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A point person to walk with brain tumor patients every step of the way

When a person receives a brain tumor diagnosis, his or her initial reaction is often a mix of shock and fear. He or she must quickly decide upon treatment options, designate a caregiver and determine how to pay for medical care. To help patients and families deal with an overwhelming diagnosis, a woman who has been in their shoes created a fund for a point person who could walk with them every step of the way. Hear Betsy Orr’s story and learn why she and her late husband Larry decided to give to the Piedmont Brain Tumor Center.

A shocking diagnosis

“When something is wrong or you have indications that something is not well with your loved one, you don’t think of a brain tumor,” says Betsy Orr, a Piedmont Brain Tumor Center donor. “In our case, I was thinking maybe depression or stroke – anything but brain cancer.”

Orr remembers when her husband Larry was diagnosed with glioblastoma multiforme, the most common and aggressive malignant primary brain tumor, at Piedmont Atlanta Hospital. “When they come to you and say that there is a mass on a CAT scan, that you’re not leaving the hospital and it could be brain cancer, that’s usually the first time you’ve considered that diagnosis,” she says. “It’s quite shocking.”

Orr’s experience at Piedmont

Immediately after diagnosis, physicians met with the Orrs to discuss Larry’s treatment options. “The very first weekend we had to be here at Piedmont, we had so much attention, so much explanation and so much patience from the doctors about what would happen next and what the surgery would involve,” says Orr.

The medical team explained, step-by-step, how they would treat Larry’s cancer. His surgery took place on a Monday and he stayed in the hospital for three days afterward, going home on Thanksgiving Day. Though Larry eventually lost his battle with the disease, Orr remembers the support and cooperation their family received from the Piedmont team. “Everyone was incredibly cooperative,” says Orr. “There was never a thought that we would donate anywhere else.”

Establishing a patient resource

The Orrs established a fund for a brain tumor navigator, who would serve as a clinical coordinator for other patients and families. The navigator helps families through their initial reaction to a brain tumor diagnosis and subsequent treatment plans, tailored to the patient’s individual needs. “That is what we felt so overwhelmed with when we first got his diagnosis,” she explains. “It’s something you have to react to. You don’t come seeking a professional at Piedmont to discuss potential brain cancer and options. You’re reacting once you get a diagnosis.”

Support for caregivers

“It’s of great help to a family member in particular,” she says. “Someone in the family automatically becomes their caregiver because the patient is probably going to undergo some very aggressive treatments. That caregiver needs a point person who can talk in their language, who can explain options they can understand.” 

“It’s the best way to begin treatment for brain cancer or a brain tumor.” Orr wants patients and families to know that the patient navigator is a value resource available at no cost to them. “I’m excited,” says Orr. “This is the right time. We’ve been establishing parts of the Brain Tumor Center as we go and now the time is right to move forward.”

For more information on patient navigation, visit the Piedmont Brain Tumor Center.

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