Sanjoy Sen was just a couple of months shy of graduating from the University of Illinois at Urbana-Champaign when he began feeling weak and tired for no apparent reason. Minor physical activity left him exhausted. His health seemed to be deteriorating rapidly.
He went to see his doctor, thinking maybe he had asthma. On April 4, Sen was diagnosed with leukemia, a form of cancer that impedes the production of healthy blood cells.
Sen, 22, an environmental and political science major from Skokie, had to put his life and career on hold. He needed to make some quick decisions.
People diagnosed with cancer often find themselves frightened, confused and faced with a number of choices in how to be treated. It was no different for Sen, who needed to start treatment immediately.
He was offered an opportunity to take part in an experiment of sorts.
Sen agreed to join a clinical trial through Highland Park Hospital. This would allow him to receive the most aggressive medication and latest cancer treatment possible, while contributing to a scientific study.
He has since completed his chemotherapy and more recently a bone marrow transplant. He feels good and is hopeful that the treatment has stopped the cancer from developing further.
“I’m extremely thankful that I’m in this clinical trial,” Sen said. “They told me that an aggressive treatment could help nip this in the bud. That’s why I agreed to take part in the study.”
Highland Park Hospital is one of only a handful of Chicago area community hospitals that offer on-site clinical trial programs for cancer patients, giving them access to a number of possible treatments they otherwise might not have.
Clinical trials are research studies conducted with patients to evaluate new treatments. Although there is a chance that the results may be disappointing, the researchers have reason to believe it will be as good as or better than current treatments.
Clinical trials are not new, but for them to be offered at a community hospital such as Highland Park is unusual. Highland Park links each cancer case with trials available through the National Comprehensive Cancer Network, which includes some of the most prestigious cancer centers and teaching hospitals in the country. Among them are Memorial Sloan-Kettering Cancer Center in New York, the Mayo Clinic in Rochester, Minn., Johns Hopkins in Baltimore, the University of Southern California in Los Angeles and Northwestern Memorial Hospital in Chicago.
Highland Park Hospital also is part of the Northwestern Care Network, which includes Chicago area hospitals affiliated with Northwestern University Medical School.
Because the clinical trials offered at Highland Park involve research, the cases are part of a national program carefully monitored by the Eastern Cooperative Oncology Group (ECOG), the National Surgical Adjuvent Breast and Bowel Project (NSABP) as well as some pharmaceutical companies. Highland Park has had about 150 patients participate in clinical trials in the five years it has offered them. Because of the variety of treatment methods, it’s not possible to report meaningful data involving survival rates.
“We are a community hospital, and traditionally, community hospitals don’t run clinical trials,” said Gay Golden, clinical trials coordinator at Highland Park. “It’s an opportunity for patients to get state-of-the-art treatment in their own community without having to go to Chicago or elsewhere to larger institutions.”
Other Lake County hospitals offer clinical trial programs, although none as extensive as Highland Park’s. Lake Forest Hospital has a clinical trial program, which is linked to the Rush Cancer Institutes and monitored by ECOG. Midwestern Regional Medical Center in Zion offers patients the option of joining trials through pharmaceutical companies and through its link to the Cancer Treatment Centers of America, an Arlington Heights-based network of three area hospitals.
Dr. Nicholas Vogelzang, professor of medicine at the University of Chicago Medical School and past president of the American Cancer Society of Illinois, said the availability of clinical trials through hospital networks is growing. That means patients in smaller communities can benefit.
“I’m a big supporter of putting clinical trials into the communities,” said Vogelzang, who also is principal investigator for the Cancer and Leukemia Group B, a national cooperative cancer study group. “The war on cancer cannot be won unless we can do the research.”
Vogelzang said that many smaller hospitals do not participate because of the extensive work involved in monitoring clinical trial patients and collecting precise data for the studies. Follow-up work on every patient also is required.
Clinical trials traditionally have been limited to academic medical centers and larger hospitals. Vogelzang believes that many doctors cannot make the commitment to put their patients in clinical trials because of the work and because of the experimental nature of the treatment. “As soon as you introduce the concept of research into the picture, many patients may be afraid,” he said.
Golden said part of her job is to keep up to date on the latest research and national trends in cancer treatment and let patients know their options so they are not afraid. She said that taking part in a clinical trial is voluntary, and patients have the option of withdrawing at any time.
Golden said patients need not be frightened by the term clinical trial. “Our patients are not guinea pigs,” she said. “We are using mostly FDA-approved drugs and standard treatments. The differences are in the timing, frequency and duration of the treatments.”
Some patients are given drugs that are being tested by pharmaceutical companies, but they are taking them at a stage in which the drug’s safety already has been established by other hospitals and clinics, Golden said.
The hospital is not paid to enroll patients in clinical trials, and most of the treatments and drugs are covered by insurance companies, Golden added.
Patients who are diagnosed with cancer are told they have choices. “Typically, we will present all options to the patients, and one of the options we offer is participation in a clinical trial,” Golden said.
One patient, who was recently diagnosed with breast cancer, said the course of treatment was left entirely up to her. “There’s no pressure,” said the woman, who didn’t want to be identified. “You ask questions, and it’s all up to you. I did a lot of homework before making a decision.”
Dr. Israel Wiznitzer, medical oncologist at Highland Park Hospital and principal investigator for ECOG, said that because the hospital is accredited to take part in clinical trials, patients can be confident knowing they have access to the latest research specific to their diagnosis.
“We incorporate it into our practice to make sure our patients know what the state-of-the-art treatments are,” Wiznitzer said.
He said that patients are monitored not only by specialists at Highland Park but by colleagues at the major oncology centers around the country.
“If you practice medical oncology, you have to recognize that there is a lot of research that has to be done,” Wiznitzer said. “The way to learn about progress in cancer treatment is through clinical research.”
Wiznitzer said that fewer than 2 percent of all cancer patients are eligible to take part in clinical trials. They cannot, for example, have any pre-existing malignancies or have had cancer treatment before.
Although cancer treatment is a serious business, Wiznitzer is known for his candor with patients and for his sense of humor. He offers hope when he can but promises no miracles.
“You have to maintain your integrity and honesty and tell it the way it is,” he said. “A lot of people don’t want to hear the truth. I think you have to take this very seriously and be frank with people. You have to be realistic. Not all outcomes are going to be good.”
But he also said it is important for doctors and patients to be light-hearted and upbeat when they can. “There has got to be humor in life,” he said. “Cancer is not necessarily a death sentence.”
Sen said that Wiznitzer’s positive attitude made his experience much easier. “He’s really lively and funny, and that really helps,” Sen said. “The hospital also has been with me every step of the way.”
Sen remembers his initial contact with Wiznitzer. “When Dr. Wiznitzer talked to me, he said, `Don’t worry, we’re going to do something really wild,’ ” Sen said. “He said there was a study I could take part in. At first, the study was closed, but he pushed and got me in. He’s really been great.”
One patient who took part in a clinical trial three years ago remains cancer free.
Leah Bransky, 57, of Highland Park, was diagnosed with breast cancer. She took part in a clinical trial that involved a lumpectomy, chemotherapy and radiation.
“My mother died of breast cancer,” Bransky said. “And it was always in my mind that with treatment, your best shot is your first shot. I wanted to go for an aggressive treatment.”
Bransky is glad she decided to take part in a cancer study. “I feel just fine,” she said. “Taking part in this clinical trial matched my personal philosophy, which is to be aggressive the first time around.”
RISKS VS. BENEFITS
Patients who take part in clinical trials may face risks they would not encounter with standard treatments. According to the National Cancer Institute, treatments used in clinical trials can cause serious side effects and other health risks depending on the type of treatment and the patient’s condition.
Gay Golden, clinical trials coordinator at Highland Park Hospital, said that for the most part, clinical trials involve the use of radiation and drugs that already have been approved by the FDA. The difference is often in the dosage, and with higher doses come higher risks and possibly more severe side effects.
“But we believe that the potential benefits outweigh the risks,” Golden said.
Patients considering taking part in a clinical trial should consider the possible side effects, some of which can be permanent and even life threatening. Golden said that all of these risks are discussed before patients decide whether to consent to the treatment.
One of the downsides of taking part in a clinical trial is that the patient no longer has a say in how he will be treated unless he drops out of the study, Golden said. “But patients should remember they are not being undertreated,” Golden said. “We are looking at new ways of treating them. If we knew which way was better, then we’d already be doing it.”
