September 20th, 2022 was a day I will never forget. It all started earlier in the month when, what seemed to be overnight, I started to develop a lump in my right breast. Knowing that I have fibrocystic breasts, I initially wasn’t overly alarmed. However, I decided I should see my Ob/Gyn doctor. I scheduled a screening mammogram less than a week before the appointment which came back “normal.” The only comment was on the dense breast tissue which is typical on my mammograms.
During the week leading up to my initial doctor’s appointment, the lump started to increase in size rapidly. My entire right breast was significantly larger and started to turn pink and warm. At my initial appointment, my doctor agreed it did not look normal and that I should have a closer look with a diagnostic mammogram and ultrasound. I was now a little concerned but not completely panicked as she had mentioned she thought it could be “a cyst behind all the fibrocystic breast tissue just “pushing out.”
Within 48 hours I was trying to get my imaging scheduled. My symptoms were worsening. When I informed the imaging center of my symptoms, they refused to schedule me. The radiologist said I could have mastitis (which I knew it wasn’t) and I needed to be evaluated clinically. I explained to them that I had already been seen and that it looked nothing like mastitis. They still refused. I was again seen by my doctor who agreed it was not mastitis (she did, however, start me on antibiotics “just in case”) and sent my imaging order to another imaging center.
Unfortunately, I had to wait about a week to get in. By that day, I wasn’t sure how they would even get the mammogram done given the size of my breast. Fortunately, we were able to get it done and subsequently my ultrasound.
And this is when everything changed….
Immediately after my ultrasound, the radiologist came back in with the technician. He looked at me with a disturbing look on his face and asked how long I had had my symptoms. When I told him that I had had them for less than a month he replied “well, it looks like you have what appears to be inflammatory carcinoma and you need a biopsy immediately.” Honestly, I was scared however I wasn’t nearly as scared as I would be later when I discovered the difference between breast cancer and inflammatory breast cancer.
My biopsy was completed two days later, September 22nd, 2022. I waited six days for my results which were the longest six days of my life. The sense of complete loss of control was excruciating. All I could do was wait and accept whatever results came my way. Having a medical background, I am always inclined to research and be fully informed. However, everything I started to read was so upsetting I decided I did not need to know any more until I had results and a plan. I had daily meltdowns, usually in the evening. They say it’s times like these when you realize what’s important in your life. I agree, and you’ll never understand how true that is until you are in a situation like this. On a dime everything else felt so insignificant.
The six days I spent waiting for results, my symptoms continued to progress more and more. I now had what looked like maroon, orange peel skin, and a lymph node popped out of my right arm pit the size of a pea. The worst part was, my symptoms were progressing so fast, and without results I felt like no one was doing anything.
Fortunately, with the help of a friend, I was able to get an oncology appointment quickly, within a few days of my diagnosis. I saw oncology on a Monday. I was told that my biopsy showed that it was very aggressive, essentially my cancer was “doubling.” By Friday I had had an echocardiogram, PETT scan, my port placed, and started treatment. Now I was feeling a little better because someone was doing something!
Some unfortunate facts:
- Initially it was thought it could be mastitis. It didn’t even look close! I learned that inflammatory breast cancer (IBC) is very often misdiagnosed and commonly for mastitis.
- My doctor didn’t recognize it either, even with her extensive women’s health background. I have learned this is quite common too because of its rarity.
- Inflammatory breast cancer does not show up on rou?ne screening mammograms.
Treatment seemed to be going well. I was responding very well to treatment and overall, I was feeling pretty good. I was more optimistic at this point. However, I still had an odd sense of isolation. Even though I had good family and friend support, really nobody knew exactly what I was going through. I had only had symptoms for less than a month and was diagnosed with stage 4 IBC with metastasis to both liver and bone. How could this be happening to me? My genetic testing was negative. My oncologist said I “had bad luck.” Additionally, there were no support groups in my area for inflammatory breast cancer. I knew nobody else with inflammatory breast cancer. And I really felt like you couldn’t just simply group inflammatory breast cancer with other types of breast cancer.
Sometime between April and July 2023 my targeted treatments had stopped working. I now had recurrence in my liver. My treatment was changed to a new medication. I was still doing quite well however this is when I was hit with the reality that a treatment could stop working. I started to wonder what would happen if I “fail” all the treatments? It just never really occurred to me before. My optimism was blunted.
I started doing more research online for support and education. I came across the IBC Network Foundation and saw that they were having a meet up in Houston in October 2023. I had briefly looked at it before but when I seemed to be doing so well I just kind of passed by it. At this point, I was really looking for additional support and information. I decided to go and bring my husband with me. I wanted to meet people “like me.”
Attending the IBC Ultimate Meet up was one of the best decisions I have made. Surrounded by people who are going through the same thing and as well as survivors was incredibly encouraging. Also, the opportunity to tour the research center and meet the amazing physicians and researchers was incredible. It was great to learn about all the current research and treatment possibilities. And the support network I am now a part of is something I will have forever and is invaluable.
Shortly after the meet up I was invited by Terry Arnold with the IBC Network Foundation to the 2023 San Antonio Breast Cancer Symposium. What an amazing opportunity to attend the symposium but also to volunteer with the IBC Network Foundation booth. The symposium was incredible, so much bigger than I had ever expected. Not only was able to participate with the IBC Network Foundation, but I was able to learn so much about all the current research and treatments from the IBC specialty clinics. I was listening to and learning from the best of the best!
So where am I now?
Both the IBC Network’s Ultimate Meetup and The San Antonio Breast Cancer Symposium offered invaluable insights and connections, empowering me to seek second opinions and advocate for myself at MD Anderson’s dedicated IBC clinic. I wasn’t even aware there were IBC specialty clinics prior to this! Between the education and support I have received; it has been incredibly empowering and encouraging. It was an interesting chain of events that led me down the path to the IBC Network and subsequently the San Antonio Breast Cancer Symposium, a chain of events I am now so grateful for.