ORLANDO — Unlike the imaginary monsters of our childhoods, the ones lurking under the beds, in the closets or outside the windows on moonlit nights, the monster haunting Deborah Romero is real.
She had rounds of chemotherapy followed by radiation therapy to get rid of it. She fought it when she was bedridden and wheelchair-bound, too weak and in too much pain to stand up.
And finally one day, all the scans and medical tests told her that she had beaten it. The stage 4 non-Hodgkin lymphoma was gone.
But the monster still lurks.
“If I feel a pain in an area of my body, I panic. … I get headaches and I wonder if it’s gone up to my brain,” said Romero, 50, who finished treatment four months ago. “It’s so frightening, especially when you’re staged at 4. You can’t be staged any higher. It messes with your head.”
For Romero and many others, cancer — the C word, the Big C, the unmentionable — doesn’t just go away, even after the invasive cells are fried and killed. The fear of recurrence can engulf many survivors for the rest of their lives.
“People say, ‘You’re finished, right? You’re back to normal.’ But, no, that is largely never the case,” said Kristine Donovan, who sits on the board of directors for the American Psychosocial Oncology Society and is a clinical psychologist at the Moffitt Cancer Center in Tampa, Fla. “Maybe [the survivors] have lost a step cognitively or physically. That diagnosis has a profound impact and it may diminish over time as you move farther away from diagnosis, but it’s always there.”
There are nearly 14.5 million cancer survivors living in the United States, and that number is expected to grow to almost 19 million by 2024, according to the American Cancer Society.
As people live long after their diagnosis, it has become clear that cancer is a chronic illness, and there are physical and emotional side effects that manifest after the survivors are given a clean bill of health.
The accrediting body for cancer centers now requires anyone diagnosed with cancer to have a distress screening, a questionnaire about various issues from the level of anxiety to worries about finances. Guidelines now recommend that oncologists give patients survivorship care plans to address needs and concerns after treatment and for follow-up care.
“The barrier that we face now is that there’s still stigma about anything that’s mental, so patients are shy about accepting counseling,” said Dr. Jimmie Holland, one of the pioneers of the field of psycho-oncology and Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan Kettering Cancer Center in New York.
When Laurene Tye was diagnosed with stage 1 uterine cancer in 2012, she started seeing Carol Duryea, a licensed clinical social worker at Florida Hospital Cancer Institute. She began going to the local chapter of the American Cancer Society and still speaks to other survivors to let them know that it’s OK to ask for help.
“This is not a battle anybody, any human, any woman should go through alone,” said Tye, 66.
For many survivors, especially women, support groups can play an important role in helping to cope with stress and transition after cancer treatments are over.
“Although getting to the point where you don’t need treatment anymore is what everybody’s striving for, when you get to that point, it’s like cold water is dumped on you,” Duryea said. It’s like, ‘I’m in this by myself now. Now I have to go home, and I won’t come back for three months or six months.’ They feel abandoned.”
When Carol Hubbard’s doctor recently scheduled her a follow-up exam three months away, she panicked. “I said to her, ‘I can’t do this,'” said Hubbard, who finished treatment for breast cancer almost a year ago.
“I told her I’m going through withdrawal. And I was serious. I have gone through withdrawal,” said Hubbard, who lives alone and for almost two years went to UF Health Cancer Center-Orlando Health at least twice a week.
Hubbard now attends support groups in between her doctor visits, port flushes and injections.
“So it’s not just coming [to the hospital] and going home. It’s coming here and being accepted, being included and being able to share,” she said.
The need for a connection among cancer survivors became quickly apparent to Karen Shayne, who co-founded Women Survivors Alliance in 2012 in Nashville.
The group’s first national meeting, SURVIVORville 2013, drew more than 800 people. The alliance now has a touring event called My 2nd Act, in which women tell their survivor stories from the stage, and has an online magazine, NOU.
“The public demand is rising, and I think we’re in the tipping point and then we’ll see a health system that meets people where those needs are, and brings individualized care that would prioritize what’s important to people, as much as the focus on what’s their white blood cell count and their response to a particular drug so that we’ll have truly whole-person care,” said Rebecca Kirch, director of quality of life and survivorship at the American Cancer Society.
Romero has good days, but she still has days that she’s so fatigued that she can’t even finish her grocery shopping. It frustrates the once energetic go-getter.
“It’s a back-and-forth thing. I pray that it goes away and it does get better,” she said.
Romero understands her new normal comes with a second chance and a new perspective.
“There’s a silver lining behind all of this,” said Romero. “Now I stop, and it sounds cliche, and I smell the roses. I tell people that I love them more often. I do it every day. I appreciate life more. I really do. I don’t complain as much. And when I have my bad days, I pray, and it gets better. It gets better, once I talk to whoever it is I need to talk to, I feel better.”
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