Ellen McCarthy called it “Devil Cancer.”
In the Facebook comments she posted from the time she was diagnosed with inflammatory breast cancer on Jan. 9, 2012 to being declared cancer free, Dec. 30, 2012, she often opened her posts with the same term.
Jan. 9, 2012: “My dear Facebook friends and family, today I learned that I have a rare breast cancer. It is called inflammatory breast cancer. I see the doc tomorrow and will find out more. The usual practice for this raging devil is treatment first and then surgery, if necessary. Will keep you updated when I know more.”
It started a few weeks earlier, in December 2012. Stepping out of the shower, she noticed swelling in her left breast. She considered asking her sister, Claire Spriggs-Marrs, about the swelling. Asking a sister was a given for Ellen’s close-knit family. The daughters and son of the late Andrew and Carolyn Squires, sisters Ellen, Claire, Marie and Lydia, and brother Andy, have been close since their days growing up in Valdosta. The sisters remained close as they married military men and moved away, then through the decades found their way back home to their native South Georgia.
So, asking Claire was a given. Looking at the affected area, Claire said Ellen needed to see a doctor; however, not taking the swelling seriously at first, Ellen forgot to call the doctor that afternoon. She did the next day at Claire’s insistence.
By late December, Ellen had a skin and tissue biopsy at Smith-Northview Hospital. By the time she received her Jan. 9 diagnosis, Ellen already knew what they doctor would say: Inflammatory breast cancer. She had done her research.
“Inflammatory breast cancer is a rare and very aggressive disease in which cancer cells block lymph vessels in the skin of the breast,” according to the Inflammatory Breast Cancer Research Foundation. “This type of breast cancer is called ‘inflammatory’ because the breast often looks swollen and red, or ‘inflamed.’ Inflammatory breast cancer accounts for one to five percent of all breast cancers diagnosed in the United States. Most inflammatory breast cancers are invasive ductal carcinomas, which means they developed from cells that line the milk ducts of the breast and then spread beyond the ducts.”
Inflammatory breast cancer moves quickly. It is not unusual for it to spread in a matter of months or even weeks. For McCarthy, the swelling appeared suddenly.
“Inflammatory breast cancer is either stage III or IV at diagnosis, depending on whether cancer cells have spread only to the nearby lymph nodes or to other tissues as well.”
Ellen McCarthy answered for the doctor. She told him her diagnosis. The doctor said, “Yes. Inflammatory breast cancer is a rare and aggressive form of breast cancer,” McCarthy said, recalling the conversation. She was stage III. Her odds: 40/60. A 40 percent chance of survival ...
She began chemotherapy, only to learn she was allergic to the chemo. She expected to lose her hair but did not expect the side effects of raw, “fire-red” hands where the skin peeled away in sheets.
She had surgery. A radical removal of the left breast and several lymph nodes. The removal of the right breast as a future precaution.
Her skin burned from 32 sessions of radiation. Post-cancer, she has developed lymphedema, localized fluid retention and tissue swelling, along her left arm; arthritis makes it nearly impossible for McCarthy to pull on the compression sleeve to help this condition.
During her treatments, she developed shingles on her back down along her left leg.
She began losing her hair. It came out in clumps. Her sisters told her to shave her head. She did. Chemo eventually took every single hair from her body and head, even her eyebrows and lashes. All save one eyelash which she triumphantly dabbed with mascara. At first, she wore hats, wigs, and even a turban adorned with a large flower. Soon, she stopped. She wore nothing on her bare head. “I decided to own my baldness.”
Cancer may be a devil. It may take her life, but Ellen McCarthy didn’t want it to steal her spirit.
Given the 40/60 prognosis, Ellen thought she might die. A mother, grandmother and great-grandmother, she thought she may not live much longer to see her family continue growing.
“I didn’t think I was going to make it. ... I stayed pretty positive. Any doubts I had, I kept to myself.”
She relied deeply on her family. The sisters supported one another. Claire would drive Ellen to her treatments. She would make chicken-salad lunches for Ellen. They would share chicken salad with anyone else waiting for treatments. Though chemo left her bone weary and caused aggravating allergic reactions, but the treatments never made her sick to her stomach. Her granddaughter, Meagan Lane, would sit with her during treatments and at home.
She kept her Facebook blog of her treatments and her progress. Writing her story day by day was a catharsis. Reading people’s positive feedback buoyed Ellen.
Feb. 3, 2012: “Well folks, I told you that I would do it. Today I had my head shaved. The ‘Sisters’ decided it was time since it was shedding really badly. I don’t want anyone to feel bad about me losing my hair. I don’t. As I said before looking forward to this new chapter in my life. Bought 3 hats today. Don’t know if I will wear them or not. Thanks to Mary, my hairdresser, for buzzing me today. Peace. Ellen”
March 16, 2012: “Been really sick all week. Hands, ankles and feet itchy and on fire. Bones hurt so bad I can’t walk. I have slept almost since Monday. My Peaches (her dachshund) doesn’t understand her human mommy being in the bed.”
April 4, 2012: “Well, I’m allergic to the new chemo. Doc out of town. See him Monday. Today I saw the skin doc. I have shingles among other things. I have 5 new meds. 2 creams, swish and spit and nice pills. Boy do I need those nice pills. I’m going to take a pain pill and go to bed. Peace, Ellen.”
April 9, 2012: “Well, I have been so allergic to the chemo that it is being postponed. It seems that I will be having my surgery in the next two to three weeks , then two more chemos and then radiation. I can’t do anything normal or easy. ...”
May 8, 2012: “OK Friends, I had an appt. with my surgeon today and it was a negative but we will make it a positive. My cancer has metastasized but the question is where? All of my lymph nodes (18) that were removed had the cancer cells. Lymph nodes talk to each other so there (is) no knowing where it could be. I will have to go through more chemo then radiation. This I already knew but it could be more than I expected. Doctors won’t give you a prognosis, life expectancy, any more. But, medical wise it doesn’t look good. That’s it.”
May 22, 2012: “I started chemo again today. One more and then 32 radiations. I feel fine, so far.”
May 29, 2012: “Went to the doc today. Had a fever and that’s not good. Also had to have fluids and have to have them again tomorrow. I am very dehydrated. Running a fever now. Have lost 39 pounds. Feel lousy and going to bed.”
July 29, 2012: “I know I haven’t posted in a while. That’s because all was well. I have been having radiation. I have had 17 radiations and have 16 left. My last rad is on August 20. ... My radiation has seriously burned me. It has also affected my esophagus. I can’t swallow my pills or my food. I have been given a scrip for Lidocaine Viscous, a syrup that is the consistency of mucous (disgusting), but today that is not working. It is to deaden my esophagus so I can swallow.”
August 28, 2012: “Went to the oncologist and he told me to take 3 months (and) build my strength. He said that I had been through a lot. In 3 months we will take blood again and see if I am in remission.”
Come December 2012, McCarthy was told she was in remission. After chemo and radiation, she was told she was cancer free. She demanded a PET scan to confirm this.
On Dec. 30, 2012, she received the confirmation. Her year of cancer came to an end a day prior to New Year’s Eve.
Ellen McCarthy, cancer free.
Throughout that year, she maintained her active schedule, leading several civic organizations. She discovered new things about her life and herself.
She still has regular check-ups, but nearly a year out from being declared cancer free, McCarthy has been looking for “what the Good Lord wants me to do.”
Mostly, she hopes this article helps other women learn more about inflammatory breast cancer.
Meanwhile, she stays close to family. For this interview, she met at her sister Claire’s house. This past weekend, Ellen officiated a daughter’s wedding. Looking in the mirror brings her closer to family.
Before cancer, her hair was brown. After cancer, her hair is a mix of dark and gray, which reminds her of her mother Carolyn’s hair.
Seeing this hair, Ellen McCarthy comments, It’s like a sign that her mother was her guardian angel throughout breast cancer.
Additional features of Inflammatory Breast Cancer
— Compared with other types of breast cancer, inflammatory breast cancer tends to be diagnosed at younger ages (median age of 57 years, compared with median age of 62 years for other types of breast cancer).
— It is more common and diagnosed at younger ages in African-American women than in white women. The median age at diagnosis in African-American women is 54 years, compared with a median age of 58 years in white women.
— Inflammatory breast tumors are frequently hormone receptor negative, which means that hormone therapies, such as tamoxifen, that interfere with the growth of cancer cells fueled by estrogen may not be effective against these tumors.
— Inflammatory breast cancer is more common in obese women than in women of normal weight.
Ellen McCarthy called it “Devil Cancer.”
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