You Survived Cancer: Now What?
December 14, 2009
By Dagny Stuart (from the Fall 09 Momentum)
When Ron Obenauf turned 50, he decided to mark the milestone with a visit to his family physician for a physical and a colonoscopy. The CPA and real estate investor from Shelbyville, Tenn., received the physical, but when he asked about the colonoscopy, the doctor said he didn’t recommend them until age 55.
“I told the doctor that my older brother had a colonoscopy and they found three precancerous polyps,” Obenauf remembered. “My doctor turned around and said, ‘I’ll split the difference with you, and we’ll do it when you turn 52 and a half.’ I didn’t push it anymore and in hindsight I should have.”
A couple of months before he turned 52, Obenauf noticed blood in his stool and immediately scheduled a colonoscopy with a local surgeon. The day after the procedure, the surgeon called and told Obenauf that he needed to talk to him right away.
“I asked if it was cancer, and he hesitated, then told me ‘yes.’” By the time Obenauf heard the final diagnosis, his worst fear was confirmed. He had advanced colon cancer.
On that day in 2003, Ron Obenauf began his journey of survivorship, as one of the nearly 12 million cancer survivors in the United States. According to the American Cancer Society, the number of cancer survivors has tripled in the past 30 years and America’s aging population will lead to even more cases of cancer in the future. A National Cancer Institute (NCI) study indicates that the number of cancer survivors in the United States will increase by 55 percent between 2005 and 2020.
However, support for those survivors has been slower to develop. Patients who end their cancer treatment often don’t receive the information they will need for the rest of their lives. It’s like being pushed out of the supportive hospital nest without being taught how to fly.
Ron Obenauf’s journey, like that of other cancer survivors, has been full of physical and emotional shocks, setbacks and breakthroughs. No one said being a survivor would be easy.
“I was devastated and went through an emotional roller coaster ride for about 60 days,” Obenauf said. “I was analyzing my entire life, the good and the bad and looking for blame.”
It was just as difficult for his wife, Ardeth. “Ron has always been incredibly healthy, so to have something really major like this go wrong was like getting the rug pulled out from under us.”
Within days, the cancerous section of Obenauf’s colon had been surgically removed. Ardeth had been doing research, and the couple decided Ron should have the rest of his treatment at Vanderbilt-Ingram Cancer Center because of its NCI designation as a Comprehensive Cancer Center. His oncologist was Jordan Berlin, M.D., clinical director of Gastrointestinal Oncology at Vanderbilt-Ingram.
“Dr. Berlin told me my chance of long-term survival was 50-50, which wasn’t very good odds,” said Obenauf. “But he spent a lot of time with me explaining the pathology report and how many lymph nodes were involved and mapping out a treatment plan.”
That treatment plan involved months of intensive chemotherapy. For more than a year, Ron appeared to be cancer free. But in January 2005, a lesion appeared in his liver, and he underwent more surgery to remove part of that organ.
That was the last time cancer appeared. Today, Ron gets regular checkups, which show no trace of a cancer recurrence, and he and Ardeth have added healthy food and exercise to their daily regimen.
“It’s hard to describe, after what I’ve been through, how it feels to know that I’m here every day and I feel absolutely spectacular,” said Obenauf. “There are a few lingering things that I’m probably going to deal with the rest of my life, like fatigue, but my life is good.”
Still, when it’s time for those regular checkups, Ardeth has episodes of anxiety – one of the hallmarks of life after cancer for survivors and their families.
“Being a cancer survivor is challenging,” said Julie Means-Powell, M.D., an assistant professor of Medicine and breast cancer specialist at Vanderbilt-Ingram. “Even if their tumor was tiny, my patients tell me they are always waiting for the other shoe to drop. At any time in their life, while life is going really well, they are waiting for that cancer recurrence. So patients need to find ways to manage that stress and those of us in the medical community are finding better ways to support them.”
Finding their way
The need for new and enhanced survivorship programs is clear. Amazing advances in childhood cancer treatments have created a new generation of adults who are cancer survivors. The NCI estimates that 14 percent of survivors were diagnosed 20 or more years ago.
Some treatment regimens are keeping patients alive years longer than before, creating a patient population for whom cancer is managed like a chronic disease.
Whether they have been cured of their cancer or they are keeping the disease in check, patients have a range of physical, social and emotional challenges that need to be addressed by the medical community.
To help cancer patients and their families navigate life as a survivor, Vanderbilt-Ingram Cancer Center, the Department of Pediatrics and the Monroe Carell Jr. Children’s Hospital at Vanderbilt have launched the REACH for Survivorship Program, a community resource to meet the unique needs of children and adults who have received a cancer diagnosis. Debra L. Friedman, M.D., is the director of the REACH for Survivorship Program.
“The goal of the survivorship clinic is to provide dedicated care focused on the survivor and not simply their cancer diagnosis,” said Friedman, E. Bronson Ingram Chair in Pediatric Oncology. “We look at their medical needs with respect to both cancer and the effect of cancer treatment on other organ systems, as well as their psychosocial, functional and social needs.”
The Survivorship Program – open to any patient regardless of where initial cancer treatment was received – is the only clinical program in the country that treats both adult and pediatric cancer survivors. The clinic is located outside of the Cancer Center, so survivors aren’t thrust back into a hospital setting.
“We wanted the focus to be on wellness, not illness,” Friedman explained.
The REACH for Survivorship Program recently added a
second clinic at Nashville General Hospital at Meharry to serve even more patients.
Before patients ever walk in the door to one of the survivorship clinics, a multi-disciplinary team of health professionals reviews the patient’s cancer and its treatment, health problems that may be related to the cancer, and issues of concern to the patient. This is accomplished through patient surveys and a careful review of medical records. A visit is then arranged. During the visit, patients meet with a social worker followed by a physician or nurse practitioner who takes a detailed history of their cancer diagnosis and treatment and performs a thorough physical examination. Patients may be referred to other subspecialists, based on their treatment history, and they will be counseled about their medical risk factors and what they can do to keep themselves healthy.
Friedman says this kind of program is crucial because all too often a cancer patient leaves treatment without a roadmap for the rest of their life as a cancer survivor.
“Cancer survivors are at uniquely high risk for medical problems related to their initial cancer or the cancer treatment,” said Friedman. “They need to be educated about those risks and what they and their doctors should look for and what special screening tests they may need throughout their lives. We put this all together in a coordinated package for them so they really understand what it means to adjust to a new normal.”
That detailed individualized survivorship care plan, including a risk analysis, is sent to the patient’s oncologist, primary care physician, specialists or any other care provider identified by the patient. The patient also leaves the survivorship session with a notebook filled with educational information, and a list of additional support resources.
Making the transition from cancer patient to long-term survivor can be stressful for patients and their families, especially when the patient is a child.
“From the time a child is diagnosed, the end of treatment is dangling in front of them like a brass ring,” said Frances Niarhos, Ph.D., clinical psychologist in the Department of Pediatrics at the Monroe Carell Jr. Children’s Hospital at Vanderbilt. “They don’t realize that this transition time is going to be difficult, too.”
Many children are at risk for neurocognitive late effects that are a direct result of the treatment they receive to fight the cancer. Cranial radiation for brain tumors may affect the way the brain grows and develops following treatment. Treatment for acute lymphoblastic leukemia (ALL) can also impact a child’s development.
“Those children receive intrathecal chemotherapy, which is injected directly into the spinal column to target leukemia cells that remain hidden in the brain and cerebral spinal fluid,” said Niarhos. “These intensive treatments may impact a child’s neurocognitive development. It’s not that they’re not gaining skills following treatment, but they may not be gaining skills at the same rate as their healthy peers.”
Niarhos and the other two psychologists on the survivorship staff recommend baseline neurocognitive testing for every child who has received treatment that places them at risk for late effects.
“The younger a child is when treated, the more likely that child is to demonstrate a late effects profile,” said Niarhos. “For reasons we don’t fully understand, girls seem more likely to develop neurocognitive late effects.”
The psychologists work with teachers and school systems to help students succeed after cancer treatment.
“These are often bright kids but they may have very slow information processing speed,” Niarhos explained. “It’s not that they can’t do the work their peers can do, but they need extra time in order to achieve at the same level. Once this is explained to the students, the parents and the schools, and they are given more time for things like standardized tests and other assignments, these students are able to flourish.”
Hearts and Minds
Adult cancer survivors experience their own neurocognitive challenges. “Chemo brain” is the term survivors often use to describe the slow, fuzzy attempts to access memory and to process new information after treatment. This sluggish brain function can be frustrating and emotionally stressful to patients, especially adults who are trying to work during and after treatment. The REACH clinic is helping patients with these issues by providing referrals for support services.
Other long-term side effects of treatment are physical and they represent the double-edged sword that is cancer treatment. The very treatments that are supposed to save patients from cancer can put them at risk for other life-threatening diseases.
Some forms of chemotherapy, including anthracyclines, fall into that category.
“We treat some forms of breast cancer with anthracyclines, which puts those patients at risk for heart failure,” said Julie Means-Powell. “The average cardiac risk for a woman at the dose we typically give is 2 to 4 percent. But women over age 65 or those who have longstanding hypertension are at increased risk. So there is definitely a chance that you could be cured of a cancer but then die from complications of heart failure.”
Vanderbilt-Ingram oncologists are collaborating with physicians at the Vanderbilt Heart and Vascular Institute to monitor those patients. This cardio-oncology program is tightly coordinated with the REACH for Survivorship Program, and Friedman works closely with the cardiologists to develop pathways and studies for follow-up.
“They have helped me follow these patients with an integrated program, which I think is pretty unique,” said Means-Powell. “They also are enrolling breast cancer patients in clinical trials to look for early signs of decreasing heart function during chemotherapy.”
Other types of anthracycline chemotherapy drugs, like doxorubicin (Adriamycin), also increase the risk for acute leukemia in about one-half of 1 percent of cancer patients, so physicians must weigh the benefits of the drug against the serious risk of another illness.
Radiation therapy presents another challenge – the risk of a secondary cancer that develops years later in a small number of patients.
That’s what Sarah Conley’s physicians worried about when she was diagnosed with non-Hodgkin lymphoma at age 23. The young woman from Mansfield, Texas, had a family history of cancer – both of her parents are Hodgkin’s lymphoma survivors.
“My doctors wanted to avoid radiation therapy because it increases the chance of breast cancer in young adults,” said Conley. “So we did six rounds of chemotherapy and decided we would do more chemotherapy, if necessary.”
Conley feels comfortable with the treatment plan.
“This is the primary cancer in young adults, and it’s one of the more curable cancers,” Conley explained. “After the first or second treatment, we did an X-ray and the tumor was already shrinking, so that was encouraging.”
A year after treatment, Conley’s cancer has not reappeared, and she is pursuing her dream career. She recently opened a voice studio in Dallas, Texas, teaching private voice lessons. She also founded a nonprofit organization, “How You Live,” to educate young adults about the importance of having a primary care physician and obtaining health insurance.
“I hear about young people in their early 20s who were diagnosed with cancer or another serious illness while they were uninsured or had a lapse in their insurance,” Conley said. “It creates a nightmare, causing a young person to be diagnosed late, which significantly decreases their chance of survival.”
Conley believes it is a gift to have this opportunity to help other young adults and calls being a cancer survivor “an honor.”
“I believe that survivorship begins the day you are diagnosed, and every day that you live with your disease, you are surviving,” Conley said. “I feel privileged to be a part of that group of people that has an appreciation for life that others may not have, or perhaps we simply have a different perspective.”
When she returns to Vanderbilt-Ingram for her next checkup, Conley plans to take advantage of the REACH for Survivorship program.
“My oncologist has kind of become my primary care physician, but I want my next physician to know about the long-term side effects I may face. Ten years from now, if I developed a problem, I would have something substantial to show to my doctors, and I would know more about what to expect.”
Back in Tennessee, Ron and Ardeth Obenauf have charted a clear path to survivorship. During Ron’s treatment, they garnered much of their support from members of their small, close-knit church.
“My faith played a huge role in my survivorship,” explained Ron. “I go to God in prayer and thanksgiving that I have been able to survive this disease.”
While they did not join a formal support group during Ron’s treatment, they helped set up a Web site called CanConnect (www.canconnect.org), an online support resource for Middle Tennessee cancer patients. They also decided to become research advocates as part of the Patient Advocacy Program at Vanderbilt-Ingram. Both work with colon cancer researchers, representing the patient perspective as investigators design and implement clinical trials.
“The doors have really been opened to us at Vanderbilt,” explained Ron. “We are in meetings that are incredible, with the top scientists in the country – people like Dr. Hal Moses, Dr. Lynn Matrisian and Dr. Robert Coffey. These are huge names in cancer research and we are welcomed into the meetings.”
Ron also serves as a patient research advocate for the Vanderbilt Tumor Microenvironment Network and the couple participates in the Tennessee Colorectal Polyp Study, investigating nutrition, the benefits of exercise, tobacco cessation and other healthy lifestyle initiatives.
“We were given the opportunity to help, and most people who aren’t scientists are never given this option,” said Ardeth. “It is a golden opportunity, and we have done what we could.”
Ron and Ardeth decided to support the Vanderbilt-Ingram cancer research programs with annual financial gifts, and they also donate funds to the Monroe Carell Jr. Children’s Hospital at Vanderbilt.
“We have been really blessed, and we live a wonderful life,” explained Ardeth. “We realized it was a good thing for us to help other causes, places we thought could use a boost here and there. We fund research through Dr. Berlin, and at the end of the year, we get a report on the project and how the money was used. It has been gratifying for us to know what has been done with our money and what the results are.”
The Obenaufs, along with other cancer patients and their families, have discovered that survivorship is a complicated and often rewarding journey. Ardeth describes it succinctly.
“Vanderbilt is helping us and others like us get our lives back on track.”
For more information about the REACH for Survivorship Program, see: www.vicc.org/cancersurvivor