Triple-negative inflammatory breast cancer survivor: Why I joined a clinical trial

I was 14 weeks pregnant with my first child last fall when my right breast suddenly became very inflamed. At first, it was only the change in size that I noticed. But within a short time — maybe five days, max — it went from just being larger to hurting and turning very red.

I went to my regular OB/GYN, who thought it was mastitis — a milk duct infection. That would’ve been pretty unusual in someone who wasn’t actively breastfeeding, but I took the antibiotic she prescribed anyway. When that didn’t work, a family friend and physician suggested I go to a breast center for additional testing. The specialist there prescribed another antibiotic. When nothing changed after three days, she ordered an ultrasound and a biopsy.

About a week later, I got the results. I had inflammatory breast cancer (IBC). And, it was triple-negative. That meant it would be harder to treat, because it lacks the three receptors most commonly used in targeted therapy.

Why I chose MD Anderson for my breast cancer treatment

I was diagnosed during an annual visit with my parents in Vermont, so I’d gone to a local hospital there for help. But since I grew up in Houston, I called MD Anderson the minute I found out I had cancer. As far as I was concerned, there was never any question as to where I’d go for my treatment.

My husband and I drove straight down as soon as I got an appointment. We met with medical oncologist Dr. Naoto Ueno, surgical oncologist Dr. Anthony Lucci and radiation oncologist Dr. Wendy Woodward in October 2020.

Together, they recommended chemotherapy — with a two-week break to have my baby — followed by a radical mastectomy without reconstruction, and finally, radiation therapy.

Educating myself about inflammatory breast cancer

I didn’t know much about inflammatory breast cancer before my diagnosis. But I refrained from Googling it because I didn’t want to be frightened by misinformation and I had confidence that MD Anderson would provide all the answers I needed. I felt like whatever my doctors said, that’s what I was going to do. I still feel that way today.

One thing I’ve discovered since then is how little most people actually know about inflammatory breast cancer — and how often it gets lumped together with more common types of breast cancer.

But inflammatory breast cancer is different. It rarely shows up on mammograms. It can flare up suddenly, sometimes even just on the skin of the breast. And it tends to be so much more aggressive that it’s rare for someone to be diagnosed with it at less than stage III or IV.

I also didn’t know that MD Anderson is one of only a few cancer centers in the entire nation that has specialists who focus exclusively on inflammatory breast cancer. Some hospitals don’t even know what inflammatory breast cancer is, much less how to treat it. And the patients who go there end up having to fight for everything they need.

How inflammatory breast cancer is different

That’s why I am so grateful to be at MD Anderson. After meeting fellow survivor Terry Arnold and becoming active in her IBC network, I’ve learned that sometimes doctors just blow off people with this disease, saying, “It’s inflammatory. There’s nothing we can do.” But at MD Anderson, they say, “We have a plan. We’re going to throw everything we can at it. We will not give up.”

That’s pretty important. Because inflammatory breast cancer is different from “regular” breast cancer in another crucial way. Its standard course of treatment is pretty rigid, so it doesn’t really vary. People diagnosed with it usually have chemotherapy, followed by surgery and finally, radiation therapy. But getting each step in the right order is crucial, because inflammatory breast cancer is also considered one of the most deadly.

The source of my positive attitude

One reason I’ve been able to maintain such a positive attitude despite my diagnosis is knowing that I have the best care team possible for inflammatory breast cancer. Another thing that gives me a lot of hope is MD Anderson’s clinical trials program.

I don’t qualify to join a clinical trial for treatment just yet, because most of the inflammatory breast cancer trials require that you’ve already completed the standard of care. I still have radiation therapy ahead of me.

But I’ve known several people who saw success with their clinical trials at MD Anderson, and Dr. Ueno has had some really good results with several clinical trials for people with triple-negative breast cancer.

In the meantime, I was more than happy to participate in a study to further IBC research by agreeing to additional biopsies. There’s no history of cancer in my family, and genetic testing shows I have no inheritable mutations that might have caused my disease. Yet I do have breast cancer, so maybe something good can come out of it. And if by doing so little, I could contribute so much, I wanted to be a part of that.

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