What is a mesothelioma patient advocate?
That question does not have a quick or simple answer.
“I feel like so much goes into it,” Jenna Campagna said on the latest Mesothelioma Guide podcast.
And she would know.
Jenna is the registered nurse and lead patient advocate (Karen Ritter is our new registered nurse and lead patient advocate) for Mesothelioma Guide, a position she has held for five years. She joined the latest Mesothelioma Guide podcast to discuss her role as a patient advocate, among other topics.
She described the evolution of treatment for mesothelioma, the importance of quality of life, why survival and prognosis statistics are misleading, and more. The podcast interview was a conversation lasting more than 40 minutes and covering a lot of potential questions that people affected by this cancer may have.
Jenna dedicates her professional — and sometimes personal — time to helping people affected by mesothelioma. What does “helping people” entail? Pretty much everything.
Jenna helps patients and their families find treatment. That process begins with learning specifics about the diagnosis and sharing her knowledge on the available therapies that may work.
“A big part of my day is answering questions,” she said.
She also helps patients find a mesothelioma doctor or cancer center. The priority is finding a specialist experienced specifically in this cancer. Location is next on the list, but Jenna also guides people through getting financial help for traveling to out-of-state hospitals.
Jenna serves as a support system for patients and their loved ones. She spoke in-depth on the podcast about this aspect of her job.
“A lot of people will go to their doctor appointment and call me up and say, ‘Okay, the doctor said this, this and this. What do you think? What do you feel?’” Jenna explained. “We don’t necessarily give medical advice, but we do try to educate as much as we can so that patients and family members can make those difficult decisions and have peace of mind.”
Jenna also discussed how much mesothelioma treatment has changed in the past half-decade. When she started as a patient advocate, surgery and chemotherapy were the primary two options.
It has since expanded to include tumor treating fields, immunotherapy and even new radiation techniques. Those advancements have improved the discouraging statistics patients often see about mesothelioma survival.
As a patient advocate, Jenna’s role can be summed up with this phrase: giving patients power through knowledge. She’s the top resource for anyone seeking answers or resources to fight their cancer.
“Take that step to reach out to us,” Jenna said. “I want to be able to recommend what you can do to live the life you want to live and be there for your family, grandchildren and whatever else. Providing hope is always our goal. That’s what we try to impress upon people. This may be an incurable cancer, but there is hope out there and we’re here to help and assist you.”
If you’d like to speak directly to a patient advocate about your mesothelioma, please email our current nurse practitioner and patient advocate Karen Ritter at karen@mesotheliomaguide.com.
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