Take Charge of Your Breast Cancer: A Guide to Getting the Best Possible Treatment - Softcover

John Link, M.D., is the medical director of one of the leading breast cancer treatment centers in Southern California. He has been honored by the American Cancer Society for his committment to the treatment of and cure for breast cancer. He is the author of The Breast Cancer Survival Manual (0-8050-6400-1). He lives in Southern California.

Take Charge of Your Breast Cancer
1You Are in ChargeThe idea of taking charge of one's medical program is the single most common practice among survivors. It is the cornerstone of a strategic recovery plan.--Greg Anderson, author of Cancer: 50 Essential Things to Do 
 
This is a book for women with breast cancer. Its sole purpose is to help you navigate the medical system and receive optimal care. The dictionary defines optimal as "most desirable" or "favorable." I define optimal care as individualized or customized care that is neither undertreatment nor overtreatment for each woman's particular situation. It is a treatment that gives each woman the best chance of being cured with the fewest side effects and disruption to her life. I believe that as many as 40 percent of women in this country with newly diagnosed breast cancer do not receive optimal care. This is due either to misdiagnosis or to inappropriate treatment. Unfortunately, both lead to increased suffering and even, though rarely, death.How can this happen? I don't believe it is intentional or done out of malice, but instead is due to ignorance, pride, lack of sufficient data, and miscommunication among doctors. In almost every case of mismanagement, a single physician makes recommendations in isolation or without accurate information regarding a woman's unique situation.The recommendations often lack current scientific foundation and usually are financially favorable to the physician or the system under which he or she practices.How difficult is it for a woman to receive optimal care in our present health care system? My experience as a breast cancer doctor seeing hundreds of women from across the country for second opinions each year is that a significant number of women do not receive optimal care. A significant percentage of women are over- or undertreated, with little consideration about who they are as emotional, spiritual, and sexual human beings. 
 
There is no question that your first priority is survival--optimizing your chances for a cure. Certainly, optimal treatment involves the best chance for cure. Treatment should be based on the nature of the breast cancer--its physical extent and its microscopic and genetic characteristics. With optimal treatment 80 percent of woman today should be cured, and this number is improving each year. These women need to go forth in their lives, feeling good and whole and able to live and love. Unfortunately, for many women, the treatment becomes worse than the disease. A confusing and unsettling paradox is that at the time the breast cancer is discovered, you usually feel normal and have no physical complaints. At the end of treatment, when the cancer is all gone and hoped never to return, many women feel sick and debilitated. Fortunately, their well-being returns once recovery from the side effects of treatment occurs, but some lose confidence in their body. Some women receive treatments that leave them physically, emotionally, and sexually scarred for the remainder of their lives. As you will see, this doesn't have to be the case.To achieve optimal care, you need to be informed and become your own advocate. If you are the significant other of a woman with breast cancer, you can help your friend or loved one process information and advocate for her. Breast cancer is one of the few diseases that requirea woman to make critical decisions about her own care. She can defer decision making or rely primarily on the advice of her doctors, but this unfortunately does not guarantee the best care.Breast cancer requires the collaborative care of at least four or five different specialists, including oncologists, surgeons, pathologists, radiologists, radiation oncologists, and psychotherapists. Each of these professionals practices in the context of his or her own specialty and brings to the patient certain biases based on training, experience, ego, and monetary gain. For example, many surgeons believe that the more surgery, the better chance for a cure. This approach stems from the teachings of William Halsted, the father of breast cancer surgery. His operation, the Halsted radical mastectomy, was the only operation for breast cancer for sixty years. Although this operation is rarely performed today, the attitude that more is better persists among many surgeons. I've heard surgeons recommending breast conservation in public forums and in tumor boards (gatherings of various physicians and cancer specialists to discuss individual patient care), and then, behind closed doors, telling a woman, "If you were my wife, I would insist you have a mastectomy." The surgeon's training has focused on local control, and many were trained in an era prior to the use of systemic therapy--treatments such as chemotherapy or hormonal therapy--that impact the tumor cells regardless of whether they are confined to the breast or have migrated beyond the breast. Long-term survival of breast cancer depends on local control, but probably depends even more on controlling and eradicating the spread of the diseased cells.I believe that the appropriate surgical intervention must take into account the risk of systemic spread and the necessity of systemic therapy. Surgeons often lose sight of the bigger picture, beyond the breast. This type of bias also exists in the other specialties. For example, in medical oncology, my own chosen field, it is common for oncologists to routinely prescribe chemotherapy to a majority of women with little chance of benefit. This advice, often presented as scientifically supported and necessary, frightens women who are in crisis. Many womendon't even realize they have an option. When presented with the statistics of risk and benefit in terms they can understand, many women will decline the chemotherapy because the benefit is not worth the risk. Unfortunately many oncologists don't present women with options, but only with a recommendation. Many women conclude that if chemotherapy is recommended, it must be the standard and necessary. An emerging criticism of screening mammography is that the procedure leads to overtreatment of small cancers that are highly curable with limited surgery alone. Chemotherapists, like surgeons, get caught up in their own domain and forget to see the woman in her entirety.Radiation oncologists also overprescribe treatment, particularly in older women. The standard is to give all women with breast cancer who have not had a mastectomy radiation for six to seven weeks. But this additional and potentially toxic treatment does not usually increase the cure rate. It does reduce the local recurrence rate, which is significant. Approximately 20 to 30 percent of women who do not receive radiation therapy will have local recurrences. If a local recurrence is discovered early, though, there is little risk of systemic spread. For women over sixty years of age, with completely excised tumors, the risk of local recurrence is approximately 5 percent.Radiation therapy is usually presented as "absolutely necessary," and women assume it will increase their survival, which is usually not the case. Women need an honest presentation and then should actively participate in the decision to do radiation or not. If they passively accept the recommendation, they have missed an opportunity to decide what is appropriate for them. When a woman actively participates in a decision, I believe, she will feel less victimized by the treatment and will experience fewer side effects.With this fragmentation of care, it is unusual for a woman to find a physician who will accept her as a partner and help coordinate her care, considering her as a human being who will be cured and go on with her life after breast cancer treatment. This is why it is important for you to be educated and to take responsibility for your treatment.You may discover silent partners in your health care that you may not appreciate. These silent partners are the companies and financial interests that manage health care. With health care delivery constantly changing, people are now termed as "lives" that are bought and sold like commodities on the stock exchange. In many HMOs, there are incentives for health care providers not to treat. Doctors are capitated, which means they receive a small fee each month to take care of a person regardless of whether he or she needs or receives treatment. A certain amount of money is also set aside into what is called a risk pool, and at the end of the year, if this money is not used on tests or treatment, then the doctors will get a bonus. What is obvious is that the doctor gets paid more for not ordering tests or for doing less. Many of us went into medicine to care for people, but now it seems that some of my colleagues' major concerns are to avoid caring for patients. New terms such as "gatekeeper" have been added to our medical vocabulary. "Gatekeeper" is a terrible term. It refers to a doctor, usually the primary care physician (PCP) who controls whether a patient can "get through the gate" for appropriate treatment. The HMO system was initiated at a time when the cost of medical care was skyrocketing. It was seen as a method for cost containment by eliminating many of the excesses of medical care, including prolonged hospitalizations, expensive specialists, and the overprescribing of tests and drugs. In most instances HMOs were successful in keeping costs in line in the first three to five years of their existence, but costs began to rise again after this initial period. One of the problems is that the Health Maintenance part of HMO was not occurring. Patients' health problems were not being fully addressed, and diseases would resurface in a more advanced state. The cost to the patient and society was actually higher with the HMO system than the traditional "fee for service" system. I was aware of these problems from my patients, but I hadn't experienced this type of medicine firsthand until my mother became ill.My mom, a vibrant, active woman, began to experience stomach pains and lose weight. She didn't want to bother me or my two sisters,so she scheduled an appointment with her PCP. She had seen her PCP on several previous occasions for routine checkups and liked him well enough. He seemed young and enthusiastic, and at the completion of their short interactions he gave her a nice hug, which she loved. She made an appointment regarding her stomach problem and was given a date four weeks later. The day before her appointment, she received a call that the doctor had a scheduling conflict and the appointment was delayed another two weeks. By this time, she had lost six more pounds, and she began to worry that something was really wrong. She finally got her appointment with her PCP, who was unconcerned. He ordered a blood test and prescribed a medication that blocked stomach acid production. Mom felt reassured, but worried in spite of her stomach pains actually lessening. However, she continued to lose weight.When she dropped under one hundred pounds, she called me and confessed her plight. Hearing her symptoms, I feared that my seventy-four-year-old mom had cancer. I was on the phone immediately with her PCP, which initiated her referral to a gastroenterologist, who saw her within a week (without my intervention it would have been another four weeks). He put a scope down into her stomach and discovered an ulcerated large tumor. The stomach wall was markedly thickened. Using the gastroscope, he biopsied the thickened stomach wall as well as the edge of the ulcer. When she awoke from the light anesthesia, the gastroenterologist gave her a grave look and told her he thought she might have "a problem," but the biopsies would give the real answer. She would have to wait yet another week to receive the results, and she should schedule an appointment with her PCP.My mom is a brave woman. She knew something was drastically wrong. She knew that she had a malignancy before the PCP told her it was true. The doctor was all business and had trouble looking her in the eye. He said the gastroenterologist's report, the CAT scan, and the pathologist's interpretation of the biopsy slides all confirmed she had a tumor. What made things even worse, he said, was that thereappeared to be several spots on her liver that were consistent with spread to her liver. Later that night, my sister related the interview to me. As a general medical oncologist before subspecializing in breast cancer, I believed this to be a death sentence. My sister said the doctor tried to be positive and wanted Mom to see an oncologist to discuss possible treatment. "Is there treatment?" Mom had asked him. He assured her that there was tremendous progress in the treatment of all kinds of cancers. She asked him if he thought it would have made a difference if it had been found seven months prior, when she first complained to him of stomach pains and difficulty in swallowing. He said he didn't think so. She didn't believe him. He didn't give her his customary hug, but shook her hand and told her and my sister that he would be available.Normally in an HMO, my mother would have had to wait several more weeks to see the oncologist, but her PCP pulled strings, perhaps because I was a physician, and Mom was able to see her within several days. Again my sister was with her. The oncologist was a middle-aged woman who was sympathetic but was obviously short on time. She apologized in advance for being the bearer of bad news. She told Mom she was terminal and that chemotherapy had limited value. In fact, she said, it would cause more harm than good. She made mention that she knew I was an oncologist and said that she was sure I would agree that chemotherapy was probably not indicated. She stated that she would be available to talk with me. She told my mom and sister that stomach cancer was incurable when it had spread to the liver. She further stated hospice was the most appropriate plan at this time, and my mom should get her affairs in order. The oncologist spoke in a monotone, without emotion, as if she were reading from a page in a book.We came as a family to her, my two sisters and myself. What the oncologist had said, directly and without real compassion, unfortunately appeared to be correct. From my sister's account, I appreciated the oncologist's forthrightness and candor, nonempathic as it was. Many oncologists sugarcoat or misrepresent the truth, which can leadto toxic chemotherapy in the name of hope, with little if any chance of benefit.In the next few days, my two sisters and I helped our mom sort out her things and get her legal documents in order. She divided the family pictures among the three of us. It was heart-wrenching.I am relating this story for a number of reasons. In The Breast Cancer Survival Manual and in my practice I advocate that one should always consider a second opinion when dealing with information that is critical to survival. We were experiencing such grief with my mother's situation that we didn't initially think to follow my own advice. Although it seemed as if there was nothing to be done, I realized that we needed to be sure of the diagnosis, so I asked my colleagues in Los Angeles to review her slides and X rays.I submitted the slides to my good friend Julio Ibarra, a superb pathologist whose specialty is breast pathology, and I took my mom's CAT scan to the radiologist at the hospital where I practice in Long Beach. The radiologist confirmed the large mass and tremendously thickened stomach wall, but thought the two spots on the liver probably represented cysts...