Rebels With a Cause

Stories of local women with breast cancer
by Meg Underwood Brugeman
The Rhode Island Breast Cancer Coalition

They are a most improbable group of warriors. They are nurses and businesswomen, homemakers and educators, judges and students, nuns and even former nuns. They have traveled the world and rarely strayed beyond Rhode Island's borders. They are of nearly every race and religion. Breast cancer, after all, is an equal opportunity disease. And, while their backgrounds are as unique as their fingerprints, they are of a single mind when it comes to advocacy.

The members of the Rhode Island Breast Cancer Coalition (RIBCC) are tireless women with a score to settle, and they have chosen to settle that score through an all-out battle they hope will lead to the eradication of breast cancer. The coalition is dedicated to fighting the disease through legislative channels, to ensure all women have complete access to screening and treatment, and that no stone is left unturned in the search for a cure. Their advocacy is their hope, their strength and their glue.

They have also adopted some controversial, often unpopular, positions. Citing recent studies, for instance, the RIBCC has stated that breast self-exam is of little benefit to women. Similarly, researchers at the national organization's conference last spring presented a number of studies showing that mammography may actually cause more harm than good, primarily through over-diagnosis and over-treatment. Bucking conventional schools of medical thought does not always make the group wildly popular, but a cure, not popularity, is their goal.

RIBCC cofounder and chair, Marlene McCarthy, H.L.D., pulls no punches when it comes to the harsh realities of screening and fundraising for breast cancer. "That breast self-exams show no evidence of benefit is a bitter pill, but hype is of little benefit to women. We want to believe there's something we can control," said McCarthy. "It is also a bitter pill that nearly 50 percent of the donations collected in walks and runs goes to marketing and administrative costs. We're walking with someone's name on our chest, but don't know how much of that money goes to direct care and quality research."

Many of the advocates make the annual pilgrimage to Washington, DC, to join hundreds of members of the National Breast Cancer Coalition (NBCC) for its conference, largely at their own expense. Plenary sessions and workshops, led by respected scientists from every corner of the globe, are dedicated to educate advocates on medical advances, clinical trials, the organization's legislative priorities, and the fine art of lobbying. The conference culminates with a rally on Capitol Hill and lobbying efforts with Congress.

Arlen Specter (R) of Pennsylvania referred to the NBCC as possibly the strongest lobbying organization on the Hill. Rhode Island legislators, who receive countless phone calls, e-mails, and visits from the advocates, will attest to their ferocity of purpose and relentless efforts to affect legislation for those who live with, and die from, breast cancer.

The NBCC has been instrumental in ensuring passage of a number of legislative initiatives, including securing research funding through the Department of Defense for a unique, peer-reviewed program. Congress has appropriated in excess of $1 billion to the initiative since its inception in 1993. The DoD Breast Cancer Research Program may very well be the coalition's signature piece of legislation, since its research methods continue to be the model for other research programs.

Women who volunteer for the RIBCC are also of a single mind when they are asked why they continue their advocacy. To them, the question seems almost rhetorical. To give back the support they found at the coalition. To find a cure. To ensure that all women diagnosed with breast cancer are given equal access to quality treatment and screening. To provide women with the support they need emotionally, and the information they need physically. To turn their fears into action. To give hope to their daughters. And themselves.

Rhode Island rates fourth nationally in the incidence of breast cancer; second in mortality. The statistics paint a frightening picture for Rhode Island women - 24,000 of whom suffer from the disease - and in spite of increased research, the causes of the disease continue to elude us. In response to the disproportionate number of questions to answers, Rhode Island's Senator Lincoln Chafee (R) has sponsored legislation that would authorize the National Institutes of Environmental Health Sciences to establish several "Centers of Excellence" throughout the United States to investigate links between the environment and breast cancer. The bipartisan bill was cosponsored by Senator Harry Reid (D-NV). Join the breast cancer advocacy movement. Call the RI Breast Cancer Coalition at 800-216-1040 or visit www.stopbreastcancer.org

Resources supportive of the stories presented here are available at the multi-media Resource Center operated by the Rhode Island Breast Cancer Coalition. The Resource Center provides a lending library of helpful books, periodicals, tapes, videos, information of clinical trials and complimentary therapies and a current listing of support groups and educational programs offered statewide. Call the Coalition at Voice/TTY 822-7984 or toll free 800-216-1040.

While seldom public with their personal stories, some members of the RIBCC shared their experiences with the hope they may help other women and their families.

Laura Neff's friends describe the Newport woman as unyieldingly kind and selfless, a woman so filled with empathy that she shoulders the burdens of others with a weight that must seem unbearable. Her faith in God, they say, is also unyielding, and what sees her through.

Telling her teenage son was difficult, but could not compare with trying to explain the disease to her 8-year-old daughter. Rather than alarm the child, Neff responds to questions that occur to her daughter as she notices a scar or inquires about a doctor visit. "I try to weave it into things, gently talk about it," said Laura. "My heartache is that I wouldn't be there for her. I just love her so much."

Neff, a registered nurse, laughs softly when she remembers her reaction to a routine mammography screening that detected early stage breast cancer. Her doctor, said Neff, informed her the pattern microcalcifications revealed by the mammogram suggested she had "the good cancer." "I thought that was the oxymoron of the century," she said.

Only 40 at the time, Neff had no family history of breast cancer, and only agreed to the mammogram to set an example. She was a women's health educator at a California hospital dedicated to the care of women and children, and felt it important to practice what she preached. The results of the mammogram were completely unexpected. "It was surreal," she said solemnly.

The diagnosis of Ductal Carcinoma in Situ, often considered a precursor to cancer or a "pre-cancer," would usually be treated with a lumpectomy and radiation. It is believed that most, if not all, breast cancer begins in the milk ducts, and if caught before it has penetrated the walls of the duct, the cancer cannot enter the lymphatic system. As a result, true DCIS is not invasive, hence the physician's characterization as a "good cancer."

A lumpectomy, however, is only considered successful when the surgeon is able to determine clear margins have been achieved: that the tissue surrounding the area removed is tumor-free. In Neff's case, the DCIS had spread throughout the duct system and was present in all four quadrants of the breast. A mastectomy, the removal of the breast, was recommended.

Unfortunately, the mastectomy revealed more bad news. An invasive tumor, not detected by mammography, was found by pathologists. Although her lymph nodes did not show signs of cancer, Neff was also treated with chemotherapy.

Recently, a chest x-ray for a nagging cough showed lesions on Neff's lungs. No definitive diagnosis on the abnormalities has been decided, and yet another series of questions, tests, and decisions lay before her.

Being angry or sullen about her situation makes little sense to Neff. At one point, she admits, her faith wavered slightly, and she raged at God for the tenuous state of her life. "When I was done, nothing was different, nothing had changed. I realized how futile my anger was," she said.

If Laura Neff is the heart of the RIBCC, Marsha Mantia is the soul. The woman from Warwick has been appointed the unofficial mother of the group, keeping her ducks in line with a stern look, while being there for anyone in need of a shoulder to cry on. Mantia's very presence seems to evoke a sense of calm in those around her, as all good mothers are able to do.

Diligent about her annual mammograms, Mantia said she was taken aback when, at age 53, radiologists found a suspicious area. She felt ill-prepared, she admitted, to make the important decisions necessary in her diagnosis and treatment. "You are trying to keep your feet on the ground," she said, "while your head is spinning."

At the advice of Marlene McCarthy, who was working out of her dining room at the time, Mantia purchased a small notebook and kept it with her to record questions as they come to mind, and write the answers given to her by doctors. "I wrote down everything," she said. "Being so nervous and upset, I was afraid I'd forget important information."

Although not initially one to direct her own fate, Mantia quickly learned the importance of being an advocate in her own health care. She hand-carried her pathology slides to a Boston hospital for a second opinion, obtained copies of all medical and pathology reports, and questioned every recommendation and opinion. She credits the coalition for helping her become an informed patient, and her health insurance for allowing her to seek the opinions she needed for peace of mind.

The experience, according to Mantia, has drawn her much closer to her family, and has changed her priorities. "My list of important things has become very short."

She is not without fear, however. Like many who have been diagnosed with cancer, Mantia fears a recurrence. That thought stays on the periphery, though. "It's not healthy to think about that all of the time. I've learned to live with the situation. As long as I'm going to live, I'm going to live."

Like a scene from a movie, Jan Lisnoff woke to see a calendar on the hospital wall showing the month of August. She thought it was June. "I asked my daughter, who was sitting with me, what had happened. I just couldn't believe it," said Lisnoff.

Slowly, she pieced together the foggy puzzle before her. Lisnoff had been given a bone marrow transplant to combat her stage four breast cancer. Weak and fragile, she had then been subjected to high dose chemotherapy that sent her into a semi-comatose state. There she remained for nearly three months. Eventually, with her muscles atrophied, liver failing, and almost no chance of recovery, doctors consulted with her husband and recommended he request the removal of the life support system. He refused. Within days, she became conscious and, miraculously, her liver regenerated.

It would probably be easier for Lisnoff, a soft-spoken woman from Narragansett, to list those things in her life that have remained the same since then. New life was breathed into her marriage. Her work as a speech pathologist, which had been the focus of her life, took its rightful place behind her family. Lisnoff began an exercise regimen to strengthen her muscles, and became a devout vegetarian. She found time to enjoy friends and family, and looked for ways in which to reduce stress in her life. The complete shift of priorities gave Lisnoff a sense of peace and contentment she had never known before.

Within a year of her release from the hospital, and during her dedicated effort to return to good health, Lisnoff became ill. Terrified of a recurrence of the cancer, she waited for a call from the doctor. When the call came, and the doctor began with, "I'm sorry," she froze. When the diagnosis was delivered, the physician was taken aback by her jubilant reaction to the news. "She said, 'I'm sorry, you have Lyme Disease,'" Lisnoff said with a short laugh. "I was only too happy to have Lyme Disease." Treated with antibiotics, she was quickly, happily, back on the road to recovery.

"I feel I have a part to play in the coalition because of all that I have gone through," said Lisnoff, who facilitates classes on Lifestyle Changes at the RIBCC Resource Center in Coventry. "People sometimes ask me why I don't move on, or say, 'Don't you want to forget?' My experience has changed my life completely. I don't want to forget. It is important to me to be involved. And maybe, as Sue Love [breast cancer researcher and author] said, we'll have a cure in five years. I may be altruistic, but we have to try."

When her one-year-old daughter playfully jumped on Jean Albert one afternoon, there was a shock of pain in her breast. Checking the area, she discovered a lump. At age 36, with a very healthy lifestyle and no family history of breast cancer, the lump did little to alarm her.

Just to be cautious, she contacted her gynecologist sometime later, who was convinced it was a cyst, and was even able to aspirate some fluid from the lump. As a precaution, Albert's physician ordered an ultrasound of the area. The results of that test were still inconclusive, and it became necessary to biopsy the lump.

Albert remembers coming out of anesthesia in the recovery room that day to see her husband's concerned expression. The lump was, in fact, malignant. The cancer was determined to be stage one to two. "I was blown away," she confessed. "I cried and cried, and on the way home we stopped in Cranston to get books on the subject."

Although her surgeon recommended a mastectomy, the oncologist did not agree. Confused about direction she should take, she set out from her Narragansett home to seek another opinion in Boston.

"My doctor was personally insulted that I wanted a second opinion, but this is your life, your body," she said.

The experience caused Albert to switch surgeons, and after consulting the group in Boston, decided on a lumpectomy, followed by chemotherapy and radiation. Every time she spoke with doctors, though, she always asked about the possibility of having another child after her treatment. "I sounded like a broken record," she said, and added that there was virtually no information on conception and childbirth following treatment for breast cancer. "The RIBCC put me in touch with other women going though the same thing," said Albert.

At the recommendation of her physician, she waited until she was given "the go ahead." When she appeared to be carrying a baby to term after two miscarriages, Albert continued to be concerned about the health of the child she was carrying, she said. The possibility of long-term effects from the chemotherapy haunted her, "Until I saw him," she said.

At age 41, Albert had given birth to a completely healthy boy who continues to be a bundle of energy. "I get pretty tired," she said with a smile, "but he's a sweety."

The children of women with breast cancer can be profoundly impacted by the diagnosis. Kate McCarthy-Barnett, Ed.D., the daughter of coalition chair and co-founder Marlene McCarthy, knows that only too well.

"Soon after my Mom was diagnosed 14 years ago with breast cancer, I remember lying awake at night until my parents went to bed, then quietly going downstairs and taking a few books about breast cancer with me," said Dr. McCarthy-Barnett. "By flashlight, I would sit in bed and read until I would fall asleep. Although my Mom talked openly about her cancer to my brothers, sister and me and answered all our questions, I thought that if I read enough about the subject, I might find something the researchers missed. Then I could find a cure for my Mom."

Daughters old enough to understand must attempt to come to terms with both their mother's mortality and their own, since they are at increased risk for contracting the disease. For Dr. McCarthy-Barnett, however, finding resources to help her and her sister to cope with those fears at the time of their mother's diagnosis was futile; there were none.

Like her mother, she stopped looking for support and information that did not exist, and found a way to provide it herself. After earning her doctoral degree, she developed a support group at RIBCC resource center dedicated to the concerns of daughters of women with breast cancer. Dr. McCarthy-Barnett acts as facilitator of the Daughters of Eve group, which meets on a monthly basis. In addition to addressing personal anxieties about their own increased risk, Daughters of Eve affords its members with coping strategies, so family members can be an effective source of support for women battling breast cancer, according to Dr. McCarthy-Barnett.

While the prudent, and recommended, course of action for a woman at increased risk of developing breast cancer is a diligence to regular mammography screening, Dr. McCarthy-Barnett quickly discovered a significant barrier to women with disabilities. There are no accessible mammography machines.

Once again adopting the proactive stance as an advocate, Dr. McCarthy-Barnett developed a comprehensive survey for the RIBCC to distribute to mammography centers to ascertain how accessible the facilities are to patients with disabilities. Every facility in the state participated, and the survey results demonstrated that each mammography center in Rhode Island presented women with disabilities with physical, equipment, and communication barriers.

In 1998, the Rhode Island Department of Health estimated there were 63,000 women aged 40 and over with a disability. The results of the RIBCC survey, according to Coalition Chair Marlene McCarthy, indicate the need for significant changes in mammography facilities.

"Unfortunately, Rhode Island has few resources for a woman with a disability seeking a mammogram. Our survey identified profound limitations for women with visual, hearing, and mobility disabilities," said McCarthy. "We were shocked at the attitudinal barriers evident by the written comments on many surveys."

Last March, the RIBCC announced grants totaling $45,000 in grants, including $15,000 from the Rhode Island House of Representatives, to be dedicated to a program of breast health education and mammography screening for women with a disability in Rhode Island. Included will be an effort to facilitate comfortable mammography screening for Rhode Island women with disabilities, to provide sensitivity training to those involved in the process, and to prepare information on breast health and breast cancer in a variety of alternate formats.

Dr. McCarthy-Barnett, through her development of the Daughters of Eve and ACCESS for Women with Disabilities programs, has heeded her mother's advice by turning fear into action. And in doing so, has helped thousands of Rhode Island women.

The members of the Rhode Island Breast Cancer Coalition, in concert with the National Breast Cancer Coalition, have rebelled at insufficient funding and inadequate process for breast cancer research and have succeeded in establishing a multi-million dollar, peer-reviewed research project through the Department of Defense that requires consumer activist participation.

They have rebelled at the inequities in quality medical screening and treatment, and access to care and have been instrumental in the passage of The Breast and Cervical Cancer Treatment Act, which offers an enhanced match to states to provide Medicaid coverage for women diagnosed with breast or cervical cancer through the federally funded free screening program.

They have rebelled against the lack of informational materials and support mechanisms for women with breast cancer, and have established the Breast Cancer Resource Center in Coventry, sent representatives to the NBCC's annual educational conference, and helped sponsor women to attend NBCC's project LEAD, a science-based program designed to educate and train breast cancer activists to participate in the research process. Project LEAD has earned national acclaim from the medical and scientific communities.

They have rebelled against the lack of accountability from national organizations to the National Cancer Institute for funds raised in the name of breast cancer.

They have rebelled against the squelching of patient's rights, and have established as a priority legislation designed to prohibit health insurers and employers from discriminating based on genetic information.

They have rebelled against gaps in research, and have strongly supported legislation to establish multi-institutional, multi-disciplinary research centers dedicated to investigating potential links between breast cancer and the environment.

No rebellion, however, is self-sustaining, and it is not by the organization's successes - but its losses - that the RIBCC is fueled. It is with every new diagnosis of breast cancer and every death attributed to the disease that the advocates' are renewed in their commitment to see the eradication of breast cancer in their lifetimes.

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