Fourth Annual Conference for Young Women Affected by Breast Cancer

PHILADELPHIA—On a Saturday morning in late February, some 800 people from more than 30 states, Canada, and as far away as the Philippines crammed into a hotel here to participate in what many said was not available anywhere else in the world, a conference devoted solely to the unique needs of young women with breast cancer. I was one of a sprinkling of men in an audience of mostly age 30-something women breast cancer survivors, although a few appeared to be in their 20s and more than a few were in their middle years. A number of these women still seemed to be undergoing active treatment. And the men, in most cases, were there as concerned and supportive caregivers. The atmosphere at the meeting, the fourth annual one, was enthusiastic. These were motivated attendees, eager to learn, share, and network with others facing similar physical, medical, and psychosocial circumstances. The participants were drawn primarily from the membership lists of the two conference organizers—Living Beyond Breast Cancer and the Young Survival Coalition, with principal funding from the Susan G. Komen Breast Cancer Foundation—and many seemed drawn to the subject matter as if their lives depended on it. The opening plenary session—“Informed and Empowered: Taking Charge of Your Health and Well-Being”—included the presentation “Doctor, Doctor, Lend Me Your Ear: An Up Close Look at the Doctor/Patient Relationship from Sickness to Health,” by Marisa C. Weiss, MD, Founder and Past President of Living Beyond Breast Cancer, and Founder and President of breastcancer.org.Figure: Eric Rosenthal has worked in medical and cancer communications in a variety of capacities—as founder of the NCI-designated Cancer Centers Public Affairs Network, Senior Correspondent and News Features Editor for Vital Options/The Group Room, and organizer of conferences about the media and medical communications issues.Flipped Perspective What was noteworthy about the session was the flipped perspective. Dr. Weiss, a radiation oncologist with a full-time breast cancer practice in suburban Philadelphia, stepped up on stage in a long white physician's coat that she quickly stripped away to a blue patient-gown underneath.Figure: Marisa C. Weiss, MD, Founder and Past President of Living Beyond Breast Cancer, Founder and President of breastcancer.org, and a radiation oncologist with a full-time breast cancer practice, used humorous slides and narrative to take the audience through her personal experience as a patient undergoing a routine visit with a primary-care gynecologist. From the patient's view—but through the mind of a caring physician—she showed how the process of a routine medical examination can be daunting, confusing, and embarrassing to the patient.She then proceeded—through humorous slides and narrative—to take the audience through her personal experience as a patient undergoing a routine visit with a primary-care gynecologist. From the patient's view—but through the mind of a caring physician—she showed how the process of a routine medical examination can sometimes be daunting, confusing, and embarrassing to the patient. “The relationship between a doctor and patient is often fragile and charged,” she said in a follow-up interview. “I've struggled as a doctor with the issues of closeness and trust and the delicateness of the relationship and how little things can get in the way.” “No doubt it's much easier to take care of a patient who prepares for her visit by organizing her concerns and questions and letting you know up front what's on her mind.” “She should be prepared for the meeting with the doctor. Where else would one go to a meeting without first preparing?,” she asked, noting during the presentation that the vulnerability of the hospital gown immediately puts the patient at a disadvantage with the dressed-for-business physician. Dr. Weiss explained how physicians can save time and do a better job of taking care of their patients if they'd find out at the very beginning of the evaluation what the patient is concerned about. “Every time I see a patient, either a new one or one I've been seeing for years, I say, ‘Tell me your understanding of your situation now.’” “Then I stop and listen to what they have to say and I find out what's on their minds and what their situations are, and by observing how they express themselves and their abilities to communicate and understand, I'm able to determine how I can be most useful to them.” The advice dispensed by Dr. Weiss may not necessarily be news to many other oncologists, but it was welcomed warmly by the audience, many of whom related how their concerns about palpable lumps in their breasts were ignored by primary-care physicians because the women, all in their 30s at the time, were told they were “too young to have breast cancer.” These anecdotes were reminiscent of the story told by my colleague Selma Schimmel, Founder and CEO of Vital Options International TeleSupport Cancer Network and host of The Group Room cancer talk radio show. Ms. Schimmel originally founded Vital Options in 1983 to address issues related to young adults with cancer. When she was 28 she too wasn't taken seriously about what she suspected might be breast cancer. Her persistence finally got her a biopsy, which proved positive and resulted in successful treatment; she was cancer-free for 20 years before being diagnosed with and treated for ovarian cancer last year. The controversy over screening for breast cancer in younger women will probably always be seen from two different perspectives. Those in the medical and scientific community who contend that mammography screening is neither justified nor effective for young women not considered at risk; and those young women who are convinced they wouldn't be alive today if they hadn't pushed for diagnostic tests that many of their physicians didn't think were warranted.FigureEven the age for young women with breast cancer differed between the two conference organizers. Randi Rosenberg, President of the Young Survival Coalition, said her five-year-old organization dealt with breast cancer issues for women 40 and younger. Asked why age 40, she said because that was the cut-off age for screening mammography. Living Beyond Breast Cancer, which was founded in 1991 by Dr. Weiss, has among its activities a Young Survivors Network, characterized as an educational program for women diagnosed before age 45. Issues of Concern Dr. Weiss also said that some of her former patients at the conference were in their 50s, noting that chronological age was less important than feeling that the issues faced by younger women with cancer were also pertinent to one's situation. These issues include: ▪ More aggressive cancers. ▪ Fertility. ▪ Relationship issues. ▪ Treatment-induced early menopause. ▪ Living for years beyond diagnosis and treatment. According to the conference planners, there are about 250,000 women in the United States younger than 45 who are living with breast cancer, with some 11,000 new cases diagnosed last year. The conference offered many workshops relevant to recently diagnosed young women; women who've completed treatment; those living with advanced or metastatic breast cancer; and their caregivers.FigureSex & Intimacy One session that was jam-packed with little to no standing or sitting-on-the-floor room available in addition to about 200 chairs that were already taken, was on “Sex and Intimacy: Tips and Toys for Getting Your Groove Back.” This workshop was also presented by Dr. Weiss, who brought a large suitcase into the room with her “toy” collection. The session was extremely open, honest, and graphic, yet handled in a tasteful, respectful manner. Dr. Weiss was joined by two of her patients as well as a gynecologist who was there as an additional resource. The patients discussed in what could best be described as intimate detail some of the sexual issues they faced post-treatment with their partners. There was probably at least one new thing to learn for each member of the audience, including which sexual aids could be purchased at Wal-Mart and which required visits to a number of the actual or virtual sex shops around the country with very open and compassionate salespeople.FigureDr. Weiss, who has been making this presentation for several years, acknowledged that sexuality remains one subject seldom broached by oncologists or their patients. “But the patients are starving for it,” she said. However, the one workshop I attended that I found lacking was supposed to be on “The ABCs of Advocacy: Making Your Voice Heard.” Unfortunately, though, the speaker spent so much time on the background details involved in the bone marrow transplantation with high-dose chemotherapy for breast cancer issue a few years ago, that she never really got to cover the ABCs or fully make clear her point about evidence-based advocacy. It was a missed opportunity to broaden understanding of appropriate and effective ways to advocate, but despite this one disappointment, I left the conference with a strong sense that most of the participants would be back for more next year.

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