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Cancer-free, but navigating a whole new web of appointments

Karla Zimmerman had made it through the worst of it – surgery to remove an 18-centimeter ovarian tumor.

Six rounds of chemotherapy in four months followed. By late September 2015, Zimmerman thought that would be the end. She returned to exercising on the treadmill, working out with weights and bicycling at the YMCA.

She was wrong. Despite the best of intentions of moving forward, her fatigue increased after returning to her job as a criminal defense lawyer at Legal Aid Bureau of Buffalo. She had unanticipated nerve damage and tingling that caused her to injure her foot while exercising.

"You're released, cancer-free," Zimmerman said. "But you feel like you are floundering. People think you should be excited that you're cancer-free. I am, but that's not the end of the story."

Living as a cancer survivor has meant navigating a whole new web of services to care for fatigue, pain and other aftereffects of cancer long after treatment ends, coupled with anxiety over whether it will return.

Zimmerman is not alone. As more people survive cancer and live longer, experts are recognizing a need to help them navigate the next chapter. Patients are challenged to find help for everything from temporary memory problems to follow-up screenings to emotional anxiety and fears.

"We're really seeing an upsurge of survivorship," said Mary Reid, Roswell Park Cancer Institute's director of cancer screening and survivorship. "You could have someone live from childhood leukemia and spend 60 years as an adult."

Number of survivors grows

The numbers tell the story.

By 2020, there are expected to be 18 million cancer survivors across the United States, Reid said. Half of them will be more than 70 years old.

Cancer centers like Roswell are increasingly recognizing that patients entering post-cancer care need help nurturing mind, body and spirit, while simultaneously addressing what sometimes are long-term side effects of cancer.

"When the treatment is over, the residual effects of treatment and having had cancer goes on for a really long time," Reid said. "When we treat cancer, we definitely have figured out how to address tumors. We are not so great at protecting normal cells. As a consequence, you have effects that can leave long-term side effects."

It's not so much that many of those services have not existed, but they have often been scattered. Now there's a push to harness those services under one umbrella, making them more readily accessible for survivors.

Roswell recently opened its Survivorship and Supportive Care Center to centralize support services for patients, including physical therapy, nutritional advice, counseling, follow-up cancer screenings and other services.

"We provide people with a whole-person approach in a one-stop shop," said Dr. Amy Allen Case, clinical chief of supportive and palliative care at Roswell. "Most doctors have an agenda ­– here is your chemo and they're done. We focus on getting people to feel better and their quality of life, their functional status and emotional and physical support."

Zimmerman, who survived an ovarian tumor, is one of the local cancer survivors who have found help at Roswell's survivorship center.

"I didn't realize the kind of side effects of chemo and how long they would linger," Zimmerman said. "Oncologists are fabulous and mine saved my life. But then when he's done with me, he refers me out."

Even now, 48-year-old Zimmerman has more challenges. She still battles lingering digestive issues, along with fatigue and anxiety. Her father died in the midst of her chemotherapy, and her close friend died of breast cancer after Zimmerman returned to work.

"I am still really struggling," Zimmerman said. "I thought I'd really be on more of an upswing by now."

'Not a walk in the park'

Survivors can feel like they're shuffling from one provider to another as they manage the after effects of cancer, including pain, neuropathy, nutritional issues, psychological concerns and more cancer screenings. That's where Roswell's survivorship center located in the Scott Bieler Clinical Sciences Center on the Buffalo Niagara Medical Campus comes in. It was two years in the making. Already, there are plans to grow the staff.

Lobby at the Scott Bieler Clinical Sciences Center on the Roswell Park Cancer Institute campus. (Robert Kirkham/Buffalo News file photo)

Reid knows the survivorship drill firsthand. Her husband, Stephen Smith, was diagnosed at 50 with stage 4 colon cancer. He survived. Together, they plan "really great vacations now and we're living it up," she said. "You won't finish chemo and go to the gym and walk for 10 miles. It just doesn't work that way."

"This is not a walk in the park," Reid said. "With survivors, we want to create a place where someone is going to sit with them and figure out what's going on. You want someone who is going to balance what happened to you with what you can do to really get control of your life and your level of wellness."

Roswell calls it "Chapter 2."

Survivors want to know their cancer has not returned, Reid said, but also want to regain their lives.

"You dodged the bullet. But you're never the same," Reid said. "There's no going back. If you've survived cancer, you will always be a cancer survivor and you look at life differently."

The idea is to offer a place for long-term follow-up care for cancer survivors, with an eye toward keeping on top of future cancer screenings. Patients may need an exercise routine, a nutritional plan, a psychologist, a social worker as part of getting their lives back on track.

Pilates, yoga, healing touch energy therapy, respiratory muscle training, tai chi, healthy eating, counseling and nutritional planning are part of a broad sampling of what the Roswell survivorship center offers.

"We have to give people the tools on how to get there," Reid said.

Finding a new normal

Ovarian cancer survivor Cathy Lynn Mock, 50, is in remission and back to full-time work as an executive assistant at Financial Partners of Upstate New York. But the Amherst grandmother still experiences viruses and infections, nausea and occasional memory lapses from "chemo fog."

She goes to the center for cognitive therapy, ongoing screening and dermatology services.

Mock's physical therapy and counseling are behind her now, and her memory is improving. But her strength, stamina and coordination were compromised. In her seventh round of chemo, she had no feeling from her knees down.

"I literally thought I was dying and had excruciating pain from my head to the soles of my feet," she said. "I felt partially paralyzed."

On her own, she worked through games like Sudoku, Word Brain on her iPad and Scrabble to challenge her post-chemo memory, but she said the center has helped get her back on track.

"I'm getting back to a normal life," Mock said, calling her survival a "miracle." "There's more for me to do in life. I'm still here."

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