Guide to Quality Breast Cancer Care

Welcome

The National Breast Cancer Coalition Fund (NBCCF) is made up of millions of breast cancer activists nationwide. We get questions every day from breast cancer patients about their care. Everyone has the same basic question. What can I do to get quality care? This guide is our answer to that question. It is for everyone facing breast cancer and everyone who wants to help them.

This is our best advice for getting good breast cancer care. It's what we tell our families and friends. Our advice is based on:

our experiences as patients,
our work with doctors, nurses, and researchers,
our review of medical evidence,
what we know about the health care system, and most importantly,
our commitment to getting better breast cancer care for all women.

NBCCF believes that being informed can help you get better care. Patients who know more about their care choices tend to worry less and get better results.¹

The Problem
If you live in the United States, you can get excellent breast cancer care. But you could also get care that is wrong for you. This can happen even with good insurance and good doctors. Some breast cancer patients get very poor care. NBCCF is fighting for a better system. But for now, you need tips for getting care that is right for you.

Quality Breast Cancer Care: NBCCF's Vision
What does Quality Breast Cancer Care really mean? You hear the word "quality" often. But it means different things to different people.

Doctors and hospitals describe quality health care in a confusing way. They call it "the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional medical knowledge."² Others say what quality is not. They might describe it as:

too much care (such as unneeded tests or drugs),
too little care (such as not getting surgery you need), or
the wrong care (such as mistakes or care not based on evidence).

But what about the patient's point of view? Of course you need the right treatment and drugs at the right time. But the "right" care can be a very personal choice. Two patients with the same diagnosis may choose different treatments.

Still, quality care is not just personal taste. It's not a popularity contest either. Sure, you want to avoid rude doctors and long waits. But you can get good parking, sparkling water while you wait, a relaxed doctor visit--and leave with the wrong diagnosis. That's why it's important to have doctors and nurses who:

give skilled breast cancer care in a respectful way and
understand the latest medical evidence.

Good breast cancer care is based on evidence. This means that medical research has shown that the care could help you.³ But other parts of your care are just as important. NBCCF's vision of quality care brings together six core values:

Access to all the care you need when you need it
Information that is complete and correct
Choice about your doctors and your treatment
Respect from everyone in the health care system
Accountability so there is a way to fix problems
Improvement in the system so breast cancer care continues to get better

How to Use this Guide
This guide is in six parts, one for each of the six core values. These values form a framework that helps us think about and judge care. They overlap, so the guide covers some topics more than once. You can read the guide in any order. To learn how NBCCF developed the core values and this Guide, click here.

There is a lot of information in this guide. We strongly recommend that a friend or loved one reads this guide with you. She or he can help you keep track of and sort all the information. We wish this guide could answer all your questions about breast cancer. But we know it does not. There are no best answers for many important questions. For others, there are no answers at all. NBCCF is fighting for more and better research to solve the mysteries of breast cancer. For now, we hope this guide will help you get better breast cancer care.

A Few Tips for Using the Guide
You have time to learn about your options. We know that breast cancer is terrifying and feels urgent. But for most women, there is no need to rush into treatment. You have time to find the right doctors and care centers. And you have time to become an informed patient. NBCCF recommends that you take the time. That way you can make choices that are best for you.

Use our glossary. We have tried to write this guide in plain language. But there are some medical terms you need to know. Is there a word colored red that you don't know? You will find the word's meaning in the glossary section of this site.

Choose your reading wisely. There are thousands of books, brochures, and web site that tell you about breast cancer. But you don't need that many resources. We won't waste your time sending you to hundreds of breast cancer groups or resources. Instead we give you the most important information and a few resources you can trust.

Most of the groups we suggest you contact give helpful information on their web sites. We send you to one page of the web site. We think the information on this page is correct and helpful. We have not reviewed other pages of this web site. We do not know if other pages of the web site are correct or helpful.

And remember, the sites we send you to will also have links. NBCCF has not reviewed those links. So we can't recommend them.

How to Get Good Care for Breast Cancer
This booklet written by NBCCF is a shorter version of our Guide to Quality Breast Cancer Care. It is easy to read and easy to pick up. It uses a welcoming conversational style between a newly diagnosed breast cancer patient and a breast cancer advocate. The booklet contains essential messages about quality care, and focuses on empowering patients to ask questions and learn about evidence-based care. See NBCCF to download this booklet for free. To order a free print version of this booklet, call toll-free (866) 624-5307.

Cómo obtener la mejor atención médica para el cáncer de seno
This is a Spanish adaptation of NBCCF's booklet, How to Get Good Care for Breast Cancer. See NBCCF to download this booklet for free. To order a free print version of Cómo obtener la mejor atención médica para el cáncer de seno, call toll-free (877) 486-8322.

We are grateful to the Council of Fashion Designers of America and its campaign, Fashion Targets Breast Cancer, for providing generous funding for How to Get Good Care for Breast Cancer and Cómo obtener la mejor atención médica para el cáncer de seno.

Please Tell Us What You Think!
This guide is for you, and you can make it better. We use your feedback to make changes. We change this web site each time we print a new version. We also want to hear about how you are using this guide. And we want to hear about how you are making breast cancer care better in your area. So please take the time to fill out our survey by clicking here. We will listen!

Keeping It Current
NBCCF will update this guide as needed to keep the information correct. The date at the bottom of the pages tells when the guide was last reviewed. If you have any problems with the links or the information in this guide, please click here to let us know. Then we can fix the problem right away.

You Can Start by clicking any of the Core Values below:

Access

Information

Choice

Respect

Accountability

Improvement

1. Siminoff LA. Improving communication with cancer patients. Oncology (Huntington) 1992; 6(10): 83-7.

Teutsch C. Patient-doctor communication. Med Clin North Am 2003 Sep; 87(5): 1115-45.

2. National Cancer Policy Board, Institute of Medicine and National Research Council. Ensuring Quality Cancer Care. Hewitt M, Simone JV, eds. Washington, DC: National Academy Press, 1999.

3. Evidence-based medicine has been defined as "the conscientious, explicit and judicious use of current best evidence in making clinical decisions about the care of individual patients."

Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn't. BMJ 1996 Jan 13; 312(7023): 71-2.