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Join us in this episode as we hear the remarkable story of Tami Burdick, a patient advocate and author of the book Diagnosis Detective: Curing Granulomatous Mastitis. Tami takes us on her journey of being diagnosed with a rare and poorly understood chronic inflammatory breast disease. From the initial symptoms and diagnostic process to the challenging treatment and recovery, Tami shares her experiences with courage and resilience. We’ll explore how she became her own advocate, seeking answers and finding the cause of her condition through innovative testing. Tami’s advocacy work, media interviews, and speaking engagements have shed light on granulomatous mastitis and provided support for others affected by the disease. Don’t miss this inspiring conversation as Tami shares her insights, lessons learned, and the importance of being persistent in navigating the medical system. Tune in to discover the power of advocacy and the hope that comes from sharing one’s story.
Tami Burdick is a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis.
She discusses her KevinMD article, “From business trip to battling a rare breast disease: my journey of survival, advocacy, and remission.”
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Transcript
Kevin Pho: Hi and welcome to the show. Subscribe at KevinMD.com/podcast. Get CME for this episode by clicking on the CME link in the show notes. Today we welcome Tami Burdick. She’s a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis. Our KevinMD article is titled “From business trip to battling a rare breast disease: my journey of survival, advocacy, and remission.” Tami, welcome to the show.
Tami Burdick: Thanks for having me. Pleasure to be here.
Kevin Pho: So your story goes right into your KevinMD article, so let’s start there. Tell us your story and journey.
Tami Burdick: Yeah. So I left for a business trip as a freelance business consultant and would come back with an unwanted gift. I ended up contracting an environmentally associated bacteria while I was on that business trip that would then cause a chronic inflammatory breast disease known as granulomatous mastitis. But the journey to getting those answers was how I became known as the Diagnosis Detective. And a lot of people that I’ve interviewed with said, “You remind me a lot of Erin Brockovich.” And it’s kind of an Erin Brockovich-like story, for sure.
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Kevin Pho: So tell me the start of your journey. Tell me how this presented, what you were feeling, and what led you on this path.
Tami Burdick: Yeah. So I started with a variety of symptoms, flu-like symptoms, as well as pain in my right breast. And then that prompted me to do a self-breast exam, and upon that self-breast exam, that’s when I realized there was a hardened area and a lump. And so I wasted no time in contacting my primary care physician, and everything just escalated from there, to a mammogram, to an ultrasound, as well as a core needle biopsy.
At first my medical team thought I had breast cancer, because I was BI-RADS 5, so highly suspicious of breast cancer, in medical terms. While I was relieved, with this feeling of excitement and happiness that it wasn’t breast cancer, I had no idea what journey I was about to embark on. It was a lot of painful, draining abscesses, and it was a very long, exhausting journey for sure.
Kevin Pho: During this time, when the diagnosis was in question, just tell us about the interactions that you had with your medical team.
Tami Burdick: Yeah. So I went to an infectious disease specialist, and honestly, when I look back at everything, I felt that I was probably more well informed about the condition than she was. I had done a lot of independent research prior to that appointment, just so I could feel more empowered and more prepared to be able to ask her the right questions.
And while she was willing to work with me on some of those tests, we did do some urinalysis, we did some blood work and some other things, it was the diphtheroid bacteria that was found in my original culture that she dismissed. And that’s kind of where the negligence part happened, or where I like to say the missed opportunity was, for me to get the proper treatment early on instead of seven long months later. Had the infectious disease specialist not dismissed that finding as just a contaminated sample or part of my natural skin flora, and had she run the right testing, we would have found out that that bacteria was indeed pathogenic to humans. It’s called Corynebacterium kroppenstedtii.
Kevin Pho: For those who aren’t familiar with granulomatous mastitis, what is that?
Tami Burdick: So it’s a chronic inflammatory breast disease that’s affecting roughly around 2.4 women per 100,000 population, I believe. While it’s more prominent in women, men aren’t excluded from the condition. However, it’s more common in women. It’s affecting women from all over the world, in a multitude of different countries, including predominantly here in the United States.
There are a lot of underlying causes, and I think that’s where the medical system kind of fails on its part, in really doing the exhaustive testing to identify all of what those potential underlying causes can be. Because the key to granulomatous mastitis is finding out what could be causing it to begin with, because finding the cause gets the patient proper treatment, and that’s when the patient has an opportunity, like I did.
Kevin Pho: So you mentioned that this was a seven-plus-month diagnostic journey. So tell us, how was this eventually found?
Tami Burdick: So I did more research, and I came across a pathology test known as gene sequencing. Luckily I had an amazing surgical breast oncologist who was willing to partner with me, and she said without any hesitation, “Let’s go ahead and do this test.” And so we did that test, and it was then that we finally got an answer, after all of those months, that it was indeed that bacteria.
My journey kind of didn’t stop there. That’s when we started tracing my steps, and through process of elimination, we were able to trace it back to that business trip. A rare and shocking part of the story is it was actually from a shower at a hotel that I was staying at.
Kevin Pho: Is that a common form of transmission, just from your research?
Tami Burdick: So in an interview that my doctor and I have done together, she said while it’s possible, it’s not as common. She believes that areas with things like flooding and sewage breaks and things of that nature, or even oceans or polluted lakes, that’s probably where you’re going to see more opportunity for certain infections like I had causing granulomatous mastitis.
Kevin Pho: And what’s the treatment course for something like this?
Tami Burdick: So my treatment in particular, because there was a significant delay, I had nine months total of doxycycline. We did do susceptibility on that, so we were told that doxycycline would probably be the best course of treatment. And then at the six-month mark of that antibiotic therapy, that’s when my surgical breast oncologist felt it might be a good opportunity for us to go ahead and proceed with surgery.
That surgery, in layman’s terms, is basically kind of like a cleanup surgery, where she went in and removed any unviable tissue and then flushed my breast with antimicrobial so that I could heal from the inside out. And that’s kind of like the last part of my journey to help me reach remission. But I did have a wound vac for about six weeks. Honestly, that was probably the worst part of it.
Kevin Pho: And during this journey, talk to us about some of the emotions that you were feeling, some of that frustration and disappointment with the health care system. Talk about what you were going through emotionally as the diagnosis was in question.
Tami Burdick: Yes. So there is definitely an array of emotions that women feel with this disease. Obviously, with the health care system, there’s a lot of feelings that we’re experiencing medical gaslighting or being dismissed. And maybe it’s more so under practice, but there’s so much more information out there, obviously including my book, that’s a valuable resource that can really help doctors get a better grasp on this condition.
But you’re feeling sad, you’re feeling depressed, you’re feeling “why me,” you’re feeling angry. It is very exhausting. It’s wound care 24/7, almost. You get up and you do wound care, you do wound care after you take a shower, you do wound care before you go to bed. It’s very unpredictable, and that causes a lot of frustration. So there’s kind of that up and down, or teeter-totter, of emotions for sure for anyone going through this condition.
Kevin Pho: So I do internal medicine, primary care, and I don’t think I’ve come across this before. What are some tip-offs? What are some things that I should look out for to have this in the forefront of my mind? What part of this story should I be looking for?
Tami Burdick: Yeah. So in terms of primary care, obviously any breast abnormality, whether it’s a small lump or the hardened area like me, don’t hesitate in making sure that the patient gets the proper testing, because, for one, you don’t know if you’re going to be missing a breast cancer, and that’s important. I think we’re starting to see a lot more younger women even getting breast cancer.
And even with GM being a benign chronic inflammatory breast disease, the longer the chronic inflammatory process continues, the higher the risk of potentially developing breast cancer from this disease, and unfortunately that’s been proven for several women in my support group for the condition. So from a primary care perspective, don’t hesitate in getting a patient a mammogram or an ultrasound or an MRI, something to make sure that they’re not missing some sort of abnormality. Lucky for me, I had a great primary care physician as well. She ordered both the mammogram and an ultrasound after that initial clinical appointment with her.
Kevin Pho: So we talked about your interactions with the health care team. So I just want to share, what kind of messages do you have for us in terms of what we could do better? But also, on the flip side, you’ve had some positive experiences too. So what are some things that we did well during your journey?
Tami Burdick: Yeah, and I don’t want to necessarily come across like I’m trying to blame doctors. I think a lot of times it can be these medical networks. They put a lot of pressure on our health care professionals to get as many patients in as possible in a short amount of time. At the end of the day, it’s a business too, just like anybody else, right? But I think when it comes to health care, if you just really truly listen to and believe your patient and have a partnership-approach relationship, I think that’s going to give you a lot better results.
And just like any review on a product on Amazon, or any other review on any other website, any doctor, you can leave a review with them on the internet. And I think if more doctors actually took the time to see what their reviews were on the internet, they might themselves become better doctors.
But the positive experience that I had: I had an amazing surgical breast oncologist, because we had that partnership-like approach, and she was willing to listen, willing to review my research, and that really kind of produced the positive end result for me. And we also incorporated a functional medicine practitioner in on my case. So the three of us, we kind of call each other the A-Team, and it was the three of us that really got me to where I am today.
Kevin Pho: Now, as you reflect on your experience, is there anything that you wish you would have done differently?
Tami Burdick: Well, I wish the infectious disease specialist would have done more due diligence on her end to really rule things out, instead of guessing, and confirm that the diphtheroid bacteria finding was what it turned out to be. I look back thinking, had I gotten proper treatment in April instead of starting proper treatment in October, things could have been very different for me.
Kevin Pho: Now, you share your story, of course, in your book, Diagnosis Detective. Tell us some of the main points that you want readers to come away with after reading your book.
Tami Burdick: I want readers to know that they have to be their best advocate, always. And I also want them to know that they’re not alone. And while the book is obviously a great tool and resource for patients, it’s also written in a way to be invaluable for our health care system. So I look at my target audience, and it’s not just patients, not limited to patients, but also medical professionals. And I’ve had a lot of medical professionals, including surgical breast oncologists, purchase my books.
Kevin Pho: Now, when you say that patients need to be their best advocates, what are some specific ways they can do that?
Tami Burdick: So I came up with my A-list for advocacy, but it’s definitely making sure that you form the best health care team to work with. If you have a premonition or a feeling about a doctor that you’re just not comfortable with, get a second opinion, get a third opinion, get I don’t know how many opinions you need until you feel comfortable that you’ve partnered with the right medical team.
Really do your own research. It’s just as important for you to become familiar with the disease as it is for the doctor, because doctors have a lot of patients, right? They’re not going to be the experts in everything. Like you said yourself, you’ve never even really seen or heard much about GM. So it’s really just being prepared.
Kevin Pho: We’re talking to Tami Burdick. She’s a patient advocate and she’s the author of Diagnosis Detective: Curing Granulomatous Mastitis. Our KevinMD article is titled “From business trip to battling a rare breast disease: my journey of survival, advocacy, and remission.” Tami, tell us some of your take-home messages that you want to leave with the KevinMD audience.
Tami Burdick: Take-away messages: Obviously, if you’re a female and you’re just wanting to learn more about breast health, or this breast disease in particular, feel free to get a copy of my book and share it. But my best advice to anybody is just always be your best advocate. No one knows your body better than you do.
Kevin Pho: Tami, thank you so much for sharing your time, story, and insight. Thanks again for being on the show.
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