Cancer survivor, advocate urges provider-patient communication about late effects
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Editor’s note: This is the fourth in a series of five stories from ASCO Voices, a session during ASCO Annual Meeting focused on the human side of oncology.
When Phuong Gallagher, BS, was diagnosed with stage IV rectal cancer at age 29, the idea of having “long-term survivorship issues” likely sounded like a dream come true.
Much had to be done before that concept could become reality, though — namely, eliminating the cancer.
“All of these decisions had to be made immediately, because I had to get into treatment,” Gallagher — research advocate training and support manager at Fight Colorectal Cancer, a U.S.-based advocacy organization — said during her ASCO Voices presentation. “My doctors were focused on giving me the best chance at a cure. I felt like I wanted to just get this thing out of me.”
Gallagher’s team acted quickly and, as a result, she is now a grateful 17-year survivor.
However, Gallagher wishes she had known about the “chemo brain” that would impair her memory and cognition.
She would have appreciated a heads-up about the surgery-related Lower Anterior Resection Syndrome (LARS) that left her urgently in search of a restroom wherever she went, and the permanent ostomy placement that would correct the LARS.
She also would have liked to have known about the two canes she would need to walk due to nerve problems, and the sleepless nights that would lead to fatigue.
“These are all things that I now discuss with my medical team, because I’m informed and I know to ask,” Gallagher said. “But when I was first diagnosed, none of that was discussed.”
Knowing what’s coming
At the time of her diagnosis, the only long-term side effects Gallagher was told about were infertility and early menopause.
She said her experience is quite common — patients with cancer are often confronted with an overwhelming amount of information at diagnosis, only to be blindsided years later by late effects of the cancer and its treatment.
“When we know what’s coming down the road, it may not change our decisions. We may still follow the same treatment path,” she said. “However, it gives us the chance to prepare.”
may impact treatment decisions.
For example, Gallagher did not expect her disease biomarkers to change as the result of immunotherapy.
“I’m an educated research advocate, and I had no idea that the immunotherapy I went on could possibly change my biomarkers. Now, instead of being KRAS [wild-type], I am KRAS-mutant,” she said. “That changes my options for future treatments.”
“If providers are not having those conversations, if you don’t build that trust, then it makes conversations harder when you have difficult decisions to make or need to introduce a new idea in treatment,” she said.
‘No decisions about us without us’
The demands placed on oncologists and the limited time they sometimes have with patients is one major reason why potential late effects of cancer and its treatment may not be discussed extensively at the time of diagnosis.
One way to mitigate this is to utilize an institution’s palliative care services, Gallagher said.
palliative care team is very important,” she said. “For us patients, it’s important to understand that this is not hospice, that palliative care is an additional resource to help you through the physical and emotional journey that cancer causes.”
Gallagher said palliative care has helped her navigate issues like pain and armed her with information about challenges she might face during survivorship. She also has worked extensively with a physical therapy team to address some of her issues with mobility.
Honest, complete communication and patient education enables patients to play a more active role in their cancer treatment decisions, Gallagher said.
“That communication is really important — you need to have trust in your team,” she said. “Talking about what the possibilities are now and how they might change your life enables patients to share in that decision making, so we have no decisions being made about us without us.”
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Gallagher P. Long-term side effects: What I didn’t expect. Presented at: ASCO Annual Meeting; May 31-June 4; Chicago.
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