Kathy Patton

Inflammatory Breast Cancer Patient Stories

Breast cancer specialist, Dr. Massimo Cristofanilli, and Kathy Patton

Several years after undergoing treatment for Ductal Carcinoma In Situ (DCIS), Stage 0 breast cancer, Kathy was diagnosed with Inflammatory Breast Cancer (IBC). She and her husband decided to travel to Houston, Texas to see Dr. Massimo Cristofanilli, one of the nation's leading experts in this field.

In 2010, Dr. Cristofanilli joined some of the country's top breast specialists at Fox Chase Cancer Center in Philadelphia, opening a similar clinic to the country's first Inflammatory Breast Cancer Research Program and Clinic at M.D. Anderson in Houston, which he founded in 2006. Kathy was elated to learn that Dr. Cristofanilli was coming to Philadelphia. This is her story.

On February 1, 2000, Kathy's life changed forever when she was diagnosed with Ductal Carcinoma In Situ (DCIS), also known as Stage 0 breast cancer, in her left breast. The good news is that this early stage breast cancer is non-invasive and localized to the duct of the breast. The bad news for Kathy was that her tumor eventually progressed to Inflammatory Breast Cancer (IBC), the most aggressive type of breast cancer.

After her initial treatment for DCIS was performed at her local hospital, Kathy was prescribed Tamoxifen for 5 years to reduce risk of recurrence. Due to severe side effects she experienced, Kathy stopped taking the medication. A shadow of a doubt always lingered in her mind and she wondered if her cancer would recur because she wasn't taking preventive medication. Kathy questioned her oncologist about an alternative drug to Tamoxifen, but the doctor assured Kathy that she had nothing to worry about.

Just 2 months shy of being considered cancer-free for 6 years, Kathy woke up for work one morning and noticed her left breast was severely swollen and abnormal in color and texture.

"These changes in my breast literally occurred overnight."

"I couldn't imagine what the problem was," said Kathy. "My doctor prescribed an antibiotic, believing it was a breast infection."

On December 1, 2005, Kathy had a biopsy which confirmed a diagnosis of Inflammatory Breast Cancer (IBC). The surgeon explained that although the cancer was found in the same breast, this was considered another primary breast cancer. Several years later, after becoming active with the IBC Support List, Kathy met several other women like herself, who were initially diagnosed with DCIS and also developed IBC in the same breast. She still finds it hard to believe that it is just a coincidence and wonders if there is a connection.

Upon learning she had IBC, Kathy remembered she "broke down and was a complete, emotional wreck." She began treatment at another hospital in Philadelphia. After a difficult course of chemotherapy, Kathy had a radical mastectomy of her left breast and a simple mastectomy of her right breast. She continued to take the drug Herceptin for one year, but was not a candidate for radiation at that time because she had more than 6 weeks of radiation on the same breast several years earlier.

While Kathy was in treatment, she was unaware that her husband, Russ, was searching the Internet to gather as much information as he could about IBC. Finally, Russ discovered IBC specialist Massimo Cristofanilli, MD, in Texas.

"Russ wanted me to see Dr. Cristofanilli because of his vast experience treating patients with IBC."

The Pattons traveled to Texas for her initial appointment in August 2006 to obtain a second opinion. (She was considered cancer-free by her Philadelphia oncologist.) Kathy described Dr. Cristofanilli as a physician with an incredibly gentle, caring manner who impressed her and her husband with his vast knowledge of this rare disease.

"I knew, right then and there, that I was in the very best hands."

"Dr. Cristofanilli is a crusader for IBC," she said. Although Kathy's test results were sent to Dr. Cristofanilli, he insisted that tests be performed at his facility. "He ordered more testing than I ever had the entire time I was at my local hospital," Kathy shared. "I knew, right then and there, that I was in the very best hands and felt safe."

The first time he met Kathy, Dr. Cristofanilli looked into her eyes and said, "Kathy, you must FIGHT!" She never forgot those words and felt so fortunate to have him by her side.

Dr. Cristofanilli confirmed that Kathy was, in fact, cancer-free. The radiation oncologists met with Dr. Cristofanilli to discuss her case, and all agreed that the risks were not significant enough to give Kathy radiation.

"I was so impressed by Dr. Cristofanilli's dedication and concern for his patients."

"Dr. C.'s dedication and concern for his patients were far above and beyond anything I had ever seen or experienced in my 56 years," noted Kathy, who has been to countless doctor appointments.

Kathy and her husband began to fly from Philadelphia to Houston every 2 months from August 2006 to December 2009 for treatments. "It was wonderful to meet so many other women with IBC and share our stories," Kathy said. "It feels so good to speak with people who you can truly relate to because they understand how aggressive IBC can be."

As is common with IBC, Kathy experienced a recurrence.  It was September 2007 and she was home in Pennsylvania, so she underwent a biopsy in Philadelphia. Next, Kathy received a call at work and learned that although the tumor was small, it was malignant. It looked like a tiny skin tag, which was only in the skin and not the chest wall; however, the Philadelphia oncologist diagnosed Kathy with metastatic IBC, Stage IV. Kathy's local oncologist suggested she undergo a procedure to widen the margins (the area around the tumor), which was more painful because the surgeon went deeper and removed muscle. After the procedure, Kathy was told she was cancer-free. She requested that all of her test results be sent to Dr. Cristofanilli.

After Dr. Cristofanilli reviewed the results, he asked to see Kathy right away. Following an exam, he ordered more tests, including a PET/CT Scan and ultrasound of her regional nodes (these had not been performed at her local hospital).

Because Dr. C was so thorough and knew which tests needed to be performed, he discovered cancer in 2 lymph nodes in Kathy's right armpit, which identified her second recurrence.

"My recurrence might not have been detected."

"If I stayed with my local team of doctors, my recurrence might not have been detected and could have continued to grow," shared Kathy. IBC is treated very differently than other types of breast cancer, therefore, it is vital to see someone who specializes in IBC, like Dr. Cristofanilli and his colleagues at Fox Chase.

To treat Kathy's recurrence, Dr. Cristofanilli recommended systemic treatment (drugs) rather than surgery. He enrolled Kathy in a clinical trial, which she had to stop after 8 months due to slight progression. "Dr. C. arranged for me to remain on the study drug (Lapatinib) after my second recurrence in December 2007," explained Kathy. Since December 2007, Kathy's treatment regimen has changed at different times as she continues to remain in active treatment to fight the nodes in her right armpit.  She hopes to reach NED (no evidence of disease) again, which would be her third time. As IBC is considered a chronic disease, Dr. Cristofanilli's goal for patients diagnosed with metastatic IBC is to keep their cancer contained.

"People need to be proactive about their health and should be honest with their doctors," explained Kathy, who believes that if she had not seen Dr. Cristofanilli, she would not be alive today to tell her story. "IBC spreads very quickly and both you and your doctor must stay on top of it," she stated.

Kathy was elated when Dr. Cristofanilli joined the staff at Fox Chase in 2010.

In 2010, Dr. Cristofanilli was appointed Chairman of the Department of Medical Oncology at Fox Chase Cancer Center. "You can only imagine how happy I was to find out Dr. C. was coming to Fox Chase in Philadelphia," shared Kathy. "He is not only an amazing, well-rounded, knowledgeable medical oncologist and researcher, but he is the most supportive, kind and dedicated doctor I have ever met. I guess you could say I'm his #1 fan, but then again, Dr. Cristofanilli has many fans!"

When Kathy learned that Dr. Cristofanilli was coming to Fox Chase, she was almost at a loss for words.  "Of all the places in the world Dr. C could go--and I would follow him anywhere--he came to my backyard," she said. "I was extremely happy and excited because Dr. C. will help so many people in this area."