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From OncoLog, January 2012, Vol. 57, No. 1

Photo: Sean Swarner
Mountain climber and author Sean Swarner, shown speaking at the Anderson Network Cancer Survivorship Conference in September, was successfully treated for Hodgkin lymphoma at age 13 years and a second primary cancer, Askin sarcoma in the lung, at age 16. Despite having diminished lung capacity, he has climbed Mt. Everest and the highest peak on each of the other six continents.

Meeting Needs of Cancer Survivors

By Joe Munch

Thanks to new treatments and early detection, many types of cancer can be cured or managed, and more cancer patients are surviving than in the past. These long-term survivors have unique health care needs that are just beginning to be understood.

The term “cancer survivors” now includes cancer patients from the moment of their diagnosis to the end of life. As of 2007 (the last year for which data are available), there were 11.7 million cancer survivors in the United States. Nearly 65% of these survivors—regardless of whether they had been cured of their cancers—had lived with a cancer diagnosis for at least 5 years. These numbers are expected to go up as cancer detection methods and therapies improve. The boom in the cancer survivor population is giving rise to unanticipated new challenges.

“This is new territory,” said Lonzetta L. Newman, M.D., an associate professor in the Department of Clinical Cancer Prevention at The University of Texas MD Anderson Cancer Center. As cancer professionals explore this new territory, new concerns are coming to the forefront, but with those concerns come new opportunities to improve care.

Clinicians at MD Anderson have developed clinical practice algorithms for cancer survivors. “There are four domains of care in cancer survivorship—disease surveillance, risk reduction and screening for second cancers, late effects monitoring and management, and assessment for psychosocial functioning,” said Fran Zandstra, executive director of cancer survivorship at MD Anderson. “The algorithms of care for each of these are individualized to each patient’s disease and treatments.”

Expanding the focus

One potential hazard of providing care for cancer survivors who no longer receive active treatment for their cancer is the tendency to focus on the patient’s cancer instead of appraising his or her overall well-being.

“Historically, patients were more likely to die from their cancer than survive it, so why worry about anything other than treating the disease? Now that patients are surviving, we have to think about the other things that went by the wayside before,” said Therese Bevers, M.D., a professor in the Department of Clinical Cancer Prevention. “As we care for our cancer survivors, we need to expand from being very focused on the cancer—though not forgetting it—to encompassing more of the wellness mindset.”

Focusing on the patient’s cancer, Dr. Bevers said, can overshadow other aspects of the patient’s health. Using breast cancer follow-up care as an example, she said, “Sometimes we get so focused on the patient’s cancer—making sure we’re doing the breast examination, doing the mammogram, checking for any symptoms of recurrence—that we forget all the other things that we would be thinking about if she hadn’t had breast cancer.”

To address the unique needs of survivors of different cancers, MD Anderson has clinics dedicated to the well-being of survivors of breast, colorectal, genitourinary, gynecologic, thyroid, and head and neck cancers; survivors of lymphomas, melanomas, and childhood cancers; and stem cell transplant recipients.

In the survivorship clinics, in addition to following up on any cancer-related concerns, clinicians screen patients for second primary malignancies and recommend strategies to reduce the risk of second primaries, look for any late effects of the disease or its treatments, and address any psychosocial effects stemming from the cancer diagnosis and treatment.

“It’s important to be aware of these issues and do whatever we can to address them,” Dr. Bevers said. “It would be horrible if a patient survived her breast cancer and then died of a colon cancer because we never thought to say, ‘Oh, by the way, you’re 50; you need a colonoscopy.’”

Watching for second primary cancers

An important issue facing cancer survivors is the risk of a second primary cancer. When considered together, second primary cancers account for about 10% of all cancers that occur. They are also a major cause of morbidity and death in cancer survivors.

Although not all risk factors for second cancers are well defined, clinicians in the survivorship clinics are able to monitor survivors with known risk factors. Some environmental, genetic, or treatment-related factors associated with the initial cancer may also give rise to a second primary cancer.

Second primary cancers can arise from the same lifestyle or environmental factors—such as smoking or working with carcinogenic materials—that contributed to the initial cancer. Obesity, for example, is a risk factor for many cancers, including breast cancer in postmenopausal women and cancers of the colon, kidney, uterus, pancreas, gallbladder, and esophagus.

Second primary cancers can also arise from the genetic condition that gave rise to the initial cancer. One such example is hereditary breast and ovarian cancer syndrome, which occurs in patients with mutations to BRCA genes. In the survivorship clinic, breast cancer survivors with such genetic dispositions are regularly screened for ovarian cancer with transvaginal ultrasonography and blood tests of CA-125 levels. If a cancer survivor does not wish to have more children or is postmenopausal, she may receive counseling about having her ovaries and fallopian tubes removed to reduce the risk of ovarian cancer.

Finally, second primary cancers can be related to the treatments used to eradicate the initial cancer. For example, tamoxifen given to treat breast cancer increases the patient’s risk of uterine cancer, and radiation therapy increases the patient’s risk of developing cancer in organs in or adjacent to the irradiated area. Clinicians in the survivorship clinics closely monitor such patients in an effort to detect potential new cancers in their earliest stages.

Not all second primary cancers are related to the patient’s initial cancer, however. The risk of a patient developing a second cancer because of age or other factors remains.

“A breast cancer survivor might later get cervical cancer,” Dr. Bevers said. “Cervical cancer is unrelated to any of the carcinogenic pathways related to her first cancer—it’s caused by the human papillomavirus, which hasn’t been implicated in breast cancer—but nonetheless, she’s a woman, and she has a cervix, so she’s potentially at risk for cervical cancer.”

“As we care for our cancer survivors, we need to expand from being very focused on the cancer—though not forgetting it—to encompassing more of the wellness mindset.”
— Dr. Therese Bevers

Fortunately, as new data emerge, Dr. Bevers and her colleagues are learning how to detect and treat second primary cancers before they become life threatening.

“For example, young girls who receive radiation therapy to the thorax for Hodgkin lymphoma have a very high risk of developing a second primary breast cancer,” Dr. Bevers said. “It was only as treatments for Hodgkin lymphoma became more successful and more young girls were surviving that we started seeing this risk. As a result, we now recommend that these patients start to get screened for breast cancer 8–10 years after their last radiation treatment or at age 25, whichever comes last.”

Monitoring for late effects

The risks of a cancer recurrence or second primary cancer are not the only considerations in the care of cancer survivors. The late effects of the treatments the patient received—effects observed after active treatment has ceased—must also be considered. While physicians have been aware of the late effects of cancer treatments for some time, they are just beginning to collect data on how to better manage these effects.

For example, Dr. Bevers said, “Breast cancer patients who receive high-dose doxorubicin are at risk of cardiomyopathy. We already knew that. What we don’t know is whether routine screening for cardiomyopathy is warranted in these patients.”

Various treatments are associated with different late effects. Some of these effects may have a quick onset—such as premature ovarian failure resulting from chemotherapy for breast cancer—whereas others evolve slowly, such as chronic fibrosis resulting from radiation therapy.

However, Dr. Bevers said, it is important to determine whether such effects are indeed due to cancer therapy, as this can affect decisions about further testing and treatment.

Assessing psychosocial issues

As a result of more survivors living longer, the psychosocial effects of cancer—those related to work, finances, or family relationships and specifically the stress of living with a history of cancer and the fear of cancer recurrence—have come to the forefront in the care of cancer survivors.

“We always knew these issues existed,” Dr. Bevers said. “Now, we have a better understanding of how to identify which patients are affected so that we can offer services to them.”

During their first visit to a survivorship clinic, cancer survivors fill out questionnaires tailored to their disease type; the questions range from assessing the patients’ symptoms to determining whether patients are having difficulty financially, socially, or otherwise. Clinicians review the forms with the patients; the ways in which patients respond to these questions can alert clinicians to issues that might warrant exploration or prompt further discussion, additional tests, or referral to other services at MD Anderson.

“Many times, patients are less inclined to disclose certain concerns without some prompting,” Dr. Newman said. “By having the patient answer specific questions, we are able to review responses and decide whether further investigation is warranted or whether the assistance of other trained professionals is needed.”

While most patients are frank in their discussions of the symptoms they experience or the financial issues they are struggling with, many patients balk at talking about how their cancer diagnosis has affected their sexuality.

“Sexuality issues can increase stress within relationships,” Dr. Newman said. “But sexual health is a topic that patients are less forthcoming about unless you open the door.”

Opening that door, Dr. Newman said, involves broaching the subject gently and using the opportunity to educate patients. “We let patients know that we’re asking these questions not to invade their privacy but to gain some knowledge about the long-term side effects of their therapies and to better meet their needs,” Dr. Newman said.

Improving communication with community physicians

To help ensure that patients get the well-rounded care they need, MD Anderson developed, a secure Web site that includes patient health records and the Passport Plan for Health, an electronic tool provided to patients and their health care providers. This tool includes information about a patient’s cancer diagnosis and treatments received as well as forward-looking information such as potential late effects of those treatments and recommendations for cancer screenings and preventive health measures. The passport provides a framework for community physicians to use when treating cancer survivors.

“The passport helps us coordinate our care with that of the patient’s primary care physician. It facilitates communication with the patients and with their outside physicians,” Dr. Newman said. “We don’t want patients to receive fragmented care or become lost to follow-up.”

By documenting what care is being done at MD Anderson and what is being done by outside physicians, the passport facilitates partnership between MD Anderson specialists and community physicians to address the full spectrum of patient care.

“The more our screening improves, the more our treatments improve, and the more we are able to reduce the mortality,” Dr. Bevers said, “the more we are going to learn about the issues facing cancer survivors and how to address them.”

Thyroid Cancer Survivorship

Thyroid cancer presents a unique set of challenges to physicians providing care to survivors of the disease. Thyroid cancer survivors face different long-term effects than survivors of most other cancer types because of the unique treatment strategy required for thyroid cancer.

“In thyroid cancer, our main tools are thyroidectomy, radioactive iodine treatment to eliminate residual disease, and in the vast majority of thyroid cancer patients—excluding those who have rare forms of the disease—thyroid-stimulating hormone suppression to guard against recurrent disease,” said Mouhammed Habra, M.D., an assistant professor in the Department of Endocrine Neoplasia and Hormonal Disorders.

Each therapy has its own potential long-term complications. Surgery can cause mobility and comfort issues in the shoulder and neck. Radioactive iodine can damage the salivary glands, leading to calculi in the salivary ducts, swelling, and/or severe xerostomia; its use has also evoked concerns about radiation-induced second primary cancers. Thyroid hormone suppression may cause an irregular heartbeat or reduce bone density.

“In the thyroid cancer survivorship clinic,” Dr. Habra said, “our goals include monitoring for disease recurrence and second primary cancers using surveillance studies such as ultrasonography; helping patients achieve normal thyroid hormone levels to reduce bone and cardiac issues; and addressing other issues stemming from treatment, such as dry mouth and voice and swallowing difficulties.”

At MD Anderson, the point at which thyroid cancer patients are transitioned to the survivorship phase of their care is determined using evidence-based clinical practice algorithms developed by a multidisciplinary team of clinicians. The way that care is managed depends on patients’ initial disease stage and the effectiveness of their cancer treatment. For example, patients who were initially diagnosed with T1 N0 M0 thyroid cancer may be transferred to the survivorship clinic if they have had no evidence of disease for 1 year; patients who were initially diagnosed with T2–4 N0–1 M0 or T1 N1 M0 disease may be transferred if they have had no evidence of disease for 3 years or if they have stable disease or minimal evidence of disease at 5 years. Patients who were initially diagnosed with metastatic disease remain under care in the thyroid cancer clinic rather than the survivorship clinic.

“In other cancers, they often talk about 5-year survival,” Dr. Habra said. “But the vast majority of thyroid cancer patients will live 20 years or more after treatment, so our approach to survivorship is a little different.”

FOR MORE INFORMATION, contact Dr. Mouhammed Habra at 713-792-2841.

For more information, contact Dr. Therese Bevers at 713-745-8048, Dr. Lonzetta Newman at 713-745-8040, or Fram Zandstra at 713-745-8717. To learn more about the Passport Plan for Health, click here. The clinical practice algorithms mentioned in this article can be found here.

Other articles in OncoLog, January 2012 issue:


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