A cautionary tale about inflammatory breast cancer.
I am in my third year of fighting this cancer and have become much more knowledgeable about IBC, combining research and participation in social media with thousands of other women afflicted with the same rare cancer. The common refrain – feeling unheard.
In December 2021 my hand and wrist began swelling. I visited the orthopedist and was diagnosed with diffuse tendonitis. I was prescribed a course of steroids, given a splint for my wrist and told to return in three weeks. Two weeks later, my arm swelled to the point it appeared inflated. I called the doctor and was told to wait for my appointment the following week. Later that week a strange rash erupted inside my elbow and shoulder along with a painful rash under my shoulder blade. I returned to the orthopedist, he looked at me and said “I don’t want to scare you, but it could be a blood clot or breast cancer, that swelling is not normal”.
The swelling receded and I proceeded to my internist, he thought I had shingles and the arm swelling was due to a badly aimed Covid vaccine – nothing ‘life threatening.’ Then advised me to have a screening mammogram, just to be safe. I attempted to schedule a mammogram and was turned down, due to shingles. I was told to call back in three weeks.
Three weeks later, I still had the so-called shingles and the hospital (well known nationally/not run by hillbillies) still refused the mammogram. I visited the dermatologist to get rid of the shingles. Meanwhile, the rash was growing on my back, burning as it grew – the upper edge of the rash began to take on the appearance of an angel, wings spreading across my back. The dermatologist and her assistant were totally creeped out when I mentioned that.
The dermatologist took one look and said “you have breast cancer or a blood clot”. My response “the rash is not on my breast” I was prescribed a steroid cream then found myself on the table of a vascular specialist having an ultrasound of the veins in my arm. The vascular doctor thought my veins were fine, but wanted to do a CT scan of my chest wall. He diagnosed me with lymphedema, a blockage and buildup of lymphatic fluid in limbs, due to injury or cancer in the lymph nodes. My insurance denied the order for the scan.
It was March and I had been trying to get a mammogram for two months. The dermatologist offered to write a note stating the rash was not communicable and it was safe to do the test. The rash had now spread onto my breast, there was no question in my mind that it wasn’t shingles. I went to my appointment, met with the mammographer and showed her my breast and explained there was no clear diagnosis of the rash. Ironically, I continued to try to convince her to give me a mammogram asking if she realized this could be Inflammatory Breast Cancer. My pleas went unheard and the cancer kept growing.
I was refused a third mammogram. She said “my boss would kill me if I got a bad image.”
My dermatologist, flummoxed by our local hospital’s multiple refusals to give me a mammogram decided to biopsy the rash. The results came a week later. At the end of March, I was diagnosed with Inflammatory Breast Cancer.
My dermatologist then hunted up the first available appointment with a breast surgeon specializing in oncology. Thus, introducing me to a great breast surgeon, a delightful lady with a penchant for Day of the Dead manicures. I would not have known where to go for help, but very fortunately ended up in the right place.
The breast surgeon peeked at the skin biopsy results, trying to disguise her wide eyed surprise at what turned out to be a nasty version of invasive ductal carcinoma. In short order, she found a tumor, then simply said “come back tomorrow for a biopsy and we’ll need an MRI of both breasts.”
The tumor biopsy was taken (seemingly with a power drill) and it took a while to come back. The results, Inflammatory Breast Cancer, HER2 positive. The MRI found a large tumor in the far side of the breast near where the rash started. The surgeon then found the first available appointment with a local oncologist who tried to hide her surprise over the results and then heroically got the insurance approvals and started my chemotherapy the first week of May 2022.
The offending cancer rash disappeared with the infusion of five different chemotherapy drugs, leaving a brown stain in its wake across my rib cage. The cumulative effects of the drugs left me face down on the sofa, bald and bearing a striking resemblance to my hair challenged older brother.
During the course of chemotherapy I mentioned to the oncologist I did not think the infusions were working on my arm, where the cancer started. The rash became visible intermittently during treatment. I was unheard yet again and poopooed that there could be any cancer left in my arm. I asked to have my arm scanned 75 times (yes, I counted) I was also undergoing radiation treatment and asked the radiation oncologist to look at my arm. I was told “with your insurance, you are lucky we are doing anything at all.” This was after their financial advisor called me and tried to get the entire out of pocket insurance payment from me (almost $10,000) – informing me “I don’t care if you are having chemo at the same time and couldn’t possibly owe the entire amount.”
To say I have a bad taste in my mouth about my local oncologists is an understatement. The taste left by a few years of chemo is bad enough.
Meanwhile, left to my own devices and having been diagnosed in the wake of Covid and a perpetual low white blood cell count from chemo (means you’d better stay away from crowds and have a lot of time on your hands) I began to research what was going on. A degree in Landscape Architecture is not terribly helpful in deducing how to save yourself from rare cancer. I persisted and found the IBC Program at Dana Farber Cancer Institute and scheduled a visit. By the time I got to DFCI the cancer had fully reappeared and a biopsy of the skin on my arm proved it. Two years in, the cancer in my arm was finally addressed. I also found a Plastics and Lymphatics surgeon to help with the lymphedema in my arm, another issue my former local oncologist would never address. These two medical professionals are on the same page and I am hopeful I will be rid of this cancer.
The cumulative effect of being unheard by insurance, mammographers, medical and radiation oncologists is immeasurable (physically and mentally) Endurance is key to surviving oncologists, I think. I am hopeful that being unheard for so long will only cost me time and not my life.
Nearly three years in, the cancer has come back four times on my skin. “It’s just a rash” I was told. Surgery took care of it once, coincidental timing on chemo and radiation the other times. The fourth time I took myself to DFCI. I had a mastectomy plus a great deal of skin removed from my back, am still receiving chemotherapy and completed a long course of radiation concurrent with the chemo. My hair has grown back though the color and texture remind me of a grey Schnauzer that belonged to a friend of my mother.
My garden and my husband have been my tether and solace throughout this journey. I am a longtime garden blogger. Virtually (literally!) every week I post a blog and an arrangement of cut flowers from my garden, sending a smoke signal to the world that I am still here.
I was thrilled to find a Zinnia grown from seed in the IBC cancer ribbon colors in my garden last summer. In flower language, Zinnias are a symbol of endurance. I’m giving very serious consideration to having this image tattooed on my calf – along with a rude black comment about cancer.
My status is so far, so good. I am not out of the woods by a long shot and am sharing this story in hopes of helping others. And maybe inspiring some listeners.
BIO
Amelia Grant
A mostly-retired Landscape Architect and native Atlantan now living in a small town in South Florida with her retired husband and retired racing greyhound.
She began writing about gardening in South Florida after recovering from the shock experienced while trying to find useful information for the average homeowner who cannot cope with the lack of frost, actual soil and heat encountered in South Florida. The blog, theshrubqueen.com was launched about 10 years ago, hopefully helping gardeners in the same boat.
She has since been published in The American Gardener, DeSoto Magazine, GreenPrints, hunker.com and served as the gardening columnist on treasurecoast.com
Her own garden is a work in progress.
Cancer entered her life in 2021 and again starting to reach out to others in hopes of helping with a difficult situation.
