First Diagnosis
We only see this once every 20 years and it is very aggressive:
First Diagnosis of Inflammatory Breast Cancer
It began with a marathon; one that my sisters were running. Little could I imagine that the race, with a high degree of difficulty through steep, mountainous terrain and densely forested trails, would become a metaphor for the next several years of my life. After a long day of race activities, several of us had gone out to dinner at a crowded restaurant. As we waited, lined up against a wall, my brother-in-law, a fourth-degree black belt in karate, flung his arm back and accidentally hit me in the chest. Stars exploded behind my eyes and I couldn’t breathe. My sister thought I was being overly dramatic, but as we sat down to eat, my appetite abruptly disappeared. Like the Titanic hitting the iceberg, this collision was the first major red flag that something had gone terribly wrong.
About a week later, while watering trees in the backyard, my right breast started itching again. I hadn’t given much thought to intermittent itching over the past couple months and, if anything, ascribed it to hormonal changes associated with approaching menopause. Sitting at my desk, I’d find myself using the eraser end of a pencil to scratch the itchy breast. The right side occasionally felt heavier and more full than the left. That evening, I looked in the mirror and saw a red and swollen breast. It felt hot to the touch as if it had a fever. What I didn’t know then was that symptoms confined to one breast are always a reason for suspicion and that hormonal changes should affect both breasts equally. In my situation, all the problems were confined to one breast.
I entered the symptoms into Google and an alarming diagnosis popped up. Inflammatory Breast Cancer (IBC); a fast-growing and extremely aggressive disease with poor survival rates. Noting that it was rare, I figured the chances were slim that this was the cause for the trouble. A routine mammogram completed four months prior found nothing of concern. Plus, I’d recently taken the inadvertent hit to my chest and the swelling was probably due to the injury. Nonetheless, I contacted my doctor the following morning.
Upon my call, the doctor quickly scheduled an appointment and immediately sent me for a mammogram and ultrasound. Written on the paperwork were chilling words; “rule-out inflammatory breast cancer.” Although I now know that a mammogram rarely, if ever, catches a case of IBC, I dutifully handed over the referral to the waiting technician. “This ought to be interesting,” she said. “We only see this once every twenty years and it is VERY AGGRESSIVE.”
I was flooded with relief when the results came back as normal, the reports reading “no evidence of malignancy” and recommending routine follow-up in six months. This result aligned with findings from many routine exams I had done with a breast specialist for over ten years. I had undergone annual mammograms since I was 40 and was no stranger to ultrasounds and biopsies. More than a decade before, a benign fibroadenoma was extracted from the left breast. Further complicating matters was a diagnosis of high-density breast tissue, something that is determined from a mammogram. Dense breast tissue made biopsies difficult and my doctor swore off doing any more of them because “it’s like you have cement in there.” On one occasion, the biopsy needle seemed to get stuck in the morass that inhabited my breast. High-density tissue complicates cancer diagnosis and is now linked to an increased risk of breast cancer. For several years before my cancer diagnosis, I’d been referred for 3-D mammograms which are designed to better assess women with high-density tissue.
A few days after the unremarkable findings, my doctor called to check in with me, saying she was cautious by nature and wanted me to come back in “for another look.” That phone call saved my life. As the symptoms were not noticeably worse, I was completely unconcerned about cancer. I attributed the breast changes to the restaurant collision with my brother-in-law and figured the injury was healing on its own. With an audit pending at work, I booked an appointment several weeks out. Driving to her office that day, I figured I’d be in and out in a few minutes.
I wasn’t.
My doctor said that something didn’t look right and she wanted an MRI. She saw skin thickening, which I later learned is the classic calling card of IBC. She came into the room furious that my insurance company had denied a stat MRI. She told me to start making calls. I asked her who I should call. She said, “your insurance company, your Congress-people.” I asked her what I should tell them. “You should say that you may have a life-threatening cancer and you need an MRI immediately.”
Due to the clash with the insurance company, the doctor said she couldn’t let me leave the office without “doing something.” She chose a core biopsy, as the punch biopsy she had done weeks earlier failed to detect malignancy. As she extracted the samples, she said, “If these come back fine, my office staff will call you. If there’s a problem, I’ll be calling you myself.”
Somehow, that pit-bull doctor got the insurance company to come around to her way of thinking. I had the MRI a few days later. The day after the MRI, my phone rang and she was on the other end.
It was cancer.
My personal marathon had begun.
Absolutely terrifying to be reading your personal account of dealing with this dreadful diagnosis twice. Diagnosed last July and currently undergoing chemo, I wish I could be as brave and as defiant as you were.
Thank you for sharing your story.
Thank you for taking the time to read. My goal is to provide HOPE and support to others who struggle with this difficult illness. Best wishes in your treatment! You can do this! Your IBC sisters are here for you.
Clare, this is a beautiful blog! It must have been so much work and I know it will benefit many others. My eyes are tearing up reading about your first diagnosis, knowing what you’ve been through these past years. I hope you are also thinking about publishing your thoughts in book form.
Thank you so much! I appreciate all your support.
Hi Clare,. I feel as though I already know you. Not only through my cousin Chris, but my brother Dennis. I too have fought the battle against breast cancer as have many in our family. Dennis always spoke so highly of you and looked forward to your visits. I continue to keep you in my prayers. Hoping one day there will be cure for this horrific disease that has taken so many from us. Wishing you love and peace.
Hello – thank you for checking in and making the time to read. Soon, I will post the story that features some of Dennis’ experience. Dennis remains near and dear to my heart. He would never, ever let me buy the coffee or the lunch! That was just how he rolled. I miss him a lot. Thank you for your kind words. Love and peace to you, too.
Clare, I’m so sorry you’ve had to go through this not once, but twice. I can’t even imagine it. I’ve been watching from the wings your strength, courage, and endurance. I appreciate your sharing how you’ve had to not take “no” for an answer and how important it is for women (all people) to challenge the medical providers and insurance companies to get care and not just be written off. I appreciate your fierce doctor who told you how to swing in the fight to get your needs met. It shouldn’t be this hard. It is though. I’ve had my own version of this with non-life threatening health issues. Advocate for ourselves, refuse to leave without receiving the care we need. Thanks for sharing your story.
Thank you for your feedback and comments, Davina. There is more to come on the topic of advocacy and quality health care. I appreciate your support!!
Clare, I admire your courage and perseverance to develop this site. I also want to thank you personally for all the support you have given me over the past year and half as I dealt with my own TNBC diagnosis. You are an inspiration and a joy to text with! I look forward to reading all your entries and learning more about your journey.
HI Sarah – thank you so much for taking the time to read and for your comments. We are in this together!