YSC’s MetsLink Support Group Calls, designed to address the specific concerns of young women diagnosed with metastatic breast cancer, draw participants from every walk of life. Some of the women are single, others are married, some work, others may collect some sort of disability benefits. The ages of the women who participate range from those in their early 20s on up. Topics include, but are not limited to hopes and fears, work, children, communicating with friends and family and living with ongoing and changing treatment.

In my more than four years of facilitating these monthly support group calls, women from all over the U.S. and Canada have joined the calls. Despite the obvious social and geographical differences, it’s always extremely interesting and educational to hear how women from various medical settings are being treated for their metastatic disease. Though there is a large arsenal of medications for the treatment of breast cancer, women do not follow an obvious schedule of treatments. Those that are hormone sensitive may start with an oral anti-estrogen medication, while others may decide to enroll in a clinical trial which utilizes intravenous (IV) chemotherapies or targeted drugs. Still others start with a standard IV chemotherapy. While on the call, we spend time listening to which treatments the participants are receiving and discussing side effects and their management of these. Great suggestions have been exchanged, while anxieties are lessened as the women hear that their physical issues have been, or are being, experienced by others.

A common denominator for each call is the need for participants to feel as if they are part of the group, as many of our callers have never spoken to another woman with metastatic breast cancer prior to joining this “support group without leaving home.” Though we don’t see one another as we do in face to face groups, what’s always astounded me is the kindness and generosity shared by virtual strangers on these calls. Women are eager to talk to each other, hear one another’s story and offer compassionate words.

Questions are always encouraged and many focus on ways to cope with disclosing information to family, friends or employers, as well as managing anxiety before a scan. We’ve discussed complementary therapies like acupuncture, supplements and yoga. The “roller coaster ride” of having a chronic illness with ups and downs always elicits conversations about managing a variety of emotions that come with each day. Women talk about the multiple stressors they experience with this diagnosis including disappointment with loved ones, body image issues, intimacy, role changes, challenges to relationships and managing the sense of uncertainty.

As a clinical social worker in a large urban cancer center, I enjoy these monthly calls enormously and find the group often runs itself. Participants appreciate the opportunity to come together, many of whom choose to join our calls month after month. When a woman is able to hear she is not alone and her feelings are shared by others, the sense of community widens and her stress might seem more manageable. Women frequently exchange contact information and resources. Though there is often a sense that there are many women out there who feel isolated, I’m comforted by the thought that, one-by-one, we’re reaching out and making a difference with our MetsLink networking calls.

Upcoming Calls:
August 14 – 8:00 p.m. ET
Sept ember 11 – 8:00 p.m. ET
October 9 – 8:00 p.m. ET
Nov ember 13 – 8:00 p.m. ET
December 11 – 8:00 p.m. ET

National call-in number: 800.804.6968
International call-in number: 647.723.7260
Access code: 0284559

As women, we are inundated with new information on healthy living and disease prevention. We take this all in, but may still be asking: What vitamins should I take? How often should I floss? Does that new mole look strange? And, as we all know, our breast health is no different. You’ve probably heard that you should do a self breast exam monthly and talk to your doctor about annual mammograms when you turn 40, if not earlier. The medical profession followed those guidelines for years because, after all, isn’t early detection the key to cancer prevention?

It’s no surprise then that the U.S. Preventive Services Task Force* (USPSTF) 2009 report on mammography screening caused quite a stir and a lot of confusion. Based on its review of the most current research, the panel revised previous guidelines so that mammograms are now recommended every two years beginning at age 50 for women of average risk. It also questioned the efficacy of doctors showing women how to perform self-breast exams as a method of early detection.

While the USPSTF recommendations on screening mammography, clinical breast exam and self-examination do not directly impact the young breast cancer survivors served by Young Survival Coalition (YSC), we always carefully review recommendations of such significance. Although mammograms are not perfect and often produce false positives in young women, the evidence has clearly shown that they are effective in older women and should be available for all women for whom such screening is appropriate. Further, the Task Force’s recommendations deal only with average-risk women, not screening in higher-risk women and looking at residual breast tissue of young and old survivors.

As for YSC’s population of young women, the debate reminds us that better screening tools are urgently needed for all risk levels. Mammograms have been found to be an ineffective screening mechanism for women under 40 because their breast tissue is dense. And while over 13,000 women under 40¹ in the United States will be diagnosed with breast cancer this year, there is still no effective screening method for early detection of breast cancer in young women. Survival rates for young women diagnosed with breast cancer are significantly lower than for their older counterparts, and the disease is often detected at later stages and is usually more aggressive.

Taking all of that into consideration, medical professionals, researchers and advocates remain frustrated by early detection of breast cancer for all women and specifically those under 40. Accordingly, YSC urges young women to do what YOU can to become familiar with your breasts and bodies. Know your own personal risk factors for breast cancer, be aware of the signs of breast malignancies and promptly consult with your health provider if you have any health concerns. You are your own best advocate!