Mom, 33, shares her experience with benign, rare desmoid tumors

by | Oct 7, 2021 | Golf Balls

When Amy Beitz was seven months pregnant with her second child, she experienced painful urination. At first the doctors thought she had a urinary tract infection. But when antibiotics didn’t help, her doctor did an examination and found something surprising.

“She felt it and said, ‘You have a tumor,'” said Beitz, 33, of Cincinnati, Ohio, TODAY. “It was really scary. I was petrified.”

Living with pain and infertility due to a desmoid tumor is difficult for Amy Beitz. She hopes that by sharing her story, others with the rare, non-cancerous tumors will feel less alone. Courtesy Amy Beitz

Beitz learned that she had a desmoid tumor, a rare type of benign soft tissue. Although they are not carcinogenic, they can have a dramatic effect on a person’s life, causing pain and other problems, such as infertility in the case of Beitz.

“It’s so devastating to my body and my life and the life of my family,” she said. “I just want to help someone who’s going through what I’ve been through.”

Painful pregnancy symptoms

It was 2016 when Beitz was pregnant with her second child and her doctor found something unusual during her examination.

“When I went to an oncologist, she said, ‘I’ve never felt anything like this before.’ And then the gynecologist said the same thing. They said, ‘We have never felt or seen this before,’ ”she said. “When I saw the oncologist, she said, ‘It feels like cement.’ She said, ‘It’s so hard and so smooth.’ “

The biopsy first said the mass contained “nerve bundles,” but a follow-up examination a few months later showed what it was: desmoid-type fibromatosis.

“When we saw that it was a benign tumor, it was really exciting,” said Beitz. “What I didn’t know was how intrusive it was.”

Her tumor was pressing against her ureters, kidneys and “overtaking a lot of muscles”.

“They explained it as a bunch of golf balls, but then they had a bunch of fingers that wrapped around the muscles and went all the way up to the ureter and up against my bladder,” she said. “They had to scrape that off.” everything off. “

Amy Beitz believes it is important to raise awareness about desmoid tumors in order to encourage more research into better treatments. Courtesy Amy Beitz

It caused her right ovary and fallopian tube to “dissolve”. When the doctors removed it, they couldn’t remove the entire tumor. Doctors tried a variety of chemotherapy drugs to shrink it. Everyone had different levels of success. She is currently on a combination of chemotherapy and a drug that will put her into menopause to relieve her pain.

“I have the worst shooting pains where I can’t physically do anything. It’s like I have these really bad nerve pains every 30 seconds that send bumps through my body, and I also have the bulk pain itself that is throbbing at times, ”she said. “I always know when it’s active because it has this burning, itching, and throbbing feeling.”

Desmoid tumors

Although desmoid tumors are rare, they can still affect a person’s health dramatically.

“A desmoid tumor is not a full-blown cancer,” said Dr. Breelyn Wilky, a medical oncologist at the University of Colorado Medicine studying soft tissue and bone cancer, TODAY. “As far as we can tell, only about 3 to 5 patients per million are diagnosed. The most common types of desmoids we see come either from people who have had surgery or an injury. “

The tumors form when scar tissue cells called fibroblasts continue to grow after the injury has healed.

“It can sometimes happen without an injury, or it can happen if there is an inappropriate response to the injury and it doesn’t shut down. So you get this overgrown scar tissue that ultimately forms a tumor, ”said Wilky, who did not treat Beitz. “It can literally be anywhere from head to toe – wherever those fibroblasts just choose to tune in.”

Desmoid tumors are different from cancer because they don’t spread. But they can be extremely disruptive.

“They can form a very large, annoying, painful mass that can interfere with normal function, particularly of the surrounding body structures where it is,” said Wilky.

People at higher risk include:

  • People with an injury or surgery.
  • Pregnant people.
  • People with familial adenomatous polyposis.

“Pregnant women are at higher risk of developing desmoid tumors and we don’t fully understand why,” said Wilky. “Part of this is related to estrogen exposure during pregnancy. But obviously not every woman gets a desmoid when she is pregnant. So it is not fully understood. “

Treatment varies for the tumors. Wilky said 20% of them are getting smaller and some are even disappearing.

“When you are pregnant, you might think that the estrogen is broken down after the baby is born and the tumor could go away. It turns out that most of these patients actually need some type of treatment, ”she explained. “Once the treatment is over, you have a very good result, which means that the desmoid usually does not grow back as aggressively.”

While the surgery removes the mass, it can also stimulate growth.

“There are very high (probabilities) of desmoid tumors that will recur after surgery – up to 40 to 50%,” said Wilky. “For the most part, we no longer jump into surgery.”

While chemotherapy can reduce some of them, targeted treatments for cancer often work better and have fewer side effects. People with hormone-induced tumors can take estrogen blockers.

“Some patients really don’t have many symptoms, but there is a psychological fear of knowing that something is foreign in their body,” she said. “There can be an enormous amount of pain and dysfunction.”

Living with Desmoid Tumor

Not being able to have another baby was tough for Beitz. But she recently found a surrogate mother for her embryo and is expecting her third child.

“It took me four years to come to terms with this and pain management in general,” she said. “It’s difficult to live with pain every day. It’s difficult for my children to watch. “

Beitz hopes to raise awareness to fuel research into treatments and help others understand them.

“There is an unknown thing in your body that can take over and wreak havoc,” she said. “I wish it was taken more seriously. It’s just such a rare tumor. If they did, the lives of so many people, including mine, would be easier. “