When a cancer doctor got cancer: Lessons in providing better care for patients

Dr. Kellie Schneider is a surgeon specializing in treating patients with gynecologic cancer.

She also is a breast cancer survivor.

Schneider, who is a part of the team at Novant Health Cancer Institute - Elizabeth, works with cancer patients as they decide the next step of treatment. Her own experience — starting with a shocking diagnosis — gave Schneider new hard-earned insights on providing attentive and compassionate care.

A few months after she ended breastfeeding her youngest child, she noticed a lump in her right breast. An ultrasound — used because she had dense breast tissue — didn’t find anything unusual. After all, she was just 36, a mother of three young children, and had no known history of breast cancer in her family.

Doctors don’t recommend a mammogram until the age of 40, unless there’s a history in the family.

A few months later, when she was treated for a hernia repair, she asked her doctor to feel the lump, which was still there. Her doctor insisted on another exam.

This time she got a biopsy, which revealed cancer cells in the milk ducts of the breast but that they had not spread into the breast tissue. It was also possible some of the cancer cells may have started to reach breast tissue, but it was not confirmed. The condition is known as ductal carcinoma in situ with possible micro invasion.

Since the cancer hadn’t spread to her lymph nodes and the nature of the cancer was ER negative (meaning that it didn’t need the hormone estrogen to grow), Schneider did not have to get chemotherapy or undergo radiation treatment. She chose to get a double mastectomy and implants.

But her breast reconstruction still proved to be difficult. Schneider had 5 subsequent surgical procedures that summer alone to treat an infection, “probably because I wouldn’t just stay out of work,” she said. She loved taking her kids to the pool, but that summer she couldn’t go because she still had surgical drains inserted.

“I really had a rough 2015,” Schneider said. That was an understatement.

Her colleague, Dr. Janelle Fauci, remembers Schneider returning to work soon after a surgery, “It was easy for her to dive back into work and stay distracted,” Fauci said. Schneider worked too hard, she said, that’s just the way she is.

But as a doctor devoted to caring for others and a fellow at The American Congress of Obstetricians and Gynecologists, she made a promise to herself. She’d take what she learned during that neverending year of treatment and recovery and apply it to caring for her own patients.

Here are some of the takeaways from her year-long journey.

The importance of communication

When Schneider finally got a biopsy, it was on a Friday, and she agonized over the weekend waiting to hear the outcome. Now Schneider makes sure patients get notified as soon as possible, including avoiding a painful weekend without knowing something.

“I know how miserable that is to wait until you know what it is,” she said.

Time also warps during treatment. “You don't have time to think, and when you're done, and you have time to think, then you start worrying about ‘What if it comes back?’” She explains to patients that feeling that way is understandable.

Even years out from treatment, Schneider still can lose a sense of perspective. She gets a headache and goes down that “Oh my God, a brain tumor” rabbit hole.

Prioritizing mental health

Treatment might end; it doesn’t mean you’re done healing.

Schneider admits to having “almost post-traumatic stress.” She endured anxious days and sleepless nights. During her reconstruction, she continued to work even when she was not feeling well. She felt guilty, especially about the nurses she worked with, when she couldn’t make it to work.

Add to that: A slow recovery, a fear of recurrence, and worries that she was becoming too big a burden on her friends and family after a year of needing help with one thing after another.

It led to Schneider taking anti-anxiety medication for three months.

Being diagnosed with breast cancer at age 36 — only 1 in 8 invasive breast cancers are diagnosed in women under the age of 45, according to BreastCancer.org — also led Schneider to lose a sense of security about her health. That’s helped her remind patients to check in with themselves.

“I always talk to patients after diagnosis, to reassure them that those feelings of anxiety and those sorts of things are very normal,” she said.

Getting a second opinion

Schneider talked to a second doctor, even though months had passed since her initial suspicion. There’s never a problem with getting a second opinion, she said. “That was kind of what I wish that I had done or had said something to somebody earlier.” (Related story: Want a second opinion? Here’s how to ask.)

Empathy and compassion

Her initial suspicion was in August. Her diagnosis — a 7 cm tumor, or about 2.76 inches — came months later. What made her hesitate to bring it up again to until she was being treated for another condition? “I should have advocated for myself. I'm a doctor and I'm a cancer person and I'm a cancer professional,” she said.

While undergoing treatment, Schneider’s doctors took time to explain everything to her. None of them made her feel rushed.

“I always think about how scared I was and how much I didn't know what to do,” she said. “I am also very empathetic to the idea that something catastrophic is going to happen in your life when you didn't expect it.”

Schneider is direct about sharing her experience with patients who are overwhelmed, terrified, or both. “I reassure them that that happened with me and I've moved past it and I'm fine,” she said.