Karen Leonard: Rare Diagnosis Sparks a Journey of Support and Advocacy
— by ABCD board member, Gina Rich
December 11, 2018
If you’ve never heard of Inflammatory Breast Cancer, Karen Leonard wants to change that. Diagnosed in 2009 with IBC, Karen knows firsthand how often this rare and aggressive form of breast cancer is misdiagnosed, and how important it is to connect with others who have been on the same journey.
“IBC is sometimes called ‘no lump’ breast cancer because the symptoms are very different,” explains Karen. In IBC, the affected breast tissue might look infected and be warm to the touch, with swelling and redness, dimpled or thickened skin, and other symptoms. According to the IBC Network Foundation, IBC cases represent only one to five percent of all breast cancer diagnosed in the United States.
Because IBC symptoms resemble an infection, patients are at greater risk for misdiagnosis than with more common forms of breast cancer. This is precisely what Karen experienced. After visiting her doctor with concerns about breast swelling, pain, and the “orange peel” skin characteristic of IBC, she returned home with a prescription for antibiotics to treat what the doctor assumed was an infection.
When symptoms did not resolve, her doctor prescribed a second antibiotic. Karen also had a mammogram during this time, but as this type of imaging is ineffective in diagnosing IBC, her results came back normal.
Finally, Karen convinced her doctor to run further tests, and she underwent a biopsy and MRI, which confirmed that she had IBC.
The difficulty of diagnosing IBC before outward physical signs are noticeable means the disease is especially aggressive and fast-moving, requiring a treatment plan that’s similarly aggressive. Karen underwent immediate chemotherapy followed by a bilateral mastectomy. After surgery, Karen completed a second course of chemotherapy, then radiation.
During the whirlwind of treatment, Karen reached out to ABCD. She soon connected with Diane, a Mentor and longtime IBC survivor. “It was so comforting to have a supportive person who had been through the same thing,” Karen recalls.
Karen felt strongly that she wanted to offer the same support to others. In 2013, she began serving as an ABCD Mentor. She currently mentors 12 other women who are in various stages of IBC. Some of the women are local, while others live throughout the country. Karen enjoys connecting with women of all different backgrounds, and notes that some of these relationships have become very close and mutually supportive over the years.
Passionate about mentoring and increasing awareness of IBC, Karen brings remarkable enthusiasm and commitment to her volunteer role. From sending flowers to her matches when they have surgery, to keeping them updated and engaged with thoughtful texts, to accompanying one woman to an out-of-state doctor’s appointment, Karen goes above and beyond expectations.
Not a person who backs away from tough conversations, Karen understands that depression and anxiety often accompany a breast cancer diagnosis. She has been instrumental in ensuring that ABCD Mentors have updated information regarding suicide prevention resources.
When she’s not mentoring, Karen volunteers for other organizations, from the Christmas Clearing Council of Waukesha County to the Pine Ridge Reservation in South Dakota. She also finds joy in working through her personal journey list – not a traditional “bucket list,” she’s quick to note. Some highlights include rediscovering her love of the piano, traveling to observe rare crane migrations, and whale watchingin the San Juan Islands. In 2017, Karen became the proud owner of a yellow Volkswagen Beetle – a car she had coveted for decades. Karen’s favorite achievement by far was seeing her daughter, Catherine, graduate from law school recently.
What would Karen say to others who are facing breast cancer? “Just know that there are people who will listen and not judge you,” she says. “Even if you’re angry and have a million questions.”
