Few people understand better than Donna Barile what kind of support a person needs after a cancer diagnosis.
More than a decade after surviving breast cancer, Donna learned at age 43 that she had ovarian cancer.
“Ovarian cancer was the last thing on my mind because to me it only happens to older people,” she told Healthline about her 2013 diagnosis.
Donna, who carries the BRCA1 gene mutation that increases the risk of breast and ovarian cancers, had surgery to remove her ovaries, fallopian tubes, and uterus. She also underwent a year of chemotherapy. The treatment worked, for a while.
But Donna has experienced four recurrences. Most recently, the cancer returned in her abdomen and a nodule in her lung.
“Now I’m back on chemotherapy again,” Donna said.
To help her face the challenge of multiple recurrences, Donna turned to the National Ovarian Cancer Coalition (NOCC).
The NOCC is a national nonprofit organization that runs advocacy, education, and support programs across the country for people affected by ovarian cancer.
“The things they’ve done for me and my family, and the people I’ve met and networked with through them, it’s amazing. Beyond amazing,” Donna shared. “From what I’ve experienced, the women that associate with NOCC are nothing short of welcoming, loving, and amazing.”
Originally founded as a grassroots group in 1991, the NOCC was incorporated as a nonprofit organization in 1995.
Through its national programs and local chapter initiatives, the NOCC seeks to raise awareness about ovarian cancer in communities across the country.
The organization’s staff and volunteers also provide education and support to people affected by ovarian cancer — including newly diagnosed patients, survivors, and caregivers.
Donna has received meal deliveries, gone on wellness retreats, and attended monthly support group meetings with the Long Island Chapter of NOCC’s Teal Hearts Network .
“I never miss a meeting,” Donna told Healthline.
“Even now with the pandemic, they do Zoom meetings, so the women in our chapter, we can see each other, we can talk to each other, we can help each other,” she continued.
These support group meetings give ovarian cancer survivors a chance to swap tips and advice, share stories about their experiences, and draw support and inspiration from one another.
“I see women come in there and just cry because it’s their safe place,” Donna said.
“It’s like, ‘OK, these women get it, they’ve been where I’ve been, and I’m going to be OK because if they can do it, I can do it.’”
Caroline McNally received a diagnosis of ovarian cancer in her senior year of undergraduate studies, when she was 21 years old.
After undergoing surgery, she searched online for programs for survivors.
“I knew there were a lot of programs out there for breast cancer survivors, but I didn’t really know of one for ovarian cancer,” McNally said. “So I looked up on Google, ‘ovarian cancer walks,’ and I found the NOCC.”
McNally participated in her first Together in TEAL® Run/Walk last September. It’s an event that’s part of the NOCC’s signature fundraising initiative. TEAL stands for “Take Early Action and Live.”
“During the survivor photo, I got so emotional, and this older lady was so supportive,” McNally recalled. “She just hugged me, and she was like, ‘we’ve all been there, we’re here for you.’”
Since then, McNally’s involvement with the NOCC has given her a chance to speak alongside other survivors to a group of medical students at Rutgers University.
“It was amazing for us to get to say, here’s some advice from someone who’s been through it,” McNally said.
“It made me feel like I did something helpful out of this and that [ovarian cancer] wasn’t just detrimental for me,” she added.
Liz Dorcey visited the NOCC DC Chapter’s booth at a cancer survivor’s event about 3 years ago, at the same hospital where she’d received treatment a couple of years before.
“Involvement has helped me manage cancer by making me aware of the resources available to me and the support that’s available from others and that I can provide to others,” Liz said.
“There’s a lot going on, and I have not taken advantage of all the offerings,” she added.
Liz has now been in remission from ovarian cancer for about 5 years.
She knows that if she does experience a recurrence, the NOCC will be there to help support her.
“I know at that point, I will need more support — and I know it will be available,” Liz said.
During one of Donna’s recent recurrences, members of her local NOCC Chapter organized a meal train to help keep her family well nourished while she was going through treatment.
Earlier this year, the NOCC also delivered a week’s worth of meals to her home through its Survivor Relief Fund Teal Comfort for the Soul program.
“My husband didn’t have to worry about what he was going to feed the kids. He takes care of most of that stuff when I’m really laid out on chemo,” Donna said. “Everything was planned out for us, so I didn’t have to think about anything. It was enough for all four of us, and all we had to do was toss something in the microwave.”
Donna found it hard at first to accept this kind of help, but she’s since come to welcome it “with open arms.”
The support has also helped her to focus on her health.
“As of my recent scan, the chemo is working, and the tumor in my lungs has shrunk by half,” Donna shared. “My CA-125, which is the tumor marker, is now within normal range, so we’re going in the right direction.”
As much as she’s able to provide that same kind of support to others, Donna makes it a priority to give back to her “TEAL sisters” in the community.
“We’re all there for each other, no matter what,” Donna said. “If one of us is down, another one is going to step in and pick that person up.”
There are many ways to get involved with the NOCC — to benefit from its programs and services and give back to other community members.
- Check for a local NOCC Chapter near you to attend support group meetings, wellness events, or other local initiatives.
- Register for NOCC CancerConnect to join a moderated online community of ovarian cancer survivors and caregivers.
- Sign up to take part in this year’s virtual Together in TEAL — National Celebration to help raise money, honor survivors and caregivers, and celebrate the memories of people who’ve passed.
- Learn about the NOCC’s Quality of Life Programs, such as their Teal Comfort for the Soul meal delivery program, Teal Comfort for the Mind counseling program, and TEAL Totes newly diagnosed support packages.
- Call the toll-free ovarian cancer information hotline at 1-888-OVARIAN
- Make a donation to the NOCC.
If you or someone you care about has developed ovarian cancer, reaching out to the NOCC may help you get the information and support you need to cope with its effects on your life.
“Getting connected to other people that understand, getting to go to their walk, seeing all those people in their families — it has such a positive impact,” Caroline said.
“Everyone’s so easy to reach, and there’s so many opportunities to help you and your family that you might not otherwise learn about,” she added.