Introduction

I am a breast cancer survivor. I am also a nurse. I have been where you are right now and know the anxiousness that you feel. For more than a decade I was the director of quality of care and utilization management at Johns Hopkins Hospital, striving every day to measure and assess quality of care and work with the health care professionals here to continuously improve the care we provide. I joined the team of the Johns Hopkins Breast Center to further accomplish this goal but have chosen to channel all my energies and expertise into the area of breast cancer. My goal is to make it easier for women like you who come behind me also to become one of the survivors like myself.

There have been many women who come to the Johns Hopkins Breast Center who have been seen by physicians elsewhere who did not provide them the ideal care and treatment they needed. This resulted in major medical problems for them over the long term—wrong diagnosis, incomplete or inaccurate information, misleading information or confusing information. As an institution committed to patient care and teaching, we want to provide you some guidelines as to how to go about choosing a physician and facility that is right for you. We want you to know how to choose who will take good care of you and give you your best opportunity to defeat this disease. The best answer is not always the same for each person. We want you to have the tools needed to make the very best choices for you and your family in the battle against this disease.

Though a diagnosis of breast cancer is devastating to hear, it is not something that requires emergency treatment. This is often a misleading piece of information for women. They assume that because they now have breast cancer that it must be treated immediately. Not true. Though delaying for a prolonged time period (more than a couple of months) is not advisable, in most cases, you do not have to rush into making decisions. More importantly, if a doctor tells you that you must have surgery immediately take caution. If your cancer was diagnosed with either a mammogram or because you or a physician felt a lump, the cancer has probably been growing for 5 to 8 years. It took a long time for a few tiny cells to mature enough to become a tumor which could be seen on x-ray or felt. So you don't have to have surgery right away. You don't have to make hurried decisions without adequate information about your treatment options and about what is really best for you. You have time to gather information. You have time to gather your family and friends for support. You have time to seek out the best doctors and facilities to take care of you.

At a time when you feel powerless having heard the verdict of breast cancer, it is important to seek out constructive ways to empower yourself once again and gain some stability over your life and the situation before you. The breast cancer specialists of the Johns Hopkins Breast Center are strong believers in the value of providing women with information about their disease and its treatment options. An informed patient is a patient who will do well psychologically. An informed patient is someone who can participate in the decision making about her care and feel confident in the choices made. An informed patient knows what to expect along each step of the way from point of diagnosis through to completion of treatment and beyond so that she is actually a member of her own health care team... an equal partner with the breast cancer specialists who have her best interest in mind—survival, good quality of life, confidence in the choices made about her health and well-being.

We have spoken to patients who have been to physicians elsewhere and made them feel pressured to proceed quickly with treatment before they've had time to think things through and really participate in the decision making about what is best for them. If you are confronted with a doctor who is pressuring you to have surgery "right away" or who is not informing you about all your options, you need to seek care elsewhere. In the same light, if you are being told by a doctor information that sounds "too good to be true" compared to opinions you have gotten elsewhere (for example, if you have been told that you probably have a large tumor and/ or positive lymph nodes based on physical exam, biopsy results and mammography which would definitely require chemotherapy as part of your treatment don't be fooled by a doctor who tells you "if you have your treatment here you won't need chemotherapy." It simply isn't true... and isn't logical.) Though getting good news like this from another physician can at first sound great, if you have done your homework and studied up on your clinical situation, you would know that this doesn't sound right. Don't be fooled by such an opinion. Get a third opinion if you need it. You are far better off with a breast cancer specialist who tells you frankly and honestly what your situation is than to have someone paint a rosy picture which in the end isn't so rosy.

The decisions you make can and will affect the rest of your life. That's why it is so important that you empower yourself with information so that you can determine for yourself if you are in good hands. This doesn't mean that you have to have a medical degree either. It does mean that you need to take some time and read about breast cancer, the various treatments that are available to treat this disease, and how to best determine for yourself what will be the right choices for your situation. You have time to gather information too through reading literature. Many sources are helpful in explaining in lay terms the nature of this disease, the types of surgery done and the types of adjuvant therapy (chemotherapy and radiation therapy) available to irradicate this disease and make you a long term survivor.

So how do I start?—by taking a deep breath, sitting down, talking with family and friends who can offer you emotional support, and tackling this new crisis one step at a time.

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