Guide to Cancer Survivorship Care and Resources for Cancer Patients

Introduction

This is a guide to cancer survivorship care that outlines many issues that may impact a patient throughout the cancer survivorship journey. A cancer survivor is defined from the time of diagnosis through the rest of life. The guide is separated into three phases of survivorship, and each phase features a list of needs that may arise.

● Phase 1: Treatment Planning Phase (This phase covers diagnostic tests and treatment planning.)

● Phase 2: Active Treatment Phase (This phase covers active treatment from the first treatment visit through completion.)

● Phase 3: Post Treatment Phase (This phase covers the remainder of life after treatment is completed.)

If a patient has questions or concerns about any of the topics listed in the survivorship care guide, they should be written down and discussed with the patient’s cancer care team.

Open communication with the treating physician and other members of the cancer care team is very important. It may be beneficial for the patient to recruit a family member or friend to attend appointments, and to seek out a support group or mentor to get tips on communication with healthcare providers. The American Cancer Society has created a helpful guide of questions for patients to ask healthcare providers, which is available online at: http://www.cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf.

Each phase of the cancer survivorship guide also links to a list of resources for patients. The guide serves as a table of contents for the resource lists; clicking on Phase 1, 2, or 3 of the guide will open a resource document that lists various programs and services that are available to address the topics under that phase. It may be helpful for the patient to ask a family member or friend to help the patient review the resource lists. All of the programs and services listed are no cost, reduced cost based on income, or government assistance programs unless otherwise indicated.* In addition to resources listed, patients should check with their health care provider, social worker, or patient navigator for programs and services offered through the hospital or cancer treatment center, and for local resources that may be available in addition to the resources that are included in the lists.

*Resources in the guide include non-profit organizations, foundations, government programs, and educational institutions that serve regions within Maryland and offer free, sliding scale, or government assistance services directly to patients. If a resource that meets these criteria is missing from the guide, please contact Brian Mattingly at brian.mattingly@maryland.gov.

Guide to Cancer Survivorship

***Please refer to the glossary below for a description of many of the topics listed.***

Phase 1: Treatment Planning (click to view resources)	Phase 2: Active Treatment (click to view resources)	Phase 3: Post Treatment (click to view resources)
● Physical Needs ● Routine cancer screening ● Diagnostic testing and planning for treatment ● Primary care for overall health ● Genetic testing and counseling (as indicated) ● Dental care ● Fertility preservation ● Clinical trials ● Body image ● Ability to live/function independently ● Medical Decision-Making ● Advance directives ● Hospice care (as indicated) ● Palliative care ● Second opinions ● Psychosocial Needs ● Psychological ● Spiritual ● Family support ● Intimacy ● Financial ● Wellness and Lifestyle Behaviors ● Alcohol/drug rehabilitation (rehab) ● Stopping tobacco use ● Exercise/physical activity ● Nutrition ● Stress reduction and relaxation ● Complementary and Integrative Medicine ● Rehabilitation and Physical Therapy	● Physical Needs ● Treatment side effects ● Recommended cancer screening ● Primary care for overall health ● Genetic testing and counseling (as indicated) ● Dental care ● Fertility preservation ● Clinical trials ● Body image ● Ability to live/function independently ● Medical Decision-Making ● Advance directives ● Hospice care (as indicated) ● Palliative care ● Second opinions ● Psychosocial Needs ● Psychological ● Spiritual ● Family support ● Intimacy ● Financial ● Wellness and Lifestyle Behaviors ● Alcohol/drug rehabilitation (rehab) ● Stopping tobacco use ● Exercise/physical activity ● Nutrition ● Stress reduction and relaxation ● Complementary and Integrative Medicine ● Rehabilitation and Physical Therapy	● Survivorship Care Plan and Treatment Summary ● Physical Needs ● Long-term treatment side effects ● Routine cancer screening ● Primary care for overall health ● Genetic testing and counseling (as indicated) ● Dental care ● Infertility treatment ● Clinical trials for long-term effects ● Body image ● Ability to live/function independently ● Medical Decision-Making ● Advance directives ● Hospice care (as indicated) and loss ● Palliative care ● Second opinions ● Psychosocial Needs ● Psychological ● Spiritual ● Family support ● Intimacy ● Financial ● Wellness and Lifestyle Behaviors ● Alcohol/drug rehabilitation (rehab) ● Stopping tobacco use ● Exercise/physical activity ● Nutrition ● Stress reduction and relaxation ● Complementary and Integrative Medicine ● Rehabilitation and Physical Therapy

Glossary

Advance Directive: is a written statement of a person's wishes for medical treatment, often including a living will, made to ensure those wishes are carried out if the person becomes unable to communicate them to a doctor.

Cancer Clinical Trials: are studies that are done to try to help find new ways to treat cancer, find and diagnose cancer, prevent cancer, or deal with health problems caused by cancer or cancer treatment.

Standard Medicine / Standard Medical Care: is medicine or medical care that is given to a patient by a medical doctor, physical therapist, nurse, and/or psychologist.

Complementary Medicine: is a range of medical therapies that are not thought of as standard medical care. Complementary medicine is given along with standard medicine. Examples of complementary medicine include acupuncture, massage therapy, Reiki, yoga, natural medicine, and herbal products, among others.

Integrative Medicine: Integrative medicine combines and coordinates standard medicine with complementary medicine for which there is evidence of safety and effectiveness. An example of integrative medicine is the addition of acupuncture or natural products to manage nausea and/or stress during cancer treatment.

Fertility Preservation: is the effort to help cancer patients keep their fertility (their ability to have children), since some cancer treatments may damage a patient’s fertility.

Genetic Testing: looks at the information inside a person's cells, called genes or DNA, to determine if that person has, may develop, or could pass a disease to his or her children.

Genetic Counseling: is support or advice given by a medical professional that can help patients who may be at risk for cancer to understand their personal and family history and risk for getting cancer in the future. If a patient has a high risk of cancer, genetic counseling can help the patient to decide whether he or she wants genetic testing that can look more closely at the genes that a patient was born with in order to know more about his or her cancer risk.

Hospice Care: offers supportive care to patients and families during the last months and days of life. The goal is to help patients to be comfortable and free of pain, so that they live each day as fully as possible. Pain relief medicines may be used. Hospice care can be given in many places like in a patient’s home, in hospitals, in nursing homes, and in places built especially for hospice patients. Hospice care provides support for the patient's emotional, social, and spiritual needs as well as health problems as part of treating the whole person

Intimacy: is feeling close with another person either through a friendship or partnership.

MOLST (Medical Orders for Life-Sustaining Treatment): is a medical order form that makes a patient’s health care wishes known to doctors and other health care providers (including ambulance drivers, emergency medical providers, etc.). All providers must follow these medical directions as the patient moves from one location to another.

Palliative Care: is medical care for people with serious illnesses. It is appropriate at any age and stage of illness and can be given with treatment that is meant to cure the illness; it is not limited to the end of life. Palliative care focuses on quality of life by treating the physical, emotional, social, and spiritual needs of patients and families.

Primary Care: is routine health care for many different health needs and problems, given normally by a health care provider such as a family doctor, physician’s assistant, or nurse practitioner. Primary care providers are normally the starting point for patients with an undiagnosed health problem or concern. Primary care providers can help patients to find the care that they need, and refer them to specialists as needed.

Psychological: is a term that describes the state of a person’s mind or thinking, including their emotional state.

Psychosocial: is a term that describes both social and psychological behavior and treatment. Examples of psychosocial treatment are individual counseling, family support/counseling, and financial assistance/counseling, among others.

The Center for Cancer Prevention and Control and the Maryland Cancer Collaborative would like to thank Bunny Ebling, Cindy Carter, Joan Daugherty, Tracy Orwig, Carole Sharp, Margot Spies, and Bailey Susic for the time and effort that they devoted to developing the Guide to Cancer Survivorship Care and Resources for Cancer Patients, as well as the many volunteers who provided feedback.