Powell woman diagnosed with extraordinarily rare tumor

Posted 1/26/21

Pat Dunks is not someone who likes to be the center of attention. But she has had to step out of her comfort zone and do something that’s pretty foreign to her — ask for help.

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Powell woman diagnosed with extraordinarily rare tumor


Pat Dunks is not someone who likes to be the center of attention. But she has had to step out of her comfort zone and do something that’s pretty foreign to her — ask for help.

In December, she was diagnosed with paraganglioma, a tumor so rare that there are only two diagnosed in every million tests annually — a one-in-60 milllion chance. Beyond that, Dunks’ tumor is in her head and neck, twined around arteries, veins and nerve centers; of the tiny number of diagnoses, only 3% are in the cranial area.

The first testing was done at Powell Valley Healthcare, where Dunks works as a lab tech. A second opinion was sought through an ear, nose and throat practitioner in Billings.

“He confirmed it, but can’t treat it. He told us ‘you gotta do what you gotta do soon,’” said Doug Montgomery, Pat’s partner.

Dunks is an Air Force veteran, and has worked at PVHC since 2015. She lost her first husband, Jerry, to cancer in 2013. 

Now, at 59, she has to fight that fight all over again. 

The first few days after hearing the second opinion were spent looking for treatment options. That was no easy feat because the condition is very rare. The ENT had suggested finding a specialist, but even Mayo Clinic only offered radiation to stall the growth of the tumor. 

Finally, through a social media group, the couple found Dr. James Liu, a neurosurgeon at St. Barnabas Medical Center in Livingston, New Jersey. Even though he is a head and neck specialist, he has only done 30 paraganglioma surgeries in 14 years. He has a team of three surgeons and two pre-surgery support specialists.

The couple is facing a mountain of arrangements to be made and an avalanche of expenses associated with making the February trip to New Jersey for the surgery.

They are scheduled to fly out Feb. 4, to allow for a week’s quarantine when they arrive. They tapped savings for the tickets and the medical deductible, paid out for testing. 

Montgomery hopes the flight will be reimbursed by Miracle Flight, but there is some question as to whether that organization can help. Usually they only pay for a flight a day in advance of surgery. Research is ongoing to determine if there are exceptions because of the COVID-19 quarantine requirements. 

On top of those costs, there is lodging near the hospital for nearly a month — if all goes well. A relative in the area lent them a car to use while they are in New Jersey, but they will have to supply fuel and pay for parking. Then there are groceries for at least 21 days. 

The surgery itself may last up to nine hours, followed by three days in intensive care and another two or three in standard care. A follow-up appointment is set for Feb. 24 and if all is well, Montgomery and Dunks can travel home Feb. 25. 

A majority of medical costs will be covered by Dunks’ insurance through PVHC. 

“Fortunately I have good insurance,” she said. “We’re covered; at least I think we are.”

But it is the fear of the unknown that keeps Montgomery awake at night.

He recounted the story of another patient who underwent treatment for a parapanglioma last year. She just received a bill for additional surgery to the tune of more than $200,000 that her insurance balked at paying. 

And although Montgomery works as a web developer and host, he is transitioning his work to be at an in-home office full time while Dunks convalesces. That process of recovery is expected to take three months, although some of the patients in their Facebook group are still struggling physically 18 months post-surgery. Even in a best case scenario, Dunks will be out of work for at least four months. Her paid time off will only cover 10 weeks, she said.

So Montgomery put his web skills to work and created a fundraiser page, www.patspara.com. It tells the story of their headlong rush to get to medical care and make all the arrangements within three weeks of diagnosis for a rare condition.

On the page, supporters can donate to the estimated $15,000 of additional money the pair will need to see them through the trip, surgery and recovery period. Supporters can also purchase items featuring Dunks’ art to help pay the bills and sign up for updates on Dunks and how she is doing. The sales of masks, shirts and hoodies will end on Feb. 28 and the items, created with the help of Dustin at DSE Fireworks in Powell, will be shipped by the end of March.

Beyond a staggering medical debt looming, what worries Dunks?

“He [Montgomery] doesn’t know how to do the laundry,” she laughed, joking that, “I’m pretty particular about it so I am going to write out a laundry recipe.”

Many of Dunks’ friends have already agreed to help with the cooking, cleaning and grocery shopping she won’t be able to do after surgery. Hickory Street, one of Montgomery’s clients, is going to bring meals a few times a week as well. 

“It is not my nature to ask for what I need,” Dunks said. “The fundraiser is really hard for me.”

“But she has been really good about letting me do what I need to do [to launch the fundraiser],” Montgomery added.

And in spite of the pressure that has had Dunks adding more meditation to her daily routine, she said she feels blessed.

“I try not to dwell on it, try not to dwell on the negative,” she said. “I am thankful that radiology at PVHC didn’t overlook it [the mass] and that Dr. [Nicole] Comer saw it and knew what it was, and called me right away.”

To find out more about paraganglioma, go to www.pheopara.org. To view the fundraiser page, donate or sign up for updates, go to www.patspara.com.