By Emma Avila, firstname.lastname@example.org, writer for IU Health’s Indianapolis Suburban Region
After battling cancer and the effects of treatment for two decades, Hannah Wu and her care team at the IU Health Schwarz Cancer Center in Carmel will soon have a nationwide platform to discuss survivorship.
Hannah Wu has spent the last 20 years as a head and neck cancer survivor.
In 2003, at the age of 25, Wu began experiencing nose bleeds while she was in graduate school at Western Illinois University. Her doctor at the time told her it could potentially be due to dry air in her residence hall, but soon after, she began experiencing severe headaches.
After her doctor ordered a CT scan, a tumor was discovered. Wu was diagnosed with cancer, stage three nasopharyngeal carcinoma.
“It was huge. It was everywhere,” she said.
Her mother lived in Indianapolis and helped Wu get into what is now the IU Health Simon Cancer Center. She went through 40 rounds of radiation and three treatments of cisplatin, a type of chemotherapy drug. The tumor responded well to the treatments, but Wu’s body did not.
“I lost 80 pounds, and I had radiation burns on my neck,” she recalled.
After confirmation that the treatment had worked, Wu followed up with comprehensive scans and saw an ear, nose and throat physician periodically for five years.
“I felt like I was out of the scare zone,” she said. “I lived my life.”
Another round of symptoms
Sixteen years later, in 2019, she started experiencing symptoms caused by the radiation treatment all those years ago.
“I couldn’t swallow. I started getting dizzy all the time.”
She also began experiencing more severe neck pain.
“I had no job at the time because I couldn’t turn my neck and had to get intense physical therapy,” Wu said. “That January I got a feeding tube because I couldn’t swallow.”
The radiation treatment in the 2000’s had caused radiation fibrosis, a condition that affects the soft tissue in the areas she received radiation. She has to undergo surgery every four months to re-open her airways and help with swallowing.
Additionally, in the summer of 2020, she was diagnosed with carotid artery blockage.
“All the stuff is all related to my cancer treatment,” Wu explained. “It’s all radiation damage.”
Then, in 2022, Wu experienced a hemorrhagic stroke while at home. She recognized the signs immediately and called for her mother to call 911.
After the stroke, she also began experiencing a condition called posterior reversible encephalopathy syndrome, more commonly known as PRES. It is a clinico-radiological syndrome characterized by a headache, seizures, altered mental status and visual loss.
Road to recovery
Now, Wu is recovering from the radiation damage and stroke.
She comes every week to the IU Health Schwarz Cancer Center in Carmel for speech therapy and occupational therapy.
Carrie Morris, an occupational therapist and certified lymphedema therapist, helps Wu through lymphatic massage. Wu developed lymphedema in her left arm and head. Through the massage, Morris helps get the lymphatic fluid moving so it isn’t accumulating and causing discomfort.
Additionally, Wu sees Julia Porter, a speech-language pathologist and the onocology rehabilitation team lead, every week for speech therapy. They primarily work on swallowing, jaw mobility and managing the long-term effects of radiation fibrosis. Wu sometimes sees Erin Kollada, another speech pathologist, as well.
“Meeting her where she is in her journey at that point in time in her journey is what we focus on,” Porter explained.
“They’re amazing. They’re awesome. I love them,” Wu added.
Throughout her time at the facility, Wu has also seen Beth Maier, another occupational therapy assistant and certified lymphedema specialist, Tom Gallinaro, a physical therapist, and Erin Kollada, a speech-language pathologist.
An opportunity to educate
Through her experiences, Wu was connected to the Head and Neck Cancer Alliance (HNCA), an organization that Porter is involved in as well. The organization is focused on the prevention, detection, treatment and rehabilitation of oral, head and neck cancer through public awareness, research, advocacy and survivorship.
The HNCA is partnering with the American Head & Neck Society to hold a survivorship symposium in Indianapolis on October 7, 2023. Wu will be joining as a survivor and speaker for a roundtable discussion.
There are lots of areas of health to address when you are a survivor,” Wu explained. “In general, you cope the best that you can. Mental health is so important and often overlooked. Survivors should remember to see a psychologist or psychiatrist if experiencing mental issues like anxiety and depression.”
“Hannah represents late and chronic effects of radiation from back when early rehabilitation efforts weren't standard of care,” Porter added. “For people newly diagnosed today, we hope with proactive intervention and changes in radiation delivery that does its best to spare or reduce dose volume to crucial swallowing structures, that we can prevent or mitigate the profile of symptom burden she's experienced related to her treatment.”
Porter will be joining IU Health Schwarz Cancer Center head and neck surgeon Dr. Michael Moore as speakers as well. Moore will give opening and closing remarks while Porter will speak about being an HNCA ambassador and will also join Wu’s roundtable discussion on the importance of rehabilitation in oncology.
“Hannah provides a really good perspective of living with the burden of the cancer and the treatment as well as the effects that can have long-term,” Porter said. “She embodies survivorship.”