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Fighting back after baby's death, endometrial cancer

Fighting back after baby's death, endometrial cancer

(University of Utah Health Care)

Estimated read time: 5-6 minutes

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Losing her baby was the most devastating event Carri Lyons ever faced, but life didn't cut her a break after it dealt her that tragedy. Within a year, Lyons was diagnosed with endometrial cancer, the most common gynecologic cancer.

"It was tunnel hearing," Lyons said of the moment she heard the news. "I was like, How can this be happening? I run marathons. I'm exempt from cancer."

She was just 34, still eager to have a child, when her doctor broached the idea of a radical hysterectomy.

"It was heartbreaking, absolutely heartbreaking," Lyons said. "We had just lost a baby, and that was tragic enough. Now this was happening. We thought, 'How are we ever going to do this?'"

A hysterectomy wasn't her only option. She could've gone a more conservative route and taken the hormone progesterone in an attempt to cure the cancer. But if she got pregnant again, her hormones would go haywire, and the cancer was likely to return. She also could decide to freeze her eggs, but the process isn't like donating sperm.

"You have to go on hormones to get viable eggs, and in my case, those hormones could have infused the cancer even further," Lyons said.

Crushed, she made the difficult decision to have her uterus, ovaries, cervix and fallopian tubes surgically removed.

"I thought 'I can live but my soul has just died,'" Lyons said. "I just wanted to hide in a cave forever."

"I thought 'I can live but my soul has just died,' "I just wanted to hide in a cave forever."

Lyons isn't the typical endometrial cancer patient. Most women diagnosed with the disease are postmenopausal. The cancer occurs when there is an abnormal proliferation of cells in the endometrium — the lining of the uterus that sloughs off during a menstrual period, said Elise Simons, M.D., a gynecologic oncologist at Huntsman Cancer Institute at the University of Utah.

This abnormal proliferation can occur when, simply put, a woman has too much estrogen that is not balanced properly with the other main female hormone, progesterone. Unfortunately, hormone replacement therapy, if a woman still has her uterus, can itself lead to endometrial cancer.

"We still see cases of patients who have been on prolonged estrogen therapy without adequate progesterone, and in those cases, the therapy is almost certainly implicated in their development of endometrial cancer," Simons said.

However, it's more common that being overweight causes the out-of-whack hormones that can lead to problems in the endometrium.

"I think it's little known in the community that being overweight — or having an excess of peripheral fat stores — leads to an excess of peripherally circulating estrogen. Ultimately, that can lead to cancer."

"I think it's little known in the community that being overweight — or having an excess of peripheral fat stores — leads to an excess of peripherally circulating estrogen," Simons said. "Ultimately, that can lead to cancer."

Simons said it's important for women to proactively address weight loss. She points out that we are making large strides in reducing the incidence of most gynecologic cancers, but we haven't had the same success with endometrial cancer, and this likely parallels the current obesity epidemic. Genetics also play a significant role so Simons says it's crucial for women to be familiar with their family's history with cancer and to be sure to share that information with their doctor.

The good news is — in stark contrast to cancers of the ovaries — endometrial cancer presents with identifiable symptoms early in the disease. Just watch for abnormal vaginal bleeding. In younger women, this can be a change in bleeding patterns, such as heavier periods or spotting between periods. In postmenopausal women, it means any kind of bleeding.

"It's worth noting — I hear this from women all the time — that they didn't actually have bleeding," Simons said. "They just sort of had a brown or reddish discharge so they didn't think anything of it. But that too is abnormal if you've gone through menopause."

Most of the time, it won't be cancer, Simons said.

"But in the cases that are identified early, it really changes the way that endometrial cancer is managed, so seek evaluation earlier rather than later," she said.

Because it can be caught so early, most women will need a hysterectomy but won't need chemotherapy or radiation, which was true in Lyons' case. Just a month after her surgery, she found herself in the throes of menopause 15 years ahead of schedule.

"I was sitting on the couch watching 'Golden Girls' of all things when I got my first hot flash," Lyons said.

Ever since her diagnosis, she'd felt angry and meek, but within a few months of her surgery, she stormed back into life and joined Huntsman Hometown Heroes, a program that helps participants reach their running and cycling endurance goals while raising money for cancer research. She ran two marathons in four weeks and got an idea.

Lyons and her husband Edwin decided to raise money to adopt a child by riding their bikes from Huntsman Cancer Institute to their home state of Nebraska. It was a grueling 1,083-mile, 13-day ride that raised $28,000 — 20 percent of which they donated to HCI. Three years later, in August of 2014, the couple traveled to Ethiopia and brought back with them their daughter Anavie Hope.

"It was indescribable," Lyons said of the joyous airport arrival party in which Anavie and her proud parents descended an escalator to cheers from friends and family.

It hasn't been all smooth sailing since then. Lyons was diagnosed with colon cancer earlier this year.

"I'm two for two," Lyons said of beating cancer again. She wrote the book Along Came Hope about the death of her baby, clashing twice with cancer, and adopting her daughter.

Today she's healthy and wants to encourage others to stay on guard against cancer.

"Make sure you go in for your yearly exam," Lyons said. "I have a friend who's 40, and she said she hasn't been to the OB-GYN in five years, and I said 'Are you kidding?' Stay on top of those appointments. And if you're bleeding, go get it looked at. It could be nothing, but it could be something."

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