Roseanne Vinci Igoe learned how to dance after retiring and moving to The Villages. She’s picked up belly and ballroom since, showing off her moves to crowds when they gathered at the squares. “I’m proud of it,” the Village Santo Domingo resident said. “I shouldn’t have made it this far.” Igoe has been told she was probably going to die — twice. Doctors gave her a 20% chance of survival when diagnosed with ovarian cancer at 25 years old. Igoe was told six months to live when the kidney cancer news came 15 years ago. She had a brush with cervical cancer in between. Sunday marked National Cancer Survivors Day, honoring a population that’s been steadily growing for years.
More than 16.9 million Americans with a history of cancer are living.
The death rate from cancer in the U.S. declined by 29% from 1991 to 2017, including a 2.2% drop from 2016 to 2017, according to the American Cancer Society’s 2020 report. That’s the largest single-year drop ever recorded.
It’s encouraging news, said Dr. Eyal Meiri, interim chief of medical oncology at Cancer Treatment Centers of America in Atlanta.
Even some patients with dire diagnoses, like Meiri’s patient Len Archer, are living longer.
The Village of Hadley resident was diagnosed with Stage 4, terminal, inoperable pancreatic cancer two years ago.
Though not cured, Archer is alive and well thanks to an experimental drug.
His story is still the exception, not the norm, when it comes to late-stage pancreatic cancer, Meiri said, but dramatic gains have been made in cancer care overall, allowing for some Stage 4 patients to be deemed cancer free.
“In my 32 years of practice, I can tell you it’s been a joy to see that happen,” he said. “This is a new world.”
After 38 years in the field, Debi Luce is seeing people who wouldn’t have a hope of survival when she started being cured.
Luce, a nurse practitioner in radiation oncology at Florida Cancer Specialists in The Villages, became interested in cancer care after her godmother died of leukemia in 1979. Luce felt helpless, wanting to know more. It’s common now for people with the same diagnosis to live a long life.
“My favorite quote that people are probably sick of hearing me say is I truly feel like in my early days I was Wilma Flintstone, and now I’m Jane Jetson,” Luce said. “That’s what I’ve watched oncology do.”
Tests can now analyze an individual’s cancer, she said, so providers better understand the triggers and switches that turn cancer on or off. And new therapies mean there are more and more targeted agents to hit specific triggers.
Fortunately, each successful study means more patients alive, said Heather Augustyniak, survivorship nurse practitioner at Baptist MD Anderson in Jacksonville.
But the need for care and support doesn’t end once treatment does.
“It comes with its own set of issues that patients are having to live with,” Augustyniak said.
Living with cancer is like living with a chronic disease, calling for continued monitoring and symptom treatment, said Sonya Zeller, corporate director of quality for UF Health Central Florida.
“Each individual has their own way of coping and living as a survivor,” she said.
Living Through Treatment
Becoming a cancer survivor starts at diagnosis.
Patty Chuck recalls little about getting her life-changing news — she tuned out hearing her doctor say “cancer.” Chuck just remembers feeling numb.
“The first thing you want to know is, ‘Am I going to die right away?’” said the Village of Duval resident who was diagnosed with non-Hodgkin’s lymphoma.
Chuck was infused with a cocktail of chemotherapy drugs during nine-hour treatments every 21 days over eight months.
She dealt with headaches and nausea and 10 days into treatment, on New Year’s Eve 2002, her hair started falling out.
In the midst of celebration, Chuck sat and cried while her husband shaved her head.
Chemotherapy has long been the standard for cancer drugs, despite these draining side effects. Treatment uses chemical substances to kill cancer cells, also damaging normal cells.
“You’re being poisoned,” said Janet Weinraub, a breast cancer survivor and Village of Marsh Bend resident. “Just when you start to feel a little bit better, it’s time to get the next dose.”
During treatment, just taking a few steps outside to pick up the newspaper left her out of breath.
Ginny Hart, a two-time breast cancer survivor, dealt with chemo’s side effects both times.
“It was hard emotionally losing your hair, getting it back and then losing it again,” the Village of Belvedere resident said.
Along with hair problems, there were days of treatment when everything tasted like chewed aluminum foil.
Though chemotherapy is still the standard for most cancers, other approaches with fewer side effects are increasing, Meiri said.
He estimates five years ago, almost all infusions were chemotherapy, and just 5% were biological therapies, which use the body’s immune system to fight cancer cells. That includes immunotherapy drugs that help the body identify and destroy cancer cells.
Meiri said biological therapies now make up about 30% of infusions.
Those treatments don’t have the side effects of chemotherapy.
Archer, for example, feels no difference after his immunotherapy treatment and is able to make the six-hour drive home on his own. His wife stays home to watch their “fur babies.”
Though most days are good, there are still some when Archer feels “weak as a kitten,” unable to get out of bed.
About a year into treatment, he got so sick that he had to go off the treatments for a while to give his body a break.
Archer knows it could happen again, and he has a long way to go before even thinking about being without cancer.
“I am just happy right now to wake up every morning,” he said.
Ashley Burdeshaw, a clinical social worker at UF Health The Villages Hospital, screens cancer patients at the start of treatments to identify physical and mental gaps in care for patients during treatment, from handling stress surrounding treatment options to finding transportation, meal services or wigs.
“They’re dealing with such a difficult disease,” Burdeshaw said. “I try to remember that I can kind of be that anchor of hope for them.”
Going for regular treatments is like having a part-time job, Luce said, so it’s something to celebrate for those who can stop.
It’s common for cancer centers to have a bell for patients to ring in celebration of that moment.
Luce has heard that joyous sound at the hands of many patients. She keeps her promise of doing her happy dance for them.
“We make it a deal because it is,” Luce said.
It’s a rite of passage ushering patients into recovery.
For those who are told they’re cancer free, life doesn’t immediately return to normal.
Lasting Side Effects
Weinraub’s nausea subsided after treatment. Other side effects have lingered.
She had anxiety before, but cancer made it 10 times worse.
“(Cancer) sort of hovers around you all of the time,” she said.
Anxiety and depression are common among survivors, said Dr. Smitha Pabbathi, medical director of the survivorship clinic at Moffitt Cancer Center, conditions often driven by fear of reoccurrence.
“That’s still the No. 1 issue that comes up in the assessment tool that we use to evaluate all of our new patients,” she said.
In 2006, the Institute of Medicine issued a report recommending every cancer patient receive an individualized survivorship care plan after treatment. The Commission on Cancer requires cancer programs have survivorship plans to receive accreditation.
Along with psychological effects, survivors can deal with long-term physical symptoms like neuropathy, which causes tingling, burning or numbness in hands and feet.
As grateful as Igoe is to be alive, she lost a lot in the treatment process: being able to become a mom, half her bladder, a kidney.
She used to wake up from horrible nightmares, screaming and crying.
Raymond Jackson underwent radiation for esophageal cancer last year.
Though treatment is over, he hasn’t gained his taste buds back. Nothing tastes good, not strawberry shortcake or his favorite ice cream.
“It’s just not worth the calories to have it, said Jackson, of Stonecrest. “It just doesn’t taste right.”
His whole process of eating changed. He takes one small bite at a time, chew, chew, chews and follows with water.
“It is worth is? Yeah,” Jackson said.
He’s thankful to have his wife, Barbara, by his side through it all.
“I could not have done it without her, no,” Jackson said.
Other survivors experience cardiac issues, body image issues, sexual dysfunction or lymphedema — swelling in the legs due to damaged lymph nodes, Augustyniak said.
At Baptist MD Anderson, she schedules 90-minute one-on-one appointments to help patients craft survivorship plans.
That includes treatment summary and a care plan outlining follow-up screening that patients can share with their whole care team moving forward.
“We talk about how we can personalize a treatment plan to help them have a new normal, which may even be better than where they started,” Augustyniak said.
Life After Cancer
Nearly eight years after her treatment ended, Anne Schlick, is still visiting Florida Cancer Specialists for a checkup every six months.
“I will continue that the rest of my life because lymphoma comes back a high percentage of the time,” said Schlick, who lives in Élan Buena Vista. “This hung over my head for a while, but I’ve pretty much gotten over thinking about it.”
Chuck used to agonize before regularly scheduled CAT scans every six months.
Five years after treatment, Chuck had another cancer scare when doctors noticed a spot on her liver.
It never grew, though.
Chuck, who worked as a flight attendant until her diagnosis, retired after treatment.
When not in the time of a pandemic, she enjoys flying as a passenger, and has traveled to China, Israel and Russia.
If safe to travel by September, she plans to fly to Italy to celebrate her 55th anniversary with her husband and her birthday.
Cancer is no longer always at the forefront of her mind, though she’s thankful to have made it through, as so many more people have been able to.
“We’re not dying of it,” Chuck said. “We’re living with it.”
It’s important for survivors to know they’re never completely free of cancer because post care continues your whole life, Weinraub said. Checkups every six months still frighten her.
But she’s also able to live her life between appointments by focusing on exercising and enjoying time with her two dachshunds.
A former elementary school teacher, she started volunteering at Leesburg Elementary School after moving to The Villages.
Weinraub makes herself available to answer questions from anyone diagnosed with cancer.
“I’m proud to be a survivor, and I want others to know they can get through it, too,” she said.
Hart is quick to share her experience with people in treatment.
“When you go through it, you want to hear people who survived it,” she said.
Though Hart doesn’t think she’ll ever be completely “over it,” she has done a lot since.
She’s still teaching at Lake Weir High School, adjusting to distance learning during the pandemic.
A longtime fitness instructor, Hart also uses Zoom to teach step aerobics to Villagers.
Igoe doesn’t think much about cancer in her daily life anymore, though she remains an advocate for regular screening.
She stays busy dancing and spending time with her husband of eight years.
“I thank God that I’m able to get out there and enjoy life,” Igoe said. “I was supposed to die. I’m very grateful I made it this far.”