Taming the Beast

Krysti Hughett listens intently to the woman on the other end of the phone. From her side of the conversation, it’s clear—there is one more breast cancer survivor now living in Hughett’s home city of Indianapolis, Indiana. She reassures the woman and then offers to have someone from the Young Survival Coalition office, where Hughett is a resource specialist, to go with the woman to the doctor.

It’s a 24/7 job for Hughett, and one she embraces with the enthusiasm of a zealot despite dealing with her own ongoing treatment for lung metastases. Diagnosed with stage 4 bilateral inflammatory breast cancer in March 2005, Hughett, 45, was told, until the day she was diagnosed, that the rash on both her breasts was not breast cancer. It made sense to Hughett, who was convinced that the rash was a reaction to a new feather mattress her husband bought a month before.

“There was no lump, and a mammogram and sonogram three days before diagnosis showed nothing,” she says. “I was a medical consumer who had followed my breast [exams] since age 20 when I had a benign lump—but I was willing to believe the medical professionals.”

It was a young family internist who prompted Hughett to push for a diagnosis, setting her up with a surgeon while eight core biopsies were being analyzed. Hughett says the surgeon didn’t think it was breast cancer, but conceded that he had no idea what he was looking at and suggested she go to his mentor and teacher Robert Goulet, MD, at the Indiana University Melvin and Bren Simon Cancer Center.

“Dr. Goulet knew by looking at it that it was inflammatory breast cancer,” Hughett says.

From there things moved quickly. After four weeks of chemotherapy, Hughett had a bilateral mastectomy. The cancer continued to confound doctors by coming back as triple negative, and then showing as HER2-positive in later pathology. Scans also showed multiple spots on her lungs, meaning the cancer was stage 4.

It was a shock for Hughett, the mother of three daughters—the youngest only 6.

She immediately began preoperative chemotherapy, and had a rush, she says, when she realized she was sitting in the same chemo chair that Lance Armstrong used when he got his chemo from Lawrence Einhorn, MD, at Indiana University. Then she began researching her condition.

“Two weeks after surgery, I met Ginny Mason, the executive director of the Inflammatory Breast Cancer Research Foundation, who was doing a meeting in Indianapolis,” Hughett says. “I walked in and met all these inflammatory women, and it was amazing.”

Hughett says she dived right into the information, saying her motto has always been, “better the beast I know than the one I don’t.”

Since then Hughett has advocated for herself by seeking out three clinical trials that have kept her lung mets stable. She jokes that she comes to SABCS to shop for her next clinical trial.

“I am a clinical trial junky,” she says.

In the almost five years since her diagnosis, she has served on the Susan G. Komen for the Cure speaker’s bureau and co-founded the Indy SurviveOars Dragon Boat Racing Team. She has had extensive science training through a research advocate mentor program at IU Simon Cancer Center Breast Cancer Research Program and through the National Breast Cancer Coalition’s Project LEAD. She also reviews grants for the Department of Defense. In 2008 she turned her volunteer job with the Young Survival Coalition into a full-time job, facilitating the National SurvivorLink and MetsLink peer support programs.

She underwent breast reconstruction in 2006 in part because she wanted to have the radiated skin—where the rash covered her breasts and chest—removed and replaced by skin from her abdominal area.

She says the best way to create an advocate is to misdiagnose a woman and then hit her with inflammatory breast cancer.

Yet, there is no hint of anger in Hughett, who says she chose not to do anger after watching other women and deciding she didn’t want to live that way.

“I turned it over to God,” she says. “I can’t change anything with anger, so there is no sense in it.”

This article is a part of CURE’s 2009 San Antonio Breast Cancer Symposium coverage. To read more articles from SABCS 2009, visit sabcs2009.curetoday.com.