Iowa looks to focus cancer treatment and support for teens, young adults

IOWA CITY - Cancer rates among adolescents and young adults in Iowa have risen over 30-some years - especially among white males and females - and health care providers want to do a better job of tailoring prevention efforts, treatment options, and support systems to that specific population.

'Traditionally in our medical system, when you're under age 18 you get seen by a pediatrician, when you're over 18 you get seen by an adult physician,” said George Weiner, director of the University of Iowa Holden Comprehensive Cancer Center, during a Wednesday presentation of the 2016 'Cancer in Iowa” report out of the State Health Registry of Iowa.

'It's almost like it's Dora the Explorer versus AARP travel and leisure, but nothing in between,” Weiner said. 'And this really doesn't make sense.”

That's why the UI cancer center and UI Children's Hospital have teamed up to create a new Adolescent and Young Adult Cancer Program aimed at providing specialized care and resources to patients in the 15-to-39 age range.

Some issues the program will address that are unique from other types of cancer patients include fertility preservation, distinct social needs, and long-term side effects and survivorship. The university in October hired William Terry - an assistant professor of pediatrics and oncology - to lead the program, which has been evolving over the past few months.

As part of the program, Terry said, his team is pulling together an advisory group to include those younger patients who might benefit from more tailored services. And, he said, the goal for five to 10 years out is to have a physical space for cancer patients in that middle age range - right now the university has spaces for pediatric cancer patients and adult cancer patients but nothing in between.

Weiner said focusing treatment and support systems specifically for patients in that group is important not just because of their unique stage of life, but also because the types of cancers they get are different.

'And we know that people in those age groups tolerate therapy different,” Weiner said. 'We have to dose it differently and design the treatment regimens different. And we know that the psychosocial issues that they face going through the cancer journey also are unique.”

This year's state cancer report lists cancer as the leading cause of disease-related death in adolescents and young adults. About 70,000 people in that group nationally are diagnosed with cancer every year, and about 7,115 cancers were diagnosed in adolescents and young adults in Iowa between 2004 and 2013 - compared with 1,000 among children age 14 and under.

Although cancers in that middle group accounted for just 3 percent of all Iowa male diagnoses and 5 percent of all Iowa female cases from 2004 to 2013, Weiner said, 'It's a very important population.”

'These are people who are just getting started with their lives and suddenly they are hit with this incredible storm of a cancer,” he said. 'We need to figure out how to treat them medically in the most appropriate way and psychosocially in a way that allows them to get back to their lives as quickly as possible.”

Regarding total cancer numbers in Iowa, the 2016 report projects 16,600 new cases this year and about 6,400 cancer-related deaths. Those numbers are mostly unchanged from last year, when the same number of deaths was projected and analysts expected 16,900 new cases.

The most common type of cancer among females in Iowa is breast, which is expected to account for 2,200 of the new 2016 cases - or 26.8 percent. The most common type among Iowa males is prostate, accounting for 1,550 of the expected new cases - or 18.4 percent.

The deadliest type of cancer among females in Iowa is lung, followed by breast, according to the 2016 report. The most cancer-related deaths among males in Iowa are expected to result from lung and prostate in 2016.

About half of the cancer diagnoses in the adolescent and young adult age group occur in females ages 25 to 39, followed by males ages 25 to 39 at 30 percent. Males and females ages 15 to 24 each accounted for about 10 percent of the cancer cases in that broader middle group.

Cancer incidents within the group vary by gender and race, with females more at risk than males - especially white females - and white males more at risk than those of other races.

That age group does have relatively high survival rates, according to the new report, with 87 percent of Iowans living at least five years - topping national numbers. That, according to Weiner, presents another unique treatment and support challenge for the adolescent and young adult group - long-term side effects.

'If I was treated with a cancer therapy now, well, side effects that might take place in 25 years, I wouldn't worry about too much,” he said. 'Whereas someone whose 17 years old, that could be very different.”

Consider Noah Brown.

He is 23 years old. He lives in Ames and works in downtown Des Moines. Last year, he got married. But, at age 20 as an Iowa State University sophomore, Brown's world was shaken by an unexpected leukemia diagnosis.

'I felt invincible as any 20 year old college student does,” he said.

His symptoms included recurrent strep throat, mouth sores, and then - one night - terrible stomach pain. It landed him in the emergency room, where doctors took blood and came to the probable cancer conclusion.

They directed him to the UI Hospitals and Clinics or the Mayo Clinic in Rochester, Minn. His family chose Iowa, and Brown said he started chemotherapy two days after being diagnosed.

Brown's immediate thoughts, he said, were that he wouldn't be able to go on a mission trip as planned. But he didn't do a lot of Internet searches for life expectancy and survival rates. And he didn't linger on his mortality - even as his kidneys failed and doctors ran into other complications.

Brown credits his positive attitude to his faith and family.

'I didn't think at any point that I was going to die - even when they were pumping blood out of my neck and back in through dialysis,” he said. 'And that's all because of my faith.”

Six months after starting treatment, Brown was back on the ISU campus finishing his degree.

'Looking back on those six months, the time felt like … long - like really long,” he said. 'But now, looking back, that was a really quick recovery from diagnosis and being in treatment to back to college and doing everything.”

Brown is going on three years in remission and credits his effective treatment, quick recovery, and strong prognosis to the specialized care he received.

'I know that it's partially because of the treatment that I received and how affective they were at trying things and rolling with the punches,” he said.

Brown said he even feels gratitude for the experience and the ability it has given him to offer support and encouragement to some of the others in that middle age range facing an unexpected cancer diagnosis.

'Just when I think there's not gonna be any more opportunities to share my experience or help other people, they just keep popping up,” Brown said.