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.”

By Christin Garcia

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!

By Christin Garcia

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.

By Christin Garcia

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.

Video for Cancer Patients Facing Amputation

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.”

By Christin Garcia

Orthopedic surgeon Dr. Denis Clohisy saves lives. With a world-class multidisciplinary team at the University of Minnesota, he is working to save more. RIS funding provides a creative spark and a vital source for a “hopeful research culture” at the U, which may one day contribute badly needed treatment advances for sarcoma. For now, each day, the University team provides outstanding patient care, in an environment enriched and energized by RIS.

Dr. Denis Clohisy has been treating sarcoma patients for 20 years. A surgeon who joined the University of Minnesota Medical School faculty in 1991, Dr. Clohisy was named Chair of the Department of Orthopedic Surgery in November 2007. With a world-class multidisciplinary team, Clohisy is leading efforts to develop better treatments for patients who have sarcoma cancer. These treatments are badly needed, as can be seen in the persistently hard survival rates that accompany some diagnoses. Yet one young woman who lost her life to sarcoma started a revolution, here in Minnesota. Her spirit of hope, her wish for community, can be felt every day. Rein in Sarcoma (RIS) has grown from its small beginnings in 2001, just months before Karen died, to become an important spark for creative ideas, hopeful energy, and inspired patient care at the University.

Have you ever seen the sunflowers? At any event hosted by RIS, gorgeous cloth flowers mark the survivors. At the Party in the Park celebration each July, the sunflowers are out in force. Asked how it feels to see so many people walking around who are there because they have been treated at the University, Dr. Clohisy said this picnic is “the most rewarding day of the year” in his professional life. He loves to have his own children join him there, to see the impact his work is having on so many other lives. The children he has treated hold a special place in Dr. Clohisy’s heart. So, too, do the families who have lost someone to sarcoma. To see their willingness to participate in the organization, despite their loss; “it’s really inspiring.” And hopefully this means the family believes their loved one received the best care possible, even though they could not be cured. This picnic is a very special thing.

Asked about the impact RIS has had at the University, Dr. Clohisy discussed the practical support for research, at a time when it is extremely difficult to get funding. By providing money that allows researchers to test their ideas, a necessary first step before they can seek large-scale funding from major organizations, RIS has created “a hopeful research culture.” RIS also has created a culture of scholarship, research and energy that has drawn more people to the field. More doctors are treating sarcoma patients, more scientists are researching sarcoma cancers, and the team works together more collaboratively to share and develop ideas. This is really important. The young post-doctoral scientists dedicated to sarcoma research, in particular, may be the ones who discover breakthrough treatments. Ten years ago, there were not graduate students who knew much about sarcomas or cared to focus their research in the field. This has changed.

By providing money that allows researchers to test their ideas, a necessary first step before they can seek large-scale funding from major organizations, RIS has created “a hopeful research culture.”

University scientists are succeeding, as measured by publication of their work in leading scientific journals and by research funds granted, including a large grant from the prestigious National Institutes of Health. Cutting-edge genetic research takes place at Minnesota, enabled in part by RIS investments.

Yet the most important impact RIS has had goes way beyond this funding. The education and support for patients who otherwise would feel extremely isolated; the collaborative energy among the medical team; the hopeful research culture? All created through RIS. As Dr. Clohisy observed, “If you think about that, it’s quite impressive.” Dr. Clohisy joined the RIS Board of Directors in January of 2017.

You who are reading this article may have a deeply personal understanding about the value RIS brings; the special collaboration between RIS and the University of Minnesota; the need for medical advances. We hope you will continue to support this work with your time, your energy and your financial resources.

We also hope you will continue to share your smiles with other families who face sarcoma. You do remember, how much those smiles can mean?

University of Minnesota Professor and Radiation Oncologist Katie Dusenbery has been involved with Rein in Sarcoma from the start. After all, she tells us, “Karen was my patient.” She appreciates the support RIS provides for her other patients and looks for ways the physicians can say thank you in return. A founding board member, Dr. Dusenbery has focused on the education aspect of RIS’ mission.

She loves introducing medical students to oncology. Each time she does, there is “one more person who knows how wonderful cancer patients are.”

After completing a residency at Michigan State University, Dr. Dusenbery came to Minnesota for a Fellowship in Medical Oncology. She switched to radiation oncology for a time, not intending this to be permanent. She discovered a whole different aspect of taking care of patients that she really liked, and decided to stay. In 1990, she took her first staff position at the University of Minnesota. She has served as Head of the Department of Therapeutic Radiology since 1999 and now is recognized as one of the Best Doctors in America in her field. As she talks, one understands that Dr. Dusenbery has a passion for the clinic; she really cares for her patients, and she wishes to train new doctors who will do so, as well.

The rigorous, multi-disciplinary work in an academic medical center always called to Dr. Dusenbery. She can’t imagine practicing any other way. As you may know, there is a good deal of “gray” when it comes to treating sarcoma cancers. It is easier to make decisions in collaboration – and also fun.

When she began to treat patients with sarcoma cancer, there were no other radiation oncologists specializing in the area. Dr. Dusenbery gravitated to these patients, who often were young, and saw this as a great opportunity for her future work. Although she now shares sarcoma patients with Dr. Chinsoo Cho, who she recruited to her program several years ago, Dr. Dusenbery still treats patients. Especially the kids. With pediatric patients, the first challenge is to see if you can avoid having to give radiation at all. Because their bodies are still growing, their cells can be more vulnerable to radiation damage. They also have much longer lives ahead of them, making the risk of secondary cancers that can develop as a side effect less tolerable. If radiation really is required, “you try to limit the dose as much as you can.”

Just what does a radiation oncologist do? Long-term follow-up with patients, for one thing. “I love that.” But first, they design the radiation field by drawing on a scanned image, slice by slice, to show what areas should be treated and which should be avoided. Dosimetrists and medical physicists help to translate these instructions before the machine is powered on and the precisely targeted beams are delivered. Sounds like Star Wars to me. And there is a lot of art involved. Decisions must be made based on imperfect data. Doctors must balance the goal of controlling the cancer against the desire not to cause harm. One of the most difficult aspects of Dr. Dusenbery’s medical practice is when a patient’s cancer comes back, or a patient experiences a bad side effect, and “you second guess what you should have done.”

Teaching others how to navigate these challenges is another great part of Dr. Dusenbery’s job. She loves seeing a resident start out not knowing what they’re doing, then learn, then go out and do well in practice. “When they become a really good doctor.” Teaching doctors how to treat patients well “can make a difference for a lifetime.”

The oncology patients, in particular, have spoken to Dr. Dusenbery. Cancer is “an advanced course in living” and it is really an honor and a privilege to be on the journey with them. One family she joined for the journey was Karen Wyckoff’s. Karen was “such an incredibly wise beyond her years young woman” and it was really fun knowing her. Dr. Dusenbery was a founding Rein in Sarcoma board member. One has the sense that she will stay connected for as long as she is welcomed. And she seeks good ideas, including ideas about how the physicians can thank the group for all the patient support services it provides.

This wish led her to begin the Mini Medical School, which was presented by UMN doctors for several years. Offering families, volunteers and donors the chance to learn about sarcoma, up close and hands-on, the Saturday morning affair was been a big hit with those who’ve attended.

Dr. Dusenbery began the Rein in Sarcoma Scholar program in 2009 (now the Jan Maudlin Sarcoma Scholars), connecting medical residents with the University’s sarcoma team. The scholars coordinate an educational presentation about sarcoma to other medical students, increasing the chance that if they encounter a sarcoma cancer in clinical practice, they will actually notice the signs and respond appropriately. The Jan Maudlin Sarcoma Scholar program offers another benefit: there is “one more person who might become an oncologist.”

We thank Dr. Dusenbery for her long and inspired service to RIS.

By Christin Garcia