward is a survivorship care plan initiative in collaboration with UCLA Cancer Survivorship Center, the National Coalition for Cancer Survivorship (NCCS), Wellpoint and Genentech. At www.journeyforward.org there is a survivorship care plan builder that includes a free downloadable tool to be completed by the treating oncologist. It creates a customized, post-treatment care plan for cancer survivors in five quick steps. There is also a patient toolkit. The Survivorship Care Plan can be printed, saved, edited or emailed.
A survivorship care plan is important for all cancer patients, even those who may have had relatively simple treatment because it provides information about follow-up care as well. It is especially helpful for those patients who may have temporarily left their primary care physician for their oncologic care and it helps re-establish care with the primary care physician.
At UCLA, the UCLA-LIVESTRONG™ Survivorship Center of Excellence is testing models of survivorship care at the UCLA Medical Center and three community collaborators (Torrance Memorial Medical Center, Health Care Partners Medical Group, and UCLA-Olive View Medical Center). The focus is on the development and evaluation of diverse models of cancer survivorship health care delivery.
At UCLA, one program available to cancer survivors is the VITA program, which stands for “Vital Information and Tailored Assessment.” This program is usually a one-time visit during which the patient meets with a psychologist or oncology social worker (from the Simms/Mann – UCLA Center for Integrative Oncology), a nurse practitioner and a medical or pediatric oncologist. The key activities during the evaluation include:
- Survivorship consultations and the development of care plans for adult survivors of cancer. This includes obtaining the medical records and summarizing treatments and making recommendations for care, surveillance and follow-up.
- A long-term follow-up clinic for childhood cancer survivors in which the pediatric oncologist works to provide ongoing care and follow-up along with other members of the team.
- Consultations and coordination of care for adult survivors of childhood cancer including care plans and recommendations for follow-up care.
- Symptom management for cancer survivors.
The goal of these consultations is to help coordinate care with the primary care physician by using the treatment summary and survivorship care plan as a focus. Because patients also get a copy of the treatment summary and care plan they can become empowered to advocate for their needs and initiate communication with their physicians as well.
Determining when long-term survivorship begins is a bit of a definitional problem, but survivorship planning should begin at the moment of diagnosis when treatment decisions are being made. Treatment summaries should be done when treatment ends with the idea that they can be updated should there be a recurrence or additional treatment. Dr. Ganz has three P’s of survivor care that should be the primary goals:
- Health Promotion
Unfortunately, palliative care is often a focus only when cancer is progressing and is often thought of as part of a progression toward end of life care. Palliative care, however, is symptom management and should be an integral part of survivorship care regardless of the presence of disease. Palliative care is medical care or treatment that concentrates on reducing the severity of disease symptoms. The goal is to prevent and relieve suffering and improve quality of life for people facing complex illness. The most common palliative care concerns that face survivors are:
- Physical limitations
- Cognitive Changes
- Sexual dysfunction
- Menopause related symptoms
- Body Image
Depending on the kinds of symptoms and difficulties that are ongoing, it is often helpful to get consultation from a variety of specialties. Some of the common specialties that are utilized include mental health, pain management, physical medicine/vocational rehabilitation, endocrinology, cardiology, gynecology/fertility, pulmonary and neurology/neuropsychology.
Prevention and health promotion are also important areas to consider. The goal is to screen where appropriate and to detect, as early as possible, any serious or late-onset complications along with initiating early interventions for such illnesses as cataracts, osteoporosis, and cardiac disease. Chemoprevention may be relevant for prevention of second cancers when available. Life style modification is important to prevent second cancers. The goal of health promotion counseling is to reduce risk for health problems that commonly present during adulthood, especially for childhood cancer survivors. The most important health promotion activities include avoiding weight gain and maintenance of a healthy body weight, increases in physical activity, avoiding harmful exposures and decreasing your risk of other chronic diseases such as diabetes and heart disease. The ultimate goal is to improve medical outcomes and help survivors get appropriate health care. The mission of the UCLA-LIVESTRONG™ Survivorship Center of Excellences is to facilitate improvements in the quality of life and quality of care of cancer survivors, in the Los Angeles region and beyond.
One of the keys to good care is being able to effectively navigate the medical follow-up care that is provided. Each survivor’s journey is different and these differences need to be respected. Each survivor’s medical needs are also different and these differences call for individual planning of care. What may work best for one person may be different for another. For example, patients who have a particularly complex cancer with a high likelihood of recurrence might be better served by follow-up from a particular specialist. However, someone with a more common cancer, or someone who has many other medical problems with difficulty getting to multiple specialists, may benefit from having a primary care physician coordinate their care and refer out only as needed for specialized care that the primary care physician cannot provide.
It used to be that patients were either seen by their many cancer doctors on a regular basis forever after diagnosis or the patients were lost to follow-up. The newer approach allows patients and their doctors to work together to develop an individualized approach to their cancer follow-up care. Which is the more appropriate care scenario?
On the one hand, cancer specialty care provides continuity with cancer treatment, expertise with cancer and experience caring for many patients with similar issues or problems. On the other hand, primary or geriatric care provides continuity with overall treatment, health care and expertise and experience with medical issues unrelated to cancer. Primary care doctors are skilled at managing patients who also have multiple medical issues. Scientific studies have shown that well trained primary care physicians and/or a nurse practitioner/physician assistant can provide equivalent care to cancer specialists for follow-up care of cancer survivors. This is especially true for the most common types of cancer.
Unfortunately, in the real world not all patients get the recommended care they need, even when seeing specialists, but they are more likely to get recommended care from cancer specialists than some primary care doctors. It is also true that in the real world many cancer survivors get essentially no cancer follow-up care. One study found that 30% of elderly breast cancer survivors were not getting routine mammograms, despite being insured.
There needs to be a balance within cancer follow-up care. To achieve the best care, having a team approach might be the best plan.
Surveillance is an important part of follow-up care to identify potential recurrence, second cancers and late effects both medical and psychosocial. Let’s consider three of the most commonly occurring cancers and the kinds of evaluations and tracking that should be done on a regular basis by a good primary care doctor:
Regular mammograms and breast exams to identify second primary breast cancers and recurrences.
For patients who were diagnosed before genetic tests were actively being used, a review of whether tests for breast and ovarian cancer (BRCA) genes should be done. Patients found to have a breast and ovarian cancer gene require specialized care for themselves and their families.
Monitoring and treating related side effects such as:
- Uterine cancer
- Cardiovascular disease
- Cognitive dysfunction
- Weight gain
Serial colonoscopy to identify second primary colon cancers and recurrences
CT scans for high risk patients to detect potentially curable recurrences earlier
For patients who were diagnosed before genetic tests were actively being used, a review of whether tests for colon cancer genes should be done. Patients found to have a colon cancer gene (for example, genes associated with Lynch Syndrome) require specialized care for themselves and their families.
Monitoring and treating related side effects such as:
PSA testing and potentially digital rectal exam to identify recurrences
Monitoring and treating related side effects such as:
- Erectile dysfunction
- Urinary incontinence
When considering surveillance one issue that comes up for debate among different groups of physicians is how much testing should be done to look for recurrence. Using breast cancer as an example, some argue that every possible test should be done at regular intervals. Some even suggest that this creates greater peace of mind for the patients; however, this is not always the case. For some patients the stresses of monitoring increase anxiety about fear of recurrence as well as creating greater exposure to the various aspects of medical testing and the medical environment. A 1999 study looked at two different monitoring modalities in 1,243 breast cancer patients who were randomized to two groups. One group received intensive testing(essentially everything anyone could think of) while the other group received routine clinical follow-up. The survival curves were identical; intensive testing did not lead to increased longevity Thus, more is not always better.
It is important not to be so focused on detecting a cancer recurrence that other preventive health care is skipped. Routine health care for non-cancer related conditions needs to be continued. It is also important that your health care team understand your values about end-of-life care (whether or not cancer is active) and that there is a shared understanding and values. Finally, good health care should be flexible and change if the situation changes.
The keys to making successful transitions in care and beyond include the following:
1. Identify a team of healthcare providers with roles that provide sufficient
- Coordination of care
2. Communication is essential both with the patient and with other specialists.
3. Develop and carry out a survivorship care plan. It is very important that all doctors involved in a patient care understand the patient’s cancer history, including the treatments that were used. Having a survivorship care plan can really facilitate this communication.
- Include all elements of recommended surveillance, if appropriate.
- All patients need to be educated and monitored for symptoms of recurrence, as well as late effects (both medical and psychological) of treatment so that symptoms can be treated appropriately.
4. Stay flexible to address needs as they change.
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.