YSC: The Sisterhood for Young Women With Breast Cancer
May 7, 2015
By: Emily Drake
Last month, I headed south to Houston, Texas, to attend the Young Survival Coalition’s (YSC) conference for young women affected by breast cancer and their supporters (who YSC have accurately dubbed, co-survivors). The theme of the conference this year (#YSC2015) was “young. strong. connected” acknowledging that for the over 13,000 young women diagnosed with breast cancer each year in the United States, both age-appropriate health information and a connection to each other (a sisterhood!), are important. It is also imperative that healthcare providers be educated about the unique needs of young adults living with cancer and the value of helping connect these young women to each other and credible community resources.
In order to further the young adult cancer movement, we must educate healthcare professionals about the unique needs of and resources that are available for young adults living with cancer. YSC, cognisant of this need, opened the conference with a morning dedicated to educating interested healthcare professionals. Led by Jean Rowe, LCSW, OSW-C, CJT, the session highlighted the psychosocial (psychological and social) needs of young women living with breast cancer and the different ways their organization is addressing them. The challenges young women face when diagnosed with breast cancer are that the illness tends to be more aggressive and diagnosed at later stages. They also have a higher risk of recurrence and poorer prognosis than those who are diagnosed at later stages of life. Having breast cancer disrupts one’s normal life course and can lead to feelings of isolation. Often these young people are sitting in waiting rooms and receiving treatment next to people their grandparents’ age, without a connection to someone who understands what it is that they are going through. Other difficulties these women face include but are not limited to the early onset of menopause due to treatments, challenges with their body image and impaired fertility. Therefore, bridging the gap between healthcare and community programs and increasing referrals to community resources that offer peer connection and age-appropriate health information can help to better serve the patient as a whole.
To address the medical and psychosocial needs of these young women at the conference, there were multiple concurrent workshops and plenaries focusing on current health information. Among the 600+ attendees were young women who were: newly diagnosed, post treatment, in long-term survivorship, or living with metastatic illness. Even though young adult cancer is a minority health population, there are still unique health needs within this group. For example, those living with metastatic/advanced illness face greater health fragility and uncertainty than someone who is post treatment may face. Therefore, the conference had a track that women living with metastatic/advanced cancer could follow to address their needs. In addition, co-survivors had the opportunity to connect with each other and learn how to take care of both their partner and themselves. Tamika Felder (https://www.tamikafelder.com/) and Juan Campbell presented a powerful session called dating and relationships that not only shared their real story of love and connection, but also allowed people attending to share their experience with one other. Whether married or single, a diagnosis of cancer can present numerous challenges to one’s romantic life. A session for young lesbians (which I will cover at greater length in a future blog) was held after this and allowed a safe space for LGBTQQ women to share and connect with each other.
Other unique features of the conference were the wellness activities. Whether you were interested in belly-dancing or getting up early to attend a yoga or Crossfit class, there was plenty of time to exercise. Scheduled networking opportunities, such as the Texas BBQ held the first night, helped connect people and made a large conference feel both warm and welcoming.
While this is the first year that YSC has put on their own national conference, they are already moving forward and planning next year’s national summit and the regional symposiums that will be held later this year. As YSC’s CEO Jennifer Merschdorf said in the opening, “the initiation sucks, but the sisterhood is forever.” The conference certainly made it clear that the sisterhood is here and more energized than ever. I look forward to seeing more from YSC!