RCC patient advocates provide community and more
BY SHELBY KNOWLES
“Once you hear the word cancer, you can’t forget it,” said Tony Towler, diagnosed with stage IV renal cell carcinoma in 2011.
From the negative experience with his first physician to conflicting information about treatments, a lack of support, and the day-to-day isolation associated with a terminal illness, from the beginning Mr. Towler wondered if there were others who understood his situation.
Coincidentally, Dr. Brugarolas and the UT Southwestern staff were rolling out a patient advocacy program and asked Mr. Towler to be the first to join.
“I came to my appointment and was sitting in the waiting room. Mr. Towler was walking around handing out refreshments,” said Ms. Chelette, a former emergency department nurse. “He stopped what he was doing and started giving me overwhelming encouragement.”
The Kidney Cancer Program Patient Council at UT Southwestern is among only a few of its kind, according to Dr. Brugarolas. The advisers are current stage IV patients who consult with and encourage fellow cancer patients. While Mr. Towler and Ms. Chelette both have renal cell carcinoma, they provide their education and encouragement to all kidney cancer patients.
The Patient Council has grown to include five members – including Mr. Towler and Ms. Chelette – and collaborates with researchers and clinicians. The council members use their experiences with the disease to help someone in the waiting room, someone dreading that visit, someone needing support.
“I wanted to make my role as a patient advocate a part of my husband’s legacy,” said Ms. Moschos. “I know it would make him happy for me to help others navigate this experience.”
The advocates fill a spectrum of support roles – from understanding caretaker to empathetic patient to educator to friend.
The Patient Council is still evolving and adjusting to the needs of patients. While hoping to take patients’ minds off scans, tests, and the disease, the Council members are looking beyond the relief they provide others to finding other ways to have an impact against the disease.
There is less awareness regarding renal cell carcinoma than other diseases, such as breast cancer or leukemia, Ms. Chelette and Mr. Towler said. The Council members are not only trying to expand the community of patient advocates but also to raise awareness about renal cell carcinoma and to increase funding for research nationwide. Ms. Chelette, with the help and support of the Council, has raised nearly $200,000 for kidney cancer awareness.
While the advocates raise money, back in the waiting room, they offer the emotional and practical support only experience brings.
One newly diagnosed patient expressed concern with his medication. He was taking it in the morning, prior to breakfast, and it would make him nauseous for the rest of the day. Mr. Towler, who had previously taken the same medication, advised him to take it at night instead so that the symptoms wouldn’t persist throughout the day.
“You don’t want someone to give up on treatment before they’ve given it a chance,” said Ms. Chelette, who has similar experiences sharing tips and tricks with fellow patients.
“We’re another set of friends with a not-so-great common denominator,” laughed Ms. Moschos.
After meeting with patients in the waiting room, Mr. Towler receives his IV cancer treatment. In December 2017, Mr. Towler started on nivolumab. However, scans showed progression so, in March, ipilimumab was added to his treatment.