by Lillie Shockney RN., BS., MAS Administrative Director The Johns Hopkins Breast Center The Johns Hopkins Medical Institution, Baltimore, Maryland

Introduction   Choosing a doctor   Features of a Breast Center   Long Term Follow Up   Conclusion   Full Version

If you have just been diagnosed with breast cancer or have a strong suspicion that you might be, you are probably feeling overwhelmed, anxious, and powerless... all normal feelings when confronted with a disease that effects one in eight women in the United States. All too often women travel blindly through the health care system not knowing if they are in the best of hands that they could be.... and should be. For treatment of the common cold and other common disorders it is fine to seek out care from local physicians who would normally provide you primary care. When dealing with a life threatening situation like breast cancer however, choosing the wrong doctor or the wrong breast center can be fatal. You must choose carefully and wisely. After all, w e are talking about your life.

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 to also 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 long term--- wrong diagnosis, incomplete or inaccurate information, misleading information, 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. Yo u have time to gather your family and friends for support. You have time to seek out the best doctors and facilities to take 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 placed before you. The breast can cer 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 other 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 what all your options are you need to seek care elsewhere. In the same light, if you are being told by a doctor inform ation 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 study 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 effect 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. It 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 you personally 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 laymen's terms what the nature of this disease is all about, what are the types of surgery done and types of adjuvant therapy (chemotherapy and r adiation therapy) are available to irradicate this disease and have you become 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. Below is a guide to help you become an empowered, informed woman who will have the knowledge and resources needed to make decisions confidently about her breast cancer treatment.

Choosing a doctor: Once you have been told that you do have breast cancer or might have breast cancer, you will be referred to a surgeon. There are many doctors who perform breast cancer surgery but not that many who are truly breast surgeons. B reast surgery, whether it be in the form of a lumpectomy or mastectomy has historically been thought to be a "simple" surgical procedure to do. Well, if it is your breast it might not sound so simple. There are many general surgeons who perform breast cancer surgery. They might do one case a year or perhaps as many as twenty. You want to go and be seen by a surgeon who IS a breast surgeon... who has chosen this to be his or her surgical speciality and who does a lot of breast surgeries every ye ar. These are physicians with the surgical experience you are seeking. They have chosen this as their field of speciality and will be probably more up to date on the latest surgical techniques. High volume surgeons tend to have better results and are more attuned to subtle differences in individual cases. Seek out a physician who does fifty or more breast cancer operations a year. (For example in Maryland during 1996, there were 287 surgeons who only performed one inpatient breast cancer surgery. There we re an additional 94 physicians who only did two such operations. Of all the women having breast cancer surgery in Maryland during this period, only 8.6 % of them were treated by a surgeon who had done more than 50 breast surgical procedures that year. Additionally, of the 647 surgeons who did inpatient breast cancer surgery, only 1.5% of them had done more than 30 inpatient operations in 1996.) You can find out this kind of information from several sources: call the hospital where the doctor is in practice and ask for information about case volume. His or her office should be more than willing to provide this type of information to you. Call your state board of quality assurance and ask for information on file about the physician you are con sidering seeing. They will also have information about any malpractice cases he has had and other quality of care complaints that have been filed against him. This information isn't published data but is available by making a simple call. (Keep in mind however that physicians who treat large numbers of women with breast cancer may have some information on file where as a physician who only treats a handful of patients a year may have nothing on file.) You also want to know about the credentialling of th e physicians you choose; this includes your breast surgeon, medical oncologist, radiation oncologist, radiologist and others involved in your care. Your wisest choice is to choose a physician board certified by The American Board of Surgery as your breast surgeon. He or she had to be trained in a recognized approved training program and pass rigorous exams after training. The American Board of Medical Specialists can be reached by calling 1-847-491-9091. They can provide you information regarding who in your region meets this criteria. Surgeons of this specialty also frequently are members of the American College of Surgeons. This distinction comes only after having become board certified and practicing in a community for greater than 3 years. These surgeons are considered by their peers to be above average in the care of surgical patients. Finally, most true breast surgeons are also members of The Society of Surgical Oncology. This society only accepts as members those with substantially greater training and/or experience in the management of cancer. Most of the latest developments in the surgical management of breast cancer are presented at annual educational meetings of this society. The sta ndards for the surgical care of breast cancer patients are developed by the American College of Surgeons and The Society of Surgical Oncology jointly. Not all breast surgeons do breast cancer surgeries 100% of the time. But consider this - some full time breast surgeons do surgery on only 25-30 new cancer cases each year but others who do only 75% breast surgery treat over 200 new cases a year!

The same criteria applies for each other specialty physicians who will be providing your care. They should be board certified for their specialty with a subspecialty in breast cancer. There are lots of physicians for example who are medical oncologists and provide treatment to cancer patients. You want to receive your care however from someone whose specialty or major interest is "breast cancer."

The American Board of Medical Specialties provides services for finding doctors in your area and checking upon their credentials.

Physician attitude: Seek out someone who is going to be very frank and honest with you. This is not a time to have a sugared version of what your situation is. You need the facts and you want them presented to you candidly. This can be emotional ly difficult for some physicians so you never really end up with the whole unvarnished truth. Seek out a physician who is willing to spend time with you and answer all your questions. No physician knows all - they should be willing to discuss the uncertai nties in treatment and results. Beware of the omniscient doctor. That person may not be able to recognize their shortcomings or see alternatives in treatment that may not be the usual local treatment policy.

Seek a physician who wants to help educate you about this disease and your treatment options and not someone who wants to make the decisions for you. You need to be part of your own treatment team remember. That is important. It can be tempting to just have the doctor tell you what to do but that really isn't in your best interest. There are critical choices that you must make which need to be your decision alone. An example is whether to have mastectomy or breast conservation surgery (lumpectomy with lymph node removal). Depending on your clinical condition and the size of the tumor along with some other factors, it may very well be that from a survival perspective, you will be given the choice of having one type of surgery or the other, both having equal outcomes regarding your survival rate. This is a decision that should be left for you to decide based on many factors including your emotional well being and the feelings you have about your self image. You, not the doctor, will face the consequence s of these decisions for the rest of your life. Make sure these decisions and treatments have your seal of approval.

Talk with other survivors: Getting information from other women who are breast cancer survivors can be very valuable. Also take comfort in knowing that there are many of us who HAVE survived this disease ( there are 1.3 million breast cancer sur vivors in the US today). These women can give you candid information about their own experiences with physicians who provided them care and treatment when they were diagnosed. It is best to talk with someone who has been treated fairly recently though because treatment modalities change. For example if you spoke to someone who had a mastectomy 7 years ago she would tell you that she spent several days in the hospital and suffered with nausea and vomiting and a lot of pain. Physicians who have chosen to continu ously improve care for women battling breast cancer will make changes in their surgical care to prevent the side effects that women in the past had to overcome. There are various types of surgical treatments for breast cancer too and you will find that the experiences women share with you based on the type of surgery they had will also vary. The results also vary dramatically between hospitals and individual doctors. Do not expect the good results from one hospital to translate into similar results at o thers.

For example, women having mastectomies or lumpectomies with lymph node removal and not having reconstruction at the same time should describe an experience free of severe pain and absence of nausea and vomiting. However the reported rates of nausea and vomiting in most hospitals in the country exceed 85%. Several years ago, we at Johns Hopkins pioneered improvements in anesthesia management and other peri-operative surgical care so that the majority of our women patients can awaken from this type of su rgery and feel relatively normal from a physical perspective. I know our own experience here at Hopkins since 1995 has been that women undergoing one of these two procedures without reconstruction feel well enough to go home the same day. The emotional as pects of this disease and its treatment cannot be underplayed. We want patients to focus on addressing their emotional needs as a priority and not have to worry with feeling ill from surgery. If you find that previous patients you speak to are describing unpleasant experiences from their surgical event, then you might want to get more information before selecting the same doctor that they chose to see. There will be other important services to ask former patients about too which will be described in more detail below such as the ease of reaching a health care professional in an urgent way after you go home.

Multi disciplinary care: Lots of facilities boast that they offer this. What does it really mean though? Multi disciplinary means that you are being seen and cared for by a team of breast cancer specialists with expertise in breast surgery, medical oncology, radiation oncology, plastic surgery, cytopathology, and mammography with diagnostic imaging. Some hospitals or breast centers have such a team. This team may be however the only team, meaning that they only have one medical oncologist or one br east surgeon. Ideally you want to go to a place where there are several physicians of each specialty and where your specific case gets discussed and reviewed by the specific team caring for you as well as well by the other physicians there who can offer second opinions on an ongoing basis. In most cases the types of facilities that offer this level of faculty staffing are at larger teaching hospitals. It is important to have this type of specialized care and expertise however. Each step of the care of you is too important to delegate to a single individual - only through open review and debate of each step in the treatment process, can the ideal treatment and management be certain.

Skill, knowledge and technology: The effective treatment of your breast cancer is critical for you. You deserve to receive your care in the most up to date facility where the latest and newest technology for diagnosing and treating breast cancer is available. The physicians and nurses who care for you should be specialized in the diagnosis and treatment of breast cancer. There is always new research and innovative treatments being developed for this disease. Having your care at a facility that can offer state of the art diagnostic evaluation and treatments should be your priority. Being able to have access to the latest treatment modalities including clinical trials for treatment of breast cancer will be valuable for you. Don't settle for a program that is limiting in its offerings as to what it can provide to you. Facilities for example that offer state of the art biopsies in the form of "percutaneous biopsies" means that you can be biopsied in mammography by a radiologist who has been s pecially trained and credentialed to perform such a procedure. The physician can remove tissue for further examination by a pathologist without having to make an incision in the breast or having to put you to sleep. Doing the procedure this way is less painful, allows most women to do it on their lunch hour and get the results within 24 hours. If the facility you have chosen doesn't have such equipment or professional expertise then you expose yourself to having procedures done the old fashioned way which may li mit some of the future treatment options.

Features of a breast center:

You will note that I chose to say "breast center." I guess that is my own bias. I believe that you have a better opportunity of having a truly integrated and comprehensive program for diagnosing and treating breast cancer if the facility has chosen to invest in developing a "center" for breast health and treatment of breast cancer. Tagging the word "center" onto a title though doesn't mean it is one. There are certain features of a breast center that you should expect to be offered as part of their program if they are in fact truly a comprehensive breast center. I've listed some of them below for you.

Easy access:

If you have been advised to see a surgeon due to an abnormal mammogram or lump discovered on examination you will want an appointment as soon as possible. Until you are seen by a surgeon and answers known about your clinical situation, your anxiety an d stress level will remain high. Most breast centers, in acknowledgment of this, will ( and should) schedule you for an appointment within 48 hours of your call or doctor's referral. Fear of the unknown is the worst fear of all. Even if the news you recei ve is bad you can take comfort in knowing that now you can begin working with the doctors to plan what will be the best treatment choices for you.

Patient Empowerment:

It is important that you be given the knowledge you need to enable you to actively participate in decisions about your care and treatment. Some physicians are reluctant to empower women in this way. It is a patient's right and should be a key factor i n deciding where you want to receive your treatment.

Patient education:

Not only do you need to be educated about breast cancer, the treatment options, and what to expect each step along the way but so do important members of your family. This requires an investment of time and resources by the health care professionals t aking care of you. You want to receive and be educated about your treatment plans as thoroughly as possible. You need to have easy access to someone in the breast center who you can ask questions of and feel confident in the responses as well as comfortable asking the question. By doing so you will come to understand what is happening to your body and what needs to be done to get you well again. Your family members who love you and need to support you benefit from this education too because they worried abou t you. They need to understand what is happening so they can devote their time and energy in emotionally supporting you.

Multi disciplinary Case conferences:

A key advantage to having a Multi disciplinary team approach is the special expertise each health care professional offers to each patient's unique situation. Centers who hold on a routine basis case conferences to discuss in detail a patient's clinica l condition, diagnostic findings, and recommendations for optimal treatment are beneficial to the patient's overall well-being and clinical outcome. This is a way to help ensure that the patient is being given individualized attention and care by utilizing maximum breast cancer knowledge, experience and expertise by the breast center team.

Special mammography services:

Appointments right away:

If a woman is being referred by her family doctor or gynecologist for evaluation of a suspicious lump she wants to know right away if it is cancer. For that matter , if she finds the lump herself she doesn't want there to be any delay in getting answe rs about her situation. Mammography facilities should offer appointments for such patients immediately. Ideally the patient would be seen the same day or at the latest the following day. Often times radiologists are not readily available to read the films and talk with the patient about what the mammogram showed. You want to go to a facility that has radiologists available to read the films while you are there and most importantly tell you what they show. Be sure to call and ask whether they offer this ty pe of clinical service. It is one additional way to reduce your anxiety and speed the process along for you to get answers and proceed with treatment if it is determined to be cancer.

Percutaneous biopsy-- mammotome, ABBI, core biopsy, and fine needle biopsies:

These are four types of biopsy procedures that can now to be done in mammography if the facility has the technology and medical expertise. This method of doing breast biopsies enables the patient to have a sample of tissue removed without having an op en biopsy requiring an incision. Having the biopsy done this way required special equipment and devices that not all mammography facilities currently have. It also required special credentialling for the radiologist doing this type of procedure. Learning about these programs and services is an additional way to judge how up to date the facility it that you are considering going to for your care.

Inform the patient and referring physician of the findings right away:

Once you have had a biopsy you want to know the results as soon as possible. Check to see what the "turn around time" is for pathology results. Many facilities can tell you or your doctor the results of a biopsy within 24 hours. The sooner yo u know what you are dealing with the sooner you can begin to makes plans about the best treatment options for you to pursue.

Clinical trials

Having the opportunity to have available to you as many treatment options as possible is important. Hospitals who participate in clinical trials can offer more innovative treatment options usually. In some cases these clinical trials are very new and the medical field is still learning about all of their benefits and value. If you are asked to participate in such a trial you are paving the way to the development of innovative research that will make an important impact on other women diagnosed in the future with breast cancer. You are also being closely monitored throughout your treatment process so that data can be collected about your experience with the chemotherapy agents you've been given. You might also be asked to participate in a study that al ready has proven to be very beneficial for treating breast cancer and now different dosages are being tested to determine the optimal dosage and frequency for you and other patients treated in the future. These new discoveries not only benefit you today but will make a big difference in how many lives we save in the future from breast cancer.

State of the art breast cancer surgery with minimal pain and nausea free:

Most surgeons would say that doing a mastectomy or lumpectomy is not technically complicated surgery to perform. That doesn't mean however than any general surgeon does the procedure well. It is very important to have breast cancer surgery done by a s urgeon who has chosen breast cancer surgery to be his or her surgical specialty and who does a large volume of breast surgeries on an annual basis. Historically, it was common for women to experience nausea and vomiting and post-operative pain following lumpecto my or mastectomy surgery, even those not having reconstruction done at the same time. There are breast centers who have solved this chronic problem and now are able to perform this type of surgery with minimal discomfort and without the GI side effects often times accompanying general anesthesia. It is important to ask questions related to this. The doctors who you are considering taking care of you should have quality of care data that describes their nausea/vomiting rate, pain management, length of time in the hospital on average for women having breast cancer surgery with and without reconstruction, complications that occur during or after surgery, and satisfaction data from prior patient's experience. All important information when choosing wh o you want to have take care of you. At Hopkins, for women who have breast cancer surgery without reconstruction, the majority of the patients feel so physically well after surgery that they choose to go home that same day. They are visited by a home health care nurse that evening and the next morning and are in constant contact with the nurse practitioner in the breast center for updates. What is nice about the option to go home is that it is the woman’s choice. She is pain free and nausea free and able to concentrate on her emotional well-being which should be her primary focus post-operatively.

Radiation oncology:

Patients who undergo lumpectomy surgery for treatment of their breast cancer almost always receive this form of adjuvant therapy afterwards. Most hospitals offer radiation oncology services. If the type of treatment that is advised for you to have inc ludes radiation therapy you will want to ask questions about the radiation oncology physician's experience with treating breast cancer patients. Again, it is valuable to go to a facility that has extensive experience with treating this specific type of cancer. They should also have a physicist on staff who assists with this type of treatment to help ensure that the radiation is done in the precise location where the treatment is needed. As is the case with all your treatment, you as a patient should be given the opportunity to participate in the decision making about this type of treatment option. The physicians and nurses should be forthcoming with information about how this treatment is done, the risks and benefits of it, and how it will precisely be admini stered to you.

Plastic surgery offering the latest techniques:

Most hospitals and breast centers have plastic surgeons who can perform flap reconstruction by taking tissues from other parts of your body ( usually tummy area) and creating from it a new breast. This in the past required the surgeon to maintain all of the vascular system (blood flow) attached during the procedure. There are new techniques now being used which enables the surgeon to transplant this tissue cutting the vessels free. By using intricate microvascular surgery the plastic surgeon is then a ble to reconnect the arteries and veins in their new location. The result for the patient is less pain after surgery. There are only a few facilities however who have a surgeon who has expertise with this type of procedure. If you are considering having this type of reconstruction done you may want to ask about this new method. Again, it is also important that the plastic surgeon you choose be someone who has done a large volume of flap and free flap reconstructive breast surgeries. Experience is a valuable asset when you want the very best cosmetic results that can be achieved.

Skin-sparing mastectomy:

This is also a fairly new form of surgery which was developed at Hopkins and other major cancer centers. The affected breast is hollowed out, then the tissue from the abdominal area is used to fill the opening and created a new breast. There are few fa cilities that have the surgical expertise to perform this state of the art breast cancer surgery/ reconstruction combination. Talk with your surgeon about it and discuss the pros and cons of taking this approach. Again the cosmetic appearance is amazing. When you are shown photographs of reconstructed breasts, you will be impressed with this surgical cosmetic effect. Often the patient doesn't look like she has had a mastectomy procedure done.

Medical oncology:

Most, but not all, patients diagnosed with breast cancer need some form of chemotherapy as part of their treatment. Again, most hospitals offer such clinical services. You want to make sure that the medical oncologist who is overseeing your treatment is specialized in the treatment of breast cancer. A medical oncologist may treat a wide variety of patients with various forms of cancer. You want to be cared for by someone who has chosen to specialize in breast cancer treatment. Someone who treats lots of women with this disease and has a track record for good outcomes. Ask the doctor about how many patients he or she treats in a given year for breast cancer and ask about the patients' experience with complications from treatment. You want to have a boa rd certified medical oncologist who is readily accessible in the event you need to talk with him or her urgently while going through treatment. Ask questions about the doctor's procedure for addressing emergent calls as well as what type of monitoring will be done while you are undergoing this type of adjuvant therapy. Ask about the survival statistics for breast cancer patients treated at the facility you are considering too. All cancer patients' data is entered into a national database giving cancer speci alists the ability to compare various treatment modalities and clinical outcomes. Hospitals who treat large volumes of cancer patients also study their own data and compare it to national statistics. You want to be in the hands of a team of professional s who have a history of good outcomes. Whenever possible seek care at a facility which can demonstrate that their survival rate is better than the national average. (For example at Hopkins, for women who are pre-menopausal and have positive lymph nodes, t he survival rate is 10% higher than the national average.) You will have a higher sense of confidence and security being treated in a place which has these types of results.

Autologous Bone Marrow Transplant (ABMT):

This is a very specialized procedure which is done when very aggressive treatment is recommended. The patient has her healthy bone marrow harvested and stored away for safe keeping. She then receives high doses of chemotherapy which as a side effect destroys her remaining marrow. Afterwards her healthy bone marrow is returned to her. If a bone marrow transplant is advised for your type of breast cancer treatment you will want to select where you go carefully. Your insurance carrier may have a special arrangement with specific hospitals in your area or farther away since this type of treatment is not done at very many places. If given the option you want to be able to have all of your care at one facility where continuity of care can be provided smoot hly. If you do need this type of treatment go to a facility that has experience with doing large volumes of bone marrow transplants specifically for the treatment of breast cancer. The more experienced the doctors and nurses are with this type of treatment the better your personal care and clinical outcomes will probably be. As a new state of the art approach for ABMT, a few, but very few, facilities are doing the procedure in the way that can reduce the amount of time the patient needs to spend hospitalize d, which usually is several weeks. For example, Hopkins has a program called "IPOP" which stands for "inpatient/ outpatient " bone marrow transplant. Breast cancer patients are kept in the acute hospital bed for as brief a time as is absolutely needed and receive a large majority of their treatment and intensive monitoring in an outpatient setting located at the hospital. This enables the patient to spend more time with family while receiving this life saving treatment to help eradic ate her breast cancer.

Genetic counseling:

This is a special program for women who have a family history of breast cancer or have other factors that make them higher risk for developing this disease. Counseling and genetic testing requires specialists who not only are experts in this field but also have excellent communication skills. The choice to have counseling and especially to decide to proceed with genetic testing is one to be taken seriously and with some caution. Though it can sound simple to be tested there are many things to consider before making such a choice. Physicians and nurses who have chosen to specialize in this field have expertise with helping women make these choices. Currently only a few facilities offer this type of program now. It is a growing field however. If this is an area of interest to you or your family you want to go to a facility that has many years of experience with genetic counseling and testing for breast cancer. Ask how long their program has existed and how many patients have been counseled and tested dur ing that time. This will give you some idea as to their experience with this specialized type of service.

High risk assessment for breast cancer:

Being evaluated for your risk of developing breast cancer or a family member getting this disease may be important for you to know. There are health care professionals who specialize in this type of screening and evaluation. Ask the breast center wher e you are contemplating going for your care if they offer this service, who performs the service, and how many patients they screen a year. The program should be conducted by a doctor or a nurse practitioner who specializes in breast health screening progra ms.

Pathology services:

Patients don't always think about this particular service but it is a very important one. The pathologist who looks at your tissue specimen determines what type of breast cancer you have, how fast it is growing, whether it has spread to your lymph nod es, and provides other important pieces of clinical information to your breast surgeon, medical oncologist, and radiation oncologist. Accuracy and completeness is critical. It is difficult for a layperson to assess whether the pathology services being provide d at a hospital are of good quality or not. One source for this information is the JCAHO -- Joint Commission for Accreditating Healthcare Organizations. They inspect hospitals on a tri-annual basis and write up reports on their findings. Included in the ir inspection are their findings for the pathology department. Though they don’t actually look at slides and determine if they were accurately interpreted, they do look at the processes used by pathology to determine how effectively they work. They also r eview the credential files of the pathologists and other faculty at the facility. You can see the latest results of the hospital’s inspection by going to the JCAHO web site at www.jcaho.org or calling 1-630-792-5800 and reques ting a copy of the report. This information became publicly accessible in 1997. There are some pathology departments who have made errors in reading the results of a breast tissue specimen. The worst case is when a specimen is read as benign tissue when in fact it contains cancer cells. You may wish to consider obtaining a second opinion about the pathology results by taking your pathology slides to a second facility that has extensive experience also in diagnosing and treating breast cancer. The pathologist should be considered one of the members of the breast center team and actively participate in the case conferences referenced earlier in this document. The information they provide serves as the road map for determining the treatment plan options best for your specific situation. Ask if the pathologist attends these conferences and what role he or she plays in the actual case discussion.

Patient satisfaction surveys:

There are few breast centers who perform patient satisfaction surveys but all should. It is important to learn from patients how satisfied they were with their care and how can the center go about improving specific services and programs offered to mak e care even better than before. Conducting surveys is time and resource intensive. Centers who have chosen to survey their patients are sending an important message-- that the health care professionals there care about their patients' opinions and want to hear from them. When asking a breast center whether they conduct surveys or not also ask what they do with the results they obtain. It is one thing to collect the data; it is another to do something constructive with it. Health care professionals need to take their patients' opinions seriously. All too often a patient may complain about a specific service or aspect of care she received and her words are not taken to heart. Seek out a place where the philosophy of the center is to use the results of their patient satisfaction surveys to determine what initiatives the center will work on to improve patient care. Go to a facility that considers the patient's opinions the most valuable-- even more valuable than the health care professionals taking care of the patient. (A doctor may think it is acceptable for a patient to wait 2 weeks for an appointment when she has found a lump in her breast; the patient feels however that she should be able to get an appointment that same week. The patient is right!) Breast Centers who truly have the patient's best interest in mind will demonstrate this philosophy by conducting surveys and acting on the results in real time.

Continuity of care:

As more and more health care services are converted from an inpatient setting to an outpatient setting the need to ensure effective and efficient continuity of care heightens. Ask the facility how they go about keeping your primary care doctor or refer ring physician aware of your condition and treatment status. Check to see how they manage to keep track of how you are doing after you go home following surgery or chemotherapy treatments. Ask who is responsible for coordinating your care. You need to have confidence that you are being watched over even when you are not physically at the hospital. Some facilities have nurse practitioners who stay in touch with their patients via telephone once they are home. Some offer home health nursing care after surgica l treatment is done. The team of professionals taking care of you also need to stay in close contact with one another-- that's why they are a team. Ask them how they communicate with one another and keep each other informed about your progress and needs. You want to be cared for by a team who stay well connected with you and with one another, including your referring physician or doctor who functions as your family doctor. Feeling confident that you are receiving good continuity of care provides wonderful peace of mind to you and your family.

Urgent care needs services:

When an urgent problem arises such as sickness that won't subside following a treatment you need to have ready access to a professional who can take care of this situation promptly. Ask what the breast center's procedures are for handling such emergen cies. Also ask how often patients in the past have needed to utilize this special service. A breast center should have available for its patients a professional health care provider 24 hours a day, 7 days a week to handle emergencies. In addition to this the patients should be well informed how to access this urgent care service and know they can confidently rely on it. You should not have to go to an Emergency Room to have such this urgent care needs attended. If their patient education program has been thorough and well done you and your family will know how to take care of most crises and head them off at the pass. (For example, taking an anti-nausea drug at a designated time to preventing vomiting later on.) There are unforeseen circumstances howeve r that do arise on occasion which warrant prompt intervention by a doctor or nurse. Knowing and understanding how urgent care needs such as this are handled is important. Though you may never need to use it you want to know that such a program is in place a nd works well.

Long term follow up:

Some doctors take care of your breast cancer and when treatment is done send you back to your referring physician. Their involvement with you ends when treatment ends. From a continuity of care perspective as well as peace of mind it is better to be ca red for by professionals who will continue to see you for the rest of your life. Though we hope that your breast cancer does not reoccur there is a possibility that it might. Having the same health care team who treated you from the start continue to follow you at designated intervals to ensure that you remain well and healthy is a smart thing. Ask the center what their protocol is for following patients after their treatment is completed. You have been through a life threatening experience and need to conti nue to be seen, screened and evaluated by the people who are intimately familiar with your history and treatment that was done.

Psychological support for you and your family:

Being diagnosed with breast cancer is devastating. Though some people don't openly express how they feel it is impossible to not be upset when told you have breast cancer. Those who love you are distressed too. Having ready access to professionals who can offer guidance, support, and help you and your family develop coping skills will make your breast cancer treatment go more smoothly for everyone. Ask the facility if they offer such services. You want to talk with professionals who have extensive expe rience with breast cancer patients and their families, who are familiar with the treatment you will be receiving and know the doctors and nurses involved in your care. This provides for a better integrated approach to getting you well again physically and emotionally. A few facilities offer private counseling and psychotherapy. Most also have breast cancer support groups who generally meet monthly and are facilitated by a social worker or nurse. Some facilities also offer special support programs for fami ly members including husbands and young children.

Survivor support:

When confronted with a diagnosis of breast cancer your initial thought may be that you are alone in this battle. Feel assured you are not. There are 1.3 million women who are breast cancer survivors living in the United States today. Many breast center s arrange for a breast cancer survivor to talk with women who are newly diagnosed with this disease. The American Cancer Society offers as a free service a program called "Reach to Recovery." This program matches newly diagnosed women with women who are of the same or similar culture, ethnicity, and clinical condition (for example matching a 40 something yr old with stage II breast cancer who is having a mastectomy and chemotherapy with a woman who is also in her forties and had the same treatme nt modality in the past and has completed her treatment at least a year ago.) This program is designed to help address the emotional needs you will be feeling. There is great benefit talking to someone who has been through what you are about to go through. Some breast centers have taken this program a step further and arrange for their own breast cancer survivor volunteers to also contact the patient. These survivor volunteers are very familiar with your situation because they have received their care from the same team of professionals you are receiving care from now. (Hopkins offers such a program. Though it is fairly new it has already proven to be very beneficial for our patients and their families.) Different facilities and doctors have sometimes diffe rent ways of doing certain types of treatments. Having a survivor who is familiar with the treatment program you are going to be receiving makes it easier to talk with and gain insight from her. This survivor volunteer becomes an extension of your breast cancer health care team. Ask the facility you are considering going to if they offer such a program and how it is organized. There are some facilities who discourage having newly diagnosed patients talk with women who have been previously diagnosed and treated. The belief in such situations is that the survivor may in some way negatively influence the patient in her decision making process. Health care professionals need to recognize the value of new patients talking with patients who have had similar treatment in the past and allow them time to exchange information. It is a patient's right to gain as much insight and understanding about her disease and its treatment as she can. This is one additional method it accomplish this goal.... and an additiona l way for you to evaluate the breast center you are considering.

Lymphedema prevention and management:

A few patients, after having lymph nodes removed as part of their breast cancer surgery, develop lymphedema. This results in problems with swelling of their arm and hand on the side where their surgery was done. One way to prevent this from occurring i s to be proactive in its management. Check to see if the breast center you are considering to going to offers a "lymphedema prevention and management program." Such centers will have a certified occupational therapist or physical therapist become certified and credentialled in lymphedema management. The therapist will see the patient prior to her surgery and teach her special exercises to do to help prevent the occurrence of lymphedema developing. She also will help in managing the problem should it occur anyway. A few breast centers also offer special support programs for lymphedema patients. Though lymphedema only occurs occasionally, knowing that the breast center offers programs designed to prevent it and manage it is a sign of the comprehensi veness of their services.

Rehabilitation Medicine:

Having breast cancer surgery, whether it be a mastectomy or lumpectomy with lymph node removal results in temporary difficulty with range of motion to your affected arm. It is smart to learn in advance of the surgery the best exercises to do to prevent range of motion problems from occurring. Some breast centers offer as part of their preoperative management and preparation a program specifically for this. It is usually conducted by the Rehabilitation and Physical Medicine Department which works in a c oordinated manner with the breast center staff.. Patients are trained in appropriate exercises to do by a physical therapist or occupational therapist. Patients who are experiencing problems with gaining their full range of motion back after their surgery are also seen by the same therapist. She works with the patient to restore her physical abilities to what they were before. Most patients do not need assistance after surgery if they have been trained well and follow the prescribed exercise program shown to them. It is good to know that such programs exist though should you be in need of these special services.

Continued Education Programs and Seminars:

When your treatment is over you will still want to stay on top of whatever is the latest treatment programs and research discoveries being made about breast cancer. Your continued good health may be dependent on it. For most women they thirst for infor mation and want to learn as much as they can-- it may make a difference for their own health or for someone in their family who they care about. Check to see what type of continued educational programs the facility offers related to breast cancer. Examples of se minars that might be offered include: hormone replacement therapy after breast cancer treatment; breast cancer gene research findings; the latest in breast reconstruction; coping with fear of reoccurrence of breast cancer. Though your treatment may be over the disease and its long term effects may continue. You will want to stay informed and should expect the center where you received your care to help in keeping you updated at routine intervals.

Other cancer screening programs for you and your family:

Breast cancer, though it may be happening to you, effects your entire family. Usually a diagnosis of breast cancer is a surprise. This is the time to check out your health in general and that of your family's to make sure that there are no other surpri ses. Men at a minimum should be checked for colon cancer and prostate cancer. Women need to be also checked for colon cancer and uterine cancer. Take this opportunity to commit to yourself and your family to be properly screened for these types of cancer s and others that may apply due to family history or lifestyle. See what types of cancer screening programs are offered at the facility where you plan to receive your care. Your family will thank you and you will thank yourself for having had the screenin g done. The outcome for everyone will be a healthier future.

Image Recovery:

There are side effects, physical ones and psychological ones, that can take a toll on us as women when we are treated for breast cancer. For some of us we may lose a breast; for others we might lose our hair; many will lose both. These are symbols of f emininity for many and are devastating to experience. Being prepared for these loses is a good way to adjust and cope. Some facilities offer on site or have an affiliation with an "Image Recovery" service. These places are sometimes referred to as mastectomy supply shops, wig shops, or called by some other name. Their purpose is to help restore (as in the case with a breast prosthesis) or temporarily replace (with a wig) that which is lost from your self image. If you anticipate needing a breas t prosthesis be sure to be fitted by someone who is a certified fitter. This individual would have taken a special course to learn how to properly fit a woman for a breast prosthesis. An improper fit can result in poor body alignment, back pain, and lack of confidence in one's appearance. Check to see what the facility has to offer and go and visit it if possible. Many of them also offer special classes in make up and hair styling too as additional ways to improve our self image and help us to feel good a bout our appearance. Remember, you need to not just physically heal but also emotionally heal. Your treatments will go smoother if you can feel confident in the way you look during and after therapy.

Conclusion

I've tried to provide you some guidance and direction as to how to choose a breast center worthy of taking care of you-- you are important.... your care is important.... it shouldn't be done just anywhere. After all, this is a life altering experience and depending on the accuracy of your diagnosis and effectiveness of your treatment a life saving experience. I want you to choose well. If you have questions or wish to discuss this one on one with me, you are welcome to reach me at the Johns Hopkins Breast Center. Remember, I am a breast cancer survivor. My mission is for there to be a lot more fellow survivors. Good luck to you and I wish you well as you embark on your road of transformation from victim to breast cancer survivor.