By Peggy Eastman
In an unusual and powerful educational session held on the last day of the American Society of Clinical Oncology Annual Meeting, three oncologists shared what they have learned from their personal experiences with cancer, and how what they have learned has improved their practices.
“It's very difficult to speak about these issues in a public forum,” said session moderator Teresa A. Gilewski, MD, an oncologist in the Department of Medicine at Memorial Sloan Kettering Cancer Center, who has organized and led several innovative sessions at ASCO meetings over the years. She thanked the speakers for being willing to share their personal stories with the ASCO audience despite the strong emotions their stories clearly triggered in all those in the room.
The first to speak, Andrew S. Artz, MD, MS, Associate Professor of Medicine and Clinical Director of Hematopoietic Cellular Therapy at the University of Chicago Medical Center, related how his three-week-old daughter displayed a tumor in her left eye, and a suspicious area in her right eye, first detected by his wife. They obtained an immediate referral to a pediatric ophthalmologist from the baby's pediatrician.
The diagnosis after genetic testing was that the tumor was advanced retinoblastoma due to a mutation (based on her young age and two unaffected older siblings). The baby's rare cancer was a shock; he noted that there was no history of cancer in his family.
“It was a drastic transformation for me,” said Artz of the experience with his baby. “I never realized how anxiety-provoking the word ‘suspicious’ was until you're faced with ‘suspicious’ yourself.”
Artz and his wife were offered three treatment options, one of which was immediate enucleation of the left eye, and one of which was an investigational intra-arterial chemotherapy treatment approach, which was initially discouraged by the specialists they consulted.
“Remember, I'm already at a university; these are my colleagues,” he said. While being at a major medical center was an advantage, it also presented a delicate balancing act in terms of seeking additional opinions on his daughter's cancer. Ultimately, he and his wife chose the investigational retinoblastoma treatment following systemic chemotherapy. The baby had a recurrence one year later, which was treated with intravitreal chemotherapy; and she is now fine, yet will continue to have a lifelong increased risk of cancer.
Artz said he has learned a great deal from his personal experience about how oncologists can better help cancer patients cope: “To us it's a stage; but patients want to tell you about how it was diagnosed,” he said. In short, they want to tell their story to the oncologist. “That initial experience [with a patient] paints a canvas of who you are.”
Now, in his practice, he said, “I am more humble and more patient-centric; I am more willing to offer non-cancer related advice [on caregiving and caregivers, for example]. In addition, “I ask for feedback from patients, and I schedule more time for new patients.”
He offers this advice to oncologists: “Don't try to walk in a patient's shoes, just make the shoes fit better.” From his own experience, Artz has also developed specific suggestions for oncologists on interacting with cancer patients and their families (see box, next page).
In the summer of 2006, the late neurosurgeon Kelvin A. Von Roenn, MD—known for his dedication to training young residents in the art and science of neurosurgery—began to show serious and ominous physical symptoms. “I thought I knew a whole lot about grief until I experienced it myself,” said his wife, Jamie H. Von Roenn, MD, Professor of Medicine at Northwestern University's Feinberg School of Medicine and ASCO's Senior Director of Education, Science, and Professional Development.
Her husband had fatigue, nausea, a decrease in appetite, renal failure, and a bilateral ureteral obstruction; his diagnosis was undifferentiated small cell carcinoma of the renal pelvis. His blood urea nitrogen (BUN) level rose to 100, and he had dialysis and chemotherapy and underwent a nephrostomy. His wife knew too well that his prognosis was poor.
“He was kind of a stubborn ‘I can do anything’ kind of guy,” she said. She told his oncologist, “He wants it straight.” The treating oncologist told the Von Roenns that Kelvin (who had brain metastases) had perhaps six months to a year to live. As an oncologist, “I knew it couldn't be that long, but I wanted to believe it,” said Jamie Von Roenn; her husband died in October 2006 at the age of 56.
At the time of diagnosis, the Von Roenns had been married for nearly 28 years; their three children were 14, 16, and 22.
After his diagnosis, the Von Roenns, who were in the habit of going out on a date every Saturday night, sat on their bed and cried. “That night was the only time he cried,” Jamie Von Roenn remembered. “He wasn't up to going down and talking to the kids, so I did.”
Through her personal experience with her husband's incurable cancer, Jamie Von Roenn said she has learned many lessons or had ones she already knew reinforced. The first was that “even in an excellent hospital, it's stunning to me how terrible the care can be... if I wasn't there, he would not have been OK.”
The second was that most patients want the truth about their disease: “It undermines the hope people have when you don't tell them the truth,” she said, because it prevents them from making the most of the time they have left.
The Von Roenns chose hospice care at home, which she calls “good in the midst of bad.” Kelvin Von Roenn was cared for on the first floor of their home. “The most frightened I ever saw him was when he was tied in a wheelchair and we carried him downstairs,” she said.
During his last days, she and her husband went through what she calls the “five things” people need to say to each other when someone is dying: “I forgive you, forgive me, thank you, I love you, and goodbye.” One evening each of their children went in and talked to their father and went through the five things with him.
“We had our last days as a family,” said Jamie Von Roenn. Her husband's elderly mother managed to come to see him, since he could not go to her. Her husband and she planned his funeral; “It makes a huge difference to know what someone wants,” she said. “He was determined in his last weeks of life to help me with financial things,” an area he had handled. When their financial advisor cried, Jamie Von Roenn decided, “This is the person who cares,” the one she wanted to turn to for help with money issues.
Perhaps the biggest lesson she learned was how to deal with grief personally after her husband's death, which she said has given her an increased appreciation for helping families deal with grief: “The signs and symptoms of grief are emotional, physical, behavioral, and cognitive.”
The cognitive symptoms include preoccupation, confusion, and an inability to concentrate. She described the major tasks of grief as:
- Accepting the reality of the loss;
- Experiencing the pain;
- Adjusting to an environment in which the deceased is missing;
- Withdrawing emotional energy from the deceased and reinventing it; and
- Writing a new story for one's life.
“As grief decreases, acceptance increases,” she said. She defined acceptance as “a sense of inner peace and tranquility that comes with the letting go of a struggle to regain what has been taken away — The only way out of this is resilience; that's the way we restart our lives.”
When Alyssa G. Rieber, MD, was 21 and a first-year medical student at the University of Alabama School of Medicine, she was diagnosed with Stage II Hodgkin lymphoma. At the ASCO meeting, she told the audience that this personal experience has given her a valuable perspective on treating the patients she sees today as Assistant Professor in the Department of General Oncology, Division of Cancer Medicine, at the University of Texas MD Anderson Cancer Center.
While a medical student, Rieber underwent four months of chemotherapy and then radiation, managing to continue on with her classes.
Unmarried at the time of diagnosis, Rieber learned how it feels to be a patient. Her mother, who did not cook, “started cooking like crazy,” Rieber remembered, in order to fill her daughter with nutritious food. “She would cook and I would throw food away,” Rieber said. She lost her appetite and had a metallic taste in her mouth. “I lost my hair, and everybody was concerned.” She resorted to wigs, “which are always too hot and itchy, and you end up wearing a hat anyway,” she remembered.
Rieber, now married with two young daughters, said that today when she interacts with families as an oncologist she tries to bring “honesty, empathy, encouragement, and hope.” She noted that “being able to talk to the person [oncologist] as someone who's gone through this is very helpful,” and that “Sometimes hope is all we have to offer to get them through the day.”
She said her experience as a cancer patient has helped her better understand the following:
- The family response to a loved one's diagnosis of cancer brings shock, fear, and anxiety for everyone, and coping is different for everyone;
- Family members have a heightened sense of their own mortality;
- There may be a concern among some family members that cancer can be “caught,” especially among children (who need a careful explanation on their own level that cancer is not infectious);
- The time to treatment seems extremely long to families, who have a sense of urgency; this requires taking the time to give an explanation of the steps needed to determine the best treatment before therapy can begin;
- The family has concerns about the cancer patient's physical changes, such as weight loss, which can lead to battles over nutrition—wanting to feed the patient when he or she has no appetite and cannot eat. “I tell the patient, ‘Drink a shake,’ and I tell the family, ‘Back off,’” Rieber said;
- The end of treatment doesn't necessarily mean a return to normalcy: “Just because treatment is over, that doesn't mean patients are back to ‘normal.’ Many people don't just bounce back,” Rieber said;
- The end of treatment does not mean the end of worry, and of “the anxiety that never goes away.” The cancer survivor may feel that “every little lump is cancer until proven otherwise. The patients will have that forever.”