Katrina’s Journey with Stage 3 Inflammatory Breast Cancer

The Unexpected Discovery

In October of 2020, I was diagnosed with inflammatory breast cancer (IBC). Most people have never heard of that. There are 15 types of breast cancer. IBC is the rarest and it has the poorest outcomes. Only 1-5% of all those diagnosed with breast cancer will have IBC. It doesn’t normally present with a lump so it is not detected on a mammogram. When I tell people that, they always ask, “So, how did you find it?” Here is my story.

The Initial Symptoms and Diagnosis

I was taking a shower on a late, mid-September evening. As I ran the soap across my left pectoral muscle toward my underarm, I hit a very hard area near the tail of my breast tissue. The area was so hardened that I dropped the soap when it went over it. It was slightly sore, and very stiff feeling. I gave myself a quick self-breast exam and felt nothing so I thought I must have pulled muscle. I knew I had a doctor’s appointment with a mammogram scheduled two weeks later so I figured I would just ask the mammography technician about it. In the mean time I massaged the area and kept an eye on it. In those two weeks, the area got more and more firm. I began to see some redness coming and going in that area and my left breast felt slightly heavier.

The Confirmation and the Journey Begins

I showed up for the mammogram and I shared my concerns with the tech. She took one look at me and said, “I don’t think I can do this today. You need to speak with the doctor first.” I remember my thoughts exactly as I was putting my clothes back on. “Oh my word. I have cancer! They’re going to tell me it’s that terrible inflammatory kind I had seen a show on tv about.” Yes, I had seen a show talking about IBC and I remember thinking to myself that if I ever had breast cancer, I didn’t want that kind! Anyway, I tried to stop my brain from jumping to the worst conclusions. I went to another room and put on a another gown and waited for the doctor. She came in the room and just said, “Ok, let’s take a look.” She examined my left breast. She examined my right breast. She examined my left breast again and said, “Well, I don’t see anything you need to worry about, but I would like you to go to radiology and have a 3D mammogram…as soon as possible.” I went home and called my sister. I told her what was going on and I mentioned IBC. My family knows I’m a bit of a worrier so she wasn’t worried, but I sure was.

The Battle Against IBC

The next day I was at radiology getting the 3D mammogram. Because my breast tissue was so hard the machine kept shutting down because it couldn’t squeeze me enough! Finally, the tech was able to manually make it work. We got the images that we needed. I waited, and waited, and waited for the radiologist to interpret the images. He didn’t see anything but he was concerned so I immediately had an ultrasound. After the ultrasound the radiologist came into the room. Once again, he saw nothing in the images and so he asked if he could physically examine me. As soon as he saw my breast he said, “I think you may have inflammatory breast cancer.” My breast was as red as a tomato. I had assumed it was from all the manipulation from testing but no, it is a sign of IBC. He immediately had me scheduled for more testing which included an MRI and a biopsy.

The Diagnosis and the Fight

I met the surgical oncologist who would be doing my biopsy. As soon as she saw my breast, I could see it in her face; this was bad. She said it could be an infection and she would put me on antibiotics just in case, but, and that was a very big BUT, I would need the biopsy as soon as possible. She said that she was concerned that I had IBC. I began to cry and asked her if that was what I had. She looked at me and said, “Without a biopsy, I don’t know for sure. I don’t know.” (She knew. I asked her about that conversation later on in my treatment. She knew, she just couldn’t tell me without proof.) Later that week I found myself at day surgery. The antibiotic hadn’t done a thing and so they wheeled me back for the biopsy. As I was waking up in recovery the surgeon came to see me. “Well, it is cancer.” Those were her words. So straightforward, to the point, and my life immediately changed. My MRI was cancelled since we now knew that cancer was coursing through my veins.

The Journey Continues

We were back and forth a bit on whether or not this was actually IBC. I think everyone was trying to spare me from the worst even though that’s all I had heard for the past two weeks. Knowing what I know now, the MRI would have showed us right away as typical IBC ‘webbing’ shows up on the images. I didn’t have some of the more obvious clinical signs of IBC. I had skin reddening, heaviness and swelling/hardness but no peau d’orange, nipple inversion or dark discoloration. After meeting my oncologist and his team, they would decide for sure if it was IBC once we did a PET Scan. He reviewed my initial ultrasound performed at radiology and saw that my lymph nodes looked normal at that time. They assumed that the cancer was only in my breast tissue. Four weeks had passed from the time all of this started to the time of my PET Scan. The scan showed that there was no solid tumor and approximately 8 lymph nodes had active cancer, but no distant spreading was detected. With the pathology reports back it was official; I had Stage 3, HER-2 positive, ER/PR negative, inflammatory breast cancer.

The Treatment and the Aftermath

At this time, I’ll spare you the details of my treatments. I had chemo, immunotherapy, multiple surgeries and radiation. My side effects were pretty terrible and rare, but I made it through. I’m a little over two years cancer free and I’m trying my best to navigate through this new, post cancer life. Cancer, whether alive or dead in me will always play a part in my daily life. I see the scars it has left on my body. I feel the aches and pains the treatments to kill it have left behind. The hardest part for me, though, is what cancer has done to my mental health. Of course, I am so happy to be alive and I thank God every day for my second chance at life. But living each day struggling with the fear of recurrence, questioning why this happened, and the frustration of the physical ailments takes it toll mentally. As cancer patients, survivors and thrivers we are told to be glad to be alive. But when treatment ends, we face a new life. It’s almost like we’re dropped into an open ocean, always struggling to arrive safely on shore. Because of social media, I’ve seen cancer’s effect on many survivors. Thankfully, within the cancer community we are always there to help each other and encourage one another as we sail along. We are part of a club that we never wanted to be in, but what a club it is. I’ve made it my mission to raise awareness not only about IBC, but about the mental health of cancer patients. We all deal with this disease differently and my desire is to reach outside of the cancer community to let the everyone know how this disease truly affects us. It’s more than just gray skin, nausea and baldness. I’m currently writing a book about my experience with cancer and how I was able to deal with everything it threw me. I’ve been interviewing people involved in all areas of cancer treatment, from providers to patients, beauticians and tattoo artists. What they have to say can shed light on what we deal with in our cancer lives. We all have a story to tell and my hope is to share those stories outside of the cancer community. My goal is to use my experience to help others survive and truly live beyond the walls this disease can build. I hope my story has encouraged you today and I hope you’ll follow along with me as I try to shine a bright light on living life after cancer.

You can find me on Instagram @‌inflamed_cancer_ibc

Learn Look Locate: Empowering Your Journey

Here at Learn Look Locate, we are deeply inspired by the strength and resilience of survivors like Katrina. Her journey with Stage 3 Inflammatory Breast Cancer underscores the importance of early detection, informed decision-making, and the power of community support. Our mission is to provide essential information on early detection, diagnosis, and the latest treatments, along with personal accounts from formidable breast cancer survivors. We strive to empower individuals with knowledge and support throughout their journey. We welcome you to join our community and explore our survivor stories, and medical advisors pages. We’re here to guide you along your recovery journey and beyond. Together, we can shine a bright light on living life after cancer.