Dr. Randy Hurley is a hematologist/oncologist at Regions Hospital and Medical Director of HealthPartners’ Cancer Care Program. He has been involved with Rein in Sarcoma since its onset. He was Karen Wyckoff’s medical oncologist and attended the very first RIS event with her. He has since attended nearly every Party in the Park and maintains a close relationship with Pete and Sue Wyckoff.
Dr. Hurley graduated from the University of Wisconsin – Madison with an undergraduate degree in Pharmacy. Before and during medical school, he worked as a clinical pharmacist on the hematology-oncology ward at the University of Wisconsin. He completed his internal medicine residency and chief resident year at UW as well. During this time, he was involved in basic science research on extracellular matrix proteins.
In 1991, Dr. Hurley came to the Twin Cities, where he completed a hematology-oncology fellowship at the University of Minnesota and spent an additional year investigating hematopoietic stem cell adhesion to extracellular matrix proteins. He has been at Regions Hospital for over 20 years, the past nine of which have been spent as the Medical Director of HealthPartners’ Cancer Care Program. Dr. Hurley also holds a special interest in global health. He is board-certified in tropical medicine and has had an ongoing health care project in Tanzania for 15 years.
Early influences in his career drew Dr. Hurley towards a career in hematology-oncology. Working with cancer patients, he says, is both an art and a science. His career provides both inspiration and challenge on a daily basis. According to Dr. Hurley, because sarcomas are so rare, many primary care physicians may not be familiar with how they present. This poses a unique health care challenge.
Dr. Hurley is leading a RIS pilot project at Regions Hospital and HealthPartners to increase awareness of sarcoma cancers among medical providers with the goal of significantly reducing the amount of time between the onset of sarcoma symptoms and a proper diagnosis. As a part of this effort, he is heading up a RIS Task Force with Robert Gao, 2016-17 Sarcoma Scholar; Brittany E. Mathews, Senior EPIC Specialist for HealthPartners Oncology Service Line; Tim Michalski, CEO of Point of Care Decision Support, Jay Syverson, President of Point of Care, Decision Support; Christian Ogilvie, MD, RIS Board of Directors; Pete and Sue Wyckoff. The Task Force is seeking to develop an electronic medical record alert to help Primary Care Physicians to recognize and appropriately evaluate suspicious soft tissue masses at an early stage. This pilot project is a key part of the efforts of the RIS Hallie Anne Brown Educational Initiative.
I once heard University of Minnesota Associate Professor and medical oncologist Brenda Weigel referred to as “the hope doctor.” It is easy to see why this could be so. Dr. Weigel radiates a sincere and vital hope, fueled by her research seeking better cancer treatments but grounded in her experience treating cancer patients. “Far too often,” she has faced situations where there was “nothing else to do” for patients. But she also has seen recoveries in recent years that would have been unimaginable before.
Even more exciting developments are on the horizon. Dr. Weigel would like to recognize the Wyckoff family and all those who have helped Rein in Sarcoma, for the huge impact the group has had in moving the University to develop what is now becoming one of the premiere sarcoma programs in the country.
The Accidental Oncologist
It may surprise you to discover that Dr. Weigel “was not one of those people who knew from the beginning” that she wanted to be a doctor. She was “always interested in lots of things,” and chose to major in science in college. While obtaining her Masters degree in nutritional biochemistry, she worked at the Hospital for Sick Children in Toronto, Canada. In the late 1980s, as she pursued her graduate studies, a colleague suggested that she might try medical school instead. Her response? “Are you kidding me? I’d never get in!” But she did apply, and she did get in. Then she turned the offer down, because she wasn’t sure she really wanted to go. Dr. Weigel got married, and some time passed, and she began to think: “I may have made a big mistake.”
So Dr. Weigel applied again to medical school, and again she was accepted. She said to her husband, “I probably should do this!” Fortunately, then as now, her husband was wonderfully supportive. And so she went.
Dr. Weigel had loved working with children in the Toronto hospital, but she spent most of her time in medical school trying to convince herself that she would do something else. She was interested in “very intense fields” of medicine and had a strong interest in continuing to do cutting-edge scientific research. After she completed her internship, she realized that she had the most fun during her rotation through pediatrics. So she conducted her residency in pediatrics at the University of Western Ontario. She intended to go into critical care, practicing intensive care medicine.
Then, after a few months in an oncology rotation, “this light bulb turned on.” Dr. Weigel realized that pediatric oncology would allow her to marry her “love of research” with intense medicine, and also would allow her to develop “such incredible relationships with families,” which was something that critical care medicine did not offer.
In this way, an oncologist was born.
Onward, to Minnesota and Sarcoma
Very few options for oncology training were available in Canada, and someone suggested to Dr. Weigel that the University of Minnesota offered what she was seeking. So she and her husband traveled here early one November, when snow already was falling. Contrary to popular belief, Toronto is not quite so freezing as our great state. “The lake effect!”
After her interview here, Dr. Weigel was offered an oncology fellowship with full research funding for three to four years. This research guarantee sealed the deal, and she came in the mid-1990s. Her experience was “really really fantastic.”
Dr. Weigel landed in the lab of Dr. Bruce Blazar, a bone marrow transplant doctor who both worked to control immune system response after transplant and also to develop new ways to use the immune system to treat cancer. Dr. Weigel was drawn to solid tumors and particularly to sarcoma. At that time, the scientific literature was just “this black hole” with respect to sarcomas. Work simply was not being done, in this area “so desperately in need of research.”
So Dr. Weigel expressed her interest, and Dr. Blazar supported her completely. But she needed to blaze her own trail. She could use the lab resources, but she needed to “literally start from scratch” and figure out how to get it done. One has the sense that this challenge itself was a major draw. After weeks combing the literature, Dr. Weigel found a whole series of papers from the East Coast indicating that a cell line had been developed that could be used for research into rhabdomyosarcoma. She contacted Dr. Robert Evans, the retired man behind this work, and obtained his permission to carry on. He was “just incredibly gracious” and sent her the cells, happy to know that someone would use his work. And use his work, she and her University colleagues did.
When asked about what she is doing now, Dr. Weigel said that all her years in basic science research were “a gateway to bring new therapies to children and adults with cancer.” Now, most of her time is spent in early phase clinical trials and translational research, seeking to move new drug therapies out to people.
In talking about the course of her life, Dr. Weigel said she thought it important to “make the most out of whatever opportunity is put in front of you,” and to understand that “you never know what that opportunity will be.” The understanding she has gained through her work with patients and families has been important in shaping her scientific research. We are thankful that Dr. Weigel has poured so much of herself into both research and treatment, fulfilling a dual role she finds it “so crystal clear” must be played.
Hope on the Horizon
After so many years in the dark ages, it is astonishing to learn that sarcomas finally may be emerging into lighter times. Ten years ago, Dr. Weigel wrote a clinical trial design for young people with rhabdomyosarcoma. There were no new drugs available then; just a plan to deliver old drugs in new ways. In the first 18 months after the treatments were delivered, these changes allowed people to live longer overall and extended the length of time that they lived without return of their cancer. Even if the improvements fade away with more time, this is a great accomplishment. And there are promising signs that the benefits will stick.
Today, scientists have the technologies that will allow them to really study tumors in ways they never have been able to study them before. For example, Dr. Weigel and Bridget Charbonneau, a post-doctoral fellow with her colleague Julie Ross, have combed the tumor bank at the University of Minnesota to identify about 180 patients with synovial sarcoma. About 50 of these patients had good tumor tissue available for testing, and the team is looking for genetic markers that might tell them which tumors are more likely to be dangerous. If they can tell which cancers are more deadly, they can give the stronger treatments to those people facing the most danger. And if they can find the bad actors within the cells, they also might be able to develop drugs specially designed to target the cancer.
As science advances, more targeted drugs are becoming available that may hit the sarcoma tumors in ways that could really knock them out. With great folks like Dr. Weigel using this science, we have reason to hope.
When asked for her final thoughts, Dr. Weigel wished to highlight the impact that Rein in Sarcoma have had on the specific research in the field of sarcoma at the University. This, she said, “can’t go unrecognized.” She considers RIS to have been “a huge impetus behind what is now becoming one of the premiere sarcoma programs in the country.” This has been “spearheaded by the Wyckoffs,” and is an “incredible testament” to them and to the whole group of volunteers who have offered their talents and dedication.
Dr. L. Chinsoo Cho is an Associate Professor and radiation oncologist at the University of Minnesota.
Dr. Cho has lived many places, but he does not feel adrift. He has lived in each place for quite some time, and always for a good reason. After growing up in the Washington DC area, he attended medical school at George Washington University and completed his residency there. He left for Duke University in North Carolina to begin his training in radiation oncology, but returned to George Washington University to complete it.
From there, Dr. Cho moved to Dallas to join the University of Texas Southwestern Medical Center and work with pre-eminent physician Dr. Eli Glatstein. Training under Dr. Gladstein was like “being a clerk for a Supreme Court Justice.” Dr. Glatstein was a good mentor and a fantastic leader. Dr. Cho gained experience with lung, prostate and breast cancer, in addition to sarcoma.
In 2005 Dr. Cho moved to Minnesota. He visited in September after enduring day after day of 100 degree Texas heat. Minnesota was beautiful and Dr. Cho thought he could live here in beauty all the time. As it happens, winter is cold and long and summer has too many mosquitos, but his family loves it here. And here he has stayed. Today, Dr. Cho’s practice includes the treatment of lung, prostate and sarcoma cancers.
“That’s Challenging”
Dr. Cho stumbled into radiation oncology, a field to which medical students had very little exposure when he was in school. He became involved in treating sarcomas and found them to be “very challenging stuff to treat.” Sarcomas involve every part of the body, and every body part has unique ways it can handle radiation. “Sarcoma is everywhere from head to toe – that’s challenging.” Targeting tumors while protecting healthy tissues is always the goal, and with sarcoma cancers the plans are unique to each person and different almost every time. “That’s what I like,” Dr. Cho said
He says that treating sarcoma cancers is “very challenging,” because they may appear anywhere in the body and often are located near critical body structures. In this work, as in life, each person is unique. Dr. Cho considers radiation oncology to be “a great field,” and he finds success in many different outcomes.
Clinical research is a big interest for Dr. Cho, who seeks to apply technology in different ways to improve outcomes. One cutting-edge tool is image guided stereotactic body radiotherapy, which can deliver precisely targeted beams. This is especially important for tumors, where the target location can change daily with normal fluctuations in the body.
In both prostate and lung cancer, doctors are studying new uses for radiation beams. Studies are being done to test the use of higher-dose and more precisely targeted radiation, given over several days instead of months. There are also ongoing studies comparing radiation head-to-head with surgery in lung cancer. Doctors look for short-term successes and problems, as well as long-term results. Some signs suggest that radiation therapy may be better than surgery, in certain cases. These technologies could be used with sarcoma, though the case would need to be chosen carefully.
Healthy Collaboration
At the University of Minnesota, doctors from many different fields all get together to talk about their sarcoma patients and decide which treatments would be best. The team has been meeting like this for years, and they are getting to the point where they “can almost guess what the other person is going to say.” All are “very comfortable expressing” an opinion, which leads to a great conference. The beauty about this is that each doctor is able to learn details and insights from the other specialists, leading to a well-informed and “healthy discussion” about how to treat. Most often, when the information is complete, the team can come to a consensus about what is best.
With sarcoma, of course, consensus is gained amidst uncertainty. There is a big open question, for example, about the best time to administer radiation. In Dr. Cho’s mind, pre-operative radiation is better. But better, he reminds us, “has to be defined collectively. What’s better for me is not better for Dr. Cheng.” When radiation is given before surgery, radiation oncologists can see their target better, decrease the dose and minimize the surrounding tissues that are affected. Yet pre-operative radiation can make surgery more difficult and doubles the wound healing problems after surgery. The best answer will vary for each patient, depending in part on the tumor size and location, as well as the important body structures located nearby.
Many Successes
Many outsiders consider radiation oncology to be a depressing field. Yet for half the patients, the doctors treat for a cure. “We want to get rid of it.” For the other half, treatment is designed to be palliative, which means to help with symptoms, pain and bleeding. “Each patient has a different goal,” Dr. Cho explains, and when pain is relieved, “we consider that a success.”
One difficult part of Dr. Cho’s job is trying to convey the vast amount of scientific literature about radiation therapy in a way that the patient understands and can accept. It is hard, for example, to explain the toxicities of radiation “without scaring them to death.”
And what is the good part? “When patients get better. That’s the reward.”
Dr. Felasfa Wodajo was “humbled and honored” by our request to interview him, because he finds that “actually, it is the patients fighting sarcoma who are the real stories.” An orthopedic oncologist, now is a member of Virginia Cancer Specialists. He has lead the Musculoskeletal Tumor Program at Virginia Hospital Center. His Oncology Nurse Coordinator meets with patients and families, and likes to refer them to support groups and resources. She found the RIS Sarcoma Patient Starter Notebook on line. As Dr. Wodajo recalls, those books “lit us up” and they began offering the books to their patients. Some patients became so moved they decided to give back to RIS, and a great connection has been strengthened.
A long and winding road
Dr. Wodajo emigrated to the United States from Ethiopia in the fifth grade, and his family moved to the Washington DC area, where he now lives. He loves Ethiopia, which is a beautiful country, and recommends the book “Cutting for Stone.” There is a huge Ethiopian community in the DC area, which still includes many from his family.
His Minnesota ties? His wife was adopted into a second family while waiting tables as a teenager in Minnesota, then completed nursing school in the area. They have returned to Minnesota many times for family visits. “It doesn’t get any more Minnesota than that!”
He loved studying biology in high school and college, so thought he may become a scientist. The year after he graduated from Princeton, he immersed himself in a lab. He says it was “intellectually interesting but not for me.” He felt lonely and bored by himself all day, not interacting with other people.
He decided to go another way. At the University of California, San Francisco School of Medicine, as is typical, he rotated through many different fields of practice. As a medical student, “you sample everything.” In the end he decided on general surgery, and went into residency for this. He decided he preferred orthopedic surgery. A good choice, as it happens. Dr. Wodajo liked orthopedic surgery then, and he still loves it now.
During his orthopedic residency at Howard University, he rotated through many different practices within that specialty. Oncology grabbed him then. “Something lit up.”
Looking back, this makes sense. Orthopedic oncology brings back that biology interest. The way cells behave “makes enormous differences in outcome for patients.” It also presents interesting challenges. But it still maintains the mechanical aspect of orthopedics during reconstruction surgery, when doctors think about forces and vectors.
A really important part
But a primary reason Dr. Wodajo keeps doing this work is the person part of it. For this part of a person’s experience, orthopedic oncologic surgeons have a really important part. The way they do their work makes such a difference. Doing something big is not always best, and sometimes the most important job a doctor has is to hold back unnecessary or unhelpful interventions.
Sometimes, he says, “we do a great job, patients have great outcomes, and we feel like walking on water.” Yet one of the families most dear to him is the kids of a man who died of sarcoma. He was an “incredibly intelligent, remarkable man” with no good treatment options, and he and his family needed wise guidance as they navigated this path.
One thing doctors must do is to talk with patients and families about the hard news of sarcoma. Doctors need to be blunt, conveying information in a way that they are not lying about a person’s condition or chances. But “there is a very long distance between blunt and harsh.” It is important to understand that “statistics are not predictive, they’re only descriptive.” Statistics like survival percentages are a piece of information, but people should know “it may not be as helpful as you think it is.” The true reality is the wide variation in different people with unique circumstances who have individual outcomes.
In the broadest sense, it is challenging to make the right decision, to know what to do. There are many options, and it is frustrating that there is so much room for the options to improve. Doctors who treat sarcoma patients wish they had better techniques, better implants, better chemotherapy. They wish they could do more. But it isn’t helpful to say that to the patients who sit in front of them.
I told Dr. Wodajo he could say it to us, because we at Rein in Sarcoma are well enough aware of the limits, but also are invested hopefully in changing the future.
Raising awareness
In the Washington area, orthopedic oncologists don’t see very many cases where a general surgeon has operated on a sarcoma without knowing it. He’s not sure why, but said “I’m happy about that.”
Perhaps one reason is an oncology review course Dr. Wodajo has presented annually for the last twelve years. Each class reaches 20 to 30 orthopedic residents in the region, and “each of those is a multiplier,” going out into the world to share their knowledge. A spark for the future: perhaps it would be important to reach general surgery and family practice residents too, because they may present the first contact for patients, but may not encounter sarcoma more than once or twice in their career.
As we know, each contact is important. Each moment may be sacred. So we very much appreciate teams like this Virginia team and leaders like Dr. Wodajo. Thank you for this work!
Dr. Julie Chu, a Hematology-Oncology physician at Children’s Hospitals and Clinics of Minnesota, loves to care for her individual patients. And when the person with cancer is a child, family members too become like patients. Pediatric cancer medicine is very family-centered, and the wishes, feelings and perspectives of the adults will impact the care of a child. Each child is a person, not a number or a diagnosis. Many different aspects of each person will impact their illness, their care and their coping.
Dr. Chu has been interested in cancer since her father died of stomach cancer when she was in high school. In college, she found Biology and Biochemistry to be fascinating subjects. Her mother always wanted her to be a doctor, but she was not so sure. Then she took her graduate school and medical school entrance exams, and decided a finite course in medical school would be better than an indefinite quest for a doctorate.
Pediatric medicine was a given, because Dr. Chu always liked kids. After attending medical school at the University of North Dakota, she served as a Resident at the University of Minnesota, where she “just loved” her rotations on the hematology-oncology floor. Dr. Chu left the Midwest for sunshine and warmth. She took her Hematology-Oncology Fellowship at Children’s Hospital in Los Angeles, California. Then, for a time, she began practicing in Oregon. When she was offered an opportunity to come back to the Midwest, to practice with Children’s Clinics in St. Paul, she wanted to return. She “always liked the way they practiced medicine in Minnesota,” and feels comfortable around Midwestern people. Now, after office consolidation, she practices in Minneapolis. Many of the patients she treats have some form of sarcoma.
Dr. Chu “really likes taking care of sick patients” and finds it rewarding to meet with new patients who have serious, life-threatening problems. There is never a dull moment, and many of them overcome their problems, do well, and are able to move forward. She said, “it always surprises me.” You have cases where you think people are so sick, and then “fast forward six months and they’re playing. You still have a mental picture of them intubated and in the Intensive Care Unit.” Other children look well, but run into complications. Each person is unique.
What has struck Dr. Chu through the years is how variable coping is. Culture, emotional state, and personal preferences all play a role. Often, when families have been coming to the hospital for a long time, and have gotten to know the routine and the people, they feel most comfortable at the hospital. It can be difficult to face taking all that away. But when time is short, people may want to go home or visit somewhere else.
Dr. Chu has attended Rein in Sarcoma’s Party in the Park several years, with her fellow oncologist Dr. Nancy McAllister. She also serves on the Medical Advisory Committee working with the Red Flags Campaign. The group has created materials and begun to increase outreach, to try to help patients and doctors identify sarcoma cancers early, before surgery is performed. There needs to be a balance, so not everyone is exposed to the risk of scanning. But better decisions could be made if more people knew about sarcoma.
When asked to name her favorite kind of sky, Dr. Chu recalled an early morning when she was returning from the health club, and how fascinating it was to see the sky completely cloudy in one direction; then, when she turned a different way, it was clear and blue. And in Arches National Park in Arizona, it was amazing how bright blue the sky was. It was so blue.
Her favorite colors? Green and purple.
And I am grateful for having had the privilege to talk with Dr. Chu.
It is hard to watch patients die. Yet getting to know people who face cancer and seeing how they persevere can be gratifying and inspirational. Treating cancer patients helps keep University of Minnesota Professor and orthopaedic surgeon Dr. Ed Cheng grounded and provides him with perspective. Dr. Cheng considers it a privilege to be a physician, to have the opportunity to care for people every day. He also considers Karen Wyckoff to be a great example of how “you can make a difference. One person can make a difference.”
Dr. Cheng was not involved in Karen’s medical care. He knew that patients who are motivated can make a difference, however, and was intrigued by the opportunities her ideas presented. So when the University of Minnesota asked for a doctor to help out with the new organization, carried forward by her parents, he agreed. Dr. Cheng became a founding board member. It has been “quite exciting” to see Rein in Sarcoma grow. RIS has generated energy and enthusiasm at the University, money has been raised to support cancer research, educational materials have been created for doctors and patients, and a new website has been developed. RIS Dr. Cheng teaches surgery at 2010 Mini-Medical School really has been “instrumental in the care, management and support of patients who have this terrible disease, sarcoma.”
When asked how he became involved in the educational video prepared for patients facing amputation, Dr. Cheng said: “You know they say ideas are born out of necessity, and that was certainly the case here.” The life-changing effects of losing a limb are “so paramount,” patients need to sort through this over a much longer time frame than is available in an office visit. Patients need to understand not only the functional and logistical changes they can expect but also the psychosocial aspect of coping with the loss of their limb. They need to have this information provided in a way that is sensitive and compassionate. If doctors don’t provide help for patients going through this challenging process, they are missing the “art of medicine.” One way to help patients is by hearing and learning from others who have gone through similar experiences.
But when Dr. Cheng set out to look for resources to share with his patients, he couldn’t find them. He identified this as an unmet medical need and decided to ask RIS for funding to help create materials. RIS did award funding, and Dr. Cheng led the efforts to make a video including interviews with adults who have undergone major surgery and limb amputation. He personally found the movie clips inspirational to watch. He learned things he had not known about what people experience, and he has incorporated this knowledge to help his discussions with new patients.
The intent of the video was to help as many people as possible, so it is posted on YouTube as well as the websites of the University’s Cancer Center Sarcoma homepage and Rein in Sarcoma. With time, more and more people are watching the clips, some from places far away.
Those who’ve been involved in making the movie have noted the gratification of knowing that they’ve helped people elsewhere, some of whom they haven’t even seen. “So we have to say thank you to KWRISF,” Dr. Cheng added, “because without them we would not have been able to do it.” Another RIS-funded video is in process to address children’s experiences.
Dr. Cheng always wanted to be a doctor, since he was a boy in elementary school. He received his Medical Degree from Northwestern University in 1983 and did a General Surgery Residency there. He moved to Harvard, where he completed an Orthopaedic Surgery Residency in 1989 and Fellowships in Orthopaedic Oncology and Pediatric Orthopaedic Oncology in 1990. Also in 1990, Dr. Cheng joined the University of Minnesota faculty. He has practiced here ever since.
From time to time, of course, Dr. Cheng does leave the state. For example, this was his second year traveling to Mongolia as a medical missionary, as part of his ministry through the Christian Medical & Dental Society. Dr. Cheng felt called to a broader mission, beyond his practice here, and wished to offer this service in Christ. He had the opportunity to consult with physicians in Mongolia and help care for their patients. He found it rewarding to educate doctors about cancer treatments and complex joint replacements and to help them build their infrastructure. “This is not giving them a fish, but teaching them to fish,” which may leave a lasting legacy. And through the wonders of electronic communication, Dr. Cheng can continue to consult with physicians there, even from his place in Minnesota.
Dr. Cheng loves his work as a physician. “How many people have the chance to help someone out all the time?” he asked. Every day, he gets to “see all these stories” and meet new people. He also has the chance to teach other doctors. And one never knows what else may come along. “RIS just popped up,” he said, and “look what it’s become.” Dr. Cheng would encourage young people who are interested to consider this career. He also would encourage people to “have confidence in knowing that if you think big, you can make a difference.”
