Agnesian Cancer Care Breast Cancer Binder


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Agnesian Cancer Care Breast Cancer Binder

  1. 1. toAgnesian CancerCare Welcome Breast Cancer
  2. 2. S u r v i v o r s h i p G u i d e CancerCare Agnesian HealthCare provides services to individuals regardless of race, creed, color, national origin, ancestry, religion, sex, sexual orientation, marital status, age, newborn status, disability or source of payment. Each individual is treated with consideration, respect and recognition of their individuality and personal needs, including the need for privacy in treatment. Each individual is entitled to the physical, social, psychological, spiritual and emotional care necessary to meet his or her needs within the framework of our philosophy and standards of care. Individuals have the right to: • Receive healthcare from providers with skills and expertise in areas of care that they request. • Be informed of the physician or healthcare provider that has overall responsibility for their care. • Expect that their own medical care plan and records, including computerized information, will be treated as confidential. • Receive an explanation of their medical treatment in a way or language that they can easily understand. A staff member will access the information in the language that the individual/family requests. • Participate in their treatment plan or plan of care and have cultural issues incorporated into decision making, when applicable. • In the event of a medical dilemma, receive information about appropriate alternatives for healthcare, services or providers. • Gain necessary information to give an informed consent prior to the start of any procedure, treatment (except in emergencies) or transfer to another facility. • The patient or the patient’s legally authorized representative shall give prior informed consent for the patient’s participation in any form of research. • Except in emergencies, the patient may not be transferred to another facility without being given a full explanation for the transfer, without provision being made for continuing care and without acceptance by the receiving institution. • Refuse care or treatment and be informed of the medical consequences. • Obtain information about their healthcare upon leaving the facility. • Request that a healthcare provider discuss their medications with them. • Request information about available financial assistance and explanation of their bill. • Have access to their medical record in accordance with Agnesian HealthCare policies and procedures. • Under the Health Insurance Portability and Accountability Act (HIPAA) of 1996, individuals have specific rights to the use and disclosure of their protected health information. (See the Agnesian HealthCare pamphlet, “Privacy Notice,” on the Health Insurance Portability and Accountability Act.) • Designate who they wish to have visit and who they wish to be informed about their healthcare. • Personal privacy (not a private room) and care in a safe setting which is free from all forms of abuse or harassment. • Have their pain managed through: - Information about pain and pain relief measures. - Staff committed to pain prevention and management. - Health professionals who respond quickly to reports of pain. • Voice concerns about quality of care. - If you or a family member have concerns about any services that you are receiving, discuss them with any associate or contact Patient Relations at (920) 926-8347. You may also contact the Division of Quality Assurance at P.O. Box 2969, Madison, WI, 53701-2969, or call their Hotline at (800) 642- 6552. - If you or a family member have concerns about any services that you are receiving while residing on the St. Agnes Hospital Transitional Care Unit or at St. Francis Home, discuss them with any associate, or contact the Board on Aging and Long Term Care at 1402 Pankratz Street, Suite 111, Madison, WI 53704-4001, or call (800) 815-0015; or the Bureau of Assisted Living, 1325 South Broadway, DePere, WI, 54115, or call (920) 983-3200. - Updates for this information can be received through the Division of Quality Assurance (DQA) newsletter, which is sent out on a regular basis through the DQA listing. Patients’Rights&Responsibilities 3
  3. 3. S u r v i v o r s h i p G u i d e CancerCare - In addition, the Joint Commission conducts a periodic review of Agnesian HealthCare. Join Commission standards deal with organizational quality of care issues and the safety of the environment in which care is provided. Anyone believing that he or she has pertinent and valid concerns about such matters may contact the Office of Quality Monitoring, Organization Liaison, Joint Commission, One Renaissance Boulevard, Oakbrook Terrace, IL, 60181, or call (800) 994-6610. Individuals have the responsibility to: • Provide accurate and complete information about their health history and cooperate with their treatment. • Request clarification on care or treatment if not understood. • Report changes in their medical condition. • Be respectful of other individuals, staff and property. • Keep appointments reliably and promptly, or notify the appropriate department when unable to do so. • Accept their actions if they refuse treatment or do not follow medical instruction. • Provide an accurate name, date of birth, address, phone number, responsible party and insurance information. • Assure that financial obligations are fulfilled as promptly as possible. • In regard to pain management: - Ask their healthcare provider what to expect in regard to pain and pain management. - Discuss pain relief options with their healthcare provider. - Work with their healthcare provider to develop a pain management plan. - Ask for pain relief when pain first begins. - Inform their healthcare provider if their pain is not relieved. • Tell their healthcare provider about any worries they have about taking medications or following a treatment plan. Patients’Rights&Responsibilities 4
  4. 4. S u r v i v o r s h i p G u i d e CancerCare We are Committed to Patient Safety! Patient safety is part of the Agnesian HealthCare culture. We address patient safety issues through use of best practices, improved technology and increased patient involvement. Our goal is to make you feel secure about your care. Every one of our associates is dedicated to: • Providing you with a safe, healthy and secure environment. • Performing their jobs carefully and competently. • Using safe and effective practices and technologies. • Responding to your wants and needs in a timely manner. • Ensuring timely communications between caregivers and patients by answering questions about your treatment and your health, providing you with specific information about your care and explaining changes about your treatment. • We promise to be honest with you if a safety-related issue occurs. Plan for Your Questions We want to ensure that all of your questions are answered about your care. Please use this space to write down your questions. Then, when you meet with your healthcare providers, you can discuss each question to ensure that you fully understand your treatment options and get all of your questions answered. __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ __________________________________________________________________________________________ SpeakUp&AskQuestions 5
  5. 5. S u r v i v o r s h i p G u i d e CancerCare How to Be An Active Member of Your Health Team 1. The single most important way you can help prevent errors is to be an active member of your healthcare team. 2. Identify yourself. Make sure all associates check your identity (name and birthdate) before any tests or procedures. 3. Make sure that all of your physicians and other healthcare providers know about all medications or dietary supplements - such as vitamins and herbs - that you are taking. 4. Be sure that your caregivers know about any allergies and/or adverse reactions you have had to medicines. 5. When your physician or other healthcare provider writes a prescription, make sure you can read it. 6. Ask for information about your medications in terms you can understand (both when your medications are prescribed and when you receive them). • What is it for? • How am I supposed to take it and for how long? • What side effects are likely? • What do I do if I have side effects? • Is this medication safe to take with other medicines and dietary supplements I am taking? • What food, drink or activities should I avoid while taking this medicine? 7. Help prevent the spread of infection. • Hand washing is the best way to prevent the spread of infections. • Ask friends and relatives who may have contagious symptoms not to visit you. 8. If you have a test, do not assume that no news is good news. Follow up with your provider. Ask what the results mean for your continued care. 9. Feel free to speak up if you have questions or concerns. It is OK to ask questions and expect answers you can understand. Our goal is to provide safe, quality healthcare the right way, with the best possible results. SpeakUp&AskQuestions 6
  6. 6. Staff only: q Verified identity Agnesian eHealth Registration Form Agnesian eHealth Your on-line health management resource Benefits of Using Agnesian eHealth Here are some of the benefits of using Agnesian eHealth. You can: • View your medications; allergies; immunizations; surgeries and procedures; and a list of health issues • View your laboratory results • Request appointments • Request a medication refill from your healthcare provider • Manage your health profile How to Register for Agnesian eHealth Upon receiving your registration form, we will enter your information into Agnesian eHealth and set up your account. You will receive a secure e-mail welcome invitation from Agnesian eHealth within two business days. What is Agnesian eHealth? Agnesian eHealth is your personal on-line view into the electronic health record that your Agnesian HealthCare providers use to manage and document your care. It is a free web-based tool that allows you to access your records anytime and anywhere you have an Internet connection. Is Agnesian eHealth Secure? Protecting the privacy of our patients’ health information is very important to us, so we have made this process very secure. Agnesian eHealth is a confidential site that provides individuals with the ability to privately view, store and share health information including medications, allergies, immunizations and select laboratory results. E-mail address:________________________________ Challenge question (please select one and answer below): q What are the last four digits of your social security number? q In what year was your mother born? q In what year did you graduate high school? q In what year did you get married? q In what year were you born? Challenge answer:______________________________ Complete this registration form and give it to a receptionist, nurse or provider. You may also drop it off at any hospital Admitting department or at the Agnesian HealthCare Information Desk on our main campus, 430 E. Division Street, Fond du Lac. Please bring a photo ID when returning the registration form. Patient’s name:__________________________________ Date of birth:____________________________________ Agnesian HealthCare is Sponsored by the Congregation of Sisters of St. Agnes
  7. 7. S u r v i v o r s h i p G u i d e CancerCare Welcome to the Agnesian Cancer Center. Choosing a treatment facility for your cancer care is a serious and thoughtful decision. It means placing your trust in a group of professionals during one of the most challenging and uncertain times in your life. Everyone with the Agnesian Cancer Center understands this responsibility. It is a commitment that we take very seriously. That’s why we have spent a great deal talking about how we can ensure that you will receive the very best breast cancer care available. To us, the very best cancer care means having access to national and local research studies, and attracting the most talented and compassionate physicians, specialists and associates available. However, here is something more; we see our role as a partner in your cancer care. We have the responsibility to provide you with the most accurate, up-to-date and understandable information about breast cancer. Learning all that you can about breast cancer is one way to feel a better sense of control during your treatment. That’s part of what this booklet is all about. We have collected and organized what we think is valuable information on cancer. Some of it you will find helpful and other sections you may never need. We invite you to add to the binder. Bring it along to your appointments, write in it, let us know what your experience has been like with us, or let us know if there are other ways we can best meet your needs. Once again, thank you for placing your trust in all of us at the Agnesian Cancer Center. We wish you strength, courage and hope. The associates and physicians at Agnesian Cancer Care The goal of the Agnesian Cancer Care team is to provide the highest quality compassionate care to all of our patients. Often bonds and relationships form over the course of visits, and patients often become part of the cancer services “family.” At times, patients and their families like to present gifts to staff to express these relationships. We ask that patients and families show their appreciation by verbal or written means instead of physical gifts. There are many patients and so little room! We hope you understand and thank you. Welcome 9
  8. 8. Your Breast Health Coordinator team serving Ripon Medical Center, St. Agnes Hospital and Waupun Memorial Hospital provides a continuum of care when you need an advocate and additional support. Breast Health Coordinators • Help answer questions • Accompany women during procedure • Give updates • Provide comfort, empathy and compassion We’re here to work one-on-one with you as you navigate through your healthcare journey. Please be prepared as your breast health coordinator will be contacting you shortly to answer any of your questions and discuss further arrangements. If you have any questions now, contact us at (920) 748-0495 for Ripon Medical Center, (920) 926-5570 for St. Agnes Hospital, or (920) 324-6547 for Waupun Memorial Hospital. We’re in this together Lisa Michels, APNP Kay Groeschl, RN Stephanie Ditter, RN Patti Domask, RN Breast Health Coordinator Team
  9. 9. S u r v i v o r s h i p G u i d e CancerCare Lumpectomyvs.Mastectomy While most breast cancers can be treated with a lumpectomy, it is important to understand that the lifetime risk of recurrence of breast cancer in a patient that has undergone a lumpectomy with radiation is equal to that of a patient who had a mastectomy. A lumpectomy is a breast-conserving surgery to remove an area of breast cancer. During surgery, the surgeon will remove the area of concern. If the area to be removed cannot be felt by your surgeon, a radiologist in the Women’s Imaging department (mammography) will insert a wire into the breast that acts as a guide for your surgeon. The radiologist will numb the area with local anesthesia and then insert the wire under mammography. This procedure takes about 30 minutes. The surgeon needs to remove enough tissue with margins clear of any cancer cells. If you have a lumpectomy, radiation to the breast will also be recommended. Radiation is usually given daily, Monday through Friday for an average of six weeks. If you do not wish to receive radiation, a mastectomy may be recommended by your surgeon. A mastectomy is the removal of the entire breast, usually done after a diagnosis of breast cancer. Agnesian HealthCare does have a plastic surgeon on staff that would be happy to discuss reconstruction options with you. If your surgeon decides that your lymph nodes need to be checked for cancer, a sentinel lymph node biopsy will also be performed. This procedure is done at the same time as your breast surgery. A radioactive isotope is injected into the breast an hour or more prior to surgery. This material will travel to the lymph nodes as they are the first (sentinel) nodes to drain the breast. A separate incision will be made in the armpit of the affected side. Anywhere from one to four nodes are usually removed and sent for testing. The pathology of the lymph nodes will help to determine further treatment. 11
  10. 10. S u r v i v o r s h i p G u i d e CancerCare NutritionDuringCancerTreatment Why Is Good Nutrition Important? Good nutrition is always important for staying healthy and preventing disease. However, following a good diet is also key in maintaining health and weight when someone has cancer and is going through treatment. Proper nutrition helps the body fight infections by strengthening the body’s natural defense system, or immune system. People with cancer are often at risk for getting infections because the immune system is weakened by certain medications and treatments. A healthy diet helps people keep their strength by preventing body tissues from breaking down. It also helps repair damaged tissue, which helps patients maintain their weight. Those who eat well during treatments are able to cope better with the side effects of treatment. Side effects may be fewer or less severe when the patient is well nourished. Also, higher doses of radiation and chemotherapy are usually better tolerated. What Foods are Needed for Good Health? Achieving good nutrition status in people with cancer means getting enough calories and protein to prevent weight loss, regain strength and rebuild healthy tissues. The following nutrients are very important for maintaining best health during treatment: Protein • Helps to repair body tissue and maintain a healthy immune system. • People with cancer usually need additional protein, especially following surgery, chemotherapy and radiation therapy. • Good sources of protein include meat, fish, poultry, dairy products, nuts, beans, lentils and soy. Carbohydrates and Fats • Helps to supply the body with the majority of calories it needs, allowing you to feel energized throughout the day. • Good sources include fruits, vegetables, whole grains, pasta, cereals, beans and peas. • Good sources of fat include olive oils, nuts avocados, fatty fish (tuna, salmon). Vitamins and Minerals • Helps to ensure proper growth and development. • Allows the body to use the energy in foods. • Eating a well-balanced diet with enough protein and calories usually contain plenty of vitamins and minerals. Eat a variety! Water • Provides the environment where all other nutrients can function properly. • Drinking plenty of water throughout the day ensures proper hydration and helps you feel your best. Aim to drink at least eight glasses of water each day. General Eating Tips • Choose many different foods that you like to eat, this way you won’t get bored. • Try smaller, more frequent meals. This will give you energy throughout the day. • Keep nutritious, easy-to-make snacks available. Focus on foods that require little to prepare and eat. • Make all calories count. Don’t fill up on items that give you very few calories (broth, coffee, sodas). Choose foods higher in protein and calories. • Take advantage of the “up” times, when you are feeling your best...Eat! Eat foods that agree with you. Eat foods that you enjoy. • Prepare foods in larger quantities and freeze the extras for times when you can’t or don’t feel like cooking. 13
  11. 11. S u r v i v o r s h i p G u i d e CancerCare NutritionDuringCancerTreatment • Allow friends and family to prepare meals for you. Don’t hesitate to accept their offers of help with shopping and meal preparation. • Give food a chance. What is unappealing one day, may taste good on another. • Be creative, try new recipes. • Discuss any eating concerns with your dietitian, healthcare provide or nurse. They are your best sources of information about your diet. (Handout adapted from ADA Nutrition Care Manual, 11/2011; for use at the Agnesian Cancer Center) 14
  12. 12. S u r v i v o r s h i p G u i d e CancerCare CancerExerciseProgram Exercise and the Cancer Patient Cancer patients can experience loss of physical strength when they are treated for cancer. In the past, patients were told to rest and not exercise. Today’s research has shown that cancer patients who join exercise programs have improved strength and better success with their treatment. The benefits of regular exercise during and after cancer treatment include: improved balance with less falls; prevention of muscle loss; improved blood flow to the legs; improved self esteem; less anxiety and depression; and decreased symptoms of tiredness, inability to sleep, constipation, vomiting and pain. Exercise, good nutrition and weight control have also been shown to prevent breast cancer reoccurrence. The Agnesian Cancer Center’s cancer exercise program is created to meet each cancer patient’s individual needs. Therefore, each exercise plan is designed for the patient’s type of cancer and treatment program. Cancer Exercise Program This cancer exercise program is for patients currently in treatment and/or following completion of treatment at the Agnesian Cancer Center or within Agnesian HealthCare. An Agnesian HealthCare physical therapy assistant who has completed training and certification as a cancer exercise specialist will teach the exercise program. How to Begin Upon referral (from an Agnesian HealthCare surgeon, medical oncologist or radiation oncologist), the patient will receive an individualized evaluation with the cancer exercise specialist. An exercise plan will be designed based on surgical history and medical limitations. Individuals will meet weekly in a group setting at the Agnesian Cancer Center with other cancer patients. There will be two exercise program groups. One group will be for lower-level activity patients and the other group for medium- level activity patients. The cancer exercise specialist will assign each patient into the appropriate exercise group. After six to eight weeks, participants can begin to exercise at home or in a community exercise program. Program Goals 1. Create a successful exercise program that can eventually continue as a home exercise program. 2. Increase participant’s range of motion and strength. 3. Reduce symptoms of cancer treatment. 4. Decrease recovery time after cancer treatment. 5. Help cancer survivors live an independent lifestyle by working through limitations from surgery, chemotherapy and/or radiation therapy. Charges The cancer exercise program is free for patients receiving cancer care within Agnesian HealthCare. It is part of the many oncology services we provide, which also include nutrition, chaplain and social work services. For More Information For more information about the cancer exercise program, contact the Agnesian Cancer Center at (920) 926-4100. 15
  13. 13. S u r v i v o r s h i p G u i d e CancerCare WhatIsLymphedema? Women who have been treated for breast cancer may be at risk for lymphedema or arm swelling. Check with your physician regarding your need to take lymphedema precautions. Lymphedema is the chronic swelling of a part of the body (most often an arm or leg). The swelling is caused by a permanent deficiency of the lymphatic system. The lymphatic system is responsible for fighting off infection and collecting extra fluid and proteins that pool outside of the blood flow. Once the fluid is collected, it is returned back to the heart to be pumped through the organs and eventually filtered out of the body. The lymphatic system is a thin net lying just under our skin with fingers that go deep into the body to cover every area except the brain and placenta. These fingers have valves that are like one-way doors which prevent lymph fluid from flowing back. Lymphatics do not have a pump of their own to suck fluid into their valves. Instead, they rely on muscle contraction or massage to change pressure and open their valves. Fluid in the lymphatics is pumped through lymph nodes. There are over 600 lymph nodes in the body. The job of lymph nodes is to filter out bacteria and prevent it from entering the blood stream. Lymph nodes are also like the dam of the lymphatic system. They can slow down lymphatic flow 100 times if they are not working, or they can speed up lymphatic flow 100 times if they are working. There are two types of lymphedema. The first type is primary lymphedema. It is a disorder that people are born with. There is a deficit in the number or size of lymph nodes or pathways. The second type of lymphedema is secondary lymphedema. It is caused by surgical removal of or damage to lymph nodes or lymphatic structures. This type of lymphedema can occur with a mastectomy, prostate surgery, radiation treatments, trauma to the body or surgical scaring. Some other causes of lymphedema can include venous insufficiency, benign or malignant growths blocking the lymphatics, paralysis and excessive amounts of fat deposited in the legs and buttocks. Often times when the lymphatic system has been damaged, it will develop new lymphatic pathways on its own and lymphedema does not occur. However, in about 25 percent of cases, people may develop lymphedema months or years after the damage has been done. This is usually initiated by a new injury or infection to the compromised area. When this happens, the body naturally sends extra protein rich fluid to help heal the damaged tissue. The lymphatic system is then overloaded. As a result, the removal of extra fluid is then slowed down and the extremity swells and hardens. Some of the limitations that may occur with lymphedema may include decreased movement in the affected extremity, decreased sensation or a feeling of tightness in the affected extremity and recurrent infections in the affected extremity. Although lymphedema can not be cured, there is an effective treatment which reduces swelling, prevents it from getting worse and limits the risk of infection. Seeking and getting treatment early should lead to a shorter course of treatment and allow you to control your lymphedema and manage it effectively. 16
  14. 14. S u r v i v o r s h i p G u i d e CancerCare PreventingLymphedemaExacerbation 1. Keep the affected extremity spotlessly clean. Be sure underclothes and compression garments are regularly washed. 2. Avoid any trauma (knocks, cuts, sunburn, insect bites). Use caution cutting fingernails. An injury can allow bacteria to enter and lead to infection. 3. Avoid burns. Never allow the affected limb to become sunburned. Always use sun cream SPF15 or higher. Try to stay out of the sun during the hottest part of the day. Most compression garments do not protect you against sunburn. Avoid oil splash burns from frying and steam burns from microwave foods or boiling liquid. Use oven mitts. 4. Keep the limb as cool as possible in hot weather. Be careful of water temperatures in the shower and spa. 5. Avoid muscle strains. Exercise regularly, but do not overtire your arm. Avoid strenuous exercise like weight lifting or tennis. Do not pick up heavy loads with an arm at risk. Use your unaffected arm or both arms as much as possible to carry heavy packages such as groceries, handbags or children. 6. Any redness (infection) should be treated at once. Call your doctor for antibiotics. 7. Keep the skin moist and soft. Use lotions with low Ph and no perfume. Alcohol will dry the skin and perfume can cause rash. 8. Do NOT allow ANYONE to measure blood pressure, take blood or give an injection in the at risk extremity. 9. To remove hair, use a properly maintained electric razor. Replace razor heads as needed. Do not use safety razors. 10. If travelling by air, it is a good precaution to wear a compression garment or bandages. The pressure changes in an airplane can cause your affected extremity to swell. 11. Brassieres should not be too tight around the ribs or over the shoulders. A wide shoulder strap is recommended or place foam padding under the strap. 12. Avoid wearing tight jewelry. 17
  15. 15. S u r v i v o r s h i p G u i d e CancerCare ClinicalTrials About Clinical Trials Clinical trials are research studies that evaluate new treatments and help find ways to improve cancer care. Clinical trials play an important role in the battle against the disease and offer another treatment option for patients who qualify. What Clinical Trials are Used For New drugs and therapies are continually being developed in the field of cancer. After they show promise in other studies, providers need to know if they are considered standard of care. Offering clinical trials allows researchers to compare one treatment plan versus another. Clinical trials are offered in four phases. The Agnesian Cancer Center primarily offers Phase III clinical trials, which occur after there is documented promising activity in Phase I and Phase II trials. Patient Benefits • Potential to receive state-of-the-art treatment before it becomes standard of care. • Patients receive the newest treatment. • Patients are closely monitored by a research team that is part of a network of providers. • Eliminates the need to travel out of this area to take part in a clinical trial. The Agnesian Cancer Center is affiliated with the Alliance for Clinical Trials in Oncology. The Alliance for Clinical Trials in Oncology is a combination of three national cancer clinical research cooperative groups: The American College of Surgeons Oncology Group (ACOSOG), Cancer and Leukemia Group B (CALGB) and the North Central Cancer Treatment Group (NCCTG), which are National Cancer Institute (NCI)-funded. The Alliance for Clinical Trials in Oncology provides us with high quality multidisciplinary cancer control, prevention and treatment trials that engage a comprehensive research network. For more information on cancer clinical trials, call the Agnesian Cancer Center at (920) 926-4100 or visit 19
  16. 16. S u r v i v o r s h i p G u i d e CancerCare CancerGeneticRiskAssessmentServices What are Cancer Genetic Risk Assessment Services? Sometimes hereditary or genetic factors can increase your risk for cancer. Agnesian HealthCare’s Cancer Genetic Risk Assessment Services are designed to help you understand more about your personal cancer risks. Agnesian HealthCare offers a comprehensive cancer risk assessment that focuses on personal and family history, environmental and lifestyle factors and genetics. The assessment evaluation, which includes counseling services, is directed toward individuals and families who may be at an increased risk for hereditary cancer. The consultative services are provided by a nurse practitioner (who works in coordination with medical oncologists) with advanced education in cancer genetics, hereditary cancer patterns and genetic testing resources. An initial visit is usually 60 to 90 minutes in length and includes: • Assessment based on personal, medical and/or cancer history. • Risk assessment using computer-generated risk models. • In-depth review of family history of cancer for hereditary patterns. • Identification and coordination of genetic testing services if available and appropriate. • Discussion of cancer genetics research programs if available and appropriate. Additional follow-up visits are usually 30 to 60 minutes in length and include: • Disclosure and discussion of any genetic testing results. • Recommendations for strategies to decrease cancer risk. • Coordination of specialty physician referrals as appropriate. What are the Key Indicators of Hereditary Cancer? Although many cancers occur by chance or through exposure to known cancer causing agents, sometimes hereditary or genetic factors can increase an individual’s risk for cancer. These genes can come from either side of the family and often follow hereditary patterns such as: • Cancer at a younger age than average. • Multiple generations of cancer in a family. • The same type of cancer in two or more close relatives. • More than one type of cancer in the same person. • Cancer that occurs in both paired organs (cancer in both breasts). • Breast and ovarian cancer on same side of family. • Colon and uterine cancer on same side of family. Who Might Benefit From a Cancer Risk Assessment? • Anyone with a family history of cancer that would like to take steps to decrease their risk of developing cancer. • People who have had cancer who would like to learn steps to reduce the risk of their cancer coming back or of developing a new cancer. • Anyone with a known genetic change (mutation) in his/her family. What is Genetic Testing for Cancer Risk? Genetic testing for cancer risk is used to determine if a genetic change (mutation) is present in genes that increase a person’s risk of developing cancer. • Cancer genetic testing is a benefit under many insurance plans including Medicare. • When testing is available, recommendations are based on personal and family cancer history. 20
  17. 17. S u r v i v o r s h i p G u i d e CancerCare CancerGeneticRiskAssessmentServices Am I Required to Have Genetic Testing as Part of Cancer Risk Assessment? No. When available and recommended, cancer genetic testing is voluntary and only completed following genetic counseling and written informed consent. How Do I Schedule an Appointment? Cancer Genetic Risk Assessment Services are provided at the Agnesian Cancer Center. For more information or to schedule an appointment, call (920) 926-4100. No referral is required. 21
  18. 18. S u r v i v o r s h i p G u i d e CancerCare BreastCancerResources American Cancer Society Phone: (800) ACS-2345 Web site: National Cancer Institute Phone: (800) 4-CANCER Web site: and Susan G. Komen Breast Cancer Foundation Web site: National Comprehensive Cancer Network Phone: (888) 909-NCCN Web site: Y-Me National Breast Cancer Organization Phone: (800) 221-2141 (English) Phone: (800) 986-9505 (Spanish) Web site: People Living With Cancer (ASCO web site) Phone: (888) 651-3038 Web site: 23
  19. 19. S u r v i v o r s h i p G u i d e CancerCare BreastCancerSupportGroup A Free Program For Women Touched With Breast Cancer Third Tuesday of each month except July and December 6:30 to 7:30 p.m. Agnesian HealthCare Fitness Center Meeting Room (located on the Plaza Level) 430 E. Division Street, Fond du Lac Any woman who has experienced breast cancer is invited to meet with others touched with the disease, survivors and those currently in active treatment, to share their concerns, enjoy each other’s company or just listen. For more information or to register for this free program, call Stephanie Ditter, RN, BSN, or Kay Groeschl, RN, BSN, Agnesian HealthCare Breast Health Coordinators at (920) 926-4116. 24
  20. 20. S u r v i v o r s h i p G u i d e CancerCare SupportServicesAvailable Our social worker is part of the team of associates available to help you and your family along the way as needed. Some of the issues the social worker can assist with include: • Financial and insurance concerns • Medication assistance programs • Supportive counseling • Referrals to counseling and support groups • Health Care Power of Attorney documents • Disability forms through your employer and/or social security • Referrals to county agencies that may provide help to you • Transportation • Durable medical equipment supplies • Locating other resources that may be helpful to you Agnesian HealthCare Resources Agnesian Health Shoppe (920) 926-5277 327 Winnebago Drive, Fond du Lac Items for sale and services available include: • Durable medical equipment such as wheelchairs, walkers, canes, hospital beds, bathtub and toilet safety items • Wigs, scarves, breast prosthetics, mastectomy bras and swimsuits • Home oxygen services • Lifeline emergency alert service Home Care (920) 923-7950 239 Trowbridge Drive, Fond du Lac Hospice Hope (920) 923-7950 239 Trowbridge Drive, Fond du Lac 745 South Street, Green Lake Hospice Home of Hope (920) 906-1000 400 County Road K, Fond du Lac Spiritual Care Services (920) 926-4887 430 E. Division Street, Fond du Lac Chaplains are available for visits at St. Agnes Hospital, the Agnesian Cancer Center and through hospice services. Mobile Meals (920) 926-4673 430 E. Division Street, Fond du Lac Home-delivered meals are available through St. Agnes Hospital for those who are home-bound. Meals are available Monday through Friday. Community Care and Samaritan Health Clinic (920) 926-4455 430 E. Division Street, Fond du Lac Financial assistance for medial bills and medication assistance for those who qualify. Courtesy Van Transportation (920) 926-8959 430 E. Division Street, Fond du Lac Free transportation to and from Agnesian HealthCare services; appointments based on availability. 25
  21. 21. S u r v i v o r s h i p G u i d e CancerCare SupportServicesAvailable Journeys: a health resource center (920) 926-4960 430 E. Division Street, Fond du Lac Located off the St. Agnes Hospital lobby, Journeys: a health resource center offers classes and programs including Look Good...Feel Better,® a program for female cancer patients designed to teach participants how to use make-up and offer skin care techniques to overcome the appearance-related effects of chemotherapy; meditation and yoga classes; and community education programs. In addition, Journeys offers lending library of health-related information through books, DVDs and the Internet. Lymphedema Therapy Services (920) 926-5370 430 E. Division Street, Fond du Lac Lymphedema is chronic swelling of a body part caused by damage to the lymphatic system from surgery, injury, etc. Specially-trained occupational therapists can provide the therapy and treatment needed to help manage lymphedema. If you are interested in lymphedema therapy, ask your healthcare provider for a referral. This service is provided in St. Agnes Hospital’s Outpatient Therapy department. 26
  22. 22. Wig Boutique Services 327 Winnebago Drive, Fond du Lac • (920) 926-5277 • Monday through Friday, 8 a.m. to 6 p.m. The Agnesian Health Shoppe is collaborating with the Agnesian Cancer Center to help female cancer patients enhance their appearance and self-image during chemotherapy and radiation treatments. Their efforts complement those of the Agnesian HealthCare Foundation, which is providing funding for a wig boutique at the Agnesian Cancer Center at no charge for anyone in need. The Agnesian Health Shoppe offers wig fittings in a private room for your convenience. Wigs come in many different colors, styles and lengths. Feminine scarves and hats are also available.
  23. 23. S u r v i v o r s h i p G u i d e CancerCare AmericanCancerSocietyResources We are fortunate to have a trained volunteer navigator through the American Cancer Society (ACS) right here at the Agnesian Cancer Center! Our ACS navigator is here on a regular basis to offer help and information to you and your family as you go through the cancer journey. The navigator can help you link to information on the following? • Coping with cancer • What to expect during chemotherapy and radiation • Dealing with side effects of treatment • Support groups, classes and other programs • Financial resources • Smoking cessation • Decision-making tools • Employee rights information • Transportation resources • Lodging during treatment if needed Our ACS navigator can also help you and your family by being a caring listener in your time of need. She can also help communicate your needs to the rest of your treatment team members at the Agnesian Cancer Center. If you haven’t met with the ACS navigator, please ask any associate to help you get in touch with her. The American Cancer Society has representatives available by phone 24 hours a day, seven days a week. Call (800) 227-2345 or visit the ACS web site at 28
  24. 24. S u r v i v o r s h i p G u i d e CancerCare SuggestedInternetResources Cancer Net is the patient information web site of the American Society of Clinical Oncology (ASCO). The site provides oncologist-approved information to help patients and families make informed healthcare decisions through disease and symptom-based guides and procedures. The American Cancer Society’s web site is a important extension of its mission to provide lifesaving information to the public. The site includes an interactive cancer resource center containing in depth information on every major cancer type. Through the resource center, visitors can order American Cancer Society publications, gain access to recent news articles, and find additional on-and off-line resources. This is the central web site for the National Cancer Institute (NCI). NCI is a part of the National Institutes of Health, within the United States Department of Health and Human Services. This web site offers free, credible, current and comprehensive online information about cancer prevention, diagnosis, treatment, statistics, research, clinical trials and news, as well as links to other NCI web sites. The National Comprehensive Cancer Network (NCCN) is an alliance of 20 of the world’s leading cancer centers, working together to develop treatment guidelines for most cancers and dedicated to research that improves the quality, effectiveness and efficiency of cancer care. NCCN offers a number of programs to help you and your family make informed decisions about your health. The Leukemia & Lymphoma Society is the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The society’s mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Agnesian HealthCare is a sponsor of CaringBridge, a charitable non-profit organization that provides free web sites that connect families and friends when someone is facing a serious health event. CaringBridge makes it easier to share health updates and receive messages of love and support. The National Coalition for Cancer Survivorship Patient Advocate Foundation Diagnosis - Specific Resources Bladder Cancer American Bladder Cancer Society - Brain Cancer American Brain Tumor Association - Breast Cancer Colorectal Cancer Colon Cancer Alliance - Gastrointestinal Cancer - Life Raft Group 29
  25. 25. S u r v i v o r s h i p G u i d e CancerCare SuggestedInternetResources Gynecological Cancers (ovarian, cervical) Gynecologic Cancer Foundation - Kidney Cancer Kidney Cancer Association - Leukemia and Lymphoma Liver Cancer Lung Cancer Oral Head & Neck Cancer Pancreatic Cancer Prostate Cancer Testicular Cancer The Testicular Cancer Resource Center - 30
  26. 26. S u r v i v o r s h i p G u i d e CancerCare CancerSupportGroup A Free Program For Individuals with Cancer and Those Who Care About Them Individuals and families experiencing a cancer diagnosis, and cancer survivors, are invited to learn more about cancer and meet with others to share their thoughts to help improve their confidence and sense of well-being in the midst of the physical, emotional and spiritual challenges they may be facing. Agnesian HealthCare’s Cancer Support Group meets on the Second Wednesday of each month from 4:30 to 5:30 p.m. in Agnesian HealthCare’s Journeys: a health resource center, 430 E. Division Street, Fond du Lac. Sessions begin with education presentation, followed by time for sharing and discussion. January 8, 2014 July 9, 2014 February 12, 2014 August 13, 2014 March 12, 2014 September 10, 2014 April 9, 2014 October 8, 2014 May 14, 2014 November 12, 2014 June 11, 2014 December 10, 2014 For more information on this free support group, call Kristie Martin, MSW, Agnesian Cancer Center social worker, at (920) 926-4103. 31
  27. 27. S u r v i v o r s h i p G u i d e CancerCare On-LineCaregiverSupportGroups Cancer Survivors Network Chat (American Cancer Society) The Living Room An on-line cancer support community where you can connect with others 24/7 and cover a variety of topics. Receive advice, support and offer tips to others going through similar cancer experiences. Support/Online-Support-Groups.html Cancer Compass Trade tips and strategies with other caregivers at this on- line cancer support forum. From dealing with side effects to managing pain, individuals can find a wide variety of information and resources on this site. tips/1,0,122,86.htm Welcome to Cancer Buddies Network Are you living through cancer and would like to talk to someone who understands exactly how you feel because they’ve been there too? Individuals can chat by private messaging one-to- one and safely right here on the site, or join in a lively forum and talk about the things that only those who have lived through it can really understand. http://www.cancerbuddiesnetwork. org/?gclid=COXKjfTmvq4CFVElKgodpCzjIg Patient & Caregiver Support Line The Anderson Network can match cancer patients with a survivor with the same or a similar diagnosis, treatment or experience. They can also match caregivers. For more information or to be connected with another survivor or caregiver, call (800) 345-6324 or use the on-line contact form. guide-to-md-anderson/patient-and-family-support/anderson- network/support-programs/anderson-network-support- programs-patient-caregiver-support-line.html Empowering Caregivers Family Caregivers Alliance jsp?nodeid=347 32
  28. 28. S u r v i v o r s h i p G u i d e CancerCare LookGood...FeelBetter The Look Good...Feel Better® program is a community-based, free service that teaches women beauty techniques to help restore their appearance and self-image during chemotherapy and radiation treatments. This program is a partnership between the American Cancer Society; the Cosmetic, Toiletry and Fragrance Association Foundation; and the National Cosmetology Association. Certified and licensed beauty professionals provide tips on a variety of issues women undergoing cancer treatment face, including: • Makeup • Skin care • Nail care • Head coverings Volunteer beauty professionals lead small groups, usually consisting of six to 10 women, through a practical, hands-on session. You can learn about makeup techniques, skin care, nail care and options related to hair loss such as wigs, turbans and scarves. Each participant receives a free kit of cosmetics for use during and after the workshop. If you are unable to attend a group workshop, a free, one-time, individual salon consultation with a volunteer cosmetologist may be available. These trained beauty experts will help you address your specific skin, hair and related appearance needs. Self-help materials can be obtained free of charge by request through the Look Good...Feel Better® toll-free number (800) 395-LOOK. The materials include a 30-minute video entitled, “Look Good...Feel Better Just for You,” a step-by-step instructional booklet discussing appearance-related side effects of cancer treatment, as well as skin care information. To preregister or obtain information on this program in the Fond du Lac area, call Agnesian HealthCare Journeys: a health resource center at (920) 926-4960. 33
  29. 29. Guided by volunteer cosmetologists, female cancer patients who participate in this class will learn how to use make-up and skin care techniques to overcome the appearance-related effects of chemotherapy and radiation. Class Dates Second Monday of every other month from 9 to 10 a.m. Waupun Memorial Hospital St. Francis Room 620 W. Brown Street, Waupun February 9 August 10 April 13 October 12 June 8 December 14 Fourth Tuesday of every other month from 6 to 8 p.m. (except October) Agnesian HealthCare Journeys a health resource center 430 E. Division Street, Fond du Lac February 24 August 25 April 28 October 20 June 23 December 29 For more information or to register for this free program, contact the American Cancer Society at (800) 227-2345 or Journeys at (920) 926-4960. Brought to you by the American Cancer Society and Agnesian HealthCare. Look Good…Feel Better 2 0 1 5 C O M M u n i T y S u p p O R T G R O u p
  30. 30. S u r v i v o r s h i p G u i d e CancerCare AcousticalChair Listening to music with your whole body. Agnesian HealthCare invites and encourages you to use our relaxation chair, primarily located in the St. Agnes Chapel near the Emergency Department. The chair and chapel are available for associates, individuals and families of any faith to use during their healing and relaxation journey. This relaxation or “acoustical” chair is designed to relax the body, mind and spirit. The chair is easy to use and wonderful to experience. Acoustical Chair Uses • Stress reduction • Pain management • Clinical trials: decreases anxiety, blood pressure and restlessness; improves range of motion Effect on Body Musical sound waves vibrate at a unique speed. A high-pitched tone has a fast vibrational speed. The higher the pitch, the faster the speed of the vibration; the lower the tone, the slower the vibration of the sound wave. The acoustical chair contains multiple frequencies which provide an experience more powerful than a single vibration. As the sound moves from speaker to speaker throughout the chair, you feel a ripple effect. The body feels the musical vibrations. Soothing vibrations relax tight muscles and stimulate circulation throughout the back, spine and legs, which results in relief of muscle tension and deep relaxation. Music Music with strong base tones is most effective for relaxation. The volume of the music has no effect. 35
  31. 31. S u r v i v o r s h i p G u i d e CancerCare Labyrinth A Holy Walk To walk the labyrinth is to touch God and let God touch us. It is a matter of presence and response. The labyrinth does nothing to make God more present...for God is always present. The labyrinth can make us aware of the presence of God in our lives. So be silent. Walk. Listen. Wonder. Receive God’s gifts. Go in peace on your journey. What is a Labyrinth? The presence of a labyrinth in a Christian church may be new to many people, even though it is an ancient sacred symbol. Historically, pilgrims walked them as a symbolic journey to Jerusalem. They were designed in many forms, and by the ninth century a circuitous path had developed to represent our own journeys. Our labyrinth is a copy of the most well-known labyrinth of the Middle Ages found in the Cathedral of Notre Dame de Chartres. It is composed of 11 circuits and divided into four quadrants clearly defined by a cross. At the center there is a rose-shaped area that serves as the place to stop, pray, meditate and reflect on what has been “received” on this first part of the journey. The Labyrinth is a Spiritual Tool Our lives are sacred journeys in which we encounter joy, sorrow, growth, defeat, grief, celebration and all the other experiences that challenge and transform our understanding of life. The labyrinth functions as a meditation or prayer tool to help us focus and encounter the sacredness of our changing life. The labyrinth has no dead ends or puzzles to be solved. The path in is the same path out. Walking the labyrinth is not a task, but an invitation to use our gifts of creativity, imagination and receptiveness to the holy presence in our life. The journey takes us inward to our center and then back out into the world with new insight into ourselves and God’s presence. It is not magic; it is like prayer in motion through which we may receive guidance, new questions, or simply silence and peace. Beginning Your Walk How do I walk? This is a common question. Just as prayer is individual, so is walking the labyrinth. There is no right or wrong way. Remember, this is not a task to be accomplished, but a time of reflection and openness. You may want to remove your shoes before starting, as some people like to feel the “grounding” it brings them. As you stand at the entrance, take a deep breath and allow yourself to feel surrounded by God’s presence. Relax and take the first step. The full journey may take 20 minutes or more than an hour. You may meet people on the way - let your spirits move together as you step sideways to pass. If you smile or laugh, consider it a blessing. When you reach the center, you may want to sit or stand for a while, again opening to insights that may have come. On your journey back out, you may feel very different or that nothing has changed. 36
  32. 32. S u r v i v o r s h i p G u i d e CancerCare Labyrinth You May Want to Walk the Labyrinth Because... You have a question. Take a few moments to center yourself and bring your question to mind. Where are you focusing right now? Are you questioning your work, your relationships, a loss, a major life change or your faith? As you walk the labyrinth, listen for wisdom. Be aware that it may not come as concretely as you expect. You seek inner peace. Again, take time to center yourself and bring to mind what is troubling you. Pay attention to your breathing as you inhale peace and exhale that which may be causing your frustration, anger or bitterness. You might try timing a blessing with your breathing - inhale peace then exhale a blessing on yourself, someone else or a particular situation. You want a way to commune more closely with God. Try this three-step meditation. On your journey to the center, let go of all that distracts you. Open to God’s presence and receive what comes with an open heart and mind. At the center of the labyrinth, stop and pay attention to what you have felt so far and receive it gladly. Let your spirit determine the time to leave. On your way out, know that God walks your life’s journey with you. A Few Other Suggestions A Prayer Walk Use this time to pray for yourself or someone else; to give thanks or to praise God. An Intercessory Walk Use this to offer prayer for people or needs. Perhaps pray for a particular person or situation at each turn of the journey. 37
  33. 33. Compassion, Knowledge & Respect 327 Winnebago Drive, Fond du Lac • (920) 926-5277 • Monday through Friday, 8 a.m. to 6 p.m. Let us help you through this sensitive time with all your postmastectomy needs in our private, boutique-like setting. Our compassionate, professional associates will work with you to find the right styles and sizes, and help you to feel fashionable and feminine again. Postmastectomy Products • Head coverings • Swimwear & swim forms • Scarfs • Camisoles • Feminine bras • Hats • Lingerie • Breast forms • Wigs • Lumpectomy fillers • Hair enhancements • Custom orders • Lymphedema garments (including sleeves, gauntlets, gloves and compression garments) The Agnesian Health Shoppe has a women’s health consultant and trained wig specialists on-site. We work in conjunction with an area licensed beautician to help style, trim and color wigs. We can also assist with billing and reimbursement. Let us help you today. Women’s Health Consultant Carla Witkowski Through one-on-one consultations and our private fitting rooms, Carla can assist you with any of your needs.
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  35. 35. S u r v i v o r s h i p G u i d e CancerCare Completing cancer treatments can be both exciting and scary. Many patients wonder where they now fit into the spectrum of physician visits and who is responsible for their ongoing care after treatments are done. Agnesian HealthCare offers survivorship appointments to help bridge these gaps, and define a plan for current needs and future care. Agnesian HealthCare’s cancer survivorship program is based on the premise that each survivor has a unique, individualized appointment set up with the oncology nurse practitioner. How is this different from when I see my cancer doctor? The survivorship appointment is different from a follow-up appointment with your oncologist or surgeon in the following ways: • Personalized questionnaire to address your specific needs or concerns • Customized summary of the cancer treatments you received • Recommendations for follow-up care based on your cancer diagnosis and treatments • Discussion of lifestyle recommendations and modifications Survivorship assessment and services include: • Psychological • Diet and nutrition • Exercise • Sexual health • Fatigue and sleep needs • Rehabilitation • Spiritual Survivorship appointments are available to patients at the completion of their cancer treatments. An Agnesian HealthCare associate will contact you to set up an appointment, or you may call us at any time to arrange your survivorship appointment. If you have further questions about survivorship, please call the Agnesian Cancer Center at (800) 494-2927. Survivorship: What Now? 41