Guest Blog by Mag
Overcoming Inflammatory Breast Cancer: My Journey of Resilience
You often begin by dismissing things, not paying attention, believing that breast cancer is something that only happens to other people, never to you. Well, guess what? It’s my turn now. I join the millions of women who suffer from this indiscriminate disease.
At the age of 40, I wasn’t in the best shape, but I wasn’t unhealthy either, and I hadn’t yet had children. I discovered that breast cancer is not my fault; it simply is.
In late 2021, my world crumbled when I went through a very emotional breakup with my long-time partner, to whom I was engaged. Feeling miserable, lost, and alone, my journey with breast cancer began.
On January 10th, 2022, during my yearly checkup with my gynecologist, a small lump was found in my right breast. I was an emotional mess, so she recommended waiting until February to get this checked since we had been constantly monitoring my breasts over the years with mammograms and ultrasounds due to my dense breasts with calcifications. Just eleven days later, my right breast became red and swollen. My primary care physician calmly urged me to get it checked immediately, not to wait. This was a Friday. I underwent an ultrasound on Monday, and the results were concerning. The technician had a stern expression, and the radiologist, reading the imaging in the back, didn’t even wait for me to leave the room. She came in and delivered the news: “You may have cancer.”
I was in such disbelief that I didn’t even react. I asked, “What are the probabilities that it’s cancer?” but she kept repeating the same phrase, “YOU MAY HAVE CANCER.”
In shock and without family in the US, I didn’t know how or where to start. And just like that, I was on a mission. I needed to figure this out. I needed help. I needed guidance. I asked if there was an oncologist available, and they directed me to the second floor. Nervously, I entered the room and started crying, saying, “I have cancer, I have cancer. I don’t know what to do. Can someone help me.”
That’s when I started to meet wonderful people who helped me through all this. You are never alone. Thankfully, I met Lara Brown, a nurse practioner who guided me through the overwhelming process, evaluated me, and started explaining what needed to be done, what breast cancer involved, and the types. She gave me a crash course on everything, planned all my scans back-to-back that week, putting me in contact with an oncology surgeon. She advised me to see him since everyone in my area of Palm Beach Gardens was very busy at the moment, and I needed to start quickly. I still wasn’t very aware of what it meant to have inflammatory breast cancer. It all became a blur. I believe she did mention it. She told me we were aiming for it not to be triple negative. So as soon as my tests showed I had ER/PR+ results, I already felt like I had won the lottery. I got the genetics done – no genes at all. It was an unfortunate uniqueness, and I found some humor in my “luck”. I underwent numerous scans and tests, including PET scans, MRI, CT scans, bone scans, ultrasounds, mammograms, and biopsies, revealing a concerning spot on my liver.
Everything was moving so fast that I did not have time to think and let it sink in. I had yet to be staged. Then I encountered the first of several disappointing doctors. This oncology surgeon, upon seeing me, cried, and said he felt so sad for me. He said it looked like inflammatory breast cancer. At that moment, I didn’t fully grasp the seriousness of the situation, responding with a lighthearted joke about my sensitive skin and rashes. However, things took a turn when I met the oncologist he referred me to. This young lady was shockingly cold, showing no emotion as she bluntly informed me that if my liver tested positive, there would be no treatment options other than palliative care. It felt as if she was delivering news about a simple illness like the flu.
Feeling overwhelmed and on my own, I began the difficult task of finding a place to undergo a liver biopsy. However, due to the combination of snowbirds in Florida and the challenges posed by COVID, getting an appointment was a real struggle. Despite my pleas for assistance, my team of doctors offered little support. Even the surgeon who had expressed empathy for me earlier never returned my calls, leaving me to communicate with their assistants instead. Determined, I utilized every contact I could think of and eventually secured an appointment for the liver biopsy, which would serve as the final piece of the puzzle in determining my complete diagnosis.
My instinct told me that my current team wasn’t the right fit for me. I yearned for someone who genuinely cared and would fight for me just as passionately. Taking a leap of faith, I decided to part ways with them, sensing that they saw me merely as a number rather than a human being. Thankfully, my navigator came to the rescue and recommended someone else.
That’s when I met Dr. Shaachi Gupta and her team, and everything fell into place. It was an essential lesson for me: if your medical team doesn’t match your level of determination and dedication, they might not be the right fit for you. Time is of the essence, and having the right people by your side can make all the difference.
On February 14, the day I met Shaachi, I had already undergone the liver biopsy, but the results were still pending. It was a bittersweet Valentine’s Day for me, and due to COVID restrictions, I had to go to the appointment alone. Shaachi informed me that I was currently in stage 3, but if the liver results came back positive, I would be classified as stage 4.
Anxiety filled the room as she urgently called for the biopsy results. I could sense the gravity of the situation, and when I heard her pause on the call, my fears were confirmed. Tears welled up, and I found myself crying in a fetal position. The realization of being in stage 4 overwhelmed me, and the thought of death loomed heavy in my mind.
Shaachi showed immense compassion, comforting me with a warm embrace, and together, we began to formulate a plan. Swiftly, she coordinated with specialists in IBC from different states, reaching out to Bora Lim, a member of the MD Anderson team. Their combined expertise helped map out a comprehensive care plan for me.
In anticipation of chemotherapy, I decided to embrace the change and got a pixie cut. I kept a braid of my long hair as a memento of my past identity, symbolizing my evolution into this new phase of life. The day before starting chemo, my stepdad used a hair clipper to shave my head, empowering me to face this challenge on my terms—I owned it.
On March 1st, I embarked on my chemotherapy journey, starting with 4 rounds of Adriamycin and Cytoxan, followed by 12 rounds of Taxol. Throughout the process, I left no stone unturned in my quest for well-being. I made radical lifestyle changes, adopted a healthy diet, and committed to daily exercise. In my pursuit of feeling good, I explored various avenues, from acupuncture, hypnotherapy and reflexology massage at the Sari Center, a specialized integrative cancer treatment center. I also used ice gloves, boots, and cold cap.
Remarkably, I never let cancer interrupt my work in the architecture field. Thanks to the pandemic, remote work became the norm, allowing me to continue without interruption. Staying busy was my lifeline, preventing me from spiraling into self-pity or despair. My parents took turns supporting me through different treatment phases, and I was particularly grateful for my stepdad, who traveled from Spain to be my unwavering rock, keeping me on track throughout the journey.
I met a lot of people during treatment. Even though I went to treatment by myself since, during Covid, no one could go in with you, I never felt alone again. I had the support of my family, friends from all over the world, new friends I met along the way, and the hospital staff. Everyone is amazing. It is incredible how now everyone has someone that has cancer, and they just reach out to help.
I knew I was close to finishing chemo, but I wasn’t waiting for that last day to figure out the next steps. My oncology surgeon would do the mastectomy but not the reconstruction. It was very vague, and no one actually discussed the next steps after chemo. So, I started searching for the team that would do the DIEP flap since I was informed that was the procedure I had to get done because all the skin of my breast was compromised with cancer. It was thickened, and it had to be removed. They needed skin from somewhere else to be able to make a breast. That was as far as I understood.
During this phase, I encountered another round of doctors and surgeons whose behavior left me utterly disappointed and appalled. It seemed like their primary concern was the prestige of their medical center rather than genuinely helping patients. They shied away from complicated cases, fearing it might affect their ratings, and I overheard comments like, “Why are you considering surgery at stage 4?” Such insensitive remarks continued until I received one that shook me to the core – “You are inoperable. You should go to MD Anderson for clinical trials. Come back only if the tumor disappears or significantly reduces in size.”
I received this devastating news alone since my parents, who were non-US citizens, had to leave due to time restrictions. We had hoped to save their limited time for the supposed surgery, which was still uncertain. When I returned home, I immediately researched Dr. Bora Lim and MD Anderson. However, I discovered that Dr. Lim was no longer associated with MD Anderson. Undeterred, I reached out to both her and MD Anderson, making calls and sending emails right away.
To my surprise and relief, MD Anderson promptly responded within two hours, and I also secured an appointment with Dr. Lim at another medical center. Both appointments were scheduled for the day after my final chemo session. Determined to explore all possible options, I sought multiple opinions. Despite the challenging circumstances, I remained optimistic, feeling that there was so much more I could offer and accomplish in life. This setback was not the end for me.
On July 12th, my last day of chemo, I wasted no time and, in the afternoon, traveled with my mother to Houston. My experience at MD Anderson (MDA) left me in awe. Their level of expertise and personalized approach impressed me greatly. Within just two days, they completed all the necessary tests, mirroring what I had done in Florida.
Upon entering the room, I was greeted by the entire team of doctors assigned to my case. They attentively listened to my story and discussed my situation. Remarkably, within hours, they presented a well-crafted treatment plan, collaborated between MDA and Dr. Lim. Despite the repeated questioning of my decision to undergo surgery as a stage 4 patient, they assured me that it was a crucial step. The disinformation about cancer treatment was indeed mind-blowing and disheartening. Fortunately, I learned that only a few hospitals, including MDA, possess the expertise to effectively treat IBC (Inflammatory Breast Cancer).
I was scheduled for my non-skin-sparing mastectomy on August 4th. Straight out of surgery in the recovery area, I had this big smile on my face. Such a relief that the remaining cancer was out of my body. Since ER/PR positive patients normally don’t achieve complete pathological response (that is, the chemotherapy destroys the mass of cancer altogether, and it disappears).
When I was leaving the Rotary House hotel of MD Anderson, I bumped into Rebecca and her mother in the corridor. I had my wedge pillow that the hospital had provided during my stay, and I saw this woman in a wheelchair and assumed she had just got out of surgery. I offered it to her. She politely declined and said she was there actually for a checkup.
My mother and I then finished packing up the room since we were heading to the airport and met with the ladies, yet again, at the elevator. I couldn’t stop looking at her, curious, and asked if she had cancer. She started saying, “I have breast cancer…” and I quickly responded, “Me too.” Then she said, “But I’m stage 4 inflammatory.” “Me too!” It was heartwarming and heartbreaking at the same time. I felt fine! I was just out of surgery, and other than the drains, which are a pain in the behind, I felt great. And I saw this woman in her wheelchair with an appearance that she had gone through hell and back. I felt happy to finally meet someone with my unique combo, but sad that she was going through this as well. The meeting was bittersweet. We exchanged info, and they told me about this group on Facebook of women with our type of cancer (note that men can actually get this as well). It’s called the Inflammatory Breast Cancer Detour. This has been the one and only support group I have been able to identify with, and it has helped immensely since we can share experiences, ask for advice, or find out if anyone has been through something similar. Everyone is just great.
Subsequently, I underwent 22 days of radiation, twice daily, to ensure no trace of cancer remained.
I met Jo Ann through MD Anderson. They have this program to help pair patients with similar conditions so that they can share things about their experience during treatment. She was the one who introduced me to the IBC network. This is an incredible resource for information regarding IBC. It keeps you up to date. Information is key! This group has helped me so much, and they do meetups in different states so you can create a network of friends that have become like family. That’s how I met Terry.
Finally, on October 31st a liver ablation was performed, leaving no doubt that the tiny spot was eradicated. It is with immense joy and disbelief that I can now declare myself NED (No Evidence of Disease), one of the most beautiful phrases I’ve ever encountered. I welcomed 2023 by proudly uttering those words.
Returning to the beginning, my primary care physician Dr. Elina Levkoff had encountered a single case of inflammatory breast cancer during her internship, leaving a lasting impression of the aggressive nature of this disease. With that knowledge in mind, she wasted no time and sent me for further evaluation. Her prompt action, alongside numerous other doctors, played a crucial role in saving my life, and my gratitude knows no bounds. The power of information cannot be underestimated, and it’s vital to raise awareness about this insidious cancer that remains undetected until reaching stage 3 or 4. Unlike other breast cancers, IBC doesn’t present with a visible mass, making diagnosis challenging even for medical professionals. Therefore, it is essential to spread accurate information and debunk misconceptions surrounding IBC.
I am now a stage 4 patient, a reality I accept with strength and resilience. My health is robust, and I feel better than ever. This journey has revealed my true inner strength, proving that I can overcome anything. Refusing to accept defeat, I am determined and empowered to pursue my dreams relentlessly. There’s no “RIP” tattooed on my forehead, and I’m not fragile; instead, I am a resilient individual who has evolved through this experience. I’ve gained a profound understanding of what truly matters in life, and this newfound perspective brings me greater happiness than I’ve ever known.
The final lesson I’d like to impart is that you must be your own best advocate and never give up. I cherish life and have big plans, aiming to be here until at least 90! To my radiation companions, hope to see you all there beside me and celebrate. We are more than just individuals impacted by this disease; we are a formidable force to be reckoned with. Together, we will beat cancer, period.