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updated: 4/13/2014 8:08 AM

Tight wedding ring, other subtle changes pointed to tumor

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  • The changes were so gradual, Phil Van Duyne of Roselle didn't realize he had acromegaly, a tumor-related disorder that causes gigantism in children and growth issues and life-threatening health problems for adults.

       The changes were so gradual, Phil Van Duyne of Roselle didn't realize he had acromegaly, a tumor-related disorder that causes gigantism in children and growth issues and life-threatening health problems for adults.
    Bev Horne | Staff Photographer

  • Waiting for Phil Van Duyne to emerge from surgery to remove a tumor on his pituitary gland, wife Kathy (wearing MOM shirt) sits at Northwestern Memorial Hospital with their children, from left, Mary Kate, Megan, Margaret, Philip and Monica.

      Waiting for Phil Van Duyne to emerge from surgery to remove a tumor on his pituitary gland, wife Kathy (wearing MOM shirt) sits at Northwestern Memorial Hospital with their children, from left, Mary Kate, Megan, Margaret, Philip and Monica.
    Courtesy of Van Duyne family

  • Saying their family is "better than ever" after she had surgery to remove a tumor on her pituitary gland, Melissa Wall, a pastor at Deer Grove Covenant Church in Palatine, shares a moment with husband, Fredrik, and their son, Erik.

      Saying their family is "better than ever" after she had surgery to remove a tumor on her pituitary gland, Melissa Wall, a pastor at Deer Grove Covenant Church in Palatine, shares a moment with husband, Fredrik, and their son, Erik.
    Courtesy of Wall family

  • Phil and Kathy Van Duyne didn't recognize the gradual changes in his face that signaled a life-threatening tumor. But his sister Diane Waite, left, recognized her brother's symptoms in a medical article, and sister Kathleen Manske broke the news to Van Duyne.

      Phil and Kathy Van Duyne didn't recognize the gradual changes in his face that signaled a life-threatening tumor. But his sister Diane Waite, left, recognized her brother's symptoms in a medical article, and sister Kathleen Manske broke the news to Van Duyne.
    Courtesy of Diane Waite

  • Because he's always had large hands, Phil Van Duyne of Roselle didn't think much of it when his wedding ring got snug. But growth in his hands, feet and facial features were symptoms of acromegaly, caused by a tumor on his pituitary gland.

       Because he's always had large hands, Phil Van Duyne of Roselle didn't think much of it when his wedding ring got snug. But growth in his hands, feet and facial features were symptoms of acromegaly, caused by a tumor on his pituitary gland.
    Bev Horne | Staff Photographer

  • Since surgery to remove a tumor on his pituitary gland, Phil Van Duyne of Roselle had seen his brow and jaw line soften.

       Since surgery to remove a tumor on his pituitary gland, Phil Van Duyne of Roselle had seen his brow and jaw line soften.
    Bev Horne | Staff Photographer

  • In his office as president of Itasca Construction Associates, Phil Van Duyne calls up the photographs on his computer screen that show the changes in his appearance caused by a tumor on his pituitary gland.

       In his office as president of Itasca Construction Associates, Phil Van Duyne calls up the photographs on his computer screen that show the changes in his appearance caused by a tumor on his pituitary gland.
    Bev Horne | Staff Photographer

  • Operating through the nasal cavity, Dr. James Chandler, surgical director of neuro-oncology at Northwestern Memorial Hospital, effectively cured Phil Van Duyne's growth issues and other health problems by removing a tumor from his pituitary gland.

      Operating through the nasal cavity, Dr. James Chandler, surgical director of neuro-oncology at Northwestern Memorial Hospital, effectively cured Phil Van Duyne's growth issues and other health problems by removing a tumor from his pituitary gland.
    Courtesy of Northwestern Medicine

  • Video: Tumor causes growth issues

 
 

At an age when men typically develop wrinkles, wake up with a few new aches and find gray in the hairs they haven't lost, Phil Van Duyne of Roselle says the changes were so gradual they gave no clue what the tumor in his head was doing to him.

Married since 1987, he and his wife, Kathy, knew that entering their 50s brought changes. The wrinkles in Van Duyne's forehead seemed more pronounced.He needed reading glasses. His feet got bigger. His wedding ring grew so snug he had to have it re-sized. He developed Type 2 diabetes.

"I just thought we were getting older," she says. "It was so gradual. People say, 'Didn't you notice?' and I really didn't."

Phil's sisters noticed the changes in their younger brother's face, but it wasn't until Diane Waite happened to read a medical story in The New York Times Magazine that she correctly diagnosed her brother with acromegaly -- a growth-hormone disorder caused by a tumor in the pituitary gland. That disorder causes gigantism in children and odd bone growth and other ailments in adults.

"In the article it went on to list some of the symptoms, and I thought, 'These are all things I recognize in Phil,'" says Waite, 65, who lives in Oakland, Calif. Seeing her brother only a couple times a year, she noticed how his brow and jaw line became more pronounced and gaps appeared between his teeth.

"Oh, my gosh. Philip does have these symptoms," sister Kathleen Manske agreed after the family gathered for her son Andy's graduation party in June 2012. "It's very difficult to approach someone and tell them you notice changes in their face."

A registered nurse who works with hospice patients, Manske, 61, was deemed to be the family member best-suited to voice their fears to Van Duyne.

"I had some vodka slush left over from the graduation party, so I took a stiff drink and called him up," remembers Manske, who lives in Whitefish Bay, Wis., near Milwaukee.

Reacting the way his loved ones had hoped, Van Duyne took his sisters' concerns to his primary care physician. Tests showed that his growth hormone level, which should have been 10 or less, was a whopping 25.5. An MRI scan found the tumor in his pituitary gland, located on the front of his brain near the optic chiasm, where his optic nerves cross.

If the tumor hadn't been discovered, "chances are good he would have gone blind," says Dr. James Chandler, co-director of the Northwestern Brain Tumor Institute and surgical director of neuro-oncology at Northwestern Memorial Hospital in Chicago. While the tumor causes gigantism in growing children, untreated acromegaly in adults can cause pressure on the brain and lead to heart problems, an increased chance of colon cancer and other life-threatening issues.

In August 2012, the surgeon, able to enter Van Duyne's brain without cutting through his skull, successfully removed the tumor.

"They go up through your nose and scoop out the tumor," says Van Duyne, who had surgery on a Friday and began to notice improvements soon after he came home on Sunday. His diabetes went away. His shoes fit again. He looked more like he used to.

"I'm not going to be on GQ covers or anything like that, but my features have softened," he says.

A former high school basketball player, the 6-foot-1, 54-year-old father of five always has been known for his large hands, so he was used to the comments before his hands grew even larger.

"Even when we were dating, people would say, 'Man, he's got big hands,'" says his wife, who stands just short of 5 feet tall.

As president of Itasca Construction Associates, Van Duyne shakes a lot of hands. Whether he's making connections through his involvement with the Greater O'Hare Area Regional Business Association or just greeting fellow members of the St. Walter Parish in Roselle, he often hears comments on "my catcher's mitts. It's a running joke."

Researching his ailment ("I have an academic Google degree in acromegaly"), Van Duyne found stories of people with acromegaly such as Andre the Giant, the 7-foot, 500-pound wrester and actor who died of heart problems at age 46, and Richard Kiel, "the tall, evil guy from the James Bond movies."

If Van Duyne's tumor had been allowed to spread beyond the pituitary gland and into the brain, removal would have been far more difficult, and treatment probably would have included radiation and hormone treatments.

The diagnosis of a tumor frightened Kathy Van Duyne. Her father, Daniel O'Shea, didn't have acromegaly, but he died at age 66 in 2001 from complications after radiation was used to attack a tumor in his pituitary gland.

Still, "I'm eternally grateful that she (Diane) happened to read that article," Kathy Van Duyne says.

The signs can be obvious, but "family members and significant others are reluctant to bring it up for fear of insulting them," Chandler says of some of his patients. "It never ceases to amaze me when people come in with visible manifestations of acromegaly."

At the wedding of his daughter, Margaret, to Michael Gawrych, three months before Van Duyne's diagnosis, some family and friends noticed changes, but no one said anything.

Chandler says he once diagnosed the tumor of a longtime co-worker just by looking at her face. "One day, as I looked up at her, it dawned on me this lady had acromegaly," he says.

For another of Chandler's acromegaly patients, 35-year-old Melissa Wall of Hoffman Estates, the tumor hadn't yet caused any noticeable changes in her face. A routine physical showed an increase in a hormone produced by her pituitary gland. A follow-up blood test indicated the likelihood of a tumor.

A pastor at Deer Grove Covenant Church in Palatine, Wall and her husband, Fredrik, worried about the implications for them and their young son, Erik.

"My husband and I were sitting in the car, and we both just started bawling," Wall remembers. "With a brain tumor, we freaked out. It was absolutely terrifying."

She broke the news to her congregation, and Erik, now 5, who responded by saying, "I'm going to pray for your head."

Having some of the same symptoms as Van Duyne, Wall says she chalked up the change in her shoe size from 8 to 10, and her suddenly snug wedding ring, to physical changes that come from being a mom in her 30s.

"After the surgery, my feet have gone back to normal, and my wedding band fits," says Wall, who adds that the surgery last June helped her family focus on the important things in life. "My husband said we had a rocking marriage before, and now it's even better. We're just so tight."

Acromegaly patients need periodic checkups to make sure the tumors haven't returned.

"He's cured, for now," Chandler says of Van Duyne, noting tumors of his kind return in about 10 percent of cases.

"He doesn't look like he did when he was 25, but none of us do," Waite says of her brother.

Glad that some of the visible effects of acromegaly are fading, Waite says she's even happier that her brother no longer has diabetes or high blood pressure and should enjoy a long, healthy life.

Van Duyne and Wall say they hope their stories tip off other acromegaly patients to the early signs of a tumor.

"When you notice changes," Kathy Van Duyne says, "don't just assume that it's because we're getting older."

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