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MESSAGE FROM THE DIRECTOR
TABLE OF CONTENTS cancer committee MEMBERS
ancer patients must face a long and daunting journey. Not only must they evaluate complex treatment options, tolerate sometimes toxic therapies, and interact with several physicians, they must do so while burdened with physical illness, emotional trauma, and stresses from home, family, work and finance. A worthy cancer program recognizes these challenges and seeks to provide truly patient-centered care. People who have cancer express three crucial desires: to feel secure that they are receiving the best, most effective treatment; to know that their physicians are communicating with each other about their care; and to know that, when personal or medical issues arise, their concerns will be heard, respected and addressed. At the SIH Cancer Institute, the physicians involved in cancer care attend treatment planning conferences that include patient navigators, nurses, clinical trial manager, palliative care representative and cancer registrars. Cases are discussed individually and care is planned, carried out, reviewed and measured under National Comprehensive Cancer Network evidence based clinical practice standards. And ongoing support and access to care are provided by the Patient Navigators, who form relationships with their patients and remain available 24/7 to address the needs that arise. This report shares information about SIHCI services, facilities and personnel. It reflects the fact that at least 90% of cancer patients can receive comprehensive and progressive treatment within this community cancer program. But just as importantly it relates something of the personal stories of those around whom all the care and effort is centered – their needs are the reason our physicians and services exist. Mary K Rosenow, M.D., Ph.D., FACS Medical Director, SIH Cancer Institute
Mary Rosenow, MD Chair George Kao, MD Radiation Oncology, Cancer Liaison Physician Justin Hodge, MD Diagnostic Radiology Marsha Ryan, MD Surgery Kenneth Saum, MD Thoracic Surgery David Clutts, MD Surgery Frederick Dressen, DO Surgery Sujatha Rao, MD Medical Oncology Peter Graham, MD Medical Oncology C. Padmalatha, MD Pathology Moses Adeyanju, MD Pathology Elbert Fasnacht, MD Palliative Care Abby Woods, FNP Palliative Care Aisha White, MD Reconstructive Surgery Jennifer Badiu, MHSA Administration Christena Vallerga, CTR Cancer Registry, Registry Data Quality Coordinator Susan Culton Cancer Registry, Cancer Conference Coordinator Lynn Torres, RN Quality Improvement QI Coordinator Debra Newbolds, RN Education Department, Community Outreach Coordinator Johnna Smith, RN Oncology Nursing Terry Vega Social Service Cary Mosley Radiation Oncology Lisa Mann American Cancer Society Stephen Pyle Pastoral Care Sue Williams Cancer Registry Joevaughn Williams Cancer Registry Allida Plumer, RN Hospice of Southern Illinois Donna Crow, RN Navigator Program Jan Danley Nutrition Service Valerie Baker Cancer Care Services Cynthia Davis, RN Navigator Program Tonica Anderson, RN Clinical Trials Office
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VICTORIA’S STORY
CANCER PATIENT NAVIGATORS
SITE SPECIFIC GROUPS
CANCER CARE CONTINUUM
CANCER REGISTRY LIST
18 22 25 26 27
COMMITMENT TO CARING
SURVIVORS’ STORY
QUALITY MEASURES
ADMINISTRATIVE DIRECTOR’S MESSAGE REFERENCES • RESOURCES CONTACT INFORMATION
Accreditations and Affiliations Commission on Cancer Approval with Commendation National Accreditation Program for Breast Centers American College of Radiologists Breast Imaging Center of Excellence College of American Pathologists Laboratory Accreditation National Cancer Database Illinois State Cancer Registry National Cancer Registrars Association Little Egypt and Southern Seven Breast and Cervical Cancer Prevention Program American Society of Breast Surgeons Mastery of Breast Surgery Program Medical Oncology Nursing Excellence Program Academy of Oncology Nurse Navigators
Academic Affiliation: Simmons Cancer Institute of Southern Illinois University School of Medicine Central Illinois Community Clinical Oncology Program (CI-CCOP) for clinical trials National Cancer Institute Radiological Physics Center for radiation therapy quality control through M.D. Anderson Cancer Center Illinois State Cancer Control Program Rehabilitation Institute of Chicago National Cancer Institute Education in Palliative Care EPEC-O: End of Life Care for Oncology Hospice of Southern Illinois End of Life Nursing Education Consortium (ELNEC) Oncology Nursing Society American College of Health Care Executives Advisory Board Oncology Roundtable
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ictoria Johnson has never worn a wig to cover up the fact that she has cancer. On the contrary, she hopes that when she is out in public, people will take notice. “I want to be that walking bald-headed lady that they all stare at, and you know... come up and talk to,” she says. “I just want them to realize, this is what’s under a bandana. This is what’s under a hat. “Sometimes God has to take away our beauty that we call hair to show people that there’s more than that, that there’s what’s inside that person. Women don’t have to be ashamed to be bald.” Losing her hair doesn’t concern her. Neither does the 45 pound weight gain, or the possibility of losing both of her breasts to a mastectomy, which she says she is actually looking forward to. Losing her eyelashes, however, was a little traumatic: “I’m a big mascara fan,” she says.
“WHEN YOU’RE GOING THROUGH PROBLEMS... YOU TEND TO TAKE CARE OF EVERYONE ELSE OR YOU WORRY ABOUT OTHER THINGS THAN TO WORRY ABOUT YOURSELF.”
Although she displays a lot of confidence now, Johnson was not always ready to face what a cancer diagnosis would bring her way.
FINDING STRENGTH FOR SURVIVAL At 42 years old, Johnson, a resident of Zeigler, Ill., had recently gone through a divorce. Her doctors had been encouraging her for years to get a routine mammogram, something women are advised to do each year after they turn 40. But Johnson kept pushing it off. In the back of her mind, she suspected something was wrong, but chose to ignore it while she dealt with pressing matters. “When you’re going through problems, in your marriage, or with your children, you tend to take care of everyone else or you worry about other things than to worry about yourself,” she said. “I knew that there was something there; I chose not to [get a mammogram.]” When her divorce was finalized, she gave in and got the mammogram done. “I knew then and there they were going to find something,” she said. “And when they were doing the mammogram at Breast Center of Herrin Hospital, I had a feeling there was something. She didn’t say anything to me but ...” That was in February. A few weeks later, Johnson was undergoing treatment for clinical stage 2 breast cancer.
VICTORIA JOHNSON, SIH patient and cancer survivor
“I was at work when I got the news, and at the time, I thought I could handle anything,” she said. “But when you get that news, it’s scary. When the doctor called me at work and told me that I had cancer, I was so upset that I was shaking, crying ... it was a horrible experience. I had to leave work. I cried all the way home. And I went to my room and I cried for about an hour.”
Relaxing while receiving an infusion in Dr. Alberto Cuartas’ chemotherapy suite.
VICTORIA’S STORY [cont’d]
Departing following one of many visits to the Breast Center.
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“you need to lift yourself up, and dust yourself off, and look straight up, ‘cause once you’re lying flat on your back, all you’ve got is to look up, and all you have is God.”
Johnson credits the support of family and friends, her doctors and her faith in God with helping her make it through her cancer treatments, which she says did not go as she expected. “During chemo you have to take shots, to help stir your bone marrow and different things, and the first set that I ever took, I could hardly walk,” she said. “I had to call my home pastor…and a good other pastor friend of mine… and some deacons to come over, and they prayed over me. And after they did, you know, the pain eased up some, for me to be able to work.” Then there were the chemotherapy treatments, the first of which didn’t affect her at all, besides taking her hair. A second set of chemotherapy treatments has made her tired and nauseous, causing her also to suffer diarrhea. Her struggles with life changing events made Johnson want to lose faith. “Sometimes you question God,” she said. “’Why me?’ But, you know, at night when I’m awake, God says, ‘Why not you, Victoria? Sometimes you need to walk. You know, you can buy people baskets all day long for cancer, you can go deliver them food, but sometimes you need to walk in their shoes.’ And I am thankful that I get to walk in their shoes.” The positive attitude she has adopted has helped her gain perspective on her experience with cancer. In fact, Johnson described her cancer as a blessing. “I’m glad that I’m walking through cancer, and I know that I’m going to be a survivor of cancer,” she says. “This has been the most wonderful experience. And I know people are thinking, ‘The most wonderful experience?’ But truly it has been, by listening to others.” “I get to hear wonderful stories of other people and the situations in life that they go through…and I want them to know I’m going through the same trials and valleys, but you have a choice. Either you can look at everything negatively and look down on your life, or you need to lift yourself up, and dust yourself off, and look straight up, ‘cause once you’re lying flat on your back, all you’ve got is to look up, and all you have is God.”
Enjoying a visit with doting niece Grace Perruquet.
VICTORIA’S STORY [cont’d]
Reviewing test results with Dr. Alberto Cuartas.
VICTORIA’S STORY [cont’d]
“Victoria is a very strong young lady,” Crow said. “[She] will be such a role model for others now and will continue to be in the future.”
Johnson’s bold decision to go without a wig is part of her way of inviting people to take an honest look at cancer. “You know I’m never here to make anyone feel uncomfortable, but I want everybody to know and understand that cancer is an epidemic like the flu,” she said. “I want them to know I’ll be there for them if any of their family members are diagnosed with cancer and to see what cancer, what chemo can do.
Johnson has already had the opportunity to share her own story with women who have just been diagnosed with cancer. “They don’t know what to do, or who they should call or contact…I try to keep them informed as I was informed by others.”
But if you’re not willing to take time to understand it, you’re never going to understand it until it hits your home, and then you’re wondering, ‘What am I going do? Who am I going call?’ I want to be that walking information.”
Donna Crow, RN, BHPN, Johnson’s Patient Navigator, has walked with her through many of her trials with cancer. She has seen first hand how Johnson has been able to handle all the stress that cancer has brought.
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CANCER PATIENT NAVIGATORS: nyone who has ever traveled understands the importance of having clear directions. Unless you have been down a road before, or have someone or something to guide you, you will almost surely find yourself lost, frustrated, and sometimes frightened in an unfamiliar place. A cancer diagnosis often thrusts people headlong down a road they did not expect to travel, many times feeling overwhelmed, and with few resources to draw from. “There are so many questions and so much,” said Sharon Ricketts, a breast cancer survivor from Herrin, Ill. Ricketts was diagnosed with HER-2 positive breast cancer and underwent surgery early in 2007. “I’d never been sick hardly ever in my life, never had all those tests; everything was extremely frightening.”
Guiding Patients Through the Unknown Newly diagnosed patients in Southern Illinois seldom feel lost and alone for very long, however, thanks to the SIH Cancer Institute Patient Navigators Donna Crow, RN, BHPN, and Cynthia Davis, RN, CHPN. Cancer Patient Navigators meet patients right at the beginning of their journey through cancer: at the point of diagnosis. Their role is to connect patients with resources, assist with needs, and to be a source of support and guidance for what to expect in treatment and recovery.
Patient Navigator Cindy Davis responds to a joke told by Willy Groninger, colon cancer patient, during his final illness.
“I help [patients] manage the plan of care that they choose,” said Davis. “I am a confidant. I help them find a way to tell family members about their diagnosis. I help them tell loved ones goodbye if that is where their journey goes.”
Patient Navigator Donna Crow organizes testing schedules and helps Sherry Tyler Gibson to arrive on time.
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My goal for the women and men I come in contact with is to be there to help them through the journey. It can be long and bumpy. DONNA CROW, SIHCI PATIENT NAVIGATOR AND CANCER SURVIVOR
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Crow meets Ms. Betty Korando just prior to her surgery, offering encouragement and a pillow to ease postoperative discomfort. NAVIGATORS [cont’d]
Ewing was diagnosed and treated in another city, mainly because her OBGyn was based there and would not give her a referral for local cancer treatment. Shortly after receiving her diagnosis, Crow reached out to her. “I came home, and I was really upset about it, “ Ewing recalled. “Somebody told me about Donna. I think I called and left a message maybe, at her office in Carbondale. And she called me at home.” Ewing’s voice began to break as she continued. “It was so sweet— didn’t know me, and I wasn’t going to the doctor here, and offered to meet me, talked to me on the telephone. She was just really, really caring.” “Being diagnosed with Breast Cancer can be very scary,” Crow said. “My goal for the women and men I come in contact with is to be there to help them through the journey. It can be long and bumpy.”
NAVIGATORS [cont’d]
Ricketts remembers when she first received news of her diagnosis. “Almost immediately, Donna came into play,” Ricketts says. “She was there when I had my surgery. She was really a wonderful person to have.” A breast cancer survivor herself, Crow began working with SIHCI as the Breast Health Patient Navigator in 2006. For this reason, women find it easy to connect with her. “She’s been through this before, and she knows what people go through,” said Joanne Davis, a
three-year survivor of ductal carcinoma. “Just being able to talk to her about things I’m going through, and she went through similar experiences, and just to know that I’m not alone in my journey through this.” Crow’s own journey with cancer began in December 1999, when she also was diagnosed with invasive ductal carcinoma. As part of her recovery process, Crow began organizing a monthly support meeting of cancer survivors called, “Women with Hope,” something she initiated in 2000. Now the group has become part of her role as a patient navigator, meeting at the Breast Center as well as in local restaurants. Many new breast cancer patients participate in
Cynthia Davis became a Patient Navigator in March 2011, having worked four years at Memorial Hospital of Carbondale as a case manager. She previously had spent 10 years working as a hospice nurse. Cynthia’s mother died while in hospice care at home. Cynthia said her experiences in nursing and her work as a hospice nurse made her well-suited to the role of Cancer Patient Navigator, where she empowers patients to make choices about their own plans of care. “I tell my patients that my title is Cancer Patient Navigator but my role is to be their partner, buddy, fellow warrior,” Davis says. “I support the decisions that they make when others may not. I answer questions that others may find too difficult to discuss. I am always honest, even if it hurts. This role is definitely the biggest highlight of my nursing career.”
the Women with Hope group. “What is so important about this group is that we all talk about our problems, and we all try to uplift each other, and just be as supportive as we can,” said Nancy Schmidt, who finished her cancer treatment 3 years ago. “When anyone has a problem, we always discuss it, and ask Donna what she thinks, and she always has an answer for us, and if she doesn’t, she’ll find out.” “Everyone in the group is kind of in a different stage,” adds Karen Ewing, who finished her cancer treatments in March 2010. “So that’s kind of nice. You can kind of see where they’ve been, or where you’re at several years down the road.”
Davis accompanies Mr. and Mrs. George and Dora Howerton on the day of his first treatment for lung cancer by Dr. George Kao.
Davis said she treasures the opportunity to be allowed into someone else’s life. Some patients give her much more than she feels that she offers to them. She recalled a recent patient she worked with who was about to die, and the inspiration she received from the patient’s wife. “I was able to honor a last wish of the patient and I was able to watch a woman stand beside her husband with unfaltering strength,” Davis said. “She was a rock and she was taking care of her husband and son first and foremost. I hope that I can have half of her strength if I am ever in her position.” Davis’ work as a Cancer Patient Navigator through SIH has been both a privilege and an inspiration for her. “I have seen people finish treatment and plan for the future,” she said. “I have seen people that have been diagnosed early and that have survived. I have been a cheerleader and a coach. I am happier than I have ever been.”
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t is 7 a.m. on a Wednesday morning in a small conference room at Carbondale Memorial Hospital. A screen glows with an MRI image tracing the spidery outlines of a tumor that has taken root in a woman’s breast. Eighteen physicians, oncologists, surgeons and pathologists listen as a surgeon describes the patient’s treatment history and the current obstacle posed by the encroaching tumor. They consider different treatment options from their individual perspectives, but determine together the best course of care for the patient.
COLLABORATIVE TREATMENT TEAMS IMPROVE PATIENT CARE
This gathering of professionals of the Southern Illinois Healthcare Cancer Institute is one of three different “sitespecific treatment planning conferences” that take place on a regular basis. Each one focuses on one type of cancer: breast, lung, and gastrointestinal. The multidisciplinary conference approach is used by academic institutions and most large community programs, but not many smaller institutions such as SIHCI are currently using this model. Local patients and their physicians may not be aware that this and the comprehensive spectrum of services offered by SIHCI exist outside of larger metropolitan areas.
“I think the site-specific conferences are really very important because we are getting an opportunity to discuss with all the specialists, including pathology, radiology, oncology,” said Sujatha Rao, MD, a hematologist and oncologist with special interests in breast cancer and lymphoma. “That way, we are making sure that we are doing the right thing for the patient and we get feedback from different specialties, so ultimately it will translate into good care for the patient.” The SIHCI site-specific treatment groups have been meeting for over a year now, and so far, patient and physician feedback has been positive. Patients tend to be more satisfied and confident with their care, knowing that their individual cases are being discussed by a group of knowledgeable professionals. Patients have even asked whether their cases have been discussed by the team. Referring physicians also value receiving reports summarizing the discussions and treatment recommendations, which adhere to nationally recognized treatment standards.
Dr. Chandrashekar Padmalatha discusses the surgical pathology results for a case of colon cancer.
Not everyone participating in the conferences immediately agrees on what should be done in each case. There are questions that demonstrate a commitment to evidence-based treatment, such as “What does the scientific literature say about cases like this?” Some questions address treatments previously tried, and whether guidelines can or should be applied for patients who have already undergone various treatments.
Medical oncologist Bhanu Vakkalanka, MD, summarizes the national cooperative group trial results as they apply to a case of lung cancer.
Breast cancer group members listen to radiologist Marcy McIntosh, MD explain the range of imaging modalities appropriate for a case of recurrent breast cancer.
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using a group approach, SITE SPECIFIC CONFERENCE participants search for innovative treatment approaches that will extend time and quality of life for patientS.
SITE SPECIFIC CONFERENCES [cont’d]
Still other questions demonstrate that to these professionals, the patients they are discussing are not just another file, or an interesting case, or one of a hundred digitized images depicting anomalous anatomical structures. They are people whose experiences with treatment matter as much as the quality of the care they receive. “What will the psychological effects of this procedure be?” surgeon Marsha Ryan, MD, asks about a pre-operative procedure proposed for one patient. Another doctor looks earnestly toward his colleagues for an innovative treatment approach that will extend time and quality of life for a patient. Rao said that through using a group approach, participants often learn things about cases that might escape them otherwise, a further benefit for both doctor and patient. “I have seen quite a few instances where a gray area or a misconception gets ironed out at the conference,” she said. “But a few years ago, with no conference and no close communication, the treatment may have not been as appropriate because the issue was not understood to exist by the doctor who was working in a vacuum.” The benefits of cooperation among participants in the SIHCI treatment groups was evident on this Wednesday morning, as Ryan looked up from a patient file the group was reviewing to address Rao, who had given her patient chemotherapy prior to surgery. The chemotherapy she received drastically reduced the size of the patient’s tumor so that she needed only a lumpectomy. “I’m just here to tell you guys, you work miracles,” Ryan said. “It was really pretty stunning.”
Pulmonologist Raymund Pineda, MD, presents a lung cancer patient’s recent history and diagnostic findings to the lung cancer group.
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CANCER CARE CONTINUUM PREVENTION
DIAGNOSIS AND PLANNING (cont’d)
Smoking cessation intervention
Head and Neck
David Mann, MD
Surgical
The Great American Smokeout
Gastroenterology
Mack McCain, MD
Specialists
Alcohol and oral tobacco education
Zahoor Makhdoom, MD
Thoracic
Diet and exercise programs
Sushil Tibrewala, MD
Breast
Sun exposure education
Gynecology
Various
Urologic
Breast health awareness
Breast
Marsha Ryan, MD
Colorectal
Breast self exam classes
Cynthia Aks, DO
Gastrointestinal
Breast cancer risk assessment
Marcy McIntosh, MD
Dermatologic
Women’s Health Fair
Central Nervous System
Jeffery Jones, MD
Musculoskeletal
Men’s Health Conference
Jon Taveau, MD
Central Nervous System
Community Benefits Office
Medical Oncology
Alberto Cuartas, MD
Head and Neck
Education Department
Peter Graham, MD
Gynecologic
Cancer Connection Newsletter
Sujatha Rao, MD
Urologic
Bhanu Vakkalanka, MD
DETECTION Multidisciplinary Breast Center Advanced diagnostic and staging imaging
George Kao, MD
Advanced Treatment Technology
Elbert Fasnacht, MD
Laparoscopic Surgery
Thoracoscopic Surgery
Da Vinci Robotic Surgery
Image guided surgery
Interventional radiology
Site Specific Groups: Multidisciplinary treatment planning Staging NCCN Standards Advanced diagnostic and staging imaging
Prostate, Skin, Colorectal, Cervical Education programs for early detection
Plastic/Reconstructive
Palliative Care
Low cost/free breast and cervical Screenings:
TREATMENT
Radiation Oncology
Advanced diagnostic pathology cancer screening
Minimally invasive evaluation and biopsy Interventional radiology Multidisciplinary Breast Center
DIAGNOSIS AND PLANNING
Genetic counseling for breast cancer
Specialty Clinics and Physicians
Cancer Registry data analysis
Radiation Oncology
IMRT
IGRT Brachytherapy
Stereotactic radiosurgery
Medical Oncology Navigator Program Outpatient Infusion Center Clinical Trials Office Quality Metrics and Benchmarking
Pulmonary
Suhail Istanbouly, MD
Raymund Pineda, MD
Cancer cases analyzed and reported to the Commission on Cancer National Cancer Database,
CANCER REGISTRY LIST
SUPPORT AND SURVIVORSHIP
National Cooperative Clinical Trials
The Cancer Registry collects detailed information on each patient’s diagnosis, extent of disease, treatment and follow-up. The data collected serves as a vital tool at the local, state and national levels. These statistical facts are used in developing needs assessment/program planning such as community outreach programs, quality improvement measures, cancer surveillance, and epidemiologic research.
CHRISTENA M. VALLERGA, CTR, CPC, LVN Cancer Information Supervisor, SIH Cancer Institute
2009 and 2010 combined.
PRIMARY SITES ALL SITES
TOTAL 1,133
ORAL CAVITY Tongue Oropharynx Hypopharynx Other
21 6 2 2 11
DIGESTIVE SYSTEM Esophagus Stomach Colon Rectum Anus/anal canal Liver Pancreas Other
188 15 9 74 38 6 7 25 14
RESPIRATORY SYSTEM Larynx Lung/bronchus BLOOD/ BONE MARROW Leukemia Multiple Myeloma Other
284 6 278 32 9 15 8
Cancer Specific Rehabilitation
END OF LIFE
BONE
3
SOFT TISSUE
3
Dani Tazbaz, MD Thoracic Surgery
Kenneth Saum, MD
Patient Navigation Program
Palliative Care Program
General Surgery
Naresh Ahuja, MD
Support groups:
Southern Illinois Hospice
Judson Brewer, MD
General Cancer Group
Spiritual Care
David Clutts, MD
Women with Hope
Bereavement Counseling
Frederick Dressen, DO
Ostomy Group
Antoni Kos, MD
Spiritual Services
Udaya Liyanage, MD
Strong Survivors Program
L. Neal McCain, MD
Survivor Events and Celebrations
Genitourinary
Sam Stokes, MD
Nutrition Counseling
Lawrence Hatchett, MD
Health and Wellness Programs
Dermatology
Sean Burke, MD
Financial Counseling
Plastic/Reconstructive
Aisha White, MD
Advocacy Training
SKIN Melanoma Other
25 18 7
BREAST
302
FEMALE GENITAL Cervix Corpus uteri Ovary Vulva
31 4 10 7 10
MALE GENITAL Prostate Testis Other
91 84 6 1
URINARY SYSTEM Bladder Kidney
30 10 20
BRAIN & CNS 38 Brain (benign) 7 Brain (malignant) 16 Other 15
ENDOCRINE Thyroid Other
11 7 4
LYMPHATIC SYSTEM Hodgkins Disease Non-Hodgkins Lymphoma
49 9 40
UNKNOWN PRIMARY 23 OTHER/ILL DEFINED 2
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, he affiliated physicians of the SIH Cancer institute, which was launched in June 2010, have made it their mission to be a center of comprehensive cancer care for the southern Illinois region. The Institute exists to provide residents of this region with comprehensive care at home, cutting-edge treatment in the form of clinical trials conducted locally, and a smooth referral process to the Simmons Cancer Institute at SIU School of Medicine in Springfield, for patients who may require more extensive treatment.
“All along, I was driven by the need to reach out to patients both intellectually and emotionally, at the highest professional level.”
Although it is considered a smaller-sized community hospital system, the Institute has strived to offer what has historically been available only in larger metropolitan areas. This is significant, says Dr. Sujatha Rao, medical oncologist and central figure of the SIH cancer program, because people in southern Illinois do not have to travel to distant places to receive quality cancer treatment. “[Patients] want to be close to the community, they want to be close to home,” she said. ”And travel is a hassle for them. Especially with chemotherapy, for example. They go and get treated [somewhere else], they come back here and they get sick. They may not have an opportunity to travel back to get admitted and get treated [elsewhere]. I think patients feel better when they are sick if their medical oncologist comes and takes care of them. That way they feel more secure.”
Overall, the SIHCI has 32 formally affiliated physicians who participate in the multidisciplinary treatment of cancers of various types. Rao is one of five doctors among this talented and caring team who treat cancers exclusively. The other four are Dr. Bhanu Vakkalanka, oncologist and a partner with Rao at Hem-Onc Care in Carbondale; Dr. Alberto Cuartas, oncologist and hematologist whose practice is located in Marion, Dr. Peter Graham, medical oncologist and internal medicine physician who practices at Premier Oncology Care in Carbondale, and Dr. George Kao, radiation oncologist at the Memorial Hospital Cancer Center.
WORLD-CLASS TREATMENT AT SIH CANCER INSTITUTE
The doctors are devoted to providing the highest quality of care in an atmosphere that communicates a genuine commitment to their patients. They understand that caring means concern for patient needs beyond the physical. “All along,” Vakkalanka says, “I was driven by the need to reach out to patients both intellectually and emotionally, at the highest professional level.”
Thoracic surgeon Kenneth Saum, MD studies a lung tumor with bronchoscopy in the operating room prior to performing surgery to remove it.
Rao said that when physicians care about their patients, that concern carries over to a patient’s willingness to follow through on physician recommendations, which helps the physicians do their job. “The patients are very grateful,” she said. “And they’re very respectful. And if the doctor is caring, they’ll do anything for the physician—they’ll work with the physician.”
Radiation oncologist George Kao, MD, discusses treatment planning with Bob Aus, PhD, medical physicist.
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Colon cancer patient Willy Groninger kids around with his favorite medical oncologist, Sujatha Rao, MD.
PATIENTS IN THE AREA NOW Will HAVE ACCESS TO INVESTIGATIONAL TREATMENTS PROVIDED LOCALLY AS DOCTORS RAO, KAO AND GRAHAM WERE ACCEPTED AS CLINICAL INVESTIGATORS IN THE CENTRAL ILLINOIS COMMUNITY CLINICAL ONCOLOGY PROGRAM OF THE NATIONAL CANCER INSTITUTE.
COMMITMENT [cont’d]
This mission is shared by fellow oncologist, Dr. Cuartas, who has been described by colleagues as a gentle and much-loved doctor. Victoria Johnson, a 42 year old Zeigler resident who is undergoing treatment for breast cancer, is under the care of Dr. Cuartas. “Dr. Cuartas is wonderful,” she said. “He sits down with you. He explains everything. It doesn’t matter how long it takes him, he will sit down and go over every step, every CT scan, every X-ray you’ve ever been through. He is the kindest person you’ve ever met. Just wonderful, and I love his attitude. Johnson said she even encourages her colleagues at work to come and visit the doctor’s office, because in her words, it is “just awesome.” “His staff is wonderful. I always say I’m going to the spa on Wednesdays. Actually I’m going to the cancer doctor, and it is the best atmosphere. When you walk in, the girls are always laughing, everybody has a story to tell, and it’s wonderful. Matter of fact, I’d rather be at the cancer doctor than work some days. I have never once heard one patient say they do not love coming to Dr. Cuartas’ office.”
COMMITMENT [cont’d]
Patients who have been treated by the cancer doctors at SIHCI are comforted and encouraged by the doctors’ caring attitudes and the warm, open atmosphere they encounter. Dr. Graham, who opened his practice Premier Oncology Care in Carbondale in 2009, identifies the emotional and spiritual needs of his patients as his highest priority. “I strive to create a caring experience for my patients that addresses their spiritual and emotional needs in addition to their physical needs,” he said.
SIH cancer doctors also are helping to bring the latest advancements in cancer treatment to patients in southern Illinois. New equipment and techniques available at the Institute include a da Vinci surgical robot and stereotactic radiosurgery. And patients in the Carbondale area will now have access to investigational treatments provided locally, as doctors Rao, Kao and Graham were accepted as clinical investigators into the Central Illinois Community Clinical Oncology Program (CCOP) of the National Cancer Institute. These are just a few reasons patients can put their trust in the cancer doctors of the SIH system. Dr. Kao believes the high standard of care now being offered through the Institute would not be possible without the dedication of administrators at SIH. “Much of our success,” Kao says, “is due to the ability and deep commitment of SIH senior management who are working to recruit the most accomplished specialists and allowing us to make available the latest technologies to our patients.’”
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Hearing the diagnosis of cancer is devastating. It can feel like a death sentence, and once upon a time it was. But increasingly, people who may have feared their lives were over are finding the strength to survive cancer. When Richard “Rip” Lee Pryor, 53, a Carbondale resident and retired SIUC employee, was diagnosed with multiple myeloma in May 2010, he thought there was a real possibility he would die. “I felt real bad,” Pryor said. “I didn’t know what to think when they said lesions and metastasis.”
PATIENTS SING SONGS OF HOPE
Cancer survivor Richard “Rip” Lee Pryor performs regularly at venues in the area.
But Pryor didn’t die. He went through chemotherapy with Dr. Sujatha Rao, and radiation therapy with Dr. George Kao. After that, he received a stem cell transplant at an academic institution. “At this point I’m in remission,” he said. “You know, there is no cure for the cancer, and it’s not there anymore.” Pryor is still taking chemotherapy medications daily to prevent a recurrence. He said his hope has been restored.
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Members of the Women with Hope support group, (left to right) Karen Ewing, Sharon Ricketts, Paula Clendenin and facilitator Donna Crow meet at Hunan Restaurant.
“I feel good about it,” he said. “I feel like I have a second chance. I’m gaining my strength back and I can do the things I like to do. I’m in retirement now, and I got a chance to do those things, so I’ll do them.” Pryor has a lot of gratitude toward those who treated his cancer, particularly Dr. Rao. “She’s real great, she worked wonders,” he said. “She was very knowledgeable. She is a nice lady. She took care of everything.” Pryor said he is grateful for his health and for the care he received. “I’m glad to be alive,” he said. “Thanks to God and the doctors.” For Sharon Ricketts and Paula Clendenin, good friends who have known each other for almost 45 years, strength for surviving cancer came through relationships. “We go to the same church and we have for years since I was about 14, and I’m 60,” Clendenin says, “So we’ve known each other for a long time.” The pair do everything together, including battle breast cancer. “Paula is my friend,”
Ricketts said, “And I found out not long after I’d had my surgery and was going through treatments that she had cancer.” Ricketts and Clendenin are 4-year cancer survivors from Herrin, Ill. Ricketts was diagnosed with and treated for estrogen receptor positive and HER2 positive breast cancer, and Clendenin had a lumpectomy, both in 2007. “You were in January, I was in March,” Clendenin chimes in. “So, she was my guardian angel.” Ricketts said she was extremely frightened when she first got her diagnosis because she had never been sick or hospitalized, except for giving birth. She recalled the treatment she received from the surgeon at the Breast Center, where Ricketts received her treatment. The Breast Center provides comprehensive care for all stages of breast cancer, from education through survivorship and advocacy. “She was wonderful, I mean really wonderful,” she said. “I never had a doctor that was so conscientious. She called me that night about 9:30 at night to tell me about a test I
ANNUAL CANCER REPORT 2011 24
ANNUAL CANCER REPORT 2011 25
Star Survivor Shirley McGlinn prepares to throw the first pitch at a Southern Illinois Miners Game as part of the SIHCI celebration of National Cancer Survivors Day.
CANCER DIAGNOSIS & TREATMENT QUALITY MEASURES
BREAST CANCER
LUNG CANCER, NON SMALL CELL
Five Year Overall Survival: 83.6% All NCDB Hospitals: 84.5%
Stage at Diagnosis compared to National Cancer Database: STAGE % 0 16 I 39 II 27 III 10 IV 03 Unknown 06
NCDB % 19 38 27 08 03 05
Five Year Overall Survival: Stage at Diagnosis compared to 21.5% National Cancer Database: All NCDB Hospitals: 16.7% LUNG CANCER: SMALL CELL Five Year Overall Survival: 6.8% All NCDB Hospitals: 5.7%
STAGE % I 24 II 09 III 27 IV 27 Unknown 14
NCDB % 24 07 24 35 10
Core Biopsy Rate 2009: Breast Conservation Rate 2009, Stages 0,1,2: NAPBC Standard: >50% Sentinel Node Biopsy Rate 2009, Stages 1 and 2 (of eligible cases):
90% 87% 100%
Preoperative Evaluation Documentation: NCCN Guideline Performance status: Weight loss: CT imaging: Lab values: Smoking advice: Pulmonary function: 86% Bronchoscopy: Mediastinal evaluation: PET/CT scan:
93%
93%
100% 100% 100% 100% 100% 100%
SURVIVORS’ [cont’d]
had. I can’t say enough good about her.” Ricketts said she would not have known what to do without the support she received at the Breast Center. Clendenin feels that same way about Ricketts. “You went through the treatments a little bit before me,” Clendenin says to Ricketts. “So I would say, ‘How am I going to feel? What’s going to happen?’ And she would tell me about the biopsies she had, and the first Zometa treatment—you had yours first. She had no problems with it. It made me as sick as a dog.” Both ladies laugh. “But we go to all the meetings together. We go to everything together, everything that Donna [Crow] has. And so we take turns driving to all these together, and then we sit in church and we talk about it.”
Ricketts and Clendenin point out that their relationships with each other and cancer survivors in the Women with Hope group have been essential to their recovery. Although they will tell you their doctors have been wonderful, doctors don’t share their experiences. Neither do the most supportive family members. “The women in the group can tell you so much more about what to expect,” Clendenin said. “Doctors will tell you what pills to take, and describe side effects, but only those who have been through it really know about the effects of treatment, such as joint pain and hot flashes I have suffered. These are things other women share with you. “ “Even when you are going through your treatments, the week that you have your treatments you feel
draggy and you want to sit in the recliner for a little bit more, and the food kind of makes you, ‘eh,’ you have these people you can call and talk to. “And our families have been wonderful, but they don’t realize that it doesn’t stop when the treatment stops. You still have all these fears, and no matter how much you believe in God, and you have all your friends, and you have Donna as your leader, you know, there’s still…” she looks toward Ricketts as her voice trails off. Ricketts looks back as she says, “Everybody should have someone they can get together with.”
PROSTATE CANCER
COLON CANCER
Ten Year Overall Survival: 51% All NCDB Hospitals: 48%
Five Year Overall Survival: 53.8% All NCDB Hospitals: 53.7%
Stage at Diagnosis compared to National Cancer Database: STAGE % I 01 II 78 III 03 IV 06 Unknown 12
NCDB % 02 78 08 05 08
Stage at Diagnosis compared to National Cancer Database: STAGE % 0 07 I 22 II 27 III 22 IV 14 Unknown 07
NCDB % 07 20 25 22 17 09
Adjuvant chemotherapy for node positive disease: National Quality Forum standard: NCCN Guideline Compliance – type of surgery:
100% 100% 100%
*of patients who followed up
ANNUAL CANCER REPORT 2011 26
ANNUAL CANCER REPORT 2011
MESSAGE FROM THE ADMINISTRATIVE DIRECTOR ne thing stays the same and that is change‌ so very proud of all the advances made since the launch of the SIH Cancer Institute. SIHCI affiliated physicians are deeply committed to optimizing the level of comprehensive cancer care in the region and are to be congratulated on the success of the Breast, Lung and GI Cancer Teams. The cancer care offered in this area was immediately enhanced by bringing together the expertise of local physicians, SIH hospitals and facilities, academic affiliate Simmons Cancer Institute and SIHCI support programs, to ensure that each new (breast, lung, GI) cancer case is treated with the most effective therapies possible and at the highest standard of patient care. SIHCI announced formal academic affiliation with Simmons Cancer Institute at SIU School of Medicine on September 8, 2010. The affiliation allows both institutions to draw on existing strengths and build new programs, while retaining our independence and separate identities. Since then we have launched a combined case conference by video, allowing access to the expanded physician group at Simmons Cancer Institute located in Springfield. Cancer Patient Navigation has expanded to offer care coordination to lung, gastrointestinal and many more newly diagnosed cancer patients. The Clinical Trials Research Office is now opening trials, furthering the goal of offering the latest treatment options in our region. The SIH Palliative Care Program began seeing chronically ill patients within SIH facilities, focusing on quality of life and pain/symptom management. The Breast Center received full accreditation from the National Accreditation Program for Breast Centers and opened a new screening facility in Benton, offering the first digital mammography in Franklin County. So many people working toward the same goal of providing the highest quality cancer care CLOSE TO HOME. The SIH Cancer Institute and Affiliated Physicians do just that ‌while the ones you love benefit from the support and love of their family, friends and community. A sincere thank you to ALL. Jennifer L Badiu, MHSA Administrative Director, SIH Cancer Institute
references Memorial Hospital of Carbondale, Cancer Registry Data Base National Cancer DataBase, Hospital Comparison Benchmark Reports Manual for Staging of Cancer, American Joint Commission on Cancer, 6th Edition Illinois State Cancer Registry Surveillance, Epidemiology and End Results (SEER) Statistical Fact Sheets
resources American Cancer Society www.cancer.org National Comprehensive Cancer Network www.nccn.org
National Cancer Institute www.cancer.gov Commission on Cancer www.facs.org
CONTACT INFORMATION
SIH Cancer Insitute Call Center ................................... 877/ 803-1212 SIH Cancer Institute Administration ................................... 618/ 457-5200 ext 67128 Site Specific Group Conference Coordinator .............................................. ext 67134 Cancer Registry .............................................. ext 67116 SIH Cancer Institute Administrative Director .............................................. ext 67129 SIH Cancer Institute Medical Director .............................................. ext 67107 Cancer Committee Chair .............................................. ext 67107 Clinical Trials Office .............................................. ext 67133 Palliative Care Service .............................................. ext 67161 Lung/Colorectal Cancer Patient Navigator .............................................. ext 67160 Strong Survivors Exercise/Nutrition Program .............................................. ext 67133 Oncology Nursing Supervisor .............................................. ext 64863 Social Services .............................................. ext 65246 Pastoral Care .............................................. ext 65243 Nutrition Service .............................................. ext 65226 Education Department .............................................. ext 65141 Rehabilitation Department ................................... 618/ 549-0721 Radiation Oncology Department ................................... 618/ 549-0721 ext 65700 Multidisciplinary Breast Center .................................... 618/ 457-2281 Breast Health Patient Navigator .................................... 618/ 457-2281 ext 68059 Little Egypt Breast/Cervical Cancer Program .................................... 877/ 532-2271 Southern Seven Mammography Program .................................... 618/ 658-5011 Hospice of Southern Illinois ..................................... 800/ 233-1708 Physician Referral and Resource Hotline ..................................... 866/ 744-2468 American Cancer Society...................................... 618/ 998-9898 Reach to Recovery Road to Recovery Look Good Feel Better General Cancer Support Group ..................................... 618/ 942-2171 ext 35357 Ostomy Group ..................................... 618/ 942-2171 Women With Hope ..................................... 618/ 521-3915
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We are dedicated to improving the health and well being of all of the people in the communities we serve. RESPECT • Recognizing and valuing the dignity and uniqueness of each person INTEGRITY • Adhering to strong moral and ethical principles in all we do COMPASSION • Responding to the feelings and needs of each person with kindness, concern and empathy COLLABORATION • Communicating and working with others for the benefit of all STEWARDSHIP • Responsibly using, preserving and enhancing our human and material resources as a not for profit community controlled organization ACCOUNTABILITY • Holding ourselves and those around us responsible for living the values and achieving the vision of SIH QUALITY • Striving for excellence in all we do
©2011 SIHCI