Diagnosed with cancer, mom-to-be makes tough decision
Woman credits online support group, including friends, family, neighbors and strangers, with helping her through process
Jill Wrobel had to make a quick, difficult decision after she was diagnosed with a rare eye cancer while she was pregnant. She sought the counsel of friends, family, neighbors and strangers online to see what the best course of action was, and chose to have her left eye removed. (Michael Tercha/Chicago Tribune)
Wrobel remembers her doctor warning her to not look for answers on untrusted sites on the Internet. The online horror stories would only lead to imaginary symptoms and undue stress, the doctor said.
Instead, the doctor suggested two or three sites she approved of for pregnancy advice, and Wrobel said she dutifully obeyed.
But just a few months later, Wrobel found herself scouring the Internet, looking for even more urgent answers. Not about her pregnancy, but about an extremely rare cancer — choroidal melanoma, or cancer of the eye.
Wrobel had noticed blurriness in the periphery of her left eye on New Year's Eve. A week later, she was diagnosed with the rare cancer. Because of the size of the tumor and the proximity to the optic nerve, she was told she needed to decide quickly whether to undergo radiation treatment, which could harm her unborn baby, or have her left eye removed.
Her online searches on the rare disease, with about 1,200 cases diagnosed a year in the United States, only brought her the fear and grief her doctor had warned her about.
Wrobel, an actuary with PricewaterhouseCoopers who considers herself a "math engineering person" and "logical thinker," decided to attack the problem with her skills. With her husband, Jeff, she set out to research the cancer and her possible treatment as they had all the major decisions in their lives, from the purchase of their car to the planning of their wedding.
Networking became Wrobel's top priority. She sent out an email to her family and friends, beseeching them not for sympathy, but information. She asked them to find anyone with a prosthetic eye, anyone diagnosed with cancer while pregnant, anyone who had a choice to keep or remove a body part and anyone with choroidal melanoma.
"Given the fact that I had to make an irreversible decision in a short amount of time, I had to understand the risks so when I pulled the trigger I had a sense of peace about it," Wrobel said.
In a matter of days, Wrobel connected with 18 people with her type of eye cancer — the youngest was 13, the oldest 60. She took a disability leave and spent several days returning emails and calling survivors. And all of them pointed to an eye cancer guru in Philadelphia, Dr. Carol Shields.
Soon, Wrobel was in Shields' office. The day after her appointment, on Jan. 25, she had made her decision. She had her left eye removed.
During the decision-making process and after, Wrobel received more than 100 emails a day from her impromptu support group. Her connections to those with the same eye cancer, and those diagnosed with cancer while pregnant, provided "a much needed sense of understanding, perspective, hope and drive," she said.
One of her most unusual connections was with Steve Wayland, 39, a lawyer who, like Wrobel, specializes in business mergers and acquisitions and had choroidal melanoma. And he lives just four blocks from Wrobel.
Wrobel and Wayland connected through email and Imerman Angels, a support group that pairs cancer patients with survivors of the same disease. Wayland, who had his eye removed about two years ago, said "it was a pretty big shock" to meet a neighbor with the same disease.
Before she went to Philadelphia for surgery, Wrobel and her husband met Wayland at a local bar.
"I was very nervous," Wayland recalled. "She was still deciding whether or not to remove her eye. I didn't want to plant fears. On the other hand, I knew it was important and helpful."
Wayland was impressed at how organized Wrobel was and how much information she had digested.
"The first meeting was a little awkward. I knew Jill wanted to see what my prosthetic (eye) looked like. I knew this was helpful," he recalled. "And of course my heart was breaking. She is brave, relaxed and also scared to death."
Wayland and Wrobel now meet occasionally for coffee and email often. When Wrobel is having a bad day, that's often when an email from Wayland appears, she said.