Valerie Fraser

Inflammatory Breast Cancer Patient Stories

Inflammatory breast cancer specialist, Dr. Massimo Cristofanilli, and Valerie Fraser

On New Year's Day 2007, Valerie Fraser was looking forward to a great year. She had returned from a heartwarming trip to her parents' homeland in the British countryside. The trip was prompted by the recent death of her own mother to breast cancer, for whom Valerie was the caregiver. She went to meet many family members for the first time and visit the land in which her parents were raised.

That morning Valerie noticed her breast was slightly swollen. "It was hardly noticeable, but I had concerns since I had hurt the same breast accidentally while raking leaves." At the urging of her best friend, Valerie called her doctor to have it checked. Within days she noticed her breast tissue was becoming thicker, heavier and more swollen. Little did she know, the symptoms she was experiencing were due to the rarest and most aggressive form of breast cancer, Inflammatory Breast Cancer or IBC. She would also learn that she had a second type of breast cancer simultaneously, intraductal carcinoma.

Inflammatory Breast Cancer (IBC) is often misdiagnosed because its symptoms mirror a breast infection.

Repeated mammograms and ultrasound were performed to investigate why Valerie's breast was swollen and painful. Her doctor suspected there was an abscess in the breast and prescribed a course of antibiotics.

"That day I came home and just couldn't rest ... I knew something very ominous was going on and spreading quickly. I could feel it moving through my breast tissue downward." Valerie wasted no time and made an appointment to have a biopsy with her local breast surgeon. Her husband, Raymond, searched for information on her symptoms on the Internet. He found her symptoms closely matched those of IBC and braced himself for the results of her biopsy. Within days, Valerie developed the other tell-tale signs of IBC - a "peau d'orange" textured rash and nipple retraction.

Valerie decided to educate herself about IBC as quickly she could. She recalled, "If I truly had IBC, I wanted to find the leading expert and learn the most effective means of treatment. I believed I only had one shot at beating it, and each decision going forward would be critical to my survival."

The biopsy results confirmed Valerie's diagnosis of IBC.

"Suddenly, my life was abruptly interrupted," she admitted. "I felt like I was in a holding pattern and the daily ease that I took for granted before would be forever challenged." Valerie vowed to push fear aside as she focused her strength and resources on becoming an IBC expert. She set up consults near her home in Michigan and travelled over 1,300 miles to see Dr. Massimo Cristofanilli, a leading expert on this disease, who was at M.D. Anderson in Texas at the time and is now at Fox Chase Cancer Center. Dr. Cristofanilli had recently conducted a recent positive IBC study with a drug called Lapatanib. Valerie's friends rallied to support her over the coming weeks and months.

"As I learned more about IBC and realized that there was no real standard of treatment, I knew I needed to be in the hands of a research oncologist with the level of experience and knowledge of IBC specifically, that being Dr. Cristofanilli." When Valerie met Dr. Cristofanilli, she felt he took the time to answer all of her questions and explained why IBC must be treated differently than other breast cancers. A PET/CT scan was ordered to determine whether the cancer had spread.

"Dr. C walked in with a smile as he told me the fantastic news, there was no evidence of metastasis," she shared. "I could tell he really cared about me, and my treatment finally started to move as quickly as I needed it to."

"Dr. Cristofanilli is a true pioneer and compassionate humanitarian who cares deeply for his patients. He is passionate in his quest for the cure to this disease."

While her own attitude was instrumental to her recovery, Valerie says the support of her family and friends was equally important. Her son, Colin, who was a college freshman at the time of her diagnosis, has accompanied his mom to her appointments both in Houston and Philadelphia. "Of course, I couldn't have done it without Dr. Cristofanilli," Valerie shared. "I was most fortunate to have had my treatment with Dr. C in Texas and now he continues to care for me at Fox Chase Cancer Center."

"I believe Fox Chase will offer new and exciting opportunities for Dr. C to continue to expand his IBC research and to continue to offer his patients the very best in treatment and care," she continued. "I am honored to call Dr. Cristofanilli my doctor."

Valerie continues to receive a targeted therapy, Herceptin, and in 2010, she celebrated 4 years without recurrence. She has devoted herself to research, advocacy and to bringing IBC awareness, education and support nationally to women and the medical community. Valerie serves as Vice-President of the Michigan Breast Cancer Coalition, is involved in the Michigan State University Breast Cancer and the Environment Research Program and the University of Michigan Breast Cancer Advocacy & Advisory Committee, as well as serving on the Investigational Agent Selection Committee for I-SPY2 Breast Cancer Trials.

Valerie believes strongly that early and accurate diagnosis of IBC can save lives.

Valerie is often called as an expert to help women with this diagnosis and takes every opportunity to educate and inform the general public and the medical community through her many organizational contacts. "The most important thing is for women to know that this disease is out there, and that it often gets misdiagnosed," she says. "If you suspect you have symptoms of IBC, take steps to rule it out first and don't take no for an answer."