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The Enemy Within, The Battle Without: Fighting for Accessible Breast Cancer Services

By Rachel Ross
(Updated April 2011)

Every woman knows the guidelines: Do a breast self-exam every month. Never ignore a lump. Get the recommended mammograms and see your doctor regularly. With breast cancer, early detection is the key to survival.

But how can you do a breast self-exam if your hands don’t work? How can you get a mammogram if the machine isn’t accessible? How can you see your doctor regularly if you don’t have transportation you can use?

Most women with disabilities have faced these difficulties, and some have found creative solutions. All too many others have had to compromise.

“When we talk with disabled women about their experience of getting mammograms,” says Margaret Nosek, executive director of the Center for Research on Women with Disabilities at Baylor College of Medicine in Houston, Texas, “all they talk about is how hard it is — the inaccessibility of the equipment, the unwillingness of the technicians to work with them and the perception that their physicians are less likely to recommend mammography.” Yet a CROWD National Study of Women with Physical Disabilities found that disabled women are at least as likely to get their scheduled mammograms as nondisabled women. So a key issue, Nosek says, is not compliance but the quality of the recorded image. She illustrates with her own experience:

“The only time I ever went,” she recalls, “they told me they could only examine 10 percent of my breast. It’s very difficult to position me where they can take a good image. So if I had to fill out a survey that asked if I’ve had a mammogram, I would say yes. But it was a totally ineffective mammogram.”

That’s not good enough, says Debra Shabas, former director of the Initiative for Women with Disabilities at New York University’s Hospital for Joint Diseases in New York City. “It’s important that both views be done and the entire breast imaged,” she says. “If it’s a well done mammogram, the accuracy should be much better than [the usual] 10 to 30 percent false negative. But it’s often so poorly done on women with disabilities that it gives them a false sense of security. Dr. Sandra Welner had one woman who had a breast mass so large you could see it from across the room. She sent her for a mammogram just to get an idea of exactly how large it was and the mammogram came back as normal!”

There have been no studies to determine the incidence of breast cancer in women with disabilities, Nosek says, but she concludes that they are at elevated risk for delayed diagnosis “due to environmental, attitudinal and information barriers.” As of today, very little research has been done on the treatment of breast cancer in disabled women since more of the focus has been spent on the screening process.

Accessible Mammography
General Electric, and a few other companies manufacture mammography machines that can accommodate many women with disabilities, although some models may be difficult to use by women with trunk weakness. Nosek says success often depends on a technician who knows how to adjust the equipment and is willing to work on positioning.

Judy Panko Reis, current policy analyst at Access Living and director of the Health Resource Center for Women with Disabilities at the Rehabilitation Institute of Chicago while still in existence, says she knows a woman who, because of her scoliosis, has never had even an “accessible” mammography machine work for her. Another friend was told by her local hospital that if she couldn’t stand, she couldn’t have a mammogram. “Obviously they didn’t have a Bennett unit,” Panko Reis says, “but they didn’t make any effort to find one for her. We need a comprehensive, local way to identify user-friendly equipment.”

Barbara Waxman, a previous ADA project director for the California Family Health Council in Los Angeles, Calif., says any health care agency receiving federal or state funding must either have accessible breast cancer screening equipment or make arrangements for accessible service at an alternative site. She suggests looking at large university hospitals, or calling manufacturers for a list of facilities using their accessible machines.

Even in large cities, you may have to search. “There are three Bennett machines in Manhattan,” says Shabas. “One is at Columbia, and the other two are in inaccessible buildings.”

Survivors
New Mobility interviewed three disabled breast cancer survivors with widely varying experiences. Mary Martz, 51, a fine arts consultant and polio quadriplegic from Claremont, Calif., had surgery the day after her cancer was diagnosed in 1987. No lymph nodes were involved, and there has been no recurrence. She says her mammogram technicians, gynecologist, surgeon and oncologist all were responsive to her needs. “My experience with breast cancer has been very positive,” she says.

Judi Rogers, 52, from El Cerrito, Calif., works at Through the Looking Glass, a Berkeley-based resource center on parenting, and is hemiplegic from cerebral palsy. Although she noticed a change in her breast tissue doing breast self-examination (BSE), she lost a year of potential treatment because her mammogram came back negative. “I thought I was OK,” she says. “A year later they discovered the breast cancer in the next mammogram.”

Comedian, activist and actor Nancy Becker Kennedy, 46, is a C5-6 quad from Los Angeles. “It was right before I got the part on The Louie Show,” she says, “so it was a very exciting time for me. I was at the mammography center arranging interviews when they found something.” That was in 1996. She had a lumpectomy — and a new surgical technique that spared her the lymphedema experienced by many survivors (see sidebar below) — and is now in a low recurrence group.

Detection and Diagnosis
Martz noticed pain in one part of her breast and a thickening of the tissue, but no lump. Even though pain is not a typical symptom of breast cancer, her gynecologist ordered a mammogram and a biopsy.
Martz had done regular breast self-exams, and believes it paid off. “It’s really important because it’s a way to know your body,” she says. “And the more we have a real sense of our bodies, the more we can talk to our doctors knowledgeably.”

Rogers attributes her late diagnosis to meager information, even though she had had yearly mammograms and could do her own BSE. She found puckered tissue and immediately informed her doctor, but accepted the negative mammogram as gospel. “I didn’t know that there is a 10 percent to 30 percent false negative rate,” she says. “I didn’t know that puckering is a 100 percent guarantee that you have cancer. Somehow in my fantasies — because everyone talks about mammograms, mammograms, mammograms — I thought I was OK.

“A mammogram isn’t the be-all and end-all the way they let women think it is,” Rogers says. “Disability or not, more women find the lump themselves before the mammogram does. That’s what I saw in my breast cancer support group.”

Kennedy’s diagnosis was delayed for different reasons. “I have fibrocystic breasts — very lumpy breasts — which 40 percent of women have,” she says. “So I gave up caffeine and chocolate, as much as I could, and I’ve gone for yearly mammograms since I was 38. When my gynecologist told me to get a mammogram, I didn’t think anything of it because they were always feeling lumps,” she says.

Since her surgery, Kennedy has relied on clinical breast examinations. “I go to my gynecologist for breast exams because I don’t have enough feeling in my fingers. But I tell you, it’s hard for able-bodied women to feel this stuff and it’s a heavy thing to lay on your attendant. I think a clinical breast exam every three months with your personal physician is the way.” And try to find and stay with one doctor, Kennedy urges. “I was going to a clinic where I had a different doctor each time,” she says. “They can’t do your breast exams as well as someone who does it all the time.”

“All breast cancer is not detected by mammography and all breast cancer is not detected by BSE,” concludes Mary Smith, a founder of the Breast Health Access for Women with Disabilities clinic in Berkeley, Calif. (see sidebar). “It’s the combination that’s important.”

The following guidelines for early detection are adapted from Y-ME, a national breast cancer counseling and referral organization:
1. If you’re between 40 and 49, get a mammogram every one to two years, and if you’re between 50 and 69, get a mammogram annually. After 70, continue screening if you are in good health and have no prohibiting conditions.
2. See your doctor regularly. A clinical breast examination should be part of your routine checkup. After age 40, get checked at least once a year.
3. Perform BSE once a month. Check for lumps, thickening, changes in the size or shape of the breast, unusual discharge from the nipple and any change in skin texture.

EDITOR’S NOTE, 2011: The FDA has approved a hand-held detection device call the SureTouch. Tactile Elasticity Imaging. It is designed to enhance the Clinical Breast Exam, but cannot be labeled a diagnostic product. Although its maker, Medical Tactile Inc., the company behind this technology, says that SureTouch is the first phase in the development of tactile sensing technology that improves early detection of breast cancer.

Treatment and Recovery
After her diagnosis, Martz required a modified radical mastectomy but no radiation or chemotherapy. “It was a very small mass, it was the kind of cancer that doesn’t spread,” she says. For her, treatment and recovery were relatively simple.

Rogers had a mastectomy followed by chemotherapy. “It wiped my body out systematically,” she says. “After the last chemo my body told me I was dying.” What she needed was Epogene, a red blood cell stimulating factor, but her managed care company wouldn’t pay for the drug until her husband, a doctor, fought for it. “With Epogene,” she says, “I turned around and started living again.”

Kennedy had a lumpectomy. Because her tumor was 3 cm in diameter, she also needed chemotherapy and radiation for six months. “They didn’t think I could withstand it,” she says. “I could have finished the chemo and then done the radiation, but I wanted to be done with everything.”

Kennedy is particularly grateful for sentinel node biopsy [see sidebar], a new procedure that spared her lymph nodes. But her recovery was physically and emotionally arduous. “Chemo undermines your health, but it’s wonderful because it kills cancer cells,” she says. “It’s not good for your kidneys or your bladder. It puts you into menopause. You get fragmented. I got extremely weak and sick, my skin broke down and I was getting infections. I gained a lot of weight. I had the feeling that my youth was gone. You just feel so vulnerable, you get nutty.”

Kennedy saw her recovery as a growth experience. “You have a sense that you may only be four months away from bad news so you take no crap,” she says. “You cut to the chase. Before you have a life-threatening illness, you have a lot of denial about your mortality. Once you have one, you have an appropriate response. I have a different consciousness now that has made my life much better.”

These women have moved on with their lives, and their survival is evidence that the combination of breast examination, mammography and regular doctor visits are an effective defense against breast cancer. Their experience also speaks to the need for improved access to early detection.

Unfortunately, women can’t count on the ADA to make the case for accessible mammography and medical environments. “All it says is that accommodations have to be user-friendly,” says Panko Reis. “That, unfortunately, is open to interpretation by the provider.” Even with more specific ADA guidelines being issued in July 2010 regarding accessible equipment and exam tables, Nosek claims that these measures are still not specific enough for accessible breast cancer screening services.

Ultimately, women with disabilities need to count on themselves.


Breast Cancer Facts
* Most breast irregularities are found by women themselves. (Merck)
* Eighty percent of breast lumps found are not cancerous. (Y-ME)
* One in eight women will develop breast cancer. (American Cancer Society)
* The five-year survival rate after treatment for localized breast cancer is 98 percent. (National Cancer Institute)
* Women over 50 account for 76 percent of all breast cancer cases, yet around half do not get regular mammograms. (Medco Health Solutions and Avon Foundation)
* Since January 1998, Medicare covers annual screening mammograms for all beneficiaries over 40. (Medicare)
* Early detection can save your life. (Absolutely everybody)


A Proponent of Accessible Services
Breast Health Access for Women with Disabilities, in Berkley, Calif., began as the nation’s only breast health center designed specifically for disabled women. BHAWD taught breast self-examination, and provides clinical breast exams (free for women who can’t do their own self-exams) and referrals for accessible mammography. They are transitioning from being an accessible clinic to an educational provider focusing on community outreach and health promotion. Through mammography training, educational modules and facility accessibility assessments, BHAWD strives to promote optimal health care access for women with disabilities.

“It takes an hour for each breast the way they teach it,” says breast cancer survivor Judi Rogers. “You do a light touch, a medium touch and a deep touch, and you move an eighth of an inch all the way across the breast. No doctor is going to take that amount of time, and it’s too hard to expect a loved one or significant other to do it. What if they miss it? All that guilt that goes along with it.”

BHAWD positions itself as a national model for other communities and is aiding in national health policy initiatives to increase disability health research as well as creating strategies to resolve inequalities in the health care system.


A Gentler Biopsy
Traditionally, a routine part of breast cancer surgery is axillary dissection, in which twenty-some lymph nodes are removed from the armpit closest to the affected breast. If cancer cells have spread, these nodes are their primary destination. But axillary dissection often leads to lymphedema, a complication that can include swelling, numbness, pain and stiffness of the arm and shoulder.

In a simpler technique called sentinel node biopsy or lymphoscintigraphy, surgeons inject a blue dye to identify the sentinel node, the first node spreading cancer cells will reach. That node is removed for immediate biopsy. If it is free of cancer, it generally is in women with small tumors and can be predicted with high accuracy that the remaining nodes will also be cancer-free. Usually, no other nodes are removed, although some surgeons remove one additional node on each side. In either case, there’s no lymphedema.

Breast cancer survivor Nancy Becker Kennedy says the new surgery is what kept her mobile after surgery. “If I have swollen wrists, that’s a day I don’t drive,” she says. “So sparing me lymphedema was huge. Every woman should ask about this surgery.”


Risk Factors
You may be at increased risk for breast cancer if you:
* Have a family history of breast cancer
* Have never been pregnant or given birth
* Have had first child after age 30
* Are over 50
* Are overweight
* Are peri-menopausal


Resources
American Cancer Society: 800/227-2345; http://www.cancer.org/
Access Living: 312/640-2100 or toll-free 800/613-8549; http://www.accessliving.org/
Breast Health Access for Women with Disabilities: 510/204-4866; http://bhawd.org
Center for Independence for the Disabled: 212/674-2300 (Manhattan), 646/442-1520 (Queens); http://www.cidny.org
Center for Research on Women with Disabilities: 713/798-5782 or toll-free 800/443-7693; http://www.bcm.edu/crowd/
Initiative for Women with Disabilities: 212/598-6429; http://iwd.med.nyu.edu/
National Women’s Health Information Center: 800/994-9662; http://www.womenshealth.gov
National Cancer Institute: 800-4-CANCER (800/422-6237); http://www.cancer.gov
Y-ME: 312/986-8338; http://www.y-me.org/

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