By Katie Kosko
Whether it’s the person who receives a cancer diagnosis or family members who will watch their loved one go through it all, support will undoubtedly be needed at times.
Buck Dodson understands this firsthand. His mother, Susan Poorman Blackie, received a diagnosis of stage 3C ovarian cancer in 2012 — a disease she ultimately lost her life to two years later.
In the United States this year, more than 22,000 women will face ovarian cancer, according to the American Cancer Society. Like Susan, many of them will learn of their disease after it has already advanced. Questions about the physical, psychological and emotional effects may arise beyond what a person’s health care team can provide.
That’s where nonprofit organizations, which inform and support patients, can become a lifeline. Susan understood the need for this and founded the Susan Poorman Blackie (SPB) Ovarian Cancer Foundation before her death. She also received treatment guidance from The Clearity Foundation. Both organizations share a similar goal — helping patients and survivors of ovarian cancer.
Together they have launched Steps Through OC, a new national pilot program that offers personalized support to women and their families.
“Women who are diagnosed in late stage have a 75 percent chance of recurrence,” Hillary Theakston, executive director of The Clearity Foundation, said in an interview with CURE. “This isn’t a one-and-done situation. There is a lot of support that patients and families need starting on day one of their diagnosis and extending through what can be a fraught disease journey.”
Steps Through OC provides free services, such as professional counseling, patient education, psychosocial support, vetted referrals and science-based resources. “Patients often feel like they are drowning in information,” Theakston said. “What they struggle with is finding information that they know they can trust and if it is relevant to them. Having a sounding board and someone who can help them sift through it all is really important.”
Since the program is in its pilot stage, it will begin with 150 people who will receive guided support for six months. On initial interaction, individuals will be assessed using 34 identified areas relevant to patients with the disease.
Individuals will interact with counselors weekly at first, then switch to bi-weekly and monthly as they get deeper into the program. If more support is needed, patients are welcome to continue with the program, explained Theakston.
The focus areas include stress reduction and coping, emotional and physical resilience and skills for self-advocacy. People are also instructed to identify a personal goal. They will then be tracked throughout the program for two reasons: to tailor the program based on needs and to see if needs have improved.
“Even with the best medical care, we felt like we were finding our way through the dark with the emotional and psychological effects of cancer,” Dodson, a licensed therapist and president and executive director of SPB Foundation, said. “We didn’t know how to talk to each other as a family. So as a foundation, when we were thinking about Steps Through OC, we wondered if other women and families were facing the same things and when we talked with them about this — by and large everyone said ‘Yes. We could use more help.’”
Some women may feel isolated since ovarian cancer is not as common as other types of the disease or they may worry about fear of recurrence, explained Dodson. Therefore, keeping open lines of communication is not only crucial for a patient, but also for other members of the family. Dodson recommends taking the time to sit together and talk about how everyone is doing. “Create a safe space to put anything on the table. Normalize that as a family we are dealing with something that is really difficult,” he said.
Newly-launched, Steps Through OC has already enrolled half of the 150 participants targeted during the yearlong pilot phase with plans to expand through additional funding and strategic partnerships. Patients, survivors and caregivers can sign up for Steps Through OC at stepsthrough.org or by calling (866) 830-5134.“We are here to help you and your loved ones wherever you are in your ovarian cancer experience,” Dodson said. “Our professional counselors will be your trusted partner to address what’s important to you and help meet your needs.”