On October 24, Heather Allen celebrated her 31st birthday. Turning 31 isn’t always considered a milestone, but after the year she had, Heather and her family had reason to celebrate. Last year, four days before she turned 30, Heather was diagnosed with inflammatory breast cancer.
Inflammatory breast cancer (IBC) is a rare, fast growing cancer that doesn’t present the typical lump associated with other forms of breast cancer. Changes that women with IBC often notice on the skin are firmness, redness, a rash that looks like an orange peel, nipple inversion, itchiness, and in some cases, excruciating pain.
“I knew nothing about inflammatory breast cancer. Part of it could be that I was young, but I had never even heard of it,” says Heather. “The only thing I knew about breast cancer was to look for a lump and to start having regular mammograms at age 40.”
Heather first noticed her symptoms when she was breastfeeding her youngest daughter. The symptoms did not impair breastfeeding function but did not resolve after treatment.
“Typically IBC is difficult to diagnose because it looks like an infectious process. The cancer cells invade the lymphatics of the skin in a way that resembles the lymphatic congestion that our body uses to contain and fight infection,” says McFarland Clinic Surgeon James Partridge, MD, who was able to eventually diagnose Heather. “IBC is best diagnosed with a skin biopsy done in office.”
“Mastitis, an infection of the breast, is a common problem and often associated with a mass like effect. IBC is a very uncommon problem and also often associated with a mass like effect. To complicate things even further, there are non-infectious causes for mastitis that can present with a tender red breast,” says Dr. Partridge.
“After my diagnosis, I was frustrated. How could I demand a biopsy for a disease that I didn’t know existed?” says Heather. “Once I was diagnosed with IBC, I immediately started researching,” says Heather. “The statistics out there are scary. Eventually I banned myself from Googling and relied on my family and friends to keep me informed on treatments.”
Two days after her diagnosis, Heather began treatment, which consisted of chemotherapy and radiation at McFarland Clinic, and eventually a mastectomy.
Despite this devastating diagnosis, Heather continued with her life as normally as possible. Throughout treatment, Heather worked at the USDA Labs as a microbiologist and raised her two daughters with husband Ian. She even started a blog.
“Writing a blog fulfilled a need of mine,” says Heather. “It was cathartic, made me organize my thoughts and allowed me to do a task that was familiar. It was also a great way to keep my family and friends informed.”
Having a large, supportive family also helped Heather cope with the added stress in her life. Her brother Ryan flew in from Seattle for every “hard” chemo session she had.
Heather’s feelings of frustration inspired her twin sisters Holly Gragert and Hilary Sawyers to begin working on a state proclamation declaring one week in October to be dedicated to Inflammatory Breast Cancer Awareness. Through the help of Patti Bradfield, president of the Inflammatory Breast Cancer Foundation, Hilary and Holly contacted Iowa Governor Terry Branstad’s assistant Ann about setting a date.
“We want to educate the public on what IBC is and medical professionals. Everyone needs to be able to recognize that the symptoms are closely associated with a common breastfeeding condition called mastitis, but when it doesn’t clear up after treatment further testing needs to be done,” says Hilary.
“Women need to be their own advocates,” says Holly. “The motto of IBC is ‘When in doubt, rule it out’. To try for a national awareness week, ten states needed to have proclamations. Family members in other states helped get their states signed up to reach the needed ten.”
On October 27 at 1:45 p.m., Governor Branstad will be signing the Inflammatory Breast Cancer Awareness Week proclamation.
“I am excited to get the word out about IBC. People shouldn’t take for granted that they are young, a diagnosis can happen at any age,” says Heather. “People just need to be brave and talk about their illness. It is possible to fight breast cancer.”
Friday, October 21 marked another important day in Heather Allen’s life–her first clean PET scan. Her last chemo treatment will be on November 2.
To learn more about IBC, check out the IBC Foundation.