Soft Tissue Tumor Radiation Oncology Program SAMPLE ONLY

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1 Your Health Matters Soft Tissue Tumor Radiation Oncology Program Helen Diller Family Comprehensive Cancer Center University of California, San Francisco SDRON0165 Created 2/11 Find a Doctor: (800) Patient Education Library:

2 Radiation Oncology Radiation Oncology Main Phone Number (415) After hours and on weekends, ask to speak to the resident on call. New Patient Consultation Appointments phone (415) fax (415) Radiation Reception Front Desk (basement level) (415) Cyberknife Machine (415) Primus B Treatment Machine (415) Oncor C Treatment Machine (415) Oncor D Treatment Machine (415) Nurse's Station phone (415) fax (415) Administrative Assistant For Dr. Gottschalk & Haas-Kogan (415) Billing Questions (415) Clinical Practice Manager (415) Other Helpful UCSF Contact Phone Numbers Main Hospital (415) Medical Records Department (415) Cancer Resource Center (415) Friend to Friend Gift Shop (415) Social Worker (415) Oncology Dietitian (415) Helpful UCSF Internet Sites UCSF Radiation Oncology UCSF Cancer Center UCSF Cancer Resource Center

3 Welcome! Thank you for choosing the UCSF Soft Tissue Tumor Radiation Oncology Program for your care. We look forward to seeing you! Our Program is based at UCSF Medical Center at Mount Zion, 1600 Divisadero St., San Francisco. Patients are seen on the basement level of the UCSF Comprehensive Cancer Center. Radiation treatments are typically delivered in our office on the basement level. Hours of Service: 7 a.m. to 5 p.m. How to contact us: For new patient appointments call (415) To speak to a nurse, call (415) during normal hours of service. After hours and on weekends, call (415) Ask for the radiation oncology doctor on call. What is Radiation Therapy? Radiation is used to treat cancer and, in some cases, non-cancerous conditions. Radiation therapy uses high-energy beams to kill cancer cells. It may be used with chemotherapy. The type of radiation and how it is applied is determined by things such as the location and stage of the cancer. The different forms of radiation can be used alone or in combination. The type of treatment chosen affects the length of treatment and whether it will be given on an outpatient or inpatient basis. Why Radiation Therapy? Radiation kills cancer cells by changing their DNA, which prevents them from reproducing. The cancer cells die when they can no longer multiply and the body naturally removes them. Healthy cells are not damaged because they can repair themselves. In addition, normal tissues are shielded as much as possible during treatment. Types of Radiation Treatments for Soft Tissue Tumors External beam radiation therapy: During external beam radiation therapy, beams of radiation in the form of X-rays are aimed at the treatment area from a machine (a linear accelerator) outside the body. These beams treat specific regions. Information from CT scans, CAT scans or a magnetic resonance imaging (MRI) may be used. Treatments may be given alone as an outpatient procedure or with surgery (intraoperative radiation therapy or IORT). Intraoperative Radiation Therapy (IORT) Sometimes patients receive radiation at the time of their surgery. During the surgery, the tumor is removed. While the patient is still under anesthesia, radiation is delivered to the area where the tumor was removed. This is done to "sterilize" the tissues around where the tumor was. 3

4 Cyberknife Cyberknife technology is a type of external beam radiation therapy. A radiation machine is placed on a robotic arm which can move in three dimensions. What should I expect? Your new patient visit At your first visit you will meet your radiation oncologist. Your doctor will review your medical records and history and do a physical exam. Then they will discuss your treatment options. You will have plenty of time to ask questions and discuss your treatment options with your doctor. Once you have agreed to a plan of care, you will sign a consent for the treatment. You will receive copies of the papers you sign. What happens before and during external beam radiation therapy? The Simulation To plan your radiation, a simulation procedure will be done (in the case of intraoperative radiation therapy, this step is skipped). A CT scan is done to show where the tumor was located. Sometimes an MRI is also done. During this visit we will take a picture of your face and place marks on your skin. The picture is taken so you are not confused with another patient. The marks on your skin help us position you for treatment. These marks will not wash off at first. We may also make a foam mold for you to lie on that will help us keep you in the same position each day. This planning visit takes about 1.5 hours. Treatment Planning The images taken during your simulation will be put into our treatment planning computer. Using computer technology, our staff will create a plan for you based on your anatomy. Your doctor prescribes the dose and location of radiation to treat your cancer. 4

5 Verification Within a week of your simulation, you will start your therapy. You will not receive a dose of radiation on the first day. This is the New Start or Dry Run day. The plan will be checked by your doctor and x-rays may be taken to confirm your placement. The radiation machine can take x-rays. Check in daily at the front desk. You may change into a hospital gown or pajama bottoms provided by the Department as needed. For your safety, please wear your shoes until you are in the treatment room and ready to put your feet up on the treatment table Daily Treatments Daily (Monday through Friday) radiation treatment begins once your treatment plan is approved. Usually, you will be treated at the same time each day. A specially trained radiation therapist will handle your treatment. The total prescribed dose is divided up into equal daily doses (fractions) and delivered each day over several weeks. This allows your healthy tissues to heal between treatments. During your treatment you will be asked to lie still on the treatment table. The area that is being treated is exposed and positioned beneath the treatment machine (linear accelerator). The treatment machine will move around your body at different angles. After each daily treatment you will be able to perform your regular activities. You can expect to be in the Radiation Oncology department for minutes each day. You do not need to be driven to and from appointments unless you prefer. Your doctor will see you weekly while you are receiving treatments. Should you have other questions or concerns in the meantime, please talk to your radiation therapists or one of our nurses. How should I expect to feel during and after radiation therapy? External beam radiation therapy is similar to having a routine x-ray. Radiation cannot be seen, smelled or felt. You may, however, experience side effects from the treatment. Generally, these do not appear until the 2nd or 3rd week of treatment. Because radiation therapy is a local treatment, side effects will only involve the area of the body where the radiation is directed. Some patients may have fatigue or skin irritation. Most of the symptoms are short-term (acute) and will go away after treatment ends. You may have persistent tanning of the skin, stiffness of the tissue or a change in texture of the skin after radiation. If you need help with your skin care during or after treatment, we are happy to guide you to products which may help your symptoms. What else do I need to know? Radiation is harmful to an unborn fetus. It can change egg and sperm production if the area being treated is near the ovaries or testes. Women should not become pregnant during treatment. If this is a consideration, please discuss this with your doctor before starting treatment. On occasion, the treatment machines go down. This can occur for a variety of reasons. If the machine s normal function is irregular, a safety feature stops the machine and treatments cannot be given. When this happens, you will either have treatment on another machine, wait until the problem is fixed or skip treatment that day. Normally you will skip a treatment only when a longer evaluation and repair time are needed. If you miss a treatment, it will be made-up so you receive the prescribed dose of radiation. Your doctor will be available to answer questions throughout your treatment. 5

6 Possible Side Effects Short-term (during and right after treatment is finished) tiredness (fatigue) and skin changes may occur. If you have fatigue, a short nap during the day may help. For patients who are working, a decrease in work hours or taking a leave of absence may be needed. Tell your doctor if the fatigue becomes severe. It is important to remain active and to eat a well-balanced diet. Our dietitian at the UCSF Cancer Resource Center can provide dietary assistance if needed. Report any skin discomfort to the radiation therapist, nurse or doctor. There are skin care products that can help with skin discomfort. Long-term (months to years down the road) radiation therapy can change the texture of the tissues. If the radiation area is near a joint, you may develop joint stiffness. It is important to keep this area mobile. Physical therapy can help. Use sun screen in the future to lower the risk of skin reactions. If the skin in the treatment area becomes dry over time, an over the counter moisturizer may help. Patients may have swelling after their surgery or radiation. A referral to a therapist can help or you may be given special stockings. Follow-up: How often will I need to see my doctor? After radiation therapy, you will return to make sure that treatment-related side effects are improving or have gone away. Your doctor will decide how often you return for follow-up visits. Ongoing followup may be ordered by your medical oncologist or surgeon (routine chest x-rays or CT scans, etc). The Health Care Team in Radiation Oncology Radiation oncologist He or she specializes in the medical use of X-rays to treat people with cancer and various other conditions. This doctor must complete four years of college, four years of medical school, one year of general medical training and four years of residency training in radiation oncology and be certified in therapeutic radiology by the American Board of Radiology. Primary nurse and advanced practice nurse Your nurse works with the radiation oncologist and radiation therapists to care for you during your treatment. He or she assists your doctor by focusing on education, assessment and symptom management and quality of life issues. Radiation oncology nurses are licensed registered nurses. Many of them have additional accreditation in oncology nursing. Advanced Practice Nurses (Clinical Nurse Specialists and Nurse Practitioners) have completed a Master s degree program. Resident Your resident, a doctor obtaining specialized training in radiation oncology, may also assist your doctor. 6

7 Radiation physicist and dosimetrist The radiation physicist has a master s degree or Ph.D. in medical physics. The physicists are responsible for the treatment machines as well as the design and implementation of complex treatment plans. Under the supervision of the physicist, the dosimetrist plans the actual treatment and calculates the dose to be delivered as prescribed by the doctor. Radiation therapists Your radiation therapists have completed two to four years of specialized training in the delivery of radiation for medical use and are certified in radiation oncology. They operate your treatment machine. Administrative assistant The administrative assistant helps your doctor schedule appointments for you and can answer your questions and direct you to the appropriate person at UCSF. He or she can help to facilitate communication with your physician or primary nurse. Social worker The social worker is available to help you and your family cope with the diagnosis and treatment of cancer. They can provide connections to helpful community resources. Resources for Sarcoma Patients Art Therapy Program Art for Recovery provides a safe environment where adults can express the intense feelings that arise in life-threatening illnesses. This is a safe haven for patients and staff to be heard, to express their feelings and find support. Projects include patient-created artwork, open studio, The Firefly project, quilts, art support groups, SPIRIT project, murals in the clinics, healing through writing and more. Contact Cynthia Perlis at (415) or cynthia.perlis@ucsfmedctr.org. Cancer Resource Center The UCSF Ida and Joseph Friend Cancer Resource Center offers a wide variety of resources which promote the wellness of our patients and promote the healing process. Located on the 1st floor of the UCSF Cancer Center, just past the Lobby. Call for more information (415) Services provided include, but not limited to: Informational services assistance with researching medical diagnoses and obtaining information, workshops, audio and video tapes, consultative planning to facilitate effective communication of your needs with your medical providers. Emotional Support Services support groups & emotional support workshops. A peer support program is available; call the Cancer Resource Center at (415)

8 General Cancer All Stages Support Group Wednesdays 5:20 6:50 Patient s only. (415) Family & Friends Support Group 2nd & 4th Thursdays, 4:00 5:15 pm. (415) Husbands & Significant Others Support Group 2nd & 4th Tuesdays, 6:30 8:00 pm. Contact (415) LGBT Support Group Lesbian, gay, bisexual, transgender support group for caregivers of persons with cancer or other life-threatening illnesses. (415) Lifestyle Enhancement Programs and Services exercise classes, meditation and guided imagery classes, nutrition counseling and workshops, writing workshops, knitting gatherings, disability and health insurance counseling sessions. Friend-to-Friend Shop The Friend to Friend Store at the UCSF Helen Diller Family Comprehensive Cancer Center is a one stop boutique for cancer patients. Shop with the assistance of trained professionals for prostheses, wigs, books on tape, jewelry and sun-protective clothing including hats. We offer patients and friends of the medical center an opportunity to provide hands-on volunteer support as sales assistants and cashiers. See products and order online: Exercise and Movement Classes Several Classes are offered through the UCSF Cancer Resource Center. Classes may include Core and More, Gentle Yoga, Healing Through Dance, and Restorative Movement. Individual exercise counseling is available. Registration and completion of a consent form are required to participate. Call for more information at (415) Nutrition Consultation Services Individual patient consultations are available by appointment with our oncology dietitian. Your physician s assistant can arrange an appointment for you. Support Groups There are many support groups offered through the Ida and Joseph Friend Cancer Resource Center. See Cancer Resource Center section. The Cancer Resource Center additionally maintains information on a variety of support groups located throughout the Bay Area. Financial Information and Assistance Radiation Oncology Billing Questions (415) American Cancer Society Limited funds are available to assist with cost of transportation and other needs. Applications for funds can be done via the assistance of our social worker. UCSF Financial Counselors Counselors available from 9:00 a.m. 3:00 p.m. to discuss your billing and payment issues. Call (415)

9 Obtaining copies of your medical records Requests for medical records must be received in writing at the Medical Records Department. A fee may be associated with obtaining your records. A copy of the medical records release/request can be obtained from the Radiation Oncology Department or by contacting the medical records department directly at (415) Symptom Management The Symptom Management Service (SMS) is a consultation service offered to improve the quality of life and care of patients treated at the UCSF Helen Diller Family Comprehensive Cancer Center. Patients can be referred to the SMS by their UCSF cancer doctor. Patients will be seen by one or more of the members of the SMS interdisciplinary team. The SMS provides treatment and counseling for both physical and emotional symptoms caused as a result of cancer. This includes treatment for pain, fatigue, depression, anxiety and spiritual distress. Treatments for these symptoms include integrated medical, psychological, social work and spiritual approaches, offered along with your regular cancer care. All SMS care is coordinated with your cancer treatments and the support of your cancer doctor. Your physician can make a referral for you to this service. Transportation If you have difficulty traveling to your radiation treatments, please let us know. There may be assistance that can be offered to you including volunteer rides through the American Cancer Society, transportation funds or through the Radiation Oncology Department itself. Our social worker can help you find the best options available. Our social worker can be reached at (415) UCSF Cancer Risk Program (Genetic Counseling Service) The Cancer Risk Program is a comprehensive genetic counseling service for families with a history of cancer and is the largest and most comprehensive genetic testing center for cancer in Northern California. Genetic counselors assess personal and family history, provide education and counseling and, when appropriate, offer genetic testing for cancer predisposition genes. Based on family history, other cancer risk factors and genetic testing results, counselors and doctors provide an individualized risk management program for each patient that includes recommendations for cancer screening and options for preventive measures. Your physician can make a referral for you. 9

10 Helpful Internet Sites for Patients with Soft Tissue Tumors American Cancer Society A patient support, research and education organization. The ACS provides educational materials in easy to understand terms. The section Talking with Your Doctor encourages open discussion and understanding your treatment options and what questions to ask. The local ACS is also an excellent source of support. American Society of Clinical Oncology Oncolgist-approved information about soft tissue tumors. Desmoid Tumor Research Foundation This foundation serves the specific needs of patients with desmoids tumors. There are educational resources, a patient listserv, links to published articles and more! Medline Plus A comprehensive website with various topics on soft tissue tumors. This website is maintained by the National Institutes of Health. There are links to videos and other materials. Some information in Spanish. National Cancer Institute (NCI) A comprehensive website for information, education, and links to clinical trials nationally as well as other resources. The website also has an excellent drug dictionary and glossary of medical terms. (English and Spanish). This website includes links to findings of recent clinical trials. PoohStrong.org This local nonprofit organization was founded to provide financial assistance to young adults diagnosed with cancer. Sarcoma Alliance A national nonprofit group based in Northern California. This group offers education, support, guidance, financial aid and more. A novel feature is the Peer-to-Peer program connecting patients with similar disease processes. SarcomaHelp.org This organization is also known as the Liddy Shriver Sarcoma Initiative. The mission of the Liddy Shriver Sarcoma Initiative is to improve the quality of life for people dealing with sarcoma. The Initiative increases public awareness of sarcoma, raises funds to award research grants, and provides support and timely information to sarcoma patients, their families, and medical professionals. These efforts are achieved through collaboration with numerous individuals and organizations that share a similar vision. There is an ongoing calendar of events related to sarcoma education, advocacy and professional meetings. The website contains more than 50 short videos on the topic of sarcoma presented by leading sarcoma specialists. 10

11 UCSF Children's Hospital Soft Tissue Sarcoma website Our own website with educational material for children with soft tissue sarcoma. There are links to other UCSF departments, staff and children's services. UCSF Department of Radiation Oncology Information about our department and services offered, contact information, patient education and physician profiles. We urge you to be selective and cautious in reading information on the Internet. Frequently the information does not apply to your specific condition or may be inaccurate or outdated. Discuss your sources of information with your physician. 11