“I have me back,” is how breast cancer survivor Jeanette Daniel of Memphis described her life after being treated on a clinical trial at Vanderbilt-Ingram Cancer Center in Nashville. Being conducted by the Stand Up To Cancer P13K Dream Team, whose leader discovered the PI3K pathway, the trial combines letrozole with the PI3K inhibitor BKM120 or the PI3K/mTOR inhibitor BEZ235. Aberrant activation of the P13K pathway has been associated with several malignancies, including breast, ovarian, and endometrial cancer. Ms. Daniel spoke at the Annual Meeting of Stand Up To Cancer’s scientific partner, the American Association for Cancer Research (AACR).1
Ms. Daniel was diagnosed with stage IIIA breast cancer in 2006, and despite 2 years of radiation and chemotherapy and six different protocols, the cancer progressed and invaded her spine, hips, skull, and ribs. She could no longer go to work and had to use a pain pump.
By early 2011, she was told “in about 6 months, the cancer would just use me up,” she said. “Then we found a study,” she continued, and instead of being used up, “was lifted up and just swept along with incredible out-of-the-box thinkers.” Several months ago, Ms. Daniel was told “there is no evidence of active disease in your body,” she reported.
“Doing what you are doing is keeping me alive,” she told the AACR meeting participants. “I owe you the genuine debt of my life.”
While scientific presentations and research reports dominated the AACR Annual Meeting, Ms. Daniel was not the only cancer survivor to share her personal experiences. Several poster presentations also related to cancer survivorship and advocacy.
Helping the Homeless
“Street Smarts” is a cancer education and outreach program to provide breast cancer screening and follow-up for homeless women in Birmingham, Alabama. The program was created by Cynthia Ryan, PhD, following a yearlong immersion in the homeless community for an article about cancer among the homeless for the fall 2010 issue of the AACR consumer publication CR (now known as Cancer Today).2 Dr. Ryan is Associate Professor, Department of English, University of Alabama at Birmingham, and a breast cancer survivor.
“The many appeals for women to have their breasts examined and to be aware of these things don’t work for this population, because the prospect of being sick and dying is often not the most pressing fear in their lives,” Dr. Ryan explained in an interview with The ASCO Post.
“Findings from a focus group consisting of homeless women diagnosed with stage IV breast cancer revealed competing values (poor self-esteem and body image and negative encounters with the health-care system) preventing individuals in this population from seeking diagnosis or treatment for cancer, even when options are available free-of-charge. Street Smarts brings together members of this underserved community for a day of pampering while educating them about breast cancer screening and health-care alternatives,” Dr. Ryan reported in her poster presentation.3 The pampering includes treating the women to lunch, facials, manicures, and haircuts. Breast cancer survivors from the streets assist in the breast education sessions and serve as mentors for the participants.
“The women leave with a tote bag displaying a message that these women have devised,” Dr. Ryan said. That message is, “Be street smart and survive.” The bag is filled with personal hygiene products, and for these homeless women, the bag itself is a “big deal,” Dr. Ryan noted. Street Smarts is funded in partnership with the Susan G. Komen for the Cure North Central Alabama Affiliate.
Taking It to the Streets
The first program was conducted at a church, and although oncology nurses were present, “we did not offer screening because many of these women would not have shown up,” Dr. Ryan said. To recruit participants, “we took to the streets,” she continued. “We went into the parks. I got in front of them at the mission church where I had originally met members of the local homeless population.”
Nearly 100 women did show up for the first program. Dr. Ryan reported that several women raised their hands and asked where they could go for screening. “We did not expect that,” she said. “They were attentive. They were excited. Someone was paying attention to them.”
Screening will be part of a second session scheduled for June at the county hospital, Cooper Green Mercy Hospital. The women will also be registered at the county hospital when this occurs so that they will then have the return services if they need them, Dr. Ryan reported. “If they are in the system at Cooper Green, then we are going to know if they followed up, if they come back. Some of them will not. Some of them will not agree to be screened, and that’s the way it goes.”
Dr. Ryan was able to arrange many of the services provided by Street Smarts because “I network,” she said. “I write a lot of op-eds, a lot of magazine articles, so people are familiar with me.” She already knew some of the oncology nurses at the hospital because she often accompanies homeless women to appointments there. “I am kind of their facilitator. I help to clarify information for them and make sure their questions are answered,” Dr. Ryan said.
“I am in the process of waiting for the trademark for the program so that we can spread it across the country,” Dr. Ryan reported. What the program requires, she said, “is that you look at these folks like they’re real people. You make associations with them and say, ‘I am going to help you through this.’”
Survivors Teaching Students
Ovarian cancer survivor Judith L. Fornia and other members of the Ovarian Cancer Alliance of Oregon and Southwest Washington, based in Portland and Vancouver, are back in the classroom, but this time it is to help future health-care practitioners learn to recognize risks and symptoms of ovarian cancer so they will be able to diagnose the disease in its early stages.4 Twenty-eight percent of women diagnosed in late stages (stage III and IV) will survive 5 years.
“We are speaking to nursing students, nurse practitioners, medical students, pharmacy students, basically telling our personal stories, so that it humanizes the vague symptoms—such as bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly, and urinary urgency or frequency—that a woman can have. If these symptoms are unusual for you and occur almost daily for more than a few weeks, see your doctor, preferably a gynecologist,” Ms. Fornia told The ASCO Post.
The program—Survivors Teaching Students: Saving Women’s Lives—was developed by the Ovarian Cancer National Alliance. In addition to implementing this program at the local level, the Ovarian Cancer Alliance of Oregon and Southwest Washington also participates in community health fairs and other events.
According to Ms. Fornia, their overall message is, “Listen and pay attention to your body. If you’ve got some vague symptoms that are hanging on for a month or 6 weeks, then you need to see a doctor.”
Capturing the Passion
To increase awareness of clinical trials available in West Michigan, cancer survivors share their own experiences with clinical trials by serving on the Grand Rapids Clinical Oncology Program’s Patient Advisory Board for Clinical Research. According to the AACR presentation by Patrick Gavin, the Patient Advisory Board “was formed to capture the passion that clinical trial participants possess in searching for a cure for a disease that has personally affected them.” 5 ■
Disclosure: Dr. Ryan, Ms. Fornia, Ms. Daniel, and Mr. Gavin reported no potential conflicts of interest.
References
1. Daniel J: Stand Up To Cancer press event. 2012 American Association for Cancer Research Annual Meeting. Presented April 1, 2012.
2. Ryan C: Homeless with cancer. CR (newly named Cancer Today), Fall 2010.
3. Ryan C: Street smarts: Cancer education and outreach in the homeless community. 2012 American Association for Cancer Research Annual Meeting. Abstract LB-50. Presented April 1, 2012.
4. Fornia JL: Real people—real stories: Survivors teaching students. 2012 American Association for Cancer Research Annual Meeting. Abstract LB-45. Presented April 1, 2012.
5. Gavin P: Cancer clinical trials: Real answers, real options, real miracles, right here in west Michigan. 2012 American Association for Cancer Research Annual Meeting. Abstract LB-53. Presented April 1, 2012.
