AMAZONS

photo of Patricia Rae Kennedy“Most of my patients are completely devastated when they are first diagnosed with breast cancer. But they go on, and they pull themselves up out of desperate despair with such breathtaking courage. They find a core of strength within themselves, and the strength grows as they progress through treatment and beyond. Their motivation and inspiration varies: faith in God, loved ones, children, work. The coping mechanisms vary tremendously, too. I feel privileged to be a part of this process for these remarkable women. I am proud of them and in awe of them. They give me an incredible gift by trusting me to work with them. My motivation as a surgeon is to try to make myself worthy of that gift.”
Patricia Rae Kennedy ’81
Surgeon, Faulkner Breast Centre

“It’s not about touching my breast. I got over that when I was 14. It’s about what I might feel. It’s about what I might find. It’s about all the fears, the decisions, what I may never feel again, quite literally, if I do find something.”

Many of us share this alumna’s fears, and requests for a “definitive” Bulletin article on breast cancer research have been increasing. But a year spent reviewing materials made us realize acutely how much is not yet understood about the disease and its treatment. We decided that we could best serve readers by offering a beginning. We hope these essays will encourage women to have regular exams, talk with their doctors, get second opinions if they are not comfortable with a first diagnosis, and contact groups such as those listed on the facing page for up-to-date information.

Each breast cancer patient is different and appropriate treatment for another may not be right for you. What the alumnae who tell their stories here contribute are messages of courage and hope. We begin with an alumna surgeon who shares her strategies for empowering patients to make informed decisions about their treatments.

Giving the patient control

During her training in general surgery at SUNY/Stony Brook University Hospital, Patricia Rae Kennedy ’81 found herself showing up early for work to change bandages for breast cancer patients because she thought the attention made them feel more comfortable.

“I am so impressed with my patients, and they are one reason that I love what I do,” says Kennedy, now a surgeon at the Faulkner Breast Cancer Centre in Boston. “The process of the disease is intellectually very interesting — the more you learn about it, the more you realize you don’t know about it. But it’s the patients that are really great.”

The most difficult part of Kennedy’s work is having to tell someone she has breast cancer. Kennedy telephones patients herself. “I’ve gotten into healthy debates about this with my colleagues,” she says. “Some have patients come in to the office to be told; they feel that’s more personal. I telephone first because it gives the patient some control over her environment.

“I usually am able to tell a patient, for example, ‘I should have your results by Tuesday afternoon’ and ask them where and when they would like me to call them. The patient can then decide whether to send the kids out to a movie, whether she wants her husband, mother, sister, to be with her when the phone rings or to be completely alone.

“If I were to bring you into my office to tell you that you had breast cancer, and you wanted to scream and cry — or both — you might feel that you really couldn’t do that in my office. Neither could you do it as you walked down the hall, past the waiting room where there are other patients waiting. You probably wouldn’t be able to cry until you got to your car. Not everybody wants to cry, but I’ve had some patients say ‘Thank you,’ and hang up. Then they call me back later, which is fine — they’ve had time to do whatever they need to do when you’re giving them bad news.

“When you make that phone call, there’s very little people are going to absorb after you’ve said ‘cancer.’ So I usually try to get two messages across. I give them an appointment to see me the next day when we’ll have a long discussion. I also say anything good that I can — ‘It’s a small cancer. It’s a slow-growing cancer. We caught it early.’

“During the appointment, I write down everything I’m saying so that they can process it at their own speed. I make some drawings so that they understand what type of cancer they have. I encourage people to call me back if they think of more questions, which they will.”

Kennedy’s practice, which was begun by Dr. Susan Love, believes in patient empowerment. “With education, the patient can make the choice,” she says. “When we make a diagnosis of breast cancer, I think the most important thing to convey is that people have time to think about their treatment options. It takes one breast cancer cell anywhere from 90 to 120 days to divide into two. I try to emphasize particularly that people have time to get second opinions if that’s what they want. They need to feel comfortable with what they’re about to embark upon.”

In discussing the choice between lumpectomy and mastectomy, for example, Kennedy likes “to lay out all of the statistics and data for a patient: the survival and recurrence rates for a tumor of her particular type and stage. Some women choose breast preservation even if they are taking a chance on decreased survival. Women with an excellent prognosis often need permission to choose a mastectomy, if that’s what they want. They feel as if they should choose a lumpectomy, often because of what they hear from their friends or the media. I feel that it is important for me to provide information and to remain unbiased in my presentation. I emphasize that there is no wrong choice. I then support them in whichever choice they have made.

“Not every patient likes this approach. These are terribly painful decisions to make. Some prefer to be told what to do, and studies show that the physician’s recommendation is the number one influence on a patient’s choice.” (Genevieve Atwood ’68 found she wanted a more directive approach.)

Self-exams

“I don’t think anyone can get to know a person’s breast as well as herself,” Kennedy says.“I take it very seriously when someone comes in and tells me, ‘I have noticed this; it’s a change.’ But women should not be made to feel guilty about not doing breast self-exams if they’re so fearful that they look forward to it once a month as if their breast were the enemy. Some women just have lumpy breasts, and for many of them a self-exam is a frightening ordeal. If I have a patient who makes an appointment to come in every time she does a self-exam because she thinks she feels something, we may just have her come in on a more frequent regular schedule.”

Mammograms

In January 1997, a National Institutes of Health consensus panel drew criticism from health professionals for its report that there is no demonstrable benefit to mammography screening before the age of 50. The National Cancer Institute and the American Cancer Society responded by urging that women in their 40s have screenings every one to two years. In April 1997, The New York Times reported that patients did not seem to be responding with confusion to the conflicting advice on mammograms from three different panels of experts. Doctors and social scientists interviewed said that women tend to rely on their doctors’ advice, particularly if the physicians seem caring, rather than review medical data themselves, and that doctors continue to recommend screening for younger women.

“Everybody agrees that women need annual mammograms after 50,” Kennedy says. “In my practice, I and the mammographers with whom I work recommend screening annually after the age of 40. I am a specialist, and generally people come to the Centre because they have risk factors or a family history or some other reason which would put them in the group that you would want to screen early.”

Kennedy explains that younger women have more breast tissue, which shows up as white on a mammogram. “A cancer also shows up as white, so with a lot of breast tissue, you are looking at white on white — it’s very ‘dense’ and difficult to read. As you get older, particularly beyond the menopause, a lot of the breast tissue is replaced with fat, which shows up as black or gray. The contrast makes mammograms in older women easier to read and more accurate.

“It is important for people to know that if they are going for a mammogram because they have noticed something that they think is different in their self-exam, they need to tell the radiologist or technician.

“A diagnostic mammogram differs from a screening one. The technician should put a marker on the breast right over the spot where you notice a change. This alerts the radiologist and may affect how he or she interprets what is seen in that area. They may want to get extra views using angled, magnifying or compression techniques in order to clarify what is seen in the area of concern.”

Ultrasound and MRI

“Ultrasound is considered a complement to a mammogram screening. It looks at the density of the tissue in a different way than mammograms. We can distinguish a cyst from a solid lump very easily, for example. I find, unfortunately, that the usefulness of ultrasound depends very much on who is doing it. Unlike mammograms, actually looking at the developed film is not as useful as evaluating the image on the screen as the ultrasound is being performed. The operator moves a probe on your skin, and the technique of manipulating the probe to get the desired view affects the quality of the image.

“We are very excited about the prospects for Magnetic Resonance Imaging (MRI). The standards for interpreting MRI are still being worked out in research protocols. Right now, the standards only really exist for identifying ruptured silicone implants. We hope that MRI will allow us to get a better look at tissue that would be ‘dense’ on a regular mammogram.”

Biopsy

“If you have an abnormality, it can be diagnosed through a surgical biopsy, a fine needle biopsy or a core needle biopsy. The fine needle withdraws or ‘aspirates’ fluid from a cyst, and cells from a solid lesion, but we can only tell if they’re malignant, not malignant or suspicious.

“At Faulkner, we prefer to use core needle biopsy, which draws a small piece of tissue as opposed to just cells. The pathologist is then able to look at the cells in relationship to the Surrounding tissue and make a more specific diagnosis. You can tell whether it is noninvasive or invasive cancer, and if the latter, what type. Some of the studies for estrogen receptors and other prognostic markers also can be done on the core needle sample.

“A core needle biopsy can be done in the office, and the patient leaves with an adhesive strip bandage; it’s just asmall procedure with a bit of local anesthetic. If the patient requires a surgical biopsy, this is generally an outpatient procedure which can be done with local anesthesia, sometimes with intravenous sedation.”

Mastectomy

“The procedure we do today is called a modified radical mastectomy. It removes the entire breast, including the nipple, the lower lymph nodes under the arm. This is a different operation than the old-fashioned radical mastectomy, which removed all the muscles on the chest wall. When you hear about patients who had caved-in chests and scars — those patients had radical mastectomies.”

Reconstruction

“Almost every woman who chooses or needs to have a mastectomy is a candidate for reconstructive surgery. There are a number of types of reconstruction. There are a number of types of reconstruction. There are saline-filled implants. Another type uses muscle either from the abdomen or from the back. The muscle is rotated underneath the skin and tunneled in to fill the breast space. A reconstructed breast can look just like the real thing, but it is not the same as having a real breast because it is numb — all of the nerves have been cut during the surgery.

“It used to be felt it was wise to wait a couple of years before reconstruction, because there was a fear that it would hide a recurrence of the breast cancer. We now know that’s not true. If a patient knows she wants or needs to have a mastectomy, she can meet with the plastic surgeon and plan to have both the mastectomy and the reconstruction done under one anesthetic.

“There are those who are angered by doctors who encourage women to learn about reconstruction. The feminist argument is that women should be comfortable with their bodies no matter what, and not be made to feel a need to con-form to an ‘ideal.’ This is a powerful argument, but I do urge my patients to learn about reconstruction. I never try to talk them into having the surgery. I just want them to be able to make an informed decision. I discuss reconstruction even with patients who are not eligible for the procedure — usually because of preexisting medical conditions — and tell them why they are not good candidates. I don’t want them to hear about it later on and wonder why no one ever talked to them about it.

“The reasons women have for wanting reconstruction are varied and personal; I feel they should have it if they want it. The surgical literature generally makes the assumption that older women wouldn’t be interested. I try to make no assumptions for the patient — the oldest woman for whom the plastic surgeon I work with did reconstruction was in her 80s.”

Lumpectomy

“A ‘lumpectomy’ or breast conserving therapy, involves removing the cancer from the breast along with a rim of normal tissue, and removing the lower axillary lymph nodes (right at the edge of the breast, under the arm). This is followed by radiation therapy to the remainder of the breast.

“We call getting a good rim of normal tissue ‘getting clean margins.’ This is the critical piece to whether someone can have a lumpectomy; unfortunately, you can’t know 100 percent until you try it. Every patient I take to the operating room for a lumpectomy knows that if we cannot get clean margins, they are going to need more surgery. Perhaps 25 percent of patients have to go back. While it is definitely frustrating for patients, it does not affect their overall prognosis. Lumpectomy for a large tumor in a small breast may not have a good cosmetic result, but for a lot of patients, lumpectomy is about preserving as much of their breast as they can, not about what it looks like at the end.”

cartoon

Lymph nodes

“The lower axillary lymph nodes are removed for evaluation in patients with invasive breast cancer. Removal of these nodes is a part of both a modified radical mastectomy and breast conserving therapy (lumpectomy). The only way to determine if cancer has spread to the lymph nodes is to remove them and look at them under the microscope. The information is then used to assess prognosis and decide about the need for additional treatments such as chemotherapy.

“A new and exciting technique currently being developed may decrease the amount of lymph node surgery required. Investigators are studying the feasibility of identifying the ‘sentinel’ lymph node, which is the first lymph node to receive drainage from the breast. It is hoped that microscopic analysis of the sentinel lymph node will provide information predicting the status of the remaining nodes. If this technique proves useful, and we are able to get all the prognostic information we need from one lymph node, it will reduce the amount of dissection and the risk of potential complications that patients face with axillary surgery.”

Chemotherapy

“If cancer has spread beyond the breast, patients need treatments for the rest of their bodies. These ‘systemic’ treatments fall into the subcategories of chemotherapy and hormonal therapy.

“The choices that are given to patients are very much tailored to how aggressive their tumor is, what their tolerance to different drugs would be and whether or not their tumors are sensitive to estrogen.

“Chemotherapy is a broad category which covers many combinations of oral and intravenous medications. Chemotherapy for breast cancer is not what most people have in mind — something horrible that makes you nauseated for months on end. There are different side effects depending upon the drugs you take, but many of our patients work right through their treatments. You can definitely lose your hair, but nausea is not a major issue for the majority of breast cancer patients.

“Taxol has received a lot of attention in the press. It is used, but it is not a first line drug; the more common ones are the combinations CMF (cyclophosphamide, methotrexate and 5-fluorouracil) or CAF (cyclophosphamide, doxorubicin or Adriamycin, and 5-fluorouracil). Autologous bone marrow or stem cell transplant has also made the news a great deal lately. These terms refer to regimens of chemotherapy that use very high doses — they also are very toxic and can wipe out the bone marrow, so patients on these protocols donate and bank their bone marrow or stem cells in advance to be given back as transplants.”

Hormonal therapy

“Cells in the breast contain receptors for the female hormones estrogen and progesterone. These receptors allow the breast tissue to grow or change in response to changing hormone levels. Breast cancer cells sometimes also contain these receptors. Hormonal therapy generally blocks the effect of hormones on the tumor cells, causing them to die. The most commonly used hormonal therapy is Tamoxifen.

“We’re still not exactly sure of the mechanisms by which this therapy works, but it is very effective in elderly patients whose tumors are hormone-receptor positive. We use this therapy alone or in combination with chemotherapy. I used to be able to say that post-menopausal women would be given hormonal therapy, but now many of them are offered chemotherapy as well.”

Radiation therapy

“Radiation therapy is used after lumpectomy to treat the remainder of the breast. It is sometimes also used to treat the chest wall after a mastectomy. Like surgery, this is a local treatment — it is only effective in the area being radiated. It does not, therefore, substitute for systemic treatments like chemotherapy. Adding radiation therapy after surgery lowers the risk of recurrence in the treated area. Radiation therapy to the breast is tolerated very well. The vast majority of my patients continue to work during radiation treatments. The two main side effects are fatigue and burning of the skin (usually like a sunburn). The treatments are usually daily for five to six weeks. Each treatment is very brief, however, and patients are generally in and out in 15 minutes.” BMC

What causes breast cancer?

Answers to questions toll-free, via Internet or TTY

Read Stories of courage and hope from alumnae
Please, women who love and are loved...
By Elizabeth Kaplan Woy '57
Through fear, the Sticking Place and beyond
By Terry Steiner Graybill '71
A birthday present: doing one's homework
Genevieve Atwood '68, by Lynn Litterine '96
'You learn there's no time like the present.'
Catherine Sease '69, by Lynn Litterine '96
'I choose the language of peace.'
By Melodee Kornacker '60
'Tom'
By Susan Johnson '62

cover icon Return to Spring 1998 highlights

What causes breast cancer?

Lois E. Wehren ’69, M.D. left her ob/gyn practice to earn a Ph.D. in epidemiology (the incidence, distribution and control of disease), focusing on women’s health issues under a post-doctoral fellowship at the University of Maryland.

“We still know surprisingly little about the causes of breast cancer,” Wehren said. “Estrogen has been implicated, but the studies conducted over the past 30-35 years have really failed to provide a clear answer to that question. The reasons for that are fairly simple, although not intuitively obvious. One first needs to ask whether the women who take estrogen are like the women who do not, and the answer is ‘no’: Women who take estrogen tend to be better educated, to have higher incomes and higher socioeconomic status, and to be more health conscious. There is an even more fundamentally important difference: Women who take estrogen are by definition under medical care and see a health professional on an annual basis, when a breast exam is typically done and a referral made for mammographic screening. This cannot be said with confidence about the women not taking estrogen.

“The higher incidence of breast cancer seen in women on estrogen replacement therapy (ERT) can be explained by this surveillance bias. It turns out, furthermore, that despite the higher incidence of breast cancer, women on estrogen have significantly lower mortality from breast cancer than do women not on estrogen: their tumors tend to be diagnosed earlier, they tend to have less aggressive tumors and their tumors are more likely to be estrogen/progesterone receptor-positive, which makes the tumor more responsive to adjuvant treatments. The other side of the estrogen story is its other beneficial health effects, including a 50 percent reduction in cardiovascular mortality, which kills one in three women in the general population, prevention or amelioration of osteoporosis with reduction in the incidence of hip fracture (in and of itself associated with significant mortality).

“The only way to answer the question of estrogen causing (or not) breast cancer (or anything else, for that matter) is by randomized clinical trial, in which two groups of people who all meet a certain set of criteria are randomly assigned to receive (or not) the intervention in question. To date, all studies of estrogen are compromised by allowing women to choose whether or not they take estrogen. The Women’s Health Initiative that has begun is designed to address this and other questions in a randomized, prospective fashion.

“We have not disentangled all the lifestyle, or ‘environmental,’ factors (age of the start of menses, age of first birth, diet, smoking, alcohol, use of oral contraceptives, lactation, income, education, activity) that have been associated as risks for breast cancer from those that may be causally related to it — an important distinction that tends to be blurred by the media in its coverage of medical reports. Apart from that is the issue of genome and genetic ‘predisposition.’ In point of fact, one cannot divide things between two pots and say that pot A is genetic and pot B is environmental and never the twain shall meet. The environment has direct effects on our genes, causing structural and functional changes in them, and similarly our genes affect our ability to process environmental stimuli. Tying these together is part of the work of molecular epidemiology, which I am currently studying. Getting at the causation of disease is the work of epidemiology as a whole, and trying to bring sub-cellular events into the chain of causation is a science in its infancy!”

cover icon Return to Spring 1998 highlights

Answers to questions toll-free, via Internet or TTY

The Cancer Information Service (CIS), sponsored by the National Cancer Institute (NCI) answers cancer-related questions from the public, cancer patients and their families, and health professionals. The toll-free number 1-800-4-CANCER will connect you to the CIS office serving your area. (The number for hearing impaired callers with TTY equipment is 1-800-332-8615). CancerNet is accessible via the World Wide Web.

At the University of Pennsylvania’s Oncolink site, you can subscribe to an e-mail discussion group on breast cancer. (This is a very active listserv, with as many as 150 messages a day.)

There are many other support and advocacy groups and hotlines around the country. Jean Sachs, M.S.S. ’91, is executive director of Living Beyond Breast Cancer, a non-profit organization in Narberth, PA founded to help women and their families with the complex issues which they may face after completing primary treatment for breast cancer. These issues may be medical or psychological — they can also involve job rights, medical insurance options and credit opportunities. LBBC provides a peer support “Warmline” for anyone who wants to talk confidentially with a woman who has experienced breast cancer. For more information, call 610-668-1320.

The Bloch National Cancer Hot Line in Kansas City, MO, connects newly diagnosed cancer patients with those who have been successfully treated for the same type of cancer. Their number is 1-800-433-0464. This free service is funded by a private foundation and is not affiliated with any hospital or pharmaceutical company.

Eva’s Room, 17th and Locust, Philadelphia, PA 19103 (1-888-CREED-4-U), established by the Linda Creed Breast Cancer Foundation, is named in memory of Eva Georgias ’77. This is a place for women of all ages and those who care about them, to find information and comfort when dealing with breast cancer. The small, cozy room is filled with books about the disease and audio tapes; a staff person is on hand to support and encourage visitors. Eva’s Room also has a computer with Internet access for searching for online resources, and a telephone connection to a breast cancer hotline.

Clinical trials for new treatments
You may be eligible to take part in a clinical trial if you fit its guidelines. The NCI’s CancerNet web site has helpful introductory material about such studies and a list of questions to ask if you are interested in a trial. Your doctor can check a database, called Physician’s Data Query (PDQ), for the latest information about clinical trials being offered around the country for each type and stage of cancer. PDQ, which is updated monthly and supported by the NCI, can be accessed from the National Library of Medicine or a medical library with online searching capability. The PDQ Search Service conducts searches for physicians and other health care professionals (1-800-345-3300). Staff at the Cancer Information Service (see above: 1-800-4-CANCER) also can provide information from PDQ to callers.

Legislation
The Web site http://members.aol.com/BCLEGIS/index.htm links to information about bills currently in the House and Senate on “Thomas,” the Library of Congress site. Check the BCLEGIS site on Mondays for notes on new legislation. (Bills address issues such as the provision of guidelines for breast cancer screening, insurance coverage for reconstructive surgery, and establishing a data bank on clinical trials information for consumers.) The site also provides information for contacting members of Congress.

cover icon Return to Spring 1998 highlights

MHK