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When one of the managers in my office heard I’d been diagnosed with breast cancer, he burst into my room, grinned widely, and said, “Well, look at it this way; it’s a quick way to lose ten pounds.” Known for my own irreverent attitude, I was nonetheless stunned. I flashed on the paucity of wit in our strained relationship and felt angry — he had not earned the right to launch friendly fire my way. Still, the urge to top his crack won out. “Not in my case,” I grinned back just as widely. (Not even if they lop off both of them, you dodo, I thought.) Having breast cancer quickly removes any lingering taboo about boob talk.

For me and for the alumnae whose experiences appear here, cancer brought clarity as well as confusion. We faced fears not of losing our breasts, but of losing our lives and a society that often didn’t distinguish between the two. We grew both stronger and forever vulnerable. We found unexpected gifts. Letting go of vanities and minutiae lightens your load. If you don’t already know, you quickly figure out who and what truly count in your life. And, with its fears, the experience also brings laughter — sometimes nervous, even manic — to leaven your middle-of-the-night grasp of mortality’s dark joke. As one twenty-something mother with breast cancer advised us at UVM’s 1998 Breast Cancer Conference: “If you don’t have a sense of humor, you better get one.”

But, what to call us. No longer grim victims or sufferers, we’ve transmogrified into survivors. Some women call themselves breast cancer veterans, hoping no doubt they won’t be conscripted for another skirmish. Some of the women I’ve met choose survivor; they’ve declared victory and moved on. For them, says Dr. Patti O’Brien ’75, MD’85, who understands the story from both sides of the hospital bedside, “breast cancer is an episode in their lives.” For her and many others, it cannot be dismissed, perhaps ever.

The alumnae who responded to Vermont Quarterly’s open call for breast cancer experiences laid bare personal and frequently painful pieces of their lives to a stranger. And, without prompting, they said why. They want you to know what they’ve learned; they want you to know, as Laurel Stanley ’68, G’75 says, “You can have this and survive”; they want you to know that, if you join their club, they and others like them will help you. Their lives are filled with family, friends, fun, work, and good works. They are survivors by dint of will and spirit. They have my admiration, my deep gratitude, and my fervent wish that they prevail.

What Is Cancer?

“The cause of cancer is genetic, that is due to abnormalities in the genes,” says Dr. Hyman B. Muss, associate director of UVM’s Vermont Cancer Center and director of oncology at Fletcher Allen Health Care. “Cancer is a disease in which cells are able to grow unchecked and can invade normal tissues and spread to other organs of the body.” Cancer occurs when enough mutations accumulate in two specific kinds of genes — those that encourage cell growth (oncogenes) and those that limit cell growth (tumor suppressor genes). In the former, the alteration allows too much cell growth; in the latter, it fails to stop abnormal growth. Cancer cells can spread to other parts of the body via the blood or lymphatic system.

Muss explains it more poetically and graphically. “In cancer, cells are immortal,” he says. “You get breast tissue in your bone, liver tissue in your lung.”

The American Cancer Society estimates that 178,700 women and 1,600 men will get breast cancer this year, and 43,500 women and 400 men will die. The society’s figures don’t include ductal carcinoma in situ, an early-stage abnormality that progresses to invasive cancer in about 30 percent of cases and accounts for about 36,900 more cases each year.

If you read news articles and catch sound bites on the latest clinical studies, you know there’s good news about survival rates, bad news about the growing number of people with breast cancer, and incomplete information on cause, risk, and treatments. You may feel befuddled about your own risk or whether you should get a mammogram. That’s because, educated suspicions aside, no one yet knows what causes breast cancer, and the medical experts can’t agree about mammograms for women under 50. What used to be suspect nutrition — a high-fat diet, for example — apparently is no longer. Of course, there are plenty of reasons to follow a moderate, healthy diet and to exercise. Particularly since, while you’re worrying about breast cancer, you’re eight times more likely to die of heart disease. You can tick off all your breast cancer risk factors in any women’s magazine, but most women who get breast cancer don’t fit any risk profile. Most of the alumnae in this article believed they were not at increased risk. Most also had excellent nutrition, exercised routinely, and had regular mammograms. But, they got breast cancer. As Dr. Susan Love (of Dr. Susan Love’s Breast Book fame) says, “The only thing predictable about breast cancer is its unpredictability.”

Playing With Fire

Nancy Squire Burgess ’72, G’79, a graduate from UVM’s home economics and secondary education programs, can attest to Love’s contention. Her breast cancer saga began in January 1992, when she immediately suspected that the lump she found in her breast was “wrong. I had an uncanny feeling about it,” she says. She was 42 at the time, married, with a young daughter, and working in a public school in Concord, New Hampshire.

Confirmation of her suspicions didn’t come quickly or easily. Four days after finding the lump, she had an inconclusive physical examination and soon after met with a surgeon. A surgical biopsy in March came back benign. However, in the tissue surrounding the lump, pathologists found lobular carcinoma in situ, a cancer somewhat more likely to become invasive than the more common ductal carcinoma in situ, sometimes called a pre-cancer.

“It was a situation where there’s time to do research and meet with consultants,” Nancy says, “and I did a whole lot of research on it.. . . I heard it was a time bomb that may never go off, but not being a big risk taker, I consulted with several oncologists.” She found that 49 percent of the time, this type of carcinoma does not become invasive. But she and her husband, Fred Burgess ’72, “both thought ‘you’re playing with fire,’” she says.

Nancy needed a second biopsy because another small lump had been found in her other breast; it too was pronounced clean, as was the tissue surrounding it. That was in April. In June, she consulted a surgical oncologist in Boston and the next month had a bilateral mammogram. Suspicious calcifications were found, but no one could tell her what to do. “I was looking for someone to say something,” she says, “but they said, ‘it’s your call.’ It was tough to get information then.” Her options were to be monitored with multiple surgical biopsies for the rest of her life or choose bilateral mastectomy. She chose the latter and had surgery in October. The pathology report concluded that her first tumor was invasive, a minute tubular carcinoma. So, in November, Nancy returned to the operating room for lymph-node dissection. They were pronounced clear, and she didn’t require chemotherapy.

A woman who always ate well and exercised, Nancy finds no particular risk factor in her life. “I’ve had a wonderful life, very happy. I’m very lucky,” she says.

Was It The Water In Your Well?

Once you have breast cancer, finding out why may seem pointless, but that quest is what engages researchers seeking to prevent and cure the disease. Hardly a day passes without a report linking one of our foods, household products, or personal habits to cancer; we’ve all become uncertain experts.

Studies implicating one villain get countered by other studies. The recently released, 14-year Harvard study of high-fat diets, for example, reversed earlier warnings. It found “no evidence that a high-fat diet promotes breast cancer or that a low-fat diet protects against it.” Dr. John Glaspy of UCLA comments, “We should just accept that good scientists can’t tell you yet what to eat to minimize your breast cancer risk.”

That doesn’t keep us from targeting suspects, however. Almost every woman with breast cancer has a theory — or at least a hesitant guess — about why she got it. Linda Blow O’Connor ’64 wonders “if personality didn’t have something to do with it,” noting that she reacts “to stresses that don’t bother others.” Helen Whitney ’82 wonders if growing up near a power station caused hers, or was it the well in her family’s garden? The pesticide DDT, a known carcinogen, was banned in 1972, but it has a long life and was used extensively in farm country, she recalls. Patti O’Brien was a “DES baby,” meaning her mother took diethystebestrol, a synthetic hormone, to prevent miscarriage. Although DES is linked to cervical cancer, O’Brien believes it played a role in her breast cancer. Researcher and author Liane Clorfene Casten (Breast Cancer: Poisons, Profits and Prevention) agrees that DDT and other pesticides are suspect, as are DES and other synthetic hormones.

If you started having periods young, entered menopause late, didn’t have children, or had your first child after 30; if a close relative had breast cancer; if you took birth control pills for a prolonged period before age 30; if you’ve taken hormone replacements for several years; if you’re well educated; you might be at higher risk for breast cancer. Dr. Muss says each factor increases your risk, but factors are not “necessarily additive.”

In her book, Understanding Breast Cancer Risk, Patricia T. Kelly reports that women frequently feel they are to blame for getting breast cancer because they didn’t do breast exams, had had abortions, didn’t breast feed, were unable to love, or had guilt about their misdeeds.

Dr. Muss echoes most of the scientists I interviewed or whose research I’ve read. ”We don’t know what causes it. There probably are a host of causes,” he says. He suggests taking control as best you can through good diet, physical activity, and using plant estrogens such as soy foods (tofu, tempeh, miso, for example) in your diet to lessen heart disease risk — a very real risk for post-menopausal women not taking hormone (estrogen) replacement. Author Dr. Andrew Weil also recommends eating soy products and, if you eat meat, beef that’s hormone and antibiotic free.

Many breast tumors are what scientists call “estrogen-receptive.” Women in that category cannot be prescribed hormone replacement therapy (HRT) for fear of recurrence. In a Swedish, long-term study of post-menopausal women on HRT, 10 percent more women got breast cancer than statistically anticipated. Women on HRT have a higher incidence of breast cancer but a lower mortality rate from it.

Am I The 1-in-10?

Statistics about risk have added to our worries. Do 1-in-8 or 1-in-9 or 1-in-10 women get breast cancer — all figures reported regularly? The answer is none of the above. If you’re young, you have a higher lifetime risk of getting breast cancer because statistics predict you’ll be around a long time, but you have a lower risk for any given year. From birth to age 50, women have a 2 percent risk of getting breast cancer; from birth to age 70, about 6 percent. In her book, Kelly says we’d have to live to 110 for the 1-in-10 risk to be valid. All those figures apply if you’re white. Black women have a lower risk, but are approaching the risk of white women. Asian women have lower risk than either. Native Americans have a very low incidence of breast cancer, but high mortality rates from it.

Geography also weighs in on risk. Women in New England die from breast cancer at a 25 percent higher rate than women in the South or West, although the incidence of the disease is only 3 percent higher in New England.

More men get breast cancer now than ten years ago and more die — possibly because men don’t expect to get breast cancer, don’t do self exams, and may put off going to doctors. Men have increased risk if a blood relative — male or female — has had breast cancer.

In Understanding Breast Cancer Risk, Kelly warns women to be wary of how risk is stated. If a study says that something about your life increases your risk 50 percent, check what the basic risk is. If it’s 1 percent, a 50 percent increase translates to 1.5 percent; a 100 percent increase, to 2.0 percent.

Some women carry higher risks, however, because of unique genetic factors. David Yandell, director of the Vermont Cancer Center at UVM, says approximately 5 percent of breast and ovarian cancers have hereditary links, meaning strong family connections to the disease. Dr. Marie Wood, UVM assistant professor of medicine and director of Fletcher Allen’s Familial Cancer Program, notes that women with defects in the gene known as BRCA-1 have a higher, lifetime risk of breast and ovarian cancers. A higher lifetime risk also attaches to defects in the BRCA-2 gene, more common in Jews of European descent. Karen Stabiner, author of To Dance with The Devil: The New War on Breast Cancer, says that 5 percent of women with a healthy copy of the BRCA-1 gene will get breast cancer by the age of 40, and 16 percent of women with a mutated copy will. Although genetic screening is available, Wood says, it is costly — anywhere from $250 to $2,500 — and usually not covered by insurance. She also recommends not having genetic testing at the time of cancer diagnosis. “It’s overwhelming for the patient to deal with cancer,” she says, let alone face information that their families also may be at risk.

About one-fourth of women with breast cancer have an alteration in a gene known as HER-2/neu. Normally, there is only one copy of that gene in each cell, but when an alteration occurs, too many copies are produced, causing unregulated cell growth.

A Game Plan

Dr. Patti O’Brien ’75, MD’85 is one of the HER-2/neu-positive women. An assistant professor/doctor at UVM’s College of Medicine and Fletcher Allen Health Care and instructor in Physical Therapy, she has brightened her cluttered office in Rowell with her children’s art and photos. She calls her son her graduation baby — she felt his first kick during her UVM Medical College graduation — and her daughter, her residency baby. When we talked in late spring, she was busy arranging a visit to Germany, to learn more about her specialty, lymphedema, but her top concern was getting the kids to the airport to see her off.

Patti was 43 in 1996, when she found a lump in her breast. A recent mammogram had raised no suspicion, and she’d previously had lumps, cysts, even mastitis during breast feeding. But, her grandmother had died of breast cancer, and, as a doctor, she was too knowing to ignore this symptom. Although only one lump was palpable, her surgeon found five tumors. Her lymph nodes were positive, and her cancer had spread. The diagnosis effectively rewrote her life, particularly for the next year, which filled quickly with treatment protocols. She began with a bilateral mastectomy, because, she says, “the risk was so high” that the cancer would appear in her other breast. Next up was chemotherapy. Then, Patti joined an out-of-state clinical trial and underwent a stem-cell transplant.

An extreme treatment meant to save or extend a life, the stem-cell procedure sounds like the R-rated movie scene where you cover your eyes and hum a tune. Women already in danger of dying have their stem cells — young, bone marrow cells — removed and frozen. The women then endure ultra-high doses of chemotherapy — five to twenty times stronger than normal — to kill cancer cells. Their stem-cells are reinfused after the course of chemo. Not everyone survives the treatment — the risk of dying is about 1-2 percent, says Dr. Muss. Patti and women like her embrace the procedure because their survival odds likely would be poorer without it. However, the jury’s not unanimous on that verdict.

During the stem-cell transplant, Patti also received immuno-modulation drugs, which aim to boost the body’s surveillance of tumors. That was followed by a month of the experimental interleukin-2 drug, self-injected into her abdomen, and then, radiation therapy.

Many women choose not to have reconstructive surgery following mastectomies. Some use breast prostheses, others go without. They’ve had as much invasive treatment as they can take. That was true for Patti, but she also says, she’s “completely comfortable with her body.”

The severity of her cancer necessitates vigilance. Patti regularly gets bone scans, x-rays, and blood tests useful in predicting recurrent disease. The blood tests “are not highly specific or sensitive,” she says, but they are one more tool. She’s also on tamoxifen, a newer drug proving effective in preventing recurrence in high-risk women.

Patti believes her cancer will recur, but still thinks, “I’m very lucky. I have such access to information.” That’s important to her personality. “I’m someone who always has to have a game plan,” she says. Although she likes control, she saves it for the big issues. “Papers out of place — no problem. Cancer cells out of place — a few, okay — but not big ones,” she says.

Mammography Is Not Perfect

Suzanne Germain ’76,’85, a nurse practitioner, has a practice in Bristol, Vermont with her husband, Dr. C. Edward Clark MD ’82. If asked in 1997, she would have rated her health as excellent. A petite, quiet-spoken woman, at 43 she ran three miles a day, grew organic vegetables in her backyard in Lincoln, and loved her husband and two daughters and her work. She carried then, as now, a terrible sadness. Her mother had had a mastectomy at 34 and at 39 died from breast cancer. Suzanne was 8, the oldest in a family of five children.

Because of her family history, she began having mammograms early in her life. The past eight, she says, had been negative. Then, in the course of a routine breast self-exam, Suzanne found a lump and went immediately for another mammogram. It, too, was negative. She thought it not a likely diagnosis, and she was right.

“Mammography is not perfect,” says Berta Geller, UVM research assistant professor in the Office of Health Promotion Research. She estimates that “10 to 20 percent of breast cancer” is missed. Mammography errs particularly with younger women, whose breast tissue is dense, making changes difficult to spot or interpret. That’s why Geller believes strongly in women doing regular breast exams.

Suzanne underwent surgery, which revealed a 10 cm tumor (considered very large), an infiltrating adenoma. The lymph nodes under her arm were dissected during the surgery, and seven of the nodes tested positive for cancer. Because of the size of her tumor and its spread to the nodes, Suzanne’s cancer was labeled Stage 3 (tumors more than two inches — Suzanne’s was about four inches). And, because of the statistical likelihood her cancer would recur, she had a bilateral mastectomy, in which all breast tissue is removed in both breasts.

Suzanne, like Patti O’Brien, had a stem-cell transplant. “I didn’t want to do stem-cell,” she says, “and I got second and third opinions. But everyone agreed I should.” The recent news interpretations of stem-cell studies have upset her. One such article in the Toronto Star newspaper tried to sort out the conflicting results. While studies confirm the procedure is effective in leukemia and lymphoma, the paper reported, its efficacy in breast cancer is less clear. One study, at the University of Witwatersrand in Johannesburg, found that 25 percent of women with bone marrow transplants had a cancer relapse after five years, compared to 66 percent of women on more conventional therapy. A recent Associated Press article reported that the latest studies say the procedure doesn’t improve longevity, although it likely keeps women relapse-free for a longer period.

“After I went through all that,” Suzanne says, trailing off and looking sad.

Patti’s perspective should ease Suzanne’s concerns. The press, she says, has “a moral responsibility to improve the way they report health. I feel very good about having been in a clinical trial in stem-cell. I do believe the bone-marrow transplant has helped me.”

Part of the problem is that not many women have had the procedure — possibly only 12,000 in the United States in the past decade — and most of them were not in the clinical trials that comprise the reported results.

Treatment 101

Known for her directness as much as her skill as a breast surgeon and author, Dr. Susan Love is probably least popular with colleagues for her description of their profession’s approach to treating breast cancer: “Slash, burn and poison,” she calls it, because it horrifies her at the same time she bends to its necessity. Women who’ve had to enroll in these treatments appreciate that understanding. Most of the time, success seems apparent, but sometimes the cure seems worse than the disease.

Helen Whitney ’82, a nurse at Children’s Hospital in Boston, knows first-hand how slash, burn, and poison can backfire. She was 35 when the lump she found was diagnosed as ductal carcinoma in situ, sometimes called a pre-cancer. “I was hysterical initially,” she says “and wanted both breasts off.” She gave it more thought, got more information and medical input, but still wanted one mastectomy. She hoped to avoid radiation treatment, which can create scar tissue and cause chest-wall changes. Helen settled on a lumpectomy, in which just the lump and surrounding tissue are removed and then the patient has about a six-week course of radiation. Surgeons remove surrounding tissue to be sure they have clear margins, tissue without any trace of cancer cells. In Helen’s case, they couldn’t get clear margins, because she had extensive ductal carcinoma.

A mastectomy was necessary after all, and Helen opted for immediate breast reconstruction, a nine-and-a-half-hour surgery. Four days later, a blood clot formed and she had to undergo the surgery all over again. A vein was grafted from her arm. She became anemic and was transfused twice. She woke up in intensive care.

Although she escaped the dreaded radiation treatment, she now needed chemo. But after just one of six planned sessions, she had a severe, and rare, reaction to one of the six drugs in her chemo recipe. She was hospitalized for nine days with a life-threatening, almost-ruptured intestine. “I have chemo envy,” Helen says, “because chemo improves your chances of survival.”

Side effects from treatments range from the serious, like Helen’s, to the annoying, but more common. Mary Ellen Anderson ’68 says she had more lethargy than illness from her radiation treatments. Joyce Marx Flynn ’48 says her first two chemo treatments made her “groggy. I’d sleep for 18 hours,” but she never vomited. Tests showed that one-third of her white count had been knocked out, she says, and an adjusted chemo level made her feel much better. Nancy Burgess recalls that she got “hideously sick” from anesthesia.

Other serious risks from treatment, Patti O’Brien says, include heart toxicity — the chemo drug adriamycin is the culprit in that — or a second malignancy, also related to chemo. Surgery can leave scars and cause lymphedema, swelling in the arm and hand from lymph node dissection. O’Brien had a slight case of that after surgery, made worse when she returned to weight lifting. She now wears a compression “sleeve” on her arm and has made lymphedema and treatment for it well known through her research and teaching.

Tamoxifen increases the risk of uterine cancer and can cause cognitive changes. Estrogen “helps us think,” says Patti, and tamoxifen earns its rep by suppressing estrogen.

A major side effect from chemo treatment is premature, sudden menopause. Patti O’Brien says she was “slammed into it.” Barbara Crandell Cochran ’72 said “menopause was ushered in after three chemo treatments.” Since she can’t use HRT, she has had some osteoporosis problems, but has been on tamoxifen for the past three years with no side effects. Mary Rusnak ’68, G’90 was fortunate that she’d had three children before she entered menopause at 29 following treatment for her first occurrence of breast cancer.

Research

The recent surge of research into breast cancer’s causes and treatments owes its impetus to breast cancer survivors, who formed coalitions, lobbied members of Congress, and kept the issue in the headlines. Because of them, scientists have had access to more funding, more information — through the formation of mammography and cancer registries — and more research subjects. Joyce Marx Flynn took part in a UVM research project in Lee County, Florida conducted by John K. Worden, research professor in the Office of Health Promotion Research, and others. The Breast Screening Program project created and evaluated a program of public education and training for medical practitioners. Mary Ellen Anderson enrolled in a two-year clinical study at Stanford University, where researchers are seeking a way to detect breast cancer through blood tests. Last year, Laurel Stanley participated in a clinical trial at UVM of a procedure developed by Dr. David Krag, associate professor of surgery and Fletcher Allen surgical oncologist. Called sentinel node biopsy, it could reduce significantly unnecessary lymph node dissection.

Normally, many lymph nodes are removed in breast cancer surgeries, almost always from the armpit, and are tested for cancer cells. The surgery requires a drain, can leave a patient with lymphedema or range-of-motion problems, and compromises to an unknown extent the patient’s immune response. If the nodes test negative for cancer — which they do in most cases — the patient has had unnecessary surgery. Also, node dissection is an imperfect prognosticator of metastatic disease. Dr. Krag says that in 20 to 30 percent of women with negative nodes, the disease has spread, and in 30 percent with positive nodes, it has not. Despite these statistics, testing the sentinel nodes remains the best tool available to detect the spread of cancer in at least some patients.

In Krag’s sentinel node procedure, the surgeon injects a radioactive tracer into the breast around the cancer site. Using a hand-held gamma detector, the surgeon locates the nodes that take up the tracer — the sentries are first in the line of defense and, therefore, most likely to have cancer cells if any nodes do. Only women who have positive sentinel nodes will then have conventional axillary surgery and dissection. Although in its early experimental stage, the procedure shows a 97 percent accuracy rate and soon will be subjected to a national trial funded by the National Cancer Institute.

Dr. Bronagh Murphy, a former Vermont Cancer Center/Fletcher Allen medical oncologist, delivered good research news at the 1998 Breast Cancer Conference to women who over-produce the HER-2/neu oncogene and develop aggressive breast cancer, like Patti O’Brien.

Herceptin, a monoclonal antibody (an artificially produced antibody that neutralizes just one specific antigen or foreign protein) works against the HER-2/neu. It has low toxicity and shows promise in clinical trials of halting the deadly cell division caused by the altered HER-2/neu gene. Researchers hope it may lead to a vaccine for those with the defective genes. Herceptin is distributed through a lottery to women with progressive or advanced disease after they’ve already had two or more therapies.

In other promising research, Dr. Seth Harlow, a UVM/Fletcher Allen oncology surgeon, will lead Vermont’s part of a national, five-year trial comparing tamoxifen and raloxifene. Post-menopausal women believed to be at high risk for breast cancer will be assigned randomly to one of the drugs. Researchers hope that raloxifene, an osteoporosis-prevention drug, will equal tamoxifen in breast-cancer prevention but with fewer side effects. Tamoxifen puts women at a higher risk for uterine cancer and blood clots in the lungs.

Coping And Healing

Despite the best care science has developed, half the patients of Dr. John Graham-Pole die. A pediatric oncologist at the University of Florida, Graham-Pole told a UVM audience last year that, to continue his work, he has had to grasp the limits of scientific curing and open himself to the art of healing. He and his patients engage in art and play — spontaneous and planned. “We need humor in our lives,” even in the face of death, he believes.

Nancy Burgess also speaks of the importance of humor. It “plays a huge role — slightly black humor,” she says. It helps those around you, too. “Finding something to laugh about puts them at ease.” It also helped her deal with the staff at her insurance company, several of whom were rude and insensitive. She can laugh now as she mimics their incredulity in response to her revised claim for a double, rather than single mastectomy. “What? You need two?” The principal of her school was even harsher, threatening to fire her if she didn’t return immediately to work.

Karen Kitzmiller, a Vermont state legislator, says after her diagnosis, she “cried daily for two or three months, then realized it was a waste of time bemoaning fate when I still felt well.” So, she “took up the violin, played tennis, meditated, and let others into my life and accepted help.”

“I have a lot of anger,” says Patti O’Brien, “but need to get it out productively.” She relies especially on her support group meetings, part of the research on coping with breast cancer conducted by Bruce Compas, UVM professor of psychology (see page 38 for a review of Compas’ research). Patti also advocates for breast cancer survivors and for research through the National Breast Cancer Coalition, in addition to teaching and working in her practice.

Helping women sort through the myriad treatment options is a primary responsibility of caregivers at the Breast Care Center (BCC) at Fletcher Allen. One of a handful of such centers in the country, the BCC is a comprehensive, multidisciplinary center offering breast cancer patients everything from the opportunity to participate in clinical trials to psychological support to genetic screening. BCC psychologist Ellen Atkins G’92 says the treatment options can be overwhelming. “I work with patients to help them develop skills to cope with cancer, and to give them recommendations on how to get through each step of treatment,” she says. “And because breast cancer affects the lives of family members and friends, I often work with them, too.”

Sometimes, you cope by rejecting too much information. Mary Ellen Anderson ’68 of Pacific Grove, California, felt that way reading Dr. Susan Love’s Breast Book. She “read the gloom and doom and fell apart.” She gave away her copy and, after that, read “only what would help me.” Mary Ellen found a lump in September 1994, the year after she’d retired as a commander in the navy. Although her mother had died of breast cancer, she wasn’t overly concerned. She’d had yearly mammograms, but felt she didn’t “have time for this.” She’s grateful now for the friends who urged her to check with a doctor. She had an infiltrating ductal carcinoma, and two of her lymph nodes tested positive for cancer — one, she was told, was completely replaced by a tumor. Mary Ellen chose a lumpectomy, followed by radiation. Without the radiation, her breast cancer had a 40 percent chance of recurring, she says. She followed that with six months of chemotherapy, but first enrolled in a therapy that helped her accept the chemo. A nurse suggested she change her negative attitude about chemo or she’d have a hard time with it.

She also found better ways of coping with stress, she says. “I try not to react. ... I take time to enjoy things. Don’t react negatively when there’s nothing you can do,” she advises. She also changed a diet that was too weighted with fatty foods, but allows slips. “You can’t eat on fear-based ideas,” she says. She’s found another outlet in aerobic exercise — “good for the bones, and cancer doesn’t like oxygen,” she explains.

Survival

A report from the House Committee on Government Operations, the result of a hearing in 1994, says that approximately 97 percent of women with localized breast cancer survive at least five years; 76 percent of women with cancer that has spread regionally survive that long; about 21 percent with distant metastases do. Although the survival rates go down after five years, they are improving overall, particularly for women with estrogen-receptor-positive tumors.

Some of those in the lucky statistics group have survivor’s guilt. Joyce Flynn’s friend died from breast cancer while Joyce was being treated. “I’ve been lucky,” Joyce says, and “I feel a little guilty.”

I think often of a woman I met during radiation therapy. She was 40, and she and her husband were about to begin the process of adopting a child when she was diagnosed with an especially aggressive breast cancer. She’d been through all the treatments then available and knew she was doomed. “I get so angry at people who complain about mastectomies,” she told me. “They lose a breast. I’m going to die.” And, she did, about a month later.

Things To Do Instead Of Worrying

Although the answers to cause and cure remain elusive, you needn’t be paralyzed by inaction. Researchers and survivors alike recommend that you do regular breast exams and strive for prevention through healthy eating, exercise, and enjoyable activities. At the very least, you’ll be enjoying life more and preventing other ills.

Unless you have reason to get one earlier, you should get a baseline mammogram around age 40 with annual or biannual repeats — your doctor or nurse practitioner will advise which. Nancy Taggart Tilley ’79, who works for the American Cancer Society, says she has seen many women newly diagnosed with breast cancer. “I hope your article stresses the annual mammogram,” she says. “So many women I have seen were in their 30s and with no family history of breast cancer. This disease strikes the young, the physically fit — it is not just our mother’s and grandmother’s concern.”

If you don’t know how to do a breast self-exam, visit your local breast center or medical caregiver for instructions. Watch for lumps, thickening, swelling, distortion or tenderness; skin irritation or dimpling; or nipple pain, scaliness or retraction. Most breast pains signal benign (non-cancerous) conditions, and most breast lumps are not cancer. But, you can’t tell without having them checked. Don’t hesitate to have a symptom checked. My family doctor says, happily, much of his practice is ministering to “the worried well.”

How To Help If...

Almost all the women in this article raved about the support they got from spouses, families, and friends. Home-cooked meals, lifts to radiation therapy, child care; they were all needed and greatly appreciated. And remember that cancer treatments don’t heal all the ailment. Suzanne Germain says that the hardest time usually comes when treatments are over. “People expect ‘you’re done, get on with it’,” she says.

My favorite how-to-help anecdote came from Gretchen Casey, who had a lot of support. “But the one that stands out,” she says, was the day “a neighbor walked in, said nothing, and cleaned my bathroom.”

And, if you’re a true intimate, humor will help. Journalist, author and children’s television host Linda Ellerbee, who sobbed when she first saw herself in a mirror after a double mastectomy, laughed about it with two childhood friends. “They said they were probably the only two humans who remembered me before I had breasts,” she says.

And, if you find yourself tapped for membership in this club, take courage from these alumnae. Think about:

Mary Ellen Anderson ’68, G’69, who blends the wisdoms of self-reliance and surrender. “Find people to take care of you; don’t be the strong one,” she says. But, remember, “this is not a precise science — don’t turn your body over to doctors.” She took a tape recorder to all her doctor visits and highly recommends the practice. “You’re emotional; you don’t know the medical terms.” She took part in this article, because “so many have helped me; it’s my turn to help someone else.”
 
Nancy Squire Burgess ’72, G’79, whose aggressors included her insurance company and employer, and who learned “to take the bull by the horns” and become “extremely more assertive.” At her new job, at RSVP (Retired Senior Volunteer Program), Nancy has met “some fascinating people who do not let age or infirmity deter them.”
 
Gretchen Junk Casey G’71, who advises women not “to go to the doctor alone — you can’t process the information.” Although he, too, was stunned by her diagnosis, her husband went to all her appointments and helped her piece together the information. “Bring a friend, even a secretary to take notes,” she says, because doctors now don’t tell you what to do. They lay out options and leave it up to you.
Barbara Crandell Cochran ’72, who continued to exercise despite the treatments that made her feel “like I was pregnant the whole time.” She’s learned to take small things in stride. Not even a five-hour airport delay on December 23 rattled her. “We were on our way to Scotland (her husband’s native country) and got stuck at Heathrow. “Someone said, ‘you’re awfully calm.’ I was.”
 
Suzanne Germain, ’76, G’85, who never missed a rehearsal for her a cappella group, WomenSing, not even when she was hospitalized and could barely speak. She also began a breast cancer support group for women in her area. She volunteered to help with this article to let “people going through this know they are not alone.”
 
Liz Niles Elder ’54, who, after facing breast cancer, found the grit to give up her decades-long smoking habit. She and her husband kicked it together in 1997.
Joyce Marx Ray Flynn ’48, who abandoned her plans for medical school when she fell in love with Bob Ray ’50 and “never regretted it.” But, recently, she dreamed “I was going back (to medical school), at my age!” Joyce volunteers at a media center and in a nursery for premature babies. She says, “I get to feed and cuddle them.”
 
Patti O’Brien ’75, MD’85, whose advice is to “Draw a line— do as much as you can with your life, but don’t live in denial.” And, if you go bald from chemo, “Put on a hat, laugh, get on.”
 
Linda Blow O’Connor ’64, who scheduled chemo for her colon cancer on Fridays, “so it didn’t affect work” and so her nursery school kiddies wouldn’t worry. She and her family and the people around them remained “extremely positive” through both her cancers.
 
Mary Cota Rusnak ’68, G’90, who played 60 rounds of golf last summer with her husband, George, whom she calls “the model of what a husband should be” in good times and bad. She passes on her secret cure for chemo nausea given to her by a nurse — beer. It worked much better than the drugs prescribed by her doctor, she says.
 
Sharon Newton St. Onge ’64, who, all alone, hiked the Appalachian Trail over six months — a celebration of and symbol for her new life after cancer.
 
Laurel Stanley ’68, G’75, who “had to learn to talk about my life in risk factor terms, and what I finally had to grasp is that you take risks every day but don’t think about it. When you have to ... it’s frightening.” Despite the fear, she says, women with breast cancer should “step back, read about it, take some time” before making decisions.
 
Helen Whitney ’82, for whom every step of treatment seemed to go wrong and who recently learned her cancer has spread to the pleura (covering) of her lung and to her sternum. Because her breast cancer tumor was estrogen-receptor-positive, she is being treated with lupron, an estrogen suppressor. She has left her nursing job, but plans to volunteer at a local non-profit organization.

“Survivor” may be the right word, after all. It expresses hope and a belief in healing, if not cure. It has tinges of heroism and luck, of walking out of odds-against, death-dealing situations. Perhaps that’s why women with breast cancer wear the term well, even those for whom it is a fickle descriptor. They may be short-timers in life’s lottery but they never stop hoping to draw a high number. They hope to have the last laugh.

Experiences of Alumnae