CINCINNATI (FOX19) - After advocating for answers for years, a local woman discovered she has an incredibly rare breast disease, and she was shocked when she learned how she contracted it.
Tami Burdick of Cincinnati has dedicated her life to helping educate others about the disease she has been battling. Her medical journey began when she came home from a business trip to Connecticut in early 2017 and found she had a lump in her right breast.
At the time, the now 43-year-old feared her diagnosis would be cancer, but instead, doctors told her she had granulomatous mastitis, or GM.
GM is described by medical experts as a “rare inflammatory breast disease” that can be incredibly painful. Burdick says her anxiety grew when she searched all over the internet and could not find much information about it.
“Learning as much as I could about the rare condition, and I saw the pictures, the horrendous pictures of women who are victims of the disease. It’s a deformity,” Burdick said. “It’s a bunch of mixed emotions for sure. You know, I cried. It’s very scary, you know, the uncertainty. You’re wanting answers, but they’re not quite there.”
Eventually, Burdick came across a Facebook support group, where she says she connected with other women from all across the world who also have GM.
That is how Burdick met Dawn Wade, who lives in Louisville. Wade was also diagnosed with GM after she noticed a change in her body in August 2019.
“I had a lump in my breast, and then it just grew exponentially from like a small knot to the size of a small avocado within like a week,” Wade said.
After hearing Wade’s story, Burdick connected Wade with her own surgical oncologist, Dr. Kelly McLean at The Christ Hospital.
The women made it their mission to find out more about what causes the uncommon condition.
“It can be divided into two categories – sterile and non-sterile. But the tough part is to actually identify a causative organism to treat,” McLean said.
Wade says testing helped her discover that her GM came from a bacteria called corynebacterium bovis. McLean explains it may have entered Wade’s body during breastfeeding.
“It makes microtears in the nipple, and then infection gets into the breasts through the ducts and through these microtears,” McLean said.
Wade has since had surgery and is slowly starting to recover. She says it has not been easy, since a nurse visits her to treat her wounds every day, which is a painful process.
Burdick’s situation is different. Someone in the support group suggested trying a specific pathology test to help her get answers. They did the test, and Burdick says it told them her GM was caused by a different bacteria that doctors believe entered her body through a natural opening in her breast.
“Bacteria that’s pathogenic to humans called corynebacterium kroppenstedtii,” Burdick said.
Burdick, like Wade, had surgery and is now on an antibiotic that is designed to battle that specific bacteria. However, since Burdick was not nursing at the time of her diagnosis, she and her medical team initially had no idea how she could have contracted it.
“We can also see mastitis in women who aren’t nursing, and it’s that we all have bacteria under our skin, and I’m not sure why some people become susceptible to it,” McLean said.
For months, Burdick devoted much of her time to finding out more information, and she said what she learned left her stunned. She found that the bacteria that had caused her GM is environmental and is linked to water, sewer and soil.
Burdick then spent hours tracing her steps and reviewing her timeline to try to pinpoint the source. She says she had the water at her own home tested, and it showed no sign of the bacteria.
Eventually, Burdick and her doctors figured out that she most likely got it during the business trip she took to Connecticut in 2017.
“There was another professional on the same business trip that January of 2017 that got an infection through his ankle the same way that I did through my breast. We were on the same trip, at the same time, in the same hotel,” Burdick said. “It’s not my shower. I haven’t been in any other bodies of water. It made the most sense that that’s how it probably happened.”
The conclusion left Burdick worried about what could be in our water, but McLean says thankfully, a shower as a source of that bacteria is unusual.After months of searching, Tami Burdick finally had an answer. It left her more unsettled than before.
“Lake water or someplace that’s had a hurricane where the sewage and stuff may be, is much more common. I don’t see it nearly as much from a shower, but certainly from contaminated water,” McLean said. “I think clean water is a key to many, or the answer to many, diseases and illnesses that we see.”
Burdick is determined to help educate other women about her version of GM and the risks that can come with contaminated water. She also hopes physicians and surgeons will work together to learn more about it and create a more consistent treatment plan and protocol.
“I never realized going through this experience just how much I would learn about the dangers of our own environment – oceans and lakes, and there’s pollution and there’s sewage breaks. It’s out there,” Burdick said. “Hoping that sharing my story is not only gonna raise awareness for the everyday consumer, but also to doctors and specialists out there, that there are tests available to help get answers to why a patient is going through Granulomatous Mastitis.”
Burdick’s main message, after all she has been through, is one Wade echoes - never stop fighting for yourself.
“You have to be an advocate for yourself,” Wade said. “When something is not right, and you know it’s not right, then you have to have a voice.”
Although bacteria is what is said to have caused Burdick’s and Wade’s disease, medical studies have shown that women have gotten GM from a variety of causes, including hormone imbalances, fungal infections and other complications.
There is also idiopathic granulomatous mastitis, where the cause is unknown.
Treatment, McLean says, varies from person to person and on a case-by-case basis.
Although Burdick is now considered to be in remission, according to McLean, in up to 40 percent of patients, GM will come back. That means both Burdick and Wade will have to monitor their condition for years to come.
Despite the pain, the scars and the fear, Burdick said there have been positive aspects of her experience. She remains thankful for the support group and said that going through this has brought her a lifelong friend in McLean.
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