The group currently has about 35 members -- patients and their family members -– who share stories and experiences at the quarterly meetings, helping to support each other through the recovery process. Muhammad also brings in guest speakers, such as a nutritionist to help patients in their long road back to eating –- and swallowing –- normally. She said meeting attendance has doubled in the past year.
Members of the support group also help new esophagectomy patients. “We pair our new patients on the unit with someone from the support group to help them in their recovery,” Muhammad said. To help these patients even more, Lynn created a ‘pre-class’ of pre-surgical esophagectomy patients to begin the support process early.
Now, Muhammad is reaching out to the community, bringing awareness about the disease and its causes and warning signs (see below). “April is Esophageal Cancer Awareness month and we want to get the word out.” She held two outreach events at HUP and the Perelman Center earlier this month and is also helping the wife of a former HUP patient who passed away to promote Rick’s Run * (named after the patient), the first annual local run/walk in support of esophageal cancer research. Proceeds from the walk will be donated to the Abramson Cancer Center.
She has also reached out to nonprofit organizations like the Esophageal Cancer Action Network to help with outreach efforts. The Penn Medicine CAREs grant helped to fund the outreach events and will also help to cover some of the costs associated with future support group meetings and special events Muhammad has planned for the group.
Feedback from patients and members of the support group keep Muhammad inspired. For example:
- “The Esophageal Support Group has given me hope and strength by being able to talk and be open with the other members. I have been cancer-free for seven years and try to help others learn from my journey.”
- “My first support group meeting was 1 month before my surgery. The advice and support provided at that meeting was invaluable to my recovery. Just hearing from others who had been there helped me through those 8 days and beyond.”
- “After almost three years of being out there by ourselves, my wife and I are so glad to have this community as support. It is making a major difference in our lives to know we are not alone.”
"Our interactions help me as well, seeing how strong and fearless these people are,” Muhammad said. “For me, nursing is a profession of reciprocation. I often get much more than I give. I love what I do and I am grateful to do it at an institution like HUP that supports my efforts."
If you are involved in a community outreach activity, you may be eligible to receive a Penn Medicine CAREs grant. For more information and to apply, click here and click on ‘Foundation Grant.’ Deadline for the next round of grants is June 1.
*The first annual Rick’s Run will take place on Saturday, April 27, at Ridley Creek State Park in Delaware County. Registration begins at 8 am; the race starts at 9 am. Click here to register online, go to . If you have any questions, contact Judi Curtis at 610-960-1774 or [email protected].
Photo above: Nurses in the Esophagectomy Support Group include (l. to r.) Jenny Lynn, Beauty Averion, Ashley Kilgoe, and Phanerrica Muhammad. Not pictured: Katelyn Engelbert
Untreated GERD Can Lead to Esophageal Cancer
GERD (gastroesophageal reflux disease) occurs when food and liquid from the stomach move back up into the esophagus, causing irritation in the esophageal lining. Symptoms of GERD can include heartburn, regurgitation, nausea after eating, belching excessively, and a sour taste in your mouth. Untreated, this condition can cause significant damage to the lining and in some cases lead to Barrett’s esophagus, a pre-cancerous condition, and esophageal cancer.
Esophageal cancer is deadly, due in part to symptoms that appear in the late stages of the disease, for example, when patients have a hard time swallowing because of a tumor in their esophagus. Though considered a rare disease, it takes more American lives each year than melanoma skin cancer or cervical cancer.
But, if caught in an early stage (with an upper endoscopy), patients have a very good chance of survival. It’s important to speak with your doctor if you have:
- More than occasional heartburn
- Pain or difficulty swallowing
- A family history of Barrett’s esophagus or esophageal cancer
- An ongoing, unexplained cough
- A hoarse voice that’s lasted several weeks
- A long-lasting unexplained sore throat
- Problems with coughing or choking when you lie down.