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General Information
TreatmentBone Marrow and Stem Cell Transplant Program Fred Hutchinson Cancer Research Center performs approximately 400 hematopoietic cell transplants a year, including 50–60 pediatric transplants. Transplantation is available for all types of hematologic malignancies and non-malignant hematologic disorders as well as a number of solid tumors, genetic disorders, and autoimmune diseases. Active protocols exist for transplantation with bone marrow, peripheral blood stem cells, and umbilical cord blood from related as well as unrelated donors. (Umbilical cord blood, normally discarded after the delivery of a newborn, appears to have important qualities that make it good for transplantation and makes the transplanted cells less likely to attack the body of the person getting the transplant.) Hutchinson Center performs all types of donor transplants: autologous-self donor, syngeneic-identical twin donor, allogeneic-related donor, allogeneic-unrelated donor, and allogeneic-“mismatched” donor. Also performed are myeloablative and non-myeloablative transplants. We also offer mini-transplants when appropriate, using lower doses of chemotherapy and radiation prior to transplantation. Long-Term Follow-Up Program Hutchinson Center has the largest long-term follow-up program in the world, following patients long-term after transplantation and providing life-long monitoring and care of patients following a bone marrow or stem cell transplant. These services are provided through Hutchinson Center and the Seattle Cancer Care Alliance (SCCA). Hutchinson Center physicians and researchers work in partnership with a patient’s personal doctor to resolve medical problems and to gather information for research. This information is used to develop improved strategies for preventing and treating long-term effects of transplantation and to educate patients about post-transplant problems. Clinical and Research Services Clinical Long-Term Follow-Up (LTFU) services at Seattle Cancer Care Alliance (SCCA) serve patients and their doctors following bone marrow or stem cell transplant. Services include telephone consultation with doctors who are caring for transplant recipients after their return home and discussions about post-transplant problems and concerns with patients and family members. Two nurses and a nurse practitioner with expertise in LTFU care after transplantation manage telephone inquiries. These individuals meet at regular intervals with a doctor who reviews cases and makes recommendations for management of problems. For some types of problems, local patients may return to SCCA for specialized care, such as treatment for graft vs. host disease (GVHD). Patients receiving allogeneic (donor) transplants are also asked to return to the SCCA at the one-year anniversary of their transplant for special testing to review their progress. When a patient returns home after a transplant, they become part of the Fred Hutchinson Cancer Research Center's Long-Term Follow-Up Research Program. This is a life-long program of monitoring that continues for as long as the patient is willing to participate. Patients (and their doctors) are asked to complete a questionnaire at six months after transplant, at one year, and each year thereafter. Collecting data from patients and their doctors, even decades after treatment, allows Hutchinson Center researchers to learn about the long-term effects of transplant. This is most helpful in determining the best course of preventive care or treatment for current as well as future patients. It is extremely important that patients who are not having post-transplant problems participate in this program. Participation ensures that our research is more accurate and informative. Special ExpertiseSeattle Cancer Care Alliance physicians and specialists are among the best in the nation and come from many disciplines—medical oncology, surgical oncology, radiation oncology, pathology, and more. Many of the physicians are involved in research to better understand how disease occurs and translate this information into better and more effective therapies. Below are excerpts of some of the Alliance cancer-care services. Brain and Spinal Cord Cancers The mission of the neuro-oncology team is to provide the best possible patient-focused care and state-of-the-art treatment. They have an active research team that works toward developing and identifying clinical research studies, including nation-wide industry-sponsored studies and those from the National Cancer Institute. Each week, a unique group of physicians from UW Medicine and Fred Hutchinson Cancer Research Center meet to discuss neuro-oncology cases and determine the best course of treatment for each patient. Treatment is available for every type of tumor, State-of-the-art rehabilitation services are also available. The Neuro-Oncology Team uses the latest technology to diagnose and treat brain and spinal cord tumors, including Magnetic Resonance Imaging (MRI), MRI Spectroscopy, MRI Perfusion Scans, Functional MRI, Diffusion Tensor Imaging, Intra-operative Computed Tomography (CT) Scanning, Leskell Gamma Knife, LINAC (Linear Accelerator) Radiosurgery, and Clinical Research Studies. Gastrointestinal cancer At SCCA, treatment is available for gastrointestinal cancer, including cancer of the stomach, esophagus, intestine, colon, rectum, or anus as well as the liver, bile duct, gall bladder, and ampulla. Doctors at Seattle Cancer Care Alliance are working to develop new and improved treatments for gastrointestinal cancer. The treatment choices offered at SCCA include surgery, chemotherapy, and radiation therapy. Many colorectal cancer patients come to SCCA to gain access to leading-edge treatments, including those available in clinical trials. Also available is the Gastrointestinal Cancer Prevention Program, a personalized approach to cancer risk assessment, screening, and prevention for people who have a high risk of developing most types of gastrointestinal cancer (colon, small intestine, stomach, pancreas, and esophagus). Leukemia Our leukemia patients can choose from standard therapy options as well as leading-edge therapies designed from the latest research findings. Many of these therapies involve marrow and stem cell transplantation and adoptive immunotherapy techniques. Fred Hutchinson Cancer Research Center’s Bone Marrow Transplant Program is the core of the Alliance's transplant services. Working with its SCCA partners, Fred Hutchinson researchers have focused on the development of more targeted and lower toxicity therapies to treat leukemia, such as techniques using monoclonal antibodies to target high-dose radiotherapy and chemotherapy to sites of malignant disease and mini-transplantation. Lung Cancer Seattle Cancer Care Alliance (SCCA) offers leading-edge treatments and innovative therapies for primary and metastatic lung cancer. Our expert team of physicians work with the latest equipment and technologies to provide the highest quality of care available today, from accurately staging disease to having the ability to operate on locally advanced tumors that may be considered “unresectable.” Our thoracic surgeons are board-certified with special training in thoracic oncology, including VATS (video-assisted thoracic surgery) for more minimally-invasive lung surgery. Lymphoma Patients with lymphoma have access to a wide array of treatment options, ranging from standard treatment plans to clinical trials, including marrow and stem cell transplantation and more targeted therapies using monoclonal antibodies, immunotoxins, and radioimmunoconjugates. Another treatment approach is a tandem transplant where a patient first is treated with an autologous stem cell transplant followed by lower-dose chemotherapy and an allogeneic transplant. Multiple Myeloma Patients gain entry into some of the most sophisticated therapies available for multiple myeloma, including new drug therapies, chemotherapy, radiation therapies, marrow and stem cell transplantation, or more targeted therapies using radioactive isotopes. Patients also have access to a weekly clinic for special consultation and treatment with the team of physicians specializing in treating myeloma. Myelodysplastic Disorder (MDS) Patients are seen by a team of physicians who are working to identify the best approaches to treating patients with myelodysplastic disorders. Patients have access to a weekly clinic staffed by the team. Hemopiotic cell transplantation is still the most effective treatment available for many patients with MDS, but other treatment options exist. Our physicians aim to progressively identify more narrowly defined subgroups of patients with a substantially higher chance of responding to a particular therapy. Sarcoma Patients are treated by physicians who are part of one of the largest and most active sarcoma programs in the United States. These sarcoma services are a major treatment program offered through University of Washington Medical Center at SCCA. It is composed of two multidisciplinary clinics, for adults and pediatric patients. The clinics see nearly 600 new patients each year. At the clinic, patients have access to leading-edge therapies and treatments for the disease, including bone transplants. Thyroid Cancer and other Endocrine Tumors The Endocrine Neoplasia Clinic focuses on diagnosing and treating thyroid cancer, pheochromocytoma, adrenal tumors, paraganlionomas, parathyroid tumors, and endocrine-secreting pancreatic tumors. The Endocrine Neoplasia Clinic has advanced nuclear medicine techniques and participates in investigational clinical chemotherapy trials for those with advanced or poorly responsive disease. Clinic appointments for consultations and long-term follow-up are available at both facilities. Thyroid scans are available at both facilities. Nuclear medicine consultation is provided at SCCA. Surgeries are performed at UWMC. Radioiodine therapy is performed at UWMC. Gynecologic Cancer Women with a gynecological cancer are seen at the new SCCA Women’s Center, located at the SCCA Clinic. SCCA has a comprehensive range of gynecologic oncology services at the clinic for patients diagnosed with cervical, endometrial, ovarian, and other gynecological cancers. The SCCA sees about 450 new patients each year. A team of physicians, nurses, radiation oncologists, and pathologists who are experts in gynecologic cancers cares for all patients. The physicians are board certified in obstetrics and gynecological oncology, and not only do surgery but also administer chemotherapy and work very closely with the radiation oncologists in planning radiation treatment. Breast Cancer Women with breast cancer will be seen at our new Women’s Center at the SCCA Clinic. Physicians at the SCCA are well-known for their multidisciplinary approach to evaluating and treating breast cancer and for collaborating with each other and the patient to develop the best possible treatment plan. Services are individualized for each patient, combining treatment with quality of life, comfort, and resource issues for breast cancer patients. Physicians in the breast cancer group are taking a lead in the development of new therapies for treating breast cancer, including studying new drugs that may benefit patients who are on standard treatment and whose cancer recurs, as well as evaluating high-dose consolidation programs. Others are working on immunotherapy and genetic susceptibility to cancer and other common diseases. Melanoma At SCCA, patients have access to the latest therapies and treatments available for melanoma. As with other disease services at SCCA, there is a specialized melanoma clinic open for patients to receive focused care. Nurses and doctors who specialize in melanoma staff the clinic. This team meets regularly to discuss each patient case and treatment options. The team includes two of the Northwest's leading melanoma surgeons, both known for their innovative approach to treating melanoma. Also on the team is a nationally recognized expert in the field of dermatopathology, with particular expertise in the pathological diagnosis of melanoma and in the evaluation and treatment of patients with unusual or atypical moles, as well as oncologists who provide expert care in the administration of chemotherapy and immunotherapy for melanoma. Another physician specializes in the study and treatment of Merkel Cell Carcinoma (MCC), a rare and aggressive type of skin cancer. StatisticsPercent of adults treated in calendar year 2006
Adult Oncology Program, Calendar Year 2006
Fred Hutchinson Cancer Research Center/
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Multidisciplinary Teams |
Multidisciplinary teams include physicians, nurses, and social workers who specialize in pediatric cancer care. The transplant team includes an attending physician who is on Hutchinson Center's staff and is very experienced in transplantation. In addition, the patient will have a primary health care provider who will provide most of the patient’s direct care. Other team members include nurses, a social worker, child life specialist, pediatric pharmacist, and an educational support team. |
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Social Support |
Child Life specialists provide recreation therapy services and age-appropriate educational supportive therapy. A pediatric social worker interacts with the pediatric transplant patients and families throughout the transplant period (consult, transplant, long-term follow-up). The social worker provides an initial assessment, advocacy, limited counseling, and psychosocial referral coordination. The Hutch School is an accredited school program that is recognized by the Seattle Public School System. It is sponsored by Hutchinson Center, serving patient and family members of Seattle Cancer Care Alliance (SCCA) and staffed by accredited teachers. The program is designed to meet the educational needs of school-aged patients and those of the school-aged relatives of patients. The school has several components:
For more information, call the Hutch School at 206.667.1400. |
Home Health Care |
Home health care is arranged for pediatric transplant patients. |
Ages Treated |
Children of all ages are treated. |
Acceptance Criteria |
The patient must meet the inclusion criteria of open protocols or standard treatment plans. |
Cooperative Group Membership |
Children’s Oncology Group |
Average Number of Pediatric Clinical Trials |
84 |
Bone Marrow and Stem Cell Transplant Program
Fred Hutchinson Cancer Research Center performs approximately 400 transplants a year, including 50–60 pediatric transplants. Transplantation is available for all types of hematologic malignancies and non-malignant hematologic disorders as well as a number of solid tumor, genetic disorders, and autoimmune diseases. Active protocols exist for transplantation with bone marrow, peripheral blood stem cells, and umbilical cord blood from related as well as unrelated donors. (UBC, normally discarded after the delivery of a newborn, is increasingly utilized as a stem cell source for transplantation. UCB has the advantageous quality of an immature immune system, which allows it to be used for transplant, even when not fully matched to the patient, without increased risk.
Therefore, even those patients who cannot identify a standard related or unrelated donor can still get a potentially life-saving transplant with UCB.)
Hutchinson Center performs all types of donor transplants: autologous-self donor, syngeneic-identical twin donor, allogeneic-related donor, allogeneic-unrelated donor, and allogeneic-“mismatched” donor. Also performed are myeloablative and non-myeloablative transplants.
Continuing Care Chronic Graft vs. Host Disease (GVHD) Clinic
This special clinic is available to any pediatric patient at high risk to develop or who has developed clinical chronic GVHD. These pediatric patients are followed weekly at Hutchinson Center outpatient clinic and are treated according to Hutchinson Center chronic GVHD protocols or practice policies. This clinic is under the direction of Dr. Jean Sanders, who keeps in contact with the patient’s primary care community physician regarding patient management issues.
Graft vs. Host Disease
Prevention of and treatment of acute and chronic GVHD continues to be a particular area of clinical and research interest of Hutchinson Center investigators. Pediatric patients are eligible for entry into all prevention and treatment trials with novel regimens and/or agents. All patients are evaluated at approximately day 80 post-transplant for presence of or risk of chronic GVHD.
Long-Term Follow-Up
Following patients long-term, determining the problems that they encounter, and carefully evaluating children with respect to the impact of the bone marrow or stem cell transplant process on their subsequent growth and development into productive adult citizens is a special area of interest and on-going clinical research. Dr. Jean Sanders directs the pediatric long-term follow-up program. Patients may return to Seattle for a comprehensive one-week evaluation annually or have the major portions of this evaluation performed at home. The goal is to discover specific abnormalities early in order to institute treatment.
Long-term follow up care is provided to SCCA cancer survivors through Children’s ACCESS (After Cancer Care Ends Survivorship Starts) program. This program is designed to meet the unique health care needs of long-term survivors of childhood cancer and their families. It focuses on health promotion and prevention. ACCESS addresses potential risks of developing complications secondary to childhood cancer and its treatments. A variety of long-term effects have been observed that may interfere with various organ systems, psychological well-being, and quality of life. For most survivors, these late effects are not serious, but are important to monitor. With education, intervention, and empowerment, survivors can take charge of their health and manage these problems.
Pediatric Surgeons
Pediatric surgeons from all major surgical specialties are on staff at Children's Hospital. Neurosurgery, transplant surgery, and limb-salvage orthopedic surgery represent a few of these specialties that are uniquely available at Children’s Hospital. Pediatric General and Thoracic Surgeons use minimally invasive surgery whenever possible to diagnose and treat pediatric cancer. Pediatric experts in imaging, radiology, and surgery work with our pediatric pathologists to make accurate diagnoses from a minimum of tissue, reducing physical trauma and emotional distress.
Tumor resection by minimally invasive techniques such as thoracoscopy or laparoscopy is often made possible by neoadjuvant, or "up-front" chemotherapy, which can reduce tumor size. These approaches can decrease morbidity, shorten recovery, improve long-term survival, and improve the quality of life for survivors of childhood cancer.
Pediatric Bone and Soft-Tissue Sarcoma Program
The Pediatric Bone and Soft-Tissue Sarcoma Tumor Program brings high-quality care to children and adolescents with musculoskeletal tumors. Metabolic imaging methods, such as positron emission tomography (PET), have improved our ability to evaluate musculoskeletal malignancies, including their response to neoadjuvant chemotherapy. Our bone transplantation and skeletal reconstruction procedures leave patients with more function than older techniques did.
Pediatric Neuro-Oncology Program
The Pediatric Neuro-Oncology Program provides leading-edge technology to patients with brain or spinal cord tumors. A multidisciplinary pediatric cancer team provides a unified approach to cancer care in dedicated child-friendly inpatient and outpatient units. These physicians staff a weekly clinic for brain and spinal cord tumor patients. The pediatric team includes:
Functional brain mapping and electrocorticography is used when a tumor is close to language or motor areas or is causing seizures. The program also uses state-of-the-art frameless stereotactic equipment as well as microscope and laser equipment.
Radiation Therapy
Radiation therapy is available to pediatric patients through its affiliation with the University of Washington Radiation Oncology Center, which offers state-of-the-art treatment technologies including: 3-D conformal treatment planning, Gammaknife stereotactic radiosurgery, and both permanent and temporary brachytherapy implants. A board-certified pediatric radiation oncologist participates in our Tumor Boards, providing continuity of care for our patients who receive radiation therapy at the University of Washington Medical Center. I-131 radiolabeled antibody therapy is also available.
Percent of children treated in calendar year 2006
Age Range |
0-4 |
5-9 |
10-14 |
15-19 |
20+ |
Number of Cases |
88 |
78 |
121 |
214 |
0 |
Percent Treated |
24% |
23% |
30% |
34% |
0% |
Pediatric Oncology Program Calendar Year 2006
No. of Inpatient Beds |
No. of Admissions |
Average Length of Stay(days) |
No. of New Outpatients |
Total Outpatient Visits |
No. of Bone Marrow Transplants |
No. of Oncologists |
38 |
1,556 |
7.63 |
490 |
3,502 |
49 |
15 |
Clinical genetic counseling and testing services are offered through the Cancer Genetics Clinic in the Division of Medical Genetics at University of Washington Medical Center (UWMC). UW Medicine, along with Fred Hutchinson Cancer Research Center and the Children’s Hospital Regional Medical Center, form Seattle Cancer Care Alliance (SCCA). The Cancer Genetics Clinic serves patients from the Pacific Northwest region, including Alaska. The clinic is staffed by a team of genetic counselors and medical geneticists who specialize in cancer genetics, including recognized experts on the genetics of breast cancer, colon cancer, ovarian cancer, endometrial cancer, thyroid cancer, and other associated cancers. The Cancer Genetics Clinic is a comprehensive program that integrates genetic cancer risk assessment, genetic testing, and risk management counseling.
Location |
Seattle, Washington |
Head, Division of Medical Genetics |
George Stamatoyannopoulous, MD |
Manager, Cancer Genetics Clinic |
Robin Bennett, MS, CGC |
Medical Geneticists |
Gail P. Jarvik, MD, PhD |
Genetic Counselors |
Robin Bennett, MS, CGC |
Schedule Appointments |
206.598.4030 |
Community and Physician Awareness |
The genetic counselors and medical geneticists of the Cancer Genetics Clinic give education seminars for health care professionals in the Puget Sound area. More information about the Cancer Genetics Clinic can be found at http://depts.washington.edu/medgen/. |
Identify Eligible Subjects/Referral |
Although most cases of cancer are not due to inheritance of a cancer predisposition gene, certain features make an inherited cancer syndrome more likely:
Patients with concerns about their personal or family history of cancer are appropriate to refer. An appointment can be arranged by a healthcare provider or by a patient by calling 206.598.4030. |
Pre-Test Counseling and Risk Assessment |
Prior to the first visit, a personal and family history is taken by telephone. Reasonable attempts are made to confirm personal and family cancer history by reviewing medical records and obtaining death certificates.
If a hereditary cancer syndrome is suspected in a family, the availability of genetic testing and the risks and benefits of such testing is discussed. When genetic testing is indicated and a patient consents, a return visit is scheduled to discuss test results. An intervening visit may be needed for the blood draw, if insurance preauthorization is required prior to testing. |
Informed Consent Procedures |
Informed consent involves discussion of risks, benefits, and options of genetic testing. Patients who elect to proceed with genetic testing for cancer susceptibility sign a consent form designed specifically by the laboratory performing the testing. |
Confidentiality Standards |
Documentation of the patient's consultation, copies of outside records reviewed, and the patient's family history are all submitted to the University of Washington Medical Center’s main medical record. A copy of the consultation is also sent to the referring healthcare provider. If genetic testing is done, the results of testing are documented in the main record and the referring healthcare provider is notified. In compliance with the Health Information Portability and Accountability Act (HIPAA), genetic testing results and documentation of a consultation will be disclosed to a third party only with the written consent of the patient. Such records are available only through the University of Washington Medical Center Medical Records office. |
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Testing |
For those patients electing clinical testing for cancer predisposition genes, samples are only sent to licensed commercial laboratories that have been CLIA approved. |
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Available Testing |
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Test Result Interpretation |
Results from genetic testing for cancer predisposition are always discussed with the patient in person at a return visit to the Cancer Genetics Clinic. Exceptions are made only for extenuating circumstances. Results are interpreted by the physician and genetic counselor involved with the patient's consultation. Cancer risk is estimated based on the findings of the laboratory; published information about the mutation and condition, including that from database repositories; the patient's personal and family history; lifestyle factors; empiric data; and risk models such as the Claus and Gail models, when appropriate. Especially if genetic test results are abnormal, patients are strongly encouraged to share their test results with other at-risk family members. Patients are given a written summary of the importance of informing family members and a sample letter they can use to do this. |
Post-Test Counseling |
Results from genetics testing for cancer predisposition are always discussed with the patient in person at a return visit to the Cancer Genetics Clinic. Exceptions are made only for extenuating circumstances. This visit includes a discussion of the test results, the implications of the test results for the patient’s cancer risk, cancer risk to family members, pattern of inheritance when a genetic mutation is identified, and cancer risk management recommendations. A letter summarizing the details of the consultation and recommendations is sent to the patient for their records. Follow-up counseling is available as needed. |
Cancer Screening |
Individualized guidelines on cancer screening that are appropriate to the patient’s level of risk are reviewed with the patient and communicated to the referring healthcare provider. |
Medical and Surgical Management |
Patients at high risk for breast or ovarian cancer are referred to the Breast and Ovarian Cancer Prevention Program, housed at Seattle Cancer Care Alliance. In this setting, a multi-disciplinary team discusses a myriad of surveillance and treatment options, including the opportunity to enroll in clinical prevention trials, if eligible. Patients at high risk of developing other types of cancer are referred to appropriate specialists. |
Psychological and Supportive Services |
Referrals to therapists and support groups are made when appropriate. |
Members of the Division of Medical Genetics faculty conduct research in most areas of human and medical genetics and modern molecular biology. They work in a wide range of settings within UW Medicine, the Veterans Affairs Puget Sound Health Care System, and Fred Hutchinson Cancer Research Center.
Identifying New Genes |
Dr. Marshall Horwitz’s laboratory employs genetic linkage analysis and positional candidate cloning approaches to map and identify genes responsible for familial predisposition to leukemia, lymphoma, and bone marrow failure syndromes. |
Implementing Chemoprevention Trials |
Qualified patients are referred to the STAR trial. |
Other |
Carcinogenesis – A long-term interest in Dr. Wendy Raskind’s laboratory has been the study of the multistep development of human cancers, with an emphasis on the changes that take place early in carcinogenesis. Past investigations have contributed to our current understanding of the involvement of pluripotent stem cells in myelodysplastic disorders and some forms of leukemia. |
Quality Assurance |
The medical geneticists and genetic counselors are certified through either the American Board of Medical Genetics or the American Board of Genetic Counseling. Clinic cases are reviewed at weekly conferences to ensure consensus. |
Training |
The staff of the Cancer Genetics Clinic consists of providers who are specially trained and have an interest in cancer genetics. The medical geneticists and genetic counselors regularly attend continuing education seminars and conferences. The Division of Medical Genetics hosts a weekly seminar series. |
Women determined to be at high risk of developing breast and/or ovarian cancers are referred to the Breast and Ovarian Cancer Prevention Program (BOCPP) at Seattle Cancer Care Alliance (SCCA). This multi-disciplinary program works with high-risk women to individually design a management program for prevention and early detection of cancer. The team of providers includes a genetic counselor, medical oncologist, nutritionist, psychologist, oncology nurse practitioner, and gynecologic oncologist. Patients interested in genetic counseling and testing for cancer predisposition genes are first seen in the Cancer Genetics Clinic in the Division of Medical Genetics at University of Washington Medical Center.
Location |
Seattle, Washington |
Director |
Elizabeth Swisher, MD |
Manager |
Angela Jacobson, MS, CGC |
Providers |
Robin Bennett, MS, CGC |
Schedule Appointments |
206.288.6990 |
Community and Physician Awareness |
Faculty and staff are developing educational programs for providers in the Puget Sound and WAMI region. More information about the BOCPP can be found at: http://www.seattlecca.org/patientsandfamilies/adultCare/clinicalProgs/breastHealth/GeneticsClinic.htm |
Identify Eligible Subjects/Referral |
The clinic serves women who are known to be at increased risk to develop breast or ovarian cancer. This includes women who:
An appointment can be arranged by a healthcare provider or by a patient by calling 206.288.7222. |
Counseling and Risk Assessment |
Prior to the appointment, medical records are obtained and reviewed regarding the woman’s personal and, when appropriate, family history. When women come to the BOCPP, they first meet with each provider individually. A woman’s mammogram films are reviewed with her, a breast exam is done, and she is given careful instruction on breast self-exam. The range of options available to reduce the risk of cancer is discussed, including risk-reducing surgery and chemoprevention. The team also discusses all of the available methods of screening for breast and ovarian cancer, helps women develop and implement a cancer risk-reduction and screening plan, and connects them to clinical trials they are eligible for and to a high-risk cancer support group. A letter summarizing the details of the consultation and recommendations is sent to the referring healthcare provider and to the patients for their records. |
Informed Consent Procedures |
Many women are referred to clinical trials of cancer screening and prevention techniques. Participants sign the consent forms developed by the investigators. Occasionally patients are referred to cancer genetics research studies. An Institutional Review Board- (IRB) approved written informed consent is obtained in those cases. |
Confidentiality Standards |
Documentation of the patient's consultation is submitted to the main medical record, which is part of the University of Washington Medical Center system. A copy of the consultation is also sent to the referring healthcare provider. Copies of outside records are reviewed and the patient’s family history is submitted to SCCA’s paper chart. In compliance with the Health Information Portability and Accountability Act (HIPAA), documentation of a consultation and related records will be disclosed to a third party only with the written consent of the patient. Such records are available only through Seattle Cancer Care Alliance and the University of Washington Medical Center Medical Records office. |
Testing |
Clinical genetic testing is done through Cancer Genetics Clinic in the Division of Medical Genetics at the University of Washington Medical Center. |
Test Result Interpretation |
A woman’s risk of breast and ovarian cancer is estimated based on her genetic test results, published information about the mutation (when known), the patient's personal and family history, lifestyle factors, empiric data, and risk models such as the Claus and Gail models when appropriate. This risk is discussed at the patient’s appointment. If genetic test results are abnormal, patients are strongly encouraged to share their test results with other at-risk family members. |
Cancer Screening |
Women are given recommendations for frequency of breast self-exam, mammograms, and clinical breast exams; use of MRI to enhance screening; and recommendations for ovarian cancer screening. |
Medical and Surgical Management |
Women are provided with recommendations regarding chemoprevention, risk-reducing mastectomy, and oophorectomy. Women choosing to pursue these options or wanting more detail are referred to medical oncologists, breast surgeons, breast reconstruction surgeons, and gynecologic oncologists within the SCCA/UWMC system. |
Psychological & Supportive Services |
Women have access to psychiatry, psychology, and nutrition services through Seattle Cancer Care Alliance. The BOCPP has established relationships with providers in these areas who are interested in caring for high-risk women. |
Implementing Chemoprevention Trials |
Qualified patients are referred to ongoing chemoprevention trials. |
Tracking Long-Term Results of Prophylactic Surgeries, Medical Surveillance Choices, and Preventive Interventions |
The BOCPP is in the process of establishing a database to allow tracking of our patients’ outcomes. |
Other |
The BOCPP is beginning to study the success of our multi-disciplinary model of healthcare on compliance with recommendations, decreased cancer worry, perceived cancer risk, and cancer outcome. |
Training |
Joint roundtable discussions are held monthly between oncologists, surgeons, imaging specialists, and geneticists to discuss recent research findings, areas of controversy in caring for high-risk patients, etc. The providers of the BOCPP are board-eligible or board-certified in their specialty area. |
Individuals at high risk to develop gastrointestinal cancers are referred to the Gastrointestinal Cancer Prevention Program (GICPP) at the Seattle Cancer Care Alliance (SCCA). This multi-disciplinary program works with high risk patients to individually design a cancer screening and prevention plan. The team of providers includes gastroenterologists, each specializing in different hereditary GI cancers, a gynecological oncologist, a genetic counselor, and a nutritionist. Patients interested in genetic counseling and testing for the cancer predisposition genes that have not already gotten testing may be seen first in the Cancer Genetics Clinic in the Division of Medical Genetics of University of Washington Medical Center.
Location |
Seattle , WA |
Director |
William Grady, MD |
Manager |
Angela Jacobson, MS, CGC |
Providers |
William Grady, MD |
Schedule Appointments |
206.288.7222 (main) |
Community and Physician Awareness |
Faculty and staff present programs in the community about hereditary gastrointestinal cancers. Providers also frequently present at national professional meetings. More information about the GICPP can be found at www.seattlecca.org by clicking on http://www.seattlecca.org/patientsandfamilies/adultCare/clinicalProgs/GastrointestinalCancerPreventionProgram/. |
Identify Eligible Subjects/Referral |
Individuals with the following are eligible to be seen in the GICPP:
Individuals with 10 or more colon adenomas age any age |
Counseling and Risk Assessment |
Prior to the appointment, medical records are obtained and reviewed regarding the individual's personal and family history. When they come to the GICPP, the patient meets with each provider individually. The range of options available to reduce the risk of cancer is discussed, including risk-reducing surgery and chemoprevention. Screening for cancer is also discussed. At the end, the patient leaves with a cancer screening and prevention plan, and patients are connected to trials that they are eligible for. A letter summarizing the details of our consultation and our recommendations is sent to the referring healthcare provider and to the patients for their records. |
Informed Consent procedures |
Many patients are referred to clinical trials or invited to participate in our registry. They sign the consent forms developed by the investigators and approved by the Institutional Review Board (IRB). Occasionally patients are referred to cancer genetics research studies. An IRB approved written informed consent is obtained in those cases. |
Confidentiality Standards |
Documentation of the patient's consultation is submitted to the main medical record, which is part of the University of Washington Medical Center system. A copy of the consultation is also sent to the referring healthcare provider. Copies of outside records are reviewed and the patient’s family history is submitted to the SCCA’s paper chart. In compliance with the Health Information Portability and Accountability Act (HIPAA), documentation of a consultation and related records will be disclosed to a third party only with the written consent of the patient. Such records are available only through the Seattle Cancer Care Alliance and the University of Washington Medical Center Medical Records office. |
Testing |
Clinical genetic testing and other blood and radiological screening is done at both the SCCA and the Cancer Genetics Clinic at the University of Washington, Division of Medical Genetics. |
Test Result Interpretation |
An individual's cancer risks are estimated based on their genetic test results, family history, lifestyle factors, and published empiric data. The risk is discussed by all of the providers at the clinic case conference prior to meeting with the patient. With each meeting with their providers, the patient will hear a different perspective on their risk. |
Cancer Screening |
Individuals are given recommendations for frequency of colonoscopies as well as screening for extra-colonic cancers as applicable. GI cancer syndromes are associated with several extra-colonic cancers, including: uterine, small intestine, thyroid, genitourinary, ovarian, stomach, rectal, and pancreatic cancers. |
Medical and Surgical Management |
Individuals are provided with recommendations regarding chemoprevention, risk-reducing colectomy, and risk-reducing hysterectomy and oophorectomy. |
Psychological and Supportive Services |
Individuals have access to psychiatry, psychology, and nutrition services through the SCCA. The GICPP has established relationships with these providers, as well as surgical providers within the SCCA/UWMC system. |
Implementing Chemoprevention Trials |
Qualified patients are referred to ongoing chemoprevention trials. |
Tracking Long-Term Results of Prophylactic Surgeries, Medical Surveillance Choices, and Preventive Interventions |
The GICPP is in the process of establishing a registry to allow tracking of our patients’ outcomes. Trials developing new methods for the surveillance and early detection are also being conducted. These studies remain open for enrollment. We are also conducting a multi-center study that is enrolling people with a family history of esophageal adenocarcinoma and/or Barretts esophagus. |
Other |
The GICPP is beginning to study the success of our multi-disciplinary model of healthcare on compliance with recommendations, decreased cancer worry, perceived cancer risk, and cancer outcome. |
Introduction
Patients who have survived cancer and are not in active cancer treatment are referred to the Survivorship Program at the Seattle Cancer Care Alliance (SCCA). As part of the Survivorship Program, patients are given a thorough screening and health evaluation by our medical staff, professionals who have dedicated themselves to learning about and dealing with survivorship issues. Cancer survivors leave with a Survivorship Care Plan that lists all of their therapy and medical information that is pertinent to their diagnosis and any possible late effects. This Survivorship Care Plan has recommendations for the patient and their healthcare provider to keep them as healthy and as informed as possible in the future. Cancer survivors may receive information on nutrition, exercise, or counseling to help optimize their health in the years following their cancer treatment.
The Survivorship Care Plan includes a detailed summary of all diagnostic testing and treatments, as well as available evidence-based standards of care. Copies are provided to the cancer survivor’s medical oncologist and primary care physician.
Location |
Seattle, WA |
Director |
Deb Friedman, MD |
Coordinator |
Emily Jo Rajotte |
Providers |
Karen Wilkinson, ARNP |
Schedule Appointments |
Toll-free number: 866.543.4272 or 206.667.2814 |
Intake Process
Community and Physician Awareness |
Faculty and staff present programs in the community about cancer survivorship issues. Regular mailings are done to local providers, educating them about the Survivorship Program. Faculty and staff frequently present at national meetings. |
Identify Eligible Subjects/Referral |
Patients are eligible for the Survivorship Program if they:
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Counseling and Risk Assessment |
Prior to the appointment, medical records are obtained and medical staff reviews the past cancer diagnosis and treatment, current health status, and quality of life for each survivor, in order to provide them with the best recommendations to help them maintain their health.
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Informed Consent Procedures |
Many patients are referred to clinical trials and all patients are invited to participate in the Survivorship Program registry. They sign the consent forms developed by the investigators and approved by the Institutional Review Board (IRB). |
Testing
Confidentiality Standards
Documentation of the patient’s consultation is submitted to the main medical record, which is part of the University of Washington Medical Center system. A copy of the consultation is also sent to the patient’s medical oncologist and primary care physician. Copies of outside records are reviewed and submitted to the SCCA’s paper chart. In compliance with the Health Information Portability and Accountability Act (HIPAA), documentation of a consultation and related records will be disclosed to a third party only with the written consent of the patient. Such records are available only through the Seattle Cancer Care Alliance and University of Washington Medical Records office.
Post-Test Counseling and Follow-Up
Cancer Screening |
Cancer survivors leave with a Survivorship Care Plan that lists all of their therapy and medical information that is pertinent to their diagnosis and any possible late effects. This Survivorship Care Plan has recommendations for the patient and their healthcare provider to keep them as healthy and as informed as possible in the future. Cancer survivors may receive information on nutrition, exercise, or counseling to help optimize their health in the years following their cancer treatment. |
Psychological and Supportive Services |
Cancer survivors have access to psychiatry, psychology, nutrition, physical therapy and social work services through the SCCA. The Survivorship Program has established relationships with these providers, as well as other providers within the SCCA/UW system. |
Research
Tracking long-term results
The Survivorship Program is in the process of establishing a registry to allow tracking of our patient’s outcomes.
Other Components of Genetic Services
Training
The Survivorship Program has formulated internal and external advisory boards to allow on-going discussions between oncologists, surgeons, imaging specialists, primary care providers, and other medical specialists to discuss recent research findings, issues surrounding providing cancer survivorship care, etc.
Introduction
The Seattle Cancer Care Alliance (SCCA) and the Fred Hutchinson Cancer Research Center (FHCRC) have established a Cancer Prevention Clinic (CPC) to help meet these organizations’ goals to reduce suffering and death due to cancer. The CPC complements the comprehensive cancer center’s treatment and research missions by advancing the field of early detection and prevention for all malignancies.
The Cancer Prevention Clinic offers the latest medical and scientific knowledge available in combination with the most advanced surveillance and diagnostic methods. The clinic is available to anyone concerned about his or her risk of cancer.
Each clinic patient receives a comprehensive evaluation from our team of physicians trained and certified in cancer prevention and other prevention specialists, including dietitians and physical therapists. Our team works together to develop a personalized cancer risk assessment and reduction program for each client.
Location |
Seattle, WA |
Director |
Scott D. Ramsey, MD, PhD |
Coordinator |
Marian Johnson RD, MS |
Providers |
John Choe, MD, MPH |
Schedule Appointments |
Toll-free number: 206.288.7222 |
Intake Process
Community and Physician Awareness |
Faculty and staff present programs in the community about cancer prevention issues. Mailings are sent to local and regional providers, educating them about the Cancer Prevention Clinic. Faculty frequently present at national meetings. |
Identify Eligible Subjects/Referral |
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Counseling and Risk Assessment |
The CPC provides counseling services for strategies to reduce cancer risk. These services include the following: Fitness counseling: A fitness evaluation with personalized counseling for exercise and activity aimed at cancer risk reduction. Chemoprevention: Opportunities to participate in research studies evaluating new medicines and supplements for preventing oral, prostate, cervical, lung, colorectal, and breast cancers. Tobacco Cessation Counseling: Comprehensive individual and group counseling, combined with medication therapy for patients who want to quit smoking through the SCCA Smoke Free Life Program. Health Behavior change support: individualized support provided by experts in the psychology of change to promote successful adoption of risk-lowering behaviors. |
Informed Consent Procedures |
Patients are referred to clinical trials. They sign the consent forms developed by the investigators and approved by the Institutional Review Board (IRB). |
Confidentiality Standards
Documentation of the patient’s consultation is submitted to the main medical record, which is part of the University of Washington Medical Center system. A copy of the consultation is also sent to the patient’s primary care physician. Copies of outside records are reviewed and submitted to the SCCA’s paper chart. In compliance with the Health Information Portability and Accountability Act (HIPAA), documentation of a consultation and related records will be disclosed to a third party only with the written consent of the patient. Such records are available only through the Seattle Cancer Care Alliance and University of Washington Medical Records office.
Post-Test Counseling and Follow-Up
Cancer Screening |
The CPC provides all evidenced-based cancer screening tests, including same day mammography and cervical cancer screening. Colon cancer screening is scheduled in the same facility at the patient’s convenience |
Test Result Interpretation |
A woman’s risk of breast and ovarian cancer is estimated based on her genetic test results, published information about the mutation (when known), the patient's personal and family history, lifestyle factors, empiric data, and risk models such as the Claus and Gail models when appropriate. This risk is discussed at the patient’s appointment. If genetic test results are abnormal, patients are strongly encouraged to share their test results with other at-risk family members. |
Psychological and Supportive Services |
Psychology faculty experienced in behavioral health consult with CPC providers and provide direct patient counseling to support their efforts toward lasting behavior change. These faculty are also available for management of depression or anxiety disorders associated with cancer worry. |
Research
The CPC is in the process of developing an efficient research infrastructure for recruiting and conducting studies in early detection and prevention.
Other Components of Genetic Services
Training
To maintain clinical excellence and to distinguish themselves from others who provide preventive care services, CPC providers have up-to-date training in cancer prevention and early detection. This is accomplished through SCCA/FHCRC-sponsored training and certification programs, provided through in-house developed continuing medical education (CME) courses.
Last updated: 2/20/2008
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NCCN 1st Annual Forum: Innovative Diagnostics & Therapeutics in Cancer Care™ |
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