My journey to Cancerland: Diagnosis
Not long ago I thought myself quite healthy and rarely spent time in any medical setting (beyond regular visits with my midwife). But in the beginning of my second pregnancy, in May of 2015, I began experiencing problems with my left breast. Initially I assumed my discomfort was associated with pregnancy and/or nursing, as I was also in the process of weaning my 18 month old daughter. It started with my breast increasing in size, followed soon after by a palpable mass, and over a few months developed into inflammation, tenderness, redness, itchiness and pain. I visited my primary care doctor several times as the symptoms evolved. First I had an ultrasound of my breast (which showed nothing troubling), then I took a round of antibiotics to rule out a cellulitis infection. There was no improvement, so I went in for a biopsy in late August. I truly didn’t allow myself to even consider the possibility of cancer and soon after, I took a cross-country trip to visit family and friends. I was wearing ice packs in my bra on and off at this point, but hey, I’m pregnant, my body is doing all kinds of crazy things right now. I got the call while I was away that the results were inconclusive and took this as a good sign. I casually scheduled a follow-up biopsy for when I returned to home a couple weeks later.
In late September, after my second biopsy, my breast turned purple. This is apparently a normal side-effect from the procedure (which is very uncomfortable), but that was when some real worry finally set in. There was a week of waiting and phone tag. On October 2, the receptionist was the one to give me the shocking news that my tumor was malignant. It was the day my 4 year old niece was the first to say “I’m sorry you have cancer.” Within hours of this call, she and the rest of my family visiting left town. I couldn’t say anything, just cry. I called my husband and just started crying into the phone. I called my mom and did the same. But what else do you do after you receive this kind of news? You find an oncologist. You undergo a bunch of tests. You make a treatment/life plan.
One week later, after consulting with a local oncologist and some limited diagnostics (mammogram and ultrasound), I was diagnosed with Invasive Ductal Carcinoma (ER/PR +, Her2-), at 32 weeks pregnant. The tumor was estimated at 4 cm and I was given a Stage 2 treatment plan of lumpectomy/mastectomy, as soon as possible (while pregnant). I did not feel satisfied or comfortable with this doctor, especially as my symptoms were still evolving and I sought out a second opinion at a larger/specialty cancer center. My situation was obviously more complicated because of my pregnancy and because we live in such a small and isolated place. Between meeting the first and second oncologist, my breast became heavy/denser and the skin became dimpled. On the recommendation of my midwife, I contacted the Seattle Cancer Care Alliance and pushed for an appointment a week later. Most doctors I called were giving me a 6 week delay to be seen. I had to push to get in earlier and I am so glad I did.
Dr. S at SCCA gave me the clinical diagnosis of Inflammatory Breast Cancer, a rare and aggressive type that is Stage 3 at best. My first doc never even mentioned this as a possibility. Turns out lots of oncologists don’t know about it, or treating pregnant women. I certainly hadn’t heard of it, and didn’t know anyone who had cancer while pregnant. I was doubly rare. I had additional screening done and the cancer was discovered in my lymph nodes as well, which is the first place it usually spreads beyond the breast. The treatment plan was intense and drawn-out; four months of 2 types of chemotherapy including inducing labor and having a baby between infusion 1 and 2, one month off, modified radical mastectomy, one month off, 30 radiation treatments, one month off, hormone suppression therapy for 6 months and aromatase inhibitor therapy for 5 years. I had never even heard of IBC and now it had taken over my life in a moment. It was surreal; I was arranging cancer treatment AND a revising my birth plan at the same time.
So, 4 months from onset of symptoms to my diagnosis. Then another month before I began treatment. It could’ve been worse, as I now know women who were brushed off and misdiagnosed for much longer, but I wish I hadn’t been so quick and naive to dismiss my issues as pregnancy related. Pay attention to your bodies, ladies and gentlemen, and document unusual changes. Listen to that voice that says something could be wrong and even though you don’t want it to be true, ask your doctor straight up what the worse case scenario is. It is always better to know. I still wouldn’t google any medical condition until I talked with a doctor, but I regret not considering the possibility sooner. I also wish I had taken pictures. I had 4 of the 5 symptoms shown below, in addition to a lump.