Life Moving Forward

Adults who survived childhood cancers find specialized care at Doernbecher

Childhood cancer survivor Pierrette Lo

A cold that wouldn’t go away and a noticeably swollen lymph gland under her left arm finally convinced Pierrette Lo to visit the doctor. The diagnosis: Hodgkin’s lymphoma. Not the kind of news anyone wants to hear, especially a bright 16-year-old girl just finishing high school.

But Lo was lucky. As cancers go, Hodgkin’s is one of the most curable. After two months of radiation treatments Lo’s cancer was in remission and she was able to head off to college with her friends. Her follow-up visits to the cancer center went from once a month to once a year, and eventually, to none at all.

“My doctors told me there might be long-term effects from the treatment, but when you’re 16, that just seems so far away. I didn’t even want to think about it then,” Lo said. She felt like she “fell off the map” a couple of years after her treatment. Like many facilities at the time, her treatment center wasn’t equipped to provide much follow-up care for survivors.


Past cancer, present concerns

Now in her early 30s, Lo is healthy and active. She has a master’s degree in molecular biology and works as a writer of educational material for oncologists. She and her husband moved to Portland two years ago and are still discovering the region’s many bicycling routes and hiking trails. She enjoys running and is proud to have just completed her first 15K run.

But as Lo has come to realize, cancer survivorship doesn’t have a finish line.

While more than 80 percent of children survive cancer, other health problems often arise from the cancer or its harsh treatments. Survivors face potential second cancers, increased incidence of heart, lung and other organ disease, and a range of social and emotional challenges as they resume normal life.

A few years ago Lo began seeing studies about the long-term effects of cancer treatments. Even with her skills and training, it was overwhelming. She felt like there was a lot she was missing. She needed help and support.

An Internet search led her to OHSU Doernbecher Children’s Hospital’s program for adult survivors of childhood cancers. “It turned out to be exactly what I was looking for,” she said. “It was really exciting.”


A good survivor

The survivorship program staff became thoroughly acquainted with Lo’s background before she set foot in the clinic. Susan Lindemulder, M.D., program director, says that weeks, sometimes months, of work go into preparing for a patient appointment that can include a full day of tests and visits with different specialists. The clinic team gathers treatment histories from all of the doctors involved in a patient’s care over the years. “My whole team has the patient’s history in hand so they are prepared with questions to ask and treatments to propose,” said Lindemulder. “A lot of people drive a long way to see us, and we want to make their visit as productive as it can be.”

The information and care plan Lo received at the survivorship clinic is helping her be, in her words, a good survivor. “It’s reassuring to know that someone understands the scope of survivorship. At this point the risks are there and there’s nothing I can do to change that. But knowing exactly what I need to do so I can be on top of things is the best thing I can do for myself.”