Guest blog by Paula Carney
April 1, 2013 is the date of my pathology report diagnosing my punch biopsy as Inflammatory Breast Cancer (IBC). My dermatologist didn’t call me until the next morning. But still! April Fools’ Day. My story of breast cancer doesn’t start there. My cancer experience was a complex one and I’m going to tell you about it.
Over 2 years before my IBC diagnosis I found a lump in my breast. I was 39 and had a LOT to do. I was a stay at home mom, my daughters were 7 and 10, I had a winter Girl Scout camp trip coming up and a road trip for a family milestone event. I was not going to get this lump checked out until those two events were over because I didn’t want to mess up the plans. I knew in my gut the lump was cancer and I was right. “Fortunately” it was Mucinous breast cancer, a very slow cancer and would not need chemotherapy. I had time to plan my surgery and research reconstruction options extensively. I found an excellent out of state surgeon in New Orleans that would use my belly fat for reconstruction instead of implants. I did have suspicious pre-cancerous spots biopsied on my opposite breast and we decided on a bilateral mastectomy. Surprise! During my mastectomy, my sentinel node was positive for cancer and they found an Invasive Ductal Carcinoma lump in addition to the Mucinous lump and DCIS. I started aggressive chemo back home in St. Louis as soon as I healed from surgery. After careful analysis of my close but clean margins, it was determined no radiation was needed. Yay! Time for Tamoxifen. More reconstruction revisions. And surprise again. A tiny bit of cancer was found from that pathology. It was 1mm of cancer cells found within a PseudoBursa formed within the reconstructed breast for you geeks out there. Totally baffling scenario for my doctors. I would need radiation after all.
Here’s where my IBC story starts.
Two to three weeks into radiation on my right breast, the one with 3 types of breast cancer, mild redness started to appear on my left reconstructed breast. The redness started creeping along, stopping at the scars and then moving past the scars. My radiation oncologist didn’t know what it was. My medical oncologist didn’t know what it was. My skin is sensitive and they recommended going to my dermatologist. My dermatologist first gave me a steroid cream to tackle the redness. There was no rash and my breast was numb from reconstruction so I felt no itching or any sensation. Six weeks later, at my dermatology follow up appointment, the redness had not abated and in fact spread further. This was also about two months after radiation was completed. My dermatologist decided a punch biopsy was needed.
And here we are with the IBC surprise!
I was emotionally numb for days. Then the anxiety. I thought I was done with breast cancer. I had my bilateral mastectomy, aggressive chemo and now radiation. How could I have cancer on my non-cancer breast that was already reconstructed? Because cancer is sneaky. I dug back into the internet to find more support, as I had been doing for the past 2 years. The prognosis for IBC was horrifying. I found Terry Arnold’s IBC FaceBook support group and she told me about IBC Standard of Care and the IBC Clinic at MD Anderson (MDA) in Houston. Having had the fortitude to travel out of state for the best reconstruction, I knew I’d travel to Houston.
I found solace and comfort with my new found IBC online support group while I got through a challenging time getting my appointment set up at MDA. I started chemo at home and my local medical oncologist encouraged my second opinion at MDA. Once I got to MDA, I met Terry and other IBC patients/survivors in person. It really is a blur what that first visit was like. I do remember getting scans again and meeting an IBC multidisciplinary team. My medical oncologist was initially skeptical that I actually had IBC. Once he reviewed the pathology, he confirmed it indeed was IBC. I presented IBC atypically since I no longer had breast tissue on my reconstructed breast. He and my local medical oncologist had me continue the chemo I started, as I was ineligible for clinical trials since this was my second primary breast cancer.
I stayed in touch with my online IBC group. I connected with certain women more than others but we were all in this together. No one else I knew locally was going through something like this, especially being young at age 41. We talked about how we talk to our children about cancer. I knew community was key for me to get through this all. That and my faith. I had my family and friends in real life, though I started to feel like a burden going through more cancer treatment. I tried not to ask for too much. My girls loved the meal train! I took myself to almost all my chemo infusions, which was only 6 times this go around and a quick drive up the street. I let my parents visit me during chemo for the first time. I wouldn’t allow them to see me in the chair the first time I went through chemo. This time I was more scared and allowed them to sit with me once or twice. It’s what I would have wanted if my child was in the chair.
Next up was surgery in Houston. Time to remove that beautiful reconstructed breast. Scans showed 1 positive node but pathology revealed 10 positive nodes. The chemotherapy didn’t have much effect. My margins were not clean. Radiation would have to be especially aggressive. I returned to Houston for twice daily radiation for a total of 44 treatments at the maximum dosage. I lived in Houston for 6 weeks. During that time I continued to visit with Terry and other women Terry connected me with. I visited and talked with them. We met up for a few local events, like “The Scar Project” exhibit. My parents visited me with my daughters. It was like a vacation for the girls and a balm for my soul. Some of my in-laws visited me, too, as they lived about 4 hours away.
I really tried to embrace the experience of living in Houston for 6 weeks, finding delight amidst the pain. Pain of lymphedema developing immediately after surgery. Pain from radiation recall pleural effusion. The massive fatigue from twice daily radiation. Frustration from what felt like the too long radiation sessions for 20-25 minutes compared to my first radiation treatments of about 10 minutes. The delights were trying out new restaurants to dine in or exploring the aisles of HEB and Whole Foods. I took lovely walks and met a lot of neighborhood cats (I missed my cats napping with me!). Lots of quiet naps, reading and listening to music. Chatting with familiar and unfamiliar faces in waiting rooms, behind desks and in treatment rooms.
I returned home to continue my long recovery ahead. It was brutal for me to endure the trimodal treatment of chemotherapy, surgery and radiation twice within 2 1/2 years. Fatigue was indescribable. Fortunately the pleural effusion disappeared after about 6 months. My scans were clear. I maxed out my physical therapy and lymphedema therapy appointments year after year (and still do). I took it one day at a time. I prioritized activities very carefully. I focused on parenting and physical healing. I tackled the challenges of advocating for my oldest daughter’s autism. I grappled with the ups and downs of my marriage. I pretty much gave up on real cooking but I didn’t miss out on my daughter’s activities. I stayed close to my family of origin, treasuring the family get togethers.
Eventually my visits to Houston became annual checkups. I rapidly developed osteoporosis from the aromatase inhibitor and had to treat it. After a few years my Houston doctors expressed how pleased they were that I was still alive! OK, not in so many words but that was the gist. They truthfully didn’t know if/how long I would survive though they never told me my odds. To me it was 50/50. Really, my hope was to live to see my daughters graduate high school. I surpassed that hope and more. My connection with Terry’s online IBC support group diminished as my life focus shifted away from IBC. To be frank, losing numerous women I connected with to IBC also made me distance myself from the group due continuous loss. However, on most annual visits to Houston I met up with Terry and/or other IBC survivors.
About 6 years ago I started working part time, 10 hours per week. It was truly a series of fortunate events (or rather a particular angel in the flesh) that led me back to my career. Over the past 5 years, both my daughters graduated high school. I was promoted into a leadership role at the nonprofit where I am employed, ramping up to full time status 2 years ago. My deeply rooted anxiety and fear greatly diminished with divorce and intensive psychotherapy. I happily host my family gatherings as, sadly, my mom progresses with Alzheimer’s. My life is more full than I could have hoped or wished. It was on October 31, 2023 that I reached my huge milestone of 10 years without active cancer treatment.
There isn’t anything more special about me than anyone else who had IBC. I didn’t fight harder. I didn’t pray more intently, eat better, exercise more or sin less than anyone who died from IBC. I did, however, seek out my best possible chance to live. I learned from Terry and the IBC Network Foundation all about IBC and the standard of care so I could be my best advocate. I am open about my experiences and share when I have the opportunity. Inflammatory Breast Cancer is a beast. It is also survivable.
I am proof.
At least for today.