When Morgan Newman was 24, she had an abnormal pap smear.
She wasn’t concerned about the result until she was in the middle of her follow-up screening.
“I went back for a follow-up screening called a colposcopy and ended up hemorrhaging on the table,” she said. “And so they had to stop, and they referred me to a gynecologic oncologist at that point.”
Newman was diagnosed with stage 3B cervical cancer. She went through six weeks of radiation and chemotherapy. Her initial scans were all clear, but three months later, doctors found suspicious nodules in her lungs. Rounds of follow-up tests confirmed the cancer was back.
Newman went through another round of intense chemotherapy that lasted three months. The heavy drugs were hard on her body, but so was watching her friends hit important milestones.
“My friends were getting married, they were having children, you know, progressing in their lives and their careers, and I just felt stuck,” she said.
Before cancer, Newman saw a therapist. But during her two-year battle, she said she couldn’t afford it.
It wasn’t until about a year after she finished treatment and got a new job that she sought out professional support again to deal with lingering fears and frustrations.
“The fear of the unknown really takes over and can physically impact your body, as well as your mind, of what if the cancer is back,” she said.
More cancer survivors
Iowa has the second highest rate of new cancer diagnoses, according to the Iowa Cancer Registry. Researchers aren’t sure why.
But an increasing number of Iowans are surviving the disease, defined as someone who is living with or has completed treatment for cancer.
An estimated 171,535 Iowans — or about 1in 20 people — are cancer survivors, according to the Iowa Cancer Registry.
This mirrors national trends. The National Cancer Institute projects there will be 22.4 million cancer survivors in the U.S. by 2035, up from 18.6 million currently.
But some survivors face lingering mental health challenges long after completing treatment, and getting the help they need can be a challenge.
Newman went through several therapists before she was able to get an appointment with Julie Larson, a Des Moines-based therapist with years of experience working with cancer patients.
“The reality is that very few people return to the life they had before cancer."Julie Larson, therapist in Des Moines
In Larson’s experience, it’s common to see people like Newman come to her months or even a year after finishing treatment, when they realize they just aren't feeling how they expected to feel.
“The reality is that very few people return to the life they had before cancer," she said. "Emotionally and mentally, there's worry. There's understandable fear and uncertainty.” Larson said.
Larson understands cancer and the different forms of treatment people may have experienced, which is why she said cancer survivors often seek her out.
“I'm not a doctor, but I've done this a long time, so I know what happens when people have Adriamycin. I know the treatment protocol for carboplatin. I know what happens for lung cancer patients as they're moving through the treatment decision making process.”
But finding mental health professionals like Larson can be a challenge for Iowans.
Iowa has one of the largest shortages of mental health providers in the country, according to health policy group KFF.
A national survey by Cancer Nation, an advocacy group for cancer survivors, found that 32% of people who completed treatment reported having anxiety about their cancer coming back and 28% reported not feeling like their old self.
More than half of survivors — 57% — reported talking with friends and family, but just 21% said they had spoken to a mental health professional. Shelley Fuld Nasso, CEO of Cancer Nation, found that number disheartening.
“Part of it is, I don't think we have enough. I think some people need mental health professionals who really understand cancer,” she said.
People under 50, like Newman, are a group that’s experiencing increasing cancer diagnoses and are more likely to experience lasting mental health challenges after treatment, Fuld Nasso said.
“Maybe they were in early stages of their career, or in school while they were going through treatment, and it’s lot harder to kind of pick your life up and go on and try to figure out your new normal,” she said.
Neglected mental health
When it comes to treating cancer, the field of oncology often neglects mental health, said Patricia Ganz, an oncologist and professor at the UCLA School of Public Health, who has spent decades working with cancer survivors.
“We know how to give pills. We know how to give pain medicine, sleep medicines, but we're not really schooled in the antidepressants,” she said.
There’s an increasing awareness about the need for screening and addressing mental health services for cancer patients and survivors, but expert-recommended screenings don’t always happen to the extent Ganz said they should.
“If you screen, that means you have to be able to provide services that's not always available if you don't have access to a mental health professional. So that has not been done as rigorously as it should be in general practice,” she said.
The MercyOne Richard Deming Cancer Center in Des Moines is one clinic trying to better address this issue.
The clinic started offering integrative oncology services, like counseling, music therapy and spiritual care. Many of the services are covered through charitable donations, since they’re often not covered by insurance plans.
“You get cared for intensely when you're getting treated for cancer,” said Dr. Richard Deming, medical director of the clinic. “When you're done with cancer treatment and you are cancer free, we don't say this, but the way that we manage those types of patients it's almost like you should feel fortunate that you're cancer free and just get on with your life."
In order to treat cancer, doctors need to pay attention to far more than just physical symptoms, which requires a shift in the way doctors treat patients, he said.
“Every step along the way, whether it's through diagnosis or treatment or follow up, we have to ask, 'What are the issues you're experiencing?' Not just, ‘Do you have cancer? Did we get rid of the cancer?’” Deming said.
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