Second Diagnosis
There is a shadow:
A second diagnosis of Inflammatory Breast Cancer on Groundhog Day
This could not be happening. No one, and I mean no one, gets Inflammatory Breast Cancer twice. There is always a risk of a different cancer in the remaining breast but Inflammatory? Not possible, said the experts.
A few days after I received the first COVID vaccine, my lymph nodes blew up, more painfully than I cared to admit. Assured by doctors that lymph node swelling was common with the vaccine – so common that mammograms were being delayed until weeks after the injection – I wasn’t worried. One Friday evening, in a harrowing repeat of a similar scene more than three years prior, I stood in front of the mirror and lifted my shirt to see my remaining breast swelling, looking like a thing possessed. A day or two earlier, while sitting at my desk, I had felt it hardening under the surface, crusty like the caramelized top of a crème brulee. That evening, I called a trusted friend who is an RN and sent her a few photos. She confirmed what I was thinking; it was time to call the oncologist. In similar fashion to the first cancer experience, I decamped to the couch, unable to sleep in my bed, my thoughts a jumble captured in a tight net of anxiety. I woke up thinking about how quickly I could get a chemo port implanted.
The oncologist got me in right away but remained nonchalant. The symptoms were likely caused by the vaccine, she concluded. The vaccine could not cause cancer but, by virtue of proximity of the injection site in the shoulder to the lymph nodes near and under the arm, it sometimes resulted in inflammation that mimicked symptoms of cancer. I was offered a choice of how to proceed and insisted upon an ultrasound-guided core biopsy, knowing that the simpler punch biopsy often missed IBC, even though it could be done at that very office visit.
Having gone through this once before, I knew the pitfalls. IBC diagnosis is tricky and short-cuts may be costly. Sure, a punch biopsy could be done quickly but chances were high that it would miss the web-like malignancy so common with IBC. Plus, it had failed to detect malignancy at my first diagnosis. The orders went in and, about a week later, I presented for a mammogram and ultrasound. The front desk nearly turned me away after confirming I had received the vaccine less than a month prior. They wanted women to wait at least eight weeks between the vaccine and mammogram. I refused to leave.
In the aftermath of my second diagnosis, many have wondered why I hadn’t had both breasts removed when I had cancer the first time. I would have happily undergone a double mastectomy but that isn’t the standard of care for IBC. As a relentlessly aggressive disease, there is an ideal window of opportunity between the time that surgery is completed until radiation begins. Wait too long and errant cancer cells left behind after surgery can start up a rebellion. Radiation is an insurance policy, our personal Terminator, taking aim at cancer cells as they seek to multiply. The IBC experts choose not to amputate an otherwise healthy body part to avoid the risk of a surgical complication that would delay the onset of radiation.
While a radical mastectomy is the standard of care for IBC, prophylactic (i.e. preventative) mastectomies are not radicals. Only a radical removes all breast tissue which means that, even if I had undergone a prophylactic mastectomy on the healthy side, it would have left behind tissue that cancer cells could exploit. Even more, it was suggested that removing the breast, but not all breast tissue, could hurt the chances of early identification of a future cancer. Without a breast to monitor for changes, it could take awhile to discover a new cancer in the adjoining lymph nodes. As a prophylactic could offer no guarantees of remaining cancer-free, and may even complicate future diagnosis, I put my faith in the medications that I took daily, whose job it was to block the production of estrogen that had provided fuel for cancer. Therefore, I still had one breast left to squeeze between mammogram plates and beneath an ultrasound wand.
When a mammogram tech avoids eye contact and requests additional scans, something is up. After I was ensconced on the ultrasound table, the radiologist entered the room and I smelled trouble. In the years before I had cancer, I’d undergone many breast ultrasounds and never saw the radiologist, who typically reviews the images while out of sight in an office, dispatching communication via the techs. Now here he was, fresh from Christmas vacation and opening with, “You’ve been through the ringer, haven’t you.” I felt the vise tighten. He, too, had believed the lymph node swelling was caused by the vaccine but he saw skin thickening. My heart dropped like a stone rushing toward a lake bottom. IBC’s calling card is the thickening of the skin of the breast; something no vaccine would cause. Turning to face me, he uttered the words that became etched into my memory forever. “Your results are absolutely abnormal.” For the briefest moment after I heard the word “absolutely,” I felt as though I were aloft in a swing, expecting the word “normal” to follow. This couldn’t possibly happen twice. The swing crashed to earth. He would biopsy me today if he could but there was no time. “Get her back here as soon as possible,” he said to the tech on the way out.
In a case of déjà vu, much like the movie “Groundhog Day” where life whirls repetitively, and occurring on the actual Groundhog Day, the call came as I was sitting in the same chair, at the same desk and in the same office where I’d picked up the phone to receive the same news three-and-a-half years earlier. My oncologist thought I might know already because the biopsy results were available in the patient portal. I hadn’t looked, mostly because I suspected bad news and didn’t want to find out from an app on my phone. The first time was a shock but by the second diagnosis, I had wised up. I knew that there could be virtually no other explanation for symptoms such as skin-thickening.
“It’s the same as last time,” she said, “invasive lobular. I expect the biology to come back the same, too.” The first words out of my mouth were surprisingly defiant. “This ain’t gonna take me down, Dr. Mina.”
The staging for the second diagnosis was more routine and less dramatic than the first time. A top priority was scheduling a port surgery, which was complicated by COVID. I flew to Houston for a consultation and scans with the IBC team. There, I was met with shock because very few women have ever experienced two cases of IBC and I was told my diagnosis was the equivalent of being hit by lightning twice. With the highest volume of IBC patients in the world, the lead oncologist could recall only one or two other women receiving two separate diagnoses of IBC. The MD Anderson Tumor Board reviewed my case with detailed medical information projected onto the big screen. Briefly an oncology celebrity, I was an otherwise healthy 55-year-old Caucasian woman presenting with a highly unusual second diagnosis of Inflammatory Breast Cancer. I was later told that an intense discussion ensued about whether this represented a recurrence or second primary cancer, with the latter eventually winning out. Debate followed about the best course of treatment, including the options for chemo drugs because the oncologist couldn’t prescribe those to which I had been previously exposed. As cancer patients, we represent puzzles to be solved, data points in need of salvation.
I wasn’t particularly upset that I would soon be bald again, although I didn’t look forward to it, or overly concerned about how well I would tolerate chemo and radiation. I knew I could handle it. What was most troubling was a gut-level intuition that life as I knew it was over. Cancer refused to fade into the background and, in some form or fashion, would likely be a part of my life for the remainder of my days.
On the day I started chemo, the PA did a quick exam. One month had passed since our debate about how to proceed with a biopsy. “The breast has doubled in size in the past two weeks,” she observed.
A cancer that is visible to the naked eye carries its own sort of terror. Every day, I watched it enlarge and distend, diabolical cells spinning like carnival rides, the breast becoming grotesque in size, drooping heavily, and becoming rock-like under the surface. Flint-like in presentation, cancer acts as both the hammer and nail threatening to pound the life out of us. A ticking time bomb lived on my chest, and I couldn’t get it off.
As much as I wished to remove the breast immediately, doing so had the potential to scatter cancer cells that could end my life within months. The only way out was through chemo, and it would require six months of treatment to get to the other side. I had to dig deep to cope with anxiety and practice a type of patience that was mostly stubborn endurance mixed with a bit of acceptance. Two weeks after diagnosis, I was once again hooked to a chemo pole, beginning the first of 20 rounds of treatment that was both toxic and lifesaving. I began the countdown to surgery, certain that the upcoming mastectomy would be one of the best days of my life.
I eagerly anticipated the day when the time-bomb would finally, blissfully, be removed from my chest. But before I could get there, I would encounter a series of grueling events, including delays in chemo due to low white blood cell and neutrophil counts and a devastating appointment with an oncologist who made the shocking announcement that I may not be a candidate for surgery.
Even knowing what happened, I read this with bated breath. You captured the horro and shovk and determination and abomination so vividly.
Hope always ❤️
This means so much to me. Thanks for taking the time to read and comment. You know only too well. Hope always!
I can totally relate to sleeping on the couch! When I was initially told I had cancer, I spent many nights staring at the ceiling from the comfort of the couch. The diagnosis phase felt like sitting at the bottom of a cliff waiting endlessly for someone to throw a rope to me so I could climb up the side of that cliff with attached instructions of how to climb out. THANK YOU for sharing your story of the mountain you are climbing.
Thank you so much for your comments. The diagnosis period is so challenging. We are climbing mountains together!
Hi Clare, thank you for sharing your story. You words and your candor really resonate with me and I’m sure with many other survivors. I still relive the day I was diagnosed and even though it was 14 years ago I still lay away at night with the fear it may come back. You are a beautiful, graceful, inspirational survivor. Stay hopeful and please keep sharing my friend.
Thank you so much for your kind words and support. Having both traveled through cancer and lymphedema, we both understand life is never the same. Shine on, Lori!
Clare, you are able to express in such a beautiful way the horrors of going through diagnosis and staging. Love your description of your fellow cancer survivors, supporting you, giving you tips to manage and standing by you throughout the process. Keep writing it is wonderful!
Thank you so much! As a fellow survivor, you were one of many women who gave me hope. I so appreciate you!