Every journey begins with a single step. No matter where you are in your cancer journey, the step you take now may be your first to become more informed and feel more empowered to adjust to this diagnosis. Ideally, you are dealing with cancer with the support of many friends, loved ones and compassionate caregivers. Too often, people experience cancer in isolation, without financial or emotional support and with few resources to tap into. No matter what your circumstances, always keep in mind that you can always do something – even if that something just gets you through the next hour or the day. And remember, no matter where you are along the path of your survivorship, having good skills to negotiate and communicate your needs are some of your best weapons to use against cancer.

Some would say that, ideally, upon a diagnosis of cancer or other life-threatening illness, a person would be provided a patient advocate. Unfortunately our society is far from using this model. Therefore, NCCS has developed materials, programs and skill-building tools to enable individuals and their supporters to become effective self-advocates. You can think of these as your advocacy tools as you begin your journey of survivorship.

The materials and tools in this section are based on the experiences of many survivors and are intended to help you “become your own best advocate.” Cancer survivorship as defined by NCCS is an ongoing process – one that begins at diagnosis and continues for the balance of your life.

This section is designed to assist you at many points in your cancer experience. You can use it upon diagnosis or refer to it many years later. Select the topic areas that relate to your situation and refer to this section at any time and in any order you choose. Share it with a friend, colleague, family member or health professional to broaden the circle of advocates who can be helpful with your diagnosis of cancer.

Becoming a Self-Advocate

What Is Self-Advocacy and How Does It Apply To Me?

Self-advocacy does not mean that you have to wave a banner, give speeches or take to the ramparts. In the personal context, it means that you arm yourself with the tools and skills necessary to feel comfortable about asserting yourself and communicating clearly about your cancer care needs. It ultimately means that you are taking responsibility and assuming some control of your life circumstances with cancer.

Dr. Patricia Ganz, a founding member of NCCS and a respected oncologist, wrote: Knowing as much as possible about your disease, its treatments and its potential effects on your body can empower you to take charge of your health and help you make the most of your survivorship experience. It is imperative that survivors, their health care providers and other supporters become effective advocates in the current environment of rising health care costs and restrictive referral policies. Health care professionals are also experiencing ongoing pressures such as nursing shortages and restrictive reimbursement policies for health care services. These all have an adverse impact on the care we receive and the system in which it is provided. Our interdependency on one another for responsible advocacy can strengthen the health care environment in which we are treated for cancer.

Listen to the Cancer Survival Toolbox^®

Note: To download the mp3 files, right-click the Download Track link and select 'Save Target As' or 'Save Link As'.

Why is Self-Advocacy Important?

By being a proactive, educated cancer consumer/advocate, you can impact the quality of your life and the health care you receive. Ellen Stovall, cancer survivor and NCCS President and CEO and Elizabeth Johns Clark, PhD, MSW, have identified and written about some of the important reasons for self-advocacy.

• Advocacy gives you some stability and a feeling of regaining some control in your life.
• Advocacy is confidence building in the way it helps you face challenges that seem insurmountable.
• Advocacy is a way of reaching out to others. It can be as simple as asking your doctor or nurse for the name of someone to talk with who has survived your particular type of cancer.
• Advocacy can improve your quality of life.
• Advocacy for yourself may be the difference that turns feeling hopeless and helpless into feeling hopeful. Stated in another way, self-advocacy is a synonym for what some might otherwise call “control” or “empowerment.” Self-advocacy implies strength, both physical and mental. Self-advocacy requires participation in the decision-making process. Given our tremendous access to resources for information and support today, a self-advocate need not go to a medical provider and say, “What would you do,” or “I’m in your hands” or “just cure me.”
• Commitment to shared responsibility with your medical team can contribute to the goal of physical, emotional, and mental health.

Who Are Cancer Advocates?

We are all cancer advocates – ourselves, our families, friends, health care professionals, and caregivers. It is anyone taking the necessary steps to play an active role as an informed, communicative decision-maker about treatment and quality-of-life after a cancer diagnosis. It is anyone reading and using the suggestions in this handbook. It is anyone empowered by NCCS’s Cancer Survivors’ Bill of Rights. It is anyone advocating on behalf of themselves, or others, at the personal, community, state or national level. We are part of a growing constituency of people living with, through and beyond cancer.

What Role Does NCCS Play in Empowering Survivors and Promoting Self-Advocacy?

Many excellent cancer organizations play a role in advocating for individuals with cancer. Many of them also fund research, provide professional and patient education, and/or offer support services. These organizations are principally governed by physicians and professional caregivers and have a very important voice in the cancer community. NCCS prides itself on working with all of them. The origins of NCCS are different and at the same time, similar to many of the patient advocacy organizations that provide information, support and advocacy on public issues for specific types of cancer, such as breast, prostate, ovarian, lung, colorectal, leukemia and lymphoma. Most organizations that deal with specific cancers were founded by individuals (and/or their caregivers) who were diagnosed with these specific types of cancer. NCCS is one of a handful of national cancer organizations founded by individuals with all types of cancer and their caregivers and health professionals. Because we don’t focus on one type of cancer, our educational programs and publications provide general information that can apply to any type of cancer.

We develop all our programs, publications and policies from the perspective of cancer survivors and their advocates. This means that we’ve been there, having experienced cancer personally. We have learned to marry our personal experiences with cancer with the evidence that underlies good science and health policy. Next, we take the passion we feel as survivors into national forums that determine health care policy.