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Rare, dangerous tumor successfully removed

It started out as what appeared to be a flareup of chronic tonsillitis. But even after Detroit Lakes resident Andy Francis had surgery to remove the offending tonsils last December, the swelling remained.

So his doctor began treating him for an infection.

"The swelling still didn't go down," he said. So they began looking for other possibilities. It was then that his doctor began noticing how unusually high his adrenaline levels were. Eventually, his family physician, Dr. Julie Larson, recommended that he take a CT scan of the swollen area.

What they found was a tumor -- but it wasn't just any kind of tumor. What Francis had was a rare form of tumor, a vagal paraganglioma.

"The Mayo Clinic (in Rochester, which specializes in treatment of the rare tumor) told us they only see 6-12 patients a year for this, from all over the world," said Francis's wife, Cristy. What made this tumor particularly unusual, she added, is that it was secreting adrenaline.

"His adrenaline levels were 10 times higher than a normal person's, which was causing his blood pressure to elevate," she said.

The tumor was also unusually large, being more than 4 inches long and 2 inches wide.

"They figured I'd had it for 10-12 years -- it was very slow growing," he said.

Unfortunately, the reason why it had grown undetected so long was because it was located deep inside Francis's neck, amongst the nerves that controlled his swallowing mechanism, vocal cords, even blood pressure. It was also perilously close to one of his two carotid arteries, which control blood flow to the brain.

Even after Francis made an appointment at the Mayo Clinic in Rochester -- which is actually the leading clinic in the world for treating this rare form of tumor -- the first two surgeons he consulted there refused to attempt surgery.

After an MRI (magnetic resonance imaging) scan and blood tests were ordered, Francis met with two of the Mayo Clinic's chief surgeons, one of whom was an ear, nose and throat specialist and the other, a neurologist. Together, they decided to do the dangerous surgery.

"Until then, no one else we talked to would even attempt it," said Francis. "That got us scared."

One of the reasons why doctors were so reluctant to attempt the surgery was because the tumor was so rare, as well as its location. Cristy said she and Andy had learned there were only a handful of clinics in the world that had experience in treating a tumor of this type, and amongst those clinics, Andy was just the 24th patient to be diagnosed with it in the past two years. Fortunately, out of those 24, 19 were treated at Mayo.

"We were really lucky to have a clinic in Minnesota (that specialized in treating these tumors)," Andy added.

And in another stroke of luck, the very rareness of Andy's tumor meant he qualified to receive a relatively new form of testing -- for free.

"They were doing a study, and they wanted 230 patients for the study," Andy said. "I was No. 24 on the list."

But there were some drawbacks as well. To do the surgery, Andy had to take medication to suppress his natural adrenaline production. This was to keep him from experiencing hypertension, which could lead to a stroke or a heart attack.

In addition, Andy was put on a high-salt diet and told to drink lots of water, because his doctors wanted him to have a higher water retention level prior to surgery. (It also helped keep him from getting sick from the medication.)

"He gained 25 pounds (as a result of the high-salt diet)," Cristy said.

The surgery was performed on Aug. 17. Before that, Andy and Cristy spent about three weeks in Rochester, so his doctors could monitor his treatment more closely.

Once he went in for surgery, the process took approximately seven and a half hours, Cristy said. Afterward, Andy was left with nerve damage that affected his motor skills on his right side -- his swallowing mechanism as well as his ability to smile, eat, blink, etc. His right shoulder was also affected.

Eventually, Andy may be able to have further surgery to repair some of the nerves that were severed as a result of the operation, but he's already improving steadily as a result of daily therapy with a speech pathologist.

"I was on a liquid diet right after the surgery, for about three weeks," Andy said.

"Now he's advanced to regular food -- he's doing pretty well," Cristy added. "It takes longer for him to eat, and he has to really concentrate, but we hope (that ability) will come back with time."

"They're (the doctors) really impressed with how well I'm able to swallow," Andy said.

Cristy also noted that Andy's facial expression are starting to come back as well.

"My right side was numb, but it (sensation in his facial muscles) is coming back pretty good," Andy added.

Though Andy feels "very lucky," he knows he's not completely out of the woods yet. Doctors have told him they were only able to remove about 99.5 percent of the tumor.

Fortunately, the tumor wasn't malignant, so further treatment wasn't called for. He will need to go back in about three months, for further testing, and then he will need to get an MRI done every year after that.

"He's going to need to go back for MRI's every year to make sure it hasn't come back," Cristy said.

"I sure hope not," Andy added.

One bit of extremely good news is that the elevated blood pressure Andy experienced as a result of his high adrenaline levels did not have a lasting effect on his heart.

"The doctors say it helps to be healthy (overall) and young," Cristy said. "My grandmother said he wasn't lucky, he was blessed."

Andy is the youngest of 13 children (9 boys, 4 girls) born to Roland and Gloria Francis of Mahnomen. He and Cristy moved to Detroit Lakes in 2001, and they have one son, Zachary, who is 3. Cristy is a child protection worker at Becker County Human Services, while Andy has been running his own business, Andy Francis Landscaping and Construction.

On Oct. 29, three of his brothers who live in the area will be hosting a benefit for Andy at the Detroit Lakes American Legion, from 11 a.m.-3 p.m. The public is invited.

Vicki Gerdes

Staff writer at Detroit Lakes Newspapers for the past 16 years, currently editor of the entertainment and community pages as well as covering city council and the Lake Park-Audubon School Board. Living in DL with my cat, Smokey.

(218) 844-1454