Life Goes On
January 09, 2017
When Trula Marcus was diagnosed with advanced breast cancer in June 2012, the malignancy was less than 1 millimeter away from her chest wall—which means that her illness could have killed her if it spread any further. “Once it gets into your bones, there isn’t much they can do for you,” recalls the 56-year-old Venice resident who does voiceovers for commercials and video games.
Cancer survivor Trula Marcus
Even though she dodged a bullet, her treatment was harrowing. She was on the operating table for more than 13 hours because her tumor was so large, and the follow-up chemotherapy was “agonizing” because she was allergic to toxic chemicals. “I had terrible reactions that no one is supposed to get,” she says.
What helped her cope with this grueling ordeal was the support she received from the staff at Providence Saint John’s Health Center, who did everything they could to accommodate her schedule and even made house calls if she couldn’t come in to the office. Trula also drew strength from an extensive network of “amazing” friends and family members.
One friend came in twice a week to organize her life. Another, a former oncology nurse, cleaned her medical equipment, while others showed up with dinners, drove her teenage son to school or ferried her to doctors’ appointments when her husband was out of town on work-related business. Even members of her son’s football team—and their parents—swooped in to help.
“Between my doctors and my network of family and friends, well, they saved my life,” says Trula, who’s now in remission and walks two miles every day with her friends along the beach.
IMPROVING SURVIVORS’ QUALITY OF LIFE
What Trula’s story underscores is the importance of a support network to help navigate the arduous rounds of cancer treatments and blunt their emotional impact. There are now more than 14 million Americans who are cancer survivors, up from less than 3 million when the federal government launched an ambitious campaign to better diagnose and treat cancer in 1971. And that number is expected to rise because of significant improvements in cancer treatment in recent years.
That includes the ambitious translational research happening at the John Wayne Cancer Institute, which was a trailblazer in the development of the immunotherapies that are transforming cancer medicine and allowing more patients with advanced cancers to live longer and return to their normal lives—even if they’re not technically “cured.”
But while much of the focus has been on treatments and on the new breakthrough therapies, health professionals are keenly interested in survivorship and are looking at ways to help people with cancer cope with their illness and resume life after treatment. Saint John’s has launched a survivorship program to help patients at each stage of their recovery, thanks to a generous donation by a former patient (see page 24). The gift covers a survivorship navigator who will work with each patient from diagnosis through treatment and, afterward, help and guide the patient and family, creating an individualized comprehensive survivorship care plan which becomes a patient’s “game plan.”
Cancer survivors go through several phases, experts say. The acute phase is the initial stage, when people need help getting through their surgery and treatments. The long-term phase is after treatment is completed, when a patient is re-entering the world again.
“There’s the psychological recovery,” says Marilou Terpenning, MD, adjunct professor of medical oncology and a medical oncologist at Saint John’s who championed the creation of the survivorship program. “Many patients hold their breath while going through treatment and then crash when it’s done—they get off the treadmill and just collapse.”
LIVING WITH CHRONIC CANCER
Experts have coined a new term, called the chronic survivorship stage, to describe people who are benefiting from the new treatments and may live with advanced cancer indefinitely.
“Our approach here is that they’re managing a chronic disease,” says Melanie Goldfarb, MD, director of the endocrine tumor program at the John Wayne Cancer Institute and medical director of the new survivorship program. “Our focus is on how patients can get on with their lives while figuring out the adjustments they need to make things easier and enjoyable. It will be different for everyone, and the program will offer individualized patient care. The real plus is that each patient will have a person they can call when they have questions or issues.”
When battling cancer, patients have to deal not only with the symptoms of their disease but the many symptoms related to chemotherapy and radiation therapy: discomfort, nausea, sleep disturbances and debilitating fatigue. There are emotional challenges as well, such as anxiety, depression, fear and uncertainty, changes in self-image and the inability to do the routine activities of life, which can contribute to a feeling of lethargy and hopelessness. Patients will be able to work with the oncologists, nurses and social workers in the oncology practice to learn how to manage their lives, given their dramatically changed circumstances.
As part of the process, the oncology care team will give patients an idea of how long they may be out of work, treatments that may be needed and what to expect from those treatments. They will discuss whether patients may need help around the house or need someone to go shopping or make meals. A proper diet and good nutrition is important for recovery.
“But people who are made ill from treatments may not feel like standing and cooking,” says Dr. Terpenning. “They may need to tap into programs like Meals on Wheels to get prepared meals or even healthy frozen dishes.”
A special component of the new survivorship program will be focused on young adult cancer survivors (people who are under 40 years old at the time of diagnosis). Adolescents and young adults make up just under 10% of new cancer patients at Saint John’s, which is higher than the national average of 6%. These young patients encounter unique situations, barriers and problems when they confront and cope with their cancer diagnosis. They have greater difficulties in conveying their needs, anxieties and stressors, which can lead to social isolation and difficulties with adhering to treatment, Dr. Goldfarb explains.
The program will help these patients to access online and in person support programs to prevent social isolation. It will offer resources for issues such as financial support, return to education, mental and sexual health maintenance, re entry to the work force and family planning. The young adults will eventually have a dedicated navigator to help guide them through the survivorship process.
COPING WITH SIDE EFFECTS
The oncology team will also speak with patients about managing side effects and pain and will provide referrals to community resources like the Cancer Support Community, which offers support groups for patients, families and caregivers, or the American Cancer Society, which offers ‘Look Good Feel Better’ classes. “Patients should try out different things and see what works best for them,” says Dr. Goldfarb.
In fact, a growing body of research shows that integrative approaches—yoga, meditation, exercise and even social support—can make cancer treatment more tolerable and help patients cope with the issues related to treatment and the ongoing concerns as a long-term survivor. Regular exercise, acupuncture and gentle yoga practice can ease the physical discomforts of cancer treatment by alleviating tension and anxiety and increasing blood flow, which combats fatigue and can expedite healing.
“The immunotherapies are resulting in durable and long-term survival in advanced cancers, like melanoma, that were once invariably fatal.” – Dr. Steven J. O’Day
Similarly, mindfulness meditation and behavioral therapy has been shown to have a positive emotional and psychological impact on cancer survivors. An intriguing 2014 Canadian study, published in the journal Cancer, took this one step further. They tested a group of 88 breast cancer survivors at an average age of 55 years old, all of whom were experiencing significant emotional distress.
One group attended eight 90-minute weekly sessions where they were given instruction in yoga and meditation and asked to practice 45 minutes of meditation and yoga at home each day. The other group participated in weekly group support classes where they were encouraged to share their emotions and seek support from the other women. The researchers, from Alberta Health Services’ Tom Baker Cancer Centre and the University of Calgary, found that both of these psychosocial interventions not only helped them feel better, but they also changed their biology, with the positive impact extending down to the cellular level.
Long after treatments end, though, psychological scars may remain. Even patients who have been cured are more apprehensive and worry about recurrence or a secondary cancer. That fear may never leave. Successful new treatments have made coping with survivorship an even more important part of cancer care, says Steven J. O’Day, MD, director of immuno-oncology and clinical research at the Institute.
“The immunotherapies are resulting in durable and long-term survival in advanced cancers, like melanoma, that were once invariably fatal,” he says. “But the good news is that people do resolve the traumatic experiences and live amazing and improved lives because of the wakeup call they experience about what is really important in life.”
A GIFT TO ESTABLISH CANCER SURVIVORSHIP SERVICES
Cancer survivors will soon have access to more coordinated resources for their cancer care or post-cancer needs. Providence Saint John’s Health Center has launched a new survivorship program, made possible by a major gift from cancer survivor Monica Salinas, PhD.
Dr. Salinas received her care from Marilou Terpenning, MD, an oncologist at Saint John’s and adjunct professor of medical oncology at the John Wayne Cancer Institute. The survivorship program will assist survivors with a broad range of common experiences related to cancer treatment, such as emotional and psychosocial issues, financial and career challenges, side effects from treatment and the impact of cancer on family members.
Few oncologists have the time and resources to help their patients with these issues, making survivorship programs a necessity, Dr. Terpenning says. Helping survivors reclaim their lives leads to better long-term outcomes and is just the right thing to do, she adds.
“Cancer survivorship starts with the diagnosis of cancer. This is usually a terrifying and overwhelming time,” says Dr. Terpenning, who helped found the survivorship program. “There’s an intense period of fact-finding to become knowledgeable enough to feel confident in care. Patients often have large amounts of information to absorb and integrate. This gracious gift will help us further strengthen the survivorship program, which will give patients the fortitude and the resources to cope with this life-changing diagnosis.”
Dr. Salinas has a deep understanding of the needs of cancer survivors. In addition to her own experience as a patient, she is a licensed marriage and family therapist and holds a PhD in clinical psychology. She's an expert on how culture affects behavior and access to care and says she appreciates the psychosocial challenges that cancer imposes on patients and their families.
“Until I became a cancer survivor I had no idea about the immense value that a survivorship program could provide, not only for myself as a survivor, but for my family as well,” she says. “It never occurred to me that it could have a devastating impact on anybody else. My oncologist, Dr. Marilou Terpenning, was the first person to make me aware that cancer is not merely the illness of one person. Cancer is a prolonged situation that creates an entanglement of issues for the entire family, not only psychologically, but often economically as well. I am honored to participate in a program that has so thoughtfully and specifically been designed to help patients navigate their difficult journey towards recovery.”
The survivorship program is the latest in a long list of services for patients and their families that extend beyond cancer treatment. Saint John’s offers a variety of supportive programs for cancer patients, including a dedicated surgical nurse navigator for breast cancer patients, prehabilitation, rehabilitation and lymphedema care in the performance therapy department, genetic counseling to help families understand their cancer risk and spiritual care. The survivorship navigator, a position that is made possible through Dr. Salinas’s gift, will help patients understand what programs are available for them and coordinate that care.
For more information on how to support the cancer survivorship program, please contact Jeanne Goldsmith at 310-582-7344.
ADVICE FOR COPING WITH CANCER
Oncologists hold their patients’ hands and see them through weeks or months of treatment. We asked some John Wayne Cancer Institute physicians for their best advice on coping with cancer.
- Anton J. Bilchik, MD, PhD: “Try and stick to your normal routine as best you can. Exercise regularly. Continue to work and take vacations. Stop cancer—don’t let cancer stop you.”
- Melanie Goldfarb, MD: “This is an individual journey, and there is no right or wrong way to go through it. Don’t ever be ashamed or feel you need to keep quiet. Empower yourself with knowledge, and don’t be afraid to ask for help or referrals to resources.”
- Santosh Kesari, MD, PhD: “Knowledge is power. My advice is to understand the side effects of treatments and be proactive in symptom management. Don’t be shy in talking about all your concerns at the doctors’ visits and asking how best to proactively recognize and manage symptoms with medications or preventative strategies. Early management of side effects will avoid severe complications and hospitalizations.”
- Jennifer Linehan, MD: “Fighting cancer, surviving cancer is more than just treating the disease. Every patient goes through a significant change in how he or she will view the world—forever. It is understanding your humanity and being forced to accept it. After surgery, I find myself telling my patients to try to have patience; they are only human, and the body is healing as fast as it can.”
- Steven J. O’Day, MD: “Seek out excellence. The field is moving so quickly in terms of knowledge, and you need a medical team that is interacting across disciplines and sharing their expertise. You can’t underestimate how important that is. Be sure as a patient that your input is being recognized and valued. This is a collaborative process, and we want to hear what motivates patients and what their goals are. This is a vital part of treatment and recovery.”
- Marilou Terpenning, MD: “Believing in yourself is extraordinarily important. Cancer patients can lose their self-confidence. But you have to believe that you can bring your life back to where it was and get on with your life. Life has dealt you a bad hand, but you can learn to play it really well.”
THE EVOLVING ROLE OF FAMILY CAREGIVERS
Alice Beirne and Rita Cornyn
Like many people, Alice Beirne was unprepared to become a cancer caregiver. But with hope and determination, Alice and a team of relatives stepped in to help a loved one navigate through a year of cancer treatment and recovery.
“It’s a journey, and every day you learn something new,” says Alice, a retired human resources director who lives in Los Angeles. “You feel you have to be really strong. But you have to be kind to yourself too.
A cancer diagnosis affects every member of the family, especially spouses and other family members who may be the primary caregivers. Family caregivers are crucial to the physical and emotional well-being of people with cancer. But the day-to-day responsibilities of caring for a sick person can be overwhelming.
Not only do caregivers coordinate the routine chores of life—meals, cleaning, driving or arranging transportation—they still need to meet the needs of other family members, which may include young children.
Caregivers can play a significant role in the patient’s outcome, and increasingly researchers want to better understand how the caregivers themselves function and cope. In recognition of this, the Institute of Medicine, which is part of the National Academy of Sciences, released a landmark report in September, “Families Caring for an Aging America,” which looks at the impact of caregiving on their health, economic security and overall well-being.
The report shines a light on the needs of family caregivers.
Alice’s sister, Rita Cornyn, 86, was diagnosed with ovarian cancer in April 2015. She underwent a long course of chemotherapy and experienced occasional setbacks that landed her in the hospital.
Alice and Rita’s three grown children quickly formed a team to see their beloved Rita through her cancer treatment. Each person gravitated toward tasks that played to their strengths, Alice says.
“We thought it was key to talk together as a family and make sure we didn’t forget something important,” she says. “We had to identify the best team of doctors along with organizing medical appointments, a medication schedule, chemo appointments, aftercare and supporting Rita in the hospital, twice, for infections. It was a team effort that really paid off.”
Alice spent several nights each week with Rita and often just sat with her sister and watched television. “Having someone there was important for her well-being,” Alice says. “The goal was to soothe her and to let her know she was in good hands and that we were in this together. She told me once that she felt safe when I was there.”
Rita’s caregiver team set up schedules so that everyone worked in sync. The family quickly learned that it was better if two people accompanied Rita to her medical appointments. “Different people would pick up information that others missed or ask questions that needed to be answered,” Alice says.
Each caregiver left notes for the others as they shuttled in and out of Rita’s Los Angeles house. Rita’s daughter and Alice set up a computer-based medication schedule to make sure the pills were dispensed properly and refills ordered.
Part of caregiving also means recognizing one’s limits. Alice recalls her brother remarking one day that she sounded exhausted and should take a break.
“You’re also dealing with the sadness and emotional part of your relationship with the person,” she says. But Alice learned she didn’t have to have all the answers. “I had to get out of my own way. I learned to ask Rita what she needed instead of me thinking I had to be smart and figure it out.”
Little wonder caregivers often suffer from burnout. “It’s like juggling several balls in the air,” says Marlon Saria, PhD, RN, an advanced practice nurse researcher at the John Wayne Cancer Institute. “They have to take care of the patient. They have to take care of their kids. They have their own jobs. Caregivers are trying to keep everything the way it was before the diagnosis. They take care of everyone and everything but often fail to take care of themselves.”
In response to research that has shown that relentless stress can undermine the health of caregivers, a new family caregiver initiative is being developed at Saint John’s. This initiative aims to facilitate support for caregivers as part of an overall comprehensive package for cancer patients and their families. These services can include psychological counseling, support groups, referrals to community resources and help with logistics, such as consolidating appointments so that caregivers aren’t constantly ferrying patients to the hospital or doctors’ offices. The initiative will be part of the Center for Quality and Outcomes Research at the John Wayne Cancer Institute, a program that aims to design and implement interventions that will improve the quality of care for caregivers, as well as enhance the quality of life and well-being for both the family caregivers and the patients they care for.
“We will work closely with the family from diagnosis through treatment and remission or even at the end of life,” says Dr. Saria. “It’s important to remember that caregivers are survivors too, because they’re surviving the challenges and responsibilities of this disease and its treatment.”
Alice’s husband, Carlos, and other relatives kept Alice on an even keel during her year as a caregiver. Doctors also advised the family, including Marilou Terpenning, MD, Rita’s oncologist at Saint John’s.
“When you’re a caregiver, you have a mission and you’re so focused on it,” Alice says. “But you also have to take care of yourself.”
Rita, who is now in remission and in good health again, made things easier on her caregiver team with her own spirit of determination, Alice says. “My sister is a very strong woman. She’s very accomplished in her life and has a very strong faith and strong resolve. When she hits problems, she’s a fighter. That is a wonderful person to be a caregiver for, because she was able to partner with me and her family.”