For Breast Cancer Survivors, Support Is Crucial

YOUNGSTOWN, Ohio – Being diagnosed with breast cancer was a life-changing experience for Michelle Apple, one that led to years of medical care, lifelong prescriptions for medications to keep her healthy and a new cause to champion.

Her journey didn’t end when she found out she was in remission. The first phase was over, yes, but there was still her entire life ahead of her.

“Most important is that you don’t feel like you’re left alone after you’ve gone through two years of all this traumatic stuff happening to you. All of a sudden it stops and you’re like, ‘OK? How do I fit into this world now?’ ” says Apple, founder of the Apple Breast Cancer Warrior Foundation. “It’s a new you and you adjust. You just need to figure out the next steps and continue the care.”

Completing treatment is only half the battle. For survivors like Apple, the end of treatment is the beginning of a new phase of life, one that can be overlooked in awareness campaigns and broader discussions about the disease itself. Even after the initial treatment is complete, reconstructive surgery may be in order, as well as continued screenings to ensure that tumors don’t return and, on top of everything else, there may be trauma that needs to be managed and dealt with.

Part of helping patients through their new lives begins as soon as they’re diagnosed, says Steve Davenport, chief operating officer at Southwoods Health.

“As with all things medical, it’s about setting expectations. Knowing not just where you’ll be going in the next 15 minutes for your mammogram, but also what happens if something comes up,” he says. “Where will the journey take you? Patients do better when they know without being overwhelmed.”

As with many health care systems, Southwoods provides patients with navigators, who serve as a point of contact. During treatment, they ensure that patients know what’s going on, that everything and everyone is ready for appointments and procedures, and answer any questions that arise. Because navigators are often the person a patient talks to the most during their journeys through beating breast cancer, the support they offer is crucial and can extend beyond treatment.

“When treatment ends, it can be like that cord is cut. It’s reassuring to them to be in here for an exam and be told that they’re still OK. It’s reassuring to know that there’s someone to go to,” says Luana Andamasaris, a navigator for breast cancer patients at Steward Health Care.

The concerns that survivors come to her with after initial treatment usually fall into two categories, according to Andamasaris: physical changes and mental health. And often, those concerns are intertwined.

“When there’s a change in their skin or a lump somewhere, many times the first thing that comes to mind is, ‘My cancer has come back.’ That’s often the top concern. But 99% of the time, it’s just something normal,” she says. “Because they’ve gone through this experience, it’s often at the top of their mind.”

From a medical perspective, breast cancer treatment can be a years-long experience. Those who are diagnosed continue screenings and follow-ups for up to five years beyond their initial treatments and some require medications for the rest of their lives.

For those who get a mastectomy, reconstructive surgery can also be part of treatment. The process can begin at the same time as the mastectomy with a reconstructive surgeon placing tissue spacers in the breasts before installing implants months later.

The ultimate goal, says Mercy Health plastic and reconstructive surgeon Dr. Adam Cash, is to make those who undergo mastectomies comfortable in their bodies. Having the discussion early during treatment about what your body will look like afterward can help assuage some fears.

“It’s hard to lose part of the body,  for anybody. We’re offering a lot of reassurance that we can get them back to a state where they think about their cancer journey a little bit less,” he says. “They can get up, throw on a garment and not have to make special considerations, such as implant devices for a bra or having certain clothing that they’re restricted to. … We’re able to reassure them that they can be care-free when popping on clothes.”

And thanks to technological advancements in the materials used in implants, the result is as lifelike as ever, Cash says.

“When you think about breast shape, every woman’s shape and expectation is different. Some may want to enhance their size a little bit,” he says. “Some have lived with large breasts – to the point it’s causing back or neck pain – and we can reduce that size, which can make their daily living that much better.”

Just as medical professionals are needed to monitor physical health for breast cancer survivors, support networks are important in managing the mental health side. Even in waiting rooms at treatment centers, relationships form between patients as they share experiences and advice. Similar relationships evolve at support groups and other networks of survivors.

Both Southwoods and Steward have temporarily suspended in-person meetings because of the pandemic. But Mercy Health-Youngstown’s Joanie Abdu Comprehensive Breast Health Center has recently resumed meetings, which convene the third Wednesday of each month.

“It’s all about holistic care. We’re not just treating them medically, but making sure they’re taken care of spiritually. That’s the journey for our patients,” says Juli Dulay, manager of the Joanie Abdu Center. “There are so many other needs that come along on this journey. We want to offer whatever we can to support them.”

Since the mid-1990s, the Pink Ribbon Tea luncheon sponsored by the Junior League of the Mahoning Valley has brought together survivors to share their experiences and provide each other with inspiration. Among the features of the event is a recognition of every survivor and how long it’s been since they completed treatment. The longest, says founder and organizer Susan Berny, was more than 40 years.

“What we saw [when we started the Pink Ribbon Tea] is that events like this gave women strength to celebrate their survivorship, to network and to talk openly about what they went through. They drew from each other,” Berny says. “It’s still relevant today because these women have strength in numbers and in being able to hear from other women, no matter what stage they’re at in this journey.”

Beyond being just one of this year’s featured speakers, Apple has drawn strength from the event. A few years ago, just three years removed from her own treatment, she met with another woman who was 15 years out.

“The fear of coming back is high,” Apple says. “It’s so important: support, camaraderie, the fact that there’s someone else you can relate to. It’s such a long and emotional journey. So when you’re able to sit across the table from someone, talk to them and know that they understand, it gives you hope.”

Not all survivors are comfortable sharing their stories and going to support group meetings. It’s roughly a 50-50 split, observes Southwoods chief nursing officer Angela Kerns, between those who are ready to move on with their lives and put breast cancer behind them and those who want to be involved in support and awareness events afterward.

“Some survivors need that support to know they’re going to be OK. We have lots of people who are 10 to 15 years out and patients look up to them. But there are also survivors who want to move on with their life,” she says. “As many survivors you see participating in walks and everything else, there are just as many silent survivors who want to get their mastectomy, live their life and put breast cancer in the past. It’s individualistic, as most health care is.”

To help with that aspect of survivorship, the Apple Breast Cancer Warrior Foundation is preparing to launch a mentoring program to connect survivors with those less comfortable in larger groups.

The foundation also works to pay medical bills for those who have been diagnosed. When she was diagnosed three years ago, Apple says some of her first thoughts were about how much her treatment would cost. At the health care systems, it’s not uncommon to hear of women delaying care because of such concerns – a big problem given that early detection can mean survival rates nearing 100%.

“It’s hard to worry about health when you’re thinking about your bills. Because many women start chemo first, those bills start coming before you have your mastectomy, which is a major surgery,” Apple says. “Things can pile up and your mind can start racing. It happened to me.”

The good news, Dulay adds, is that there’s plenty of financial support for people diagnosed with breast cancer, even beyond the Apple Foundation and the Joanie’s Promise fund, which ensures no one at the Joanie Abdu Center is denied diagnostic exams.

Whatever route someone takes through treatment and survivorship, breast cancer is a life-changing experience. With the right support systems and medical care after treatment is completed, those who are diagnosed with breast cancer can continue to live the way they want.

“It’s like any other life-changing experience. All those bumps in the road define who you are. It’s because of it – and despite it – that you become the person you are,” Kerns says. “I believe that all those things make us stronger, more confident and appreciate what we have.”

Pictured: The Take Out marked its opening with a ribbon-cutting Sept. 23. The staff includes, front row: Lynette Salter, Ciera Harris and Jackie Chambers. Back row: Cicely Chambers, co-owner and chef Waymond Chambers and Destini Withers.