In honor of Breast Cancer Awareness Month, I interviewed my good friend Beatrice who lost her mom to inflammatory breast cancer. I am so grateful to Beatrice for sharing her story and her mom’s story with me.
What prompted your mom to visit the doctor for an examination?
The skin on her right breast was inflamed which she thought was just an allergic reaction. The nurses thought that the inflammation looked like a rash, but they performed a biopsy just to be sure. The biopsy results revealed that my mom had inflammatory breast cancer and she was referred to a cancer center for further treatment.
(Inflammatory breast cancer is an especially aggressive type of breast cancer that can occur in women of any age (and extremely rarely, in men). It is called inflammatory because it frequently presents with symptoms resembling an inflammation. However it can present with very variable signs and symptoms, frequently without detectable tumors and therefore is often not detected by mammography or ultrasound.)
Is there a history of breast cancer in your family?
My great-grandmother was diagnosed with breast cancer in her eighties, but she passed away from natural causes; not from anything associated with her breast cancer diagnosis. There is a possibility that my grandmother could have eventually been diagnosed with breast cancer, but she died at a young age.
After your mom was diagnosed, what steps were taken to treat her?
After she was diagnosed in May of 2003, she underwent chemotherapy for three months to try and kill as much of the cancer as possible. She had a mastectomy in September to remove her right breast and lymph nodes on the right side of her body where the cancer was also present. Two small tubes were left in place, after her mastectomy, to drain and prevent fluid from collecting in the space where the breast tissue used to be. They gave her a few months to recover from the mastectomy before starting her on radiation in January of 2004.
Along with your mom being diagnosed with such an aggressive cancer, what other hardships did you encounter?
My mom didn’t have any health insurance, so when she was first diagnosed, she was being billed for all of her treatments; and because her condition was life threatening she had to be treated immediately. My mom wasn’t lacking health insurance because she wasn’t employed. She was a hard working woman who just so happened to land jobs that didn’t offer health insurance. She applied for Medicaid at the cancer center where she was being treated, but it took about three months for the Medicaid to go through and for all of her bills to be cleared.
How did your mom’s health respond to the treatments?
Two months after her radiation treatment, the doctors informed her that her cancer was in remission and that she should return in six months for a follow up visit. We were all excited; and my mom decided to celebrate this good news by using the six weeks between her follow up appointment to travel to St. Louis, MI and visit my sisters.
One day, about two - three weeks later, my mom and sisters took a trip to the supermarket. Whatever items they purchased totaled sixteen dollars and change, yet my mom handed a five dollar bill to the checkout clerk. My mom had always been sharp woman; plus she’d been sleeping more than usual so my sisters knew that something was wrong. They took her to a doctor in St. Louis, and they discovered that the cancer had spread to her liver and the reason she seemed out of it was because her liver had stopped removing toxins from her brain and this was affecting her mental state. I’m not sure how they missed this because her liver was so enlarged that she looked like she was pregnant.
What did the doctor in St. Louis say about her condition?
The doctor in St. Louis was shocked that her doctors in Grand Rapids, MI had neglected to recognize the dire state my mom was in. Instead of her cancer being in remission as we were told, it was actually Stage IV. The doctor also told us that if they had done the proper testing in Grand Rapids, which would have taken a day, they would have discovered that the cancer was in her liver.
(Stage IV cancers have often metastasized, or spread to other organs or throughout the body.)
How did you feel about the fact that your family was so critically misinformed?
I did my own research on inflammatory breast cancer and after learning that IBC doesn’t have a high survival rate, I wouldn’t have allowed my mom to go through all of those treatments because it was so horrible for her.
I felt like the doctors she was seeing in Grand Rapid, MI either weren’t knowledgeable or they were just careless with her because she didn’t have the best health insurance. If her condition was fatal, she shouldn’t have been told that the cancer was in remission. Because her cancer was Stage IV, they shouldn’t have made her hopeful; they should have just allowed her to live out the rest of her days.
How old were you at the time?
I was twenty-two years old at the time and had just graduated from college in New York. With financial support from my dad, I was able to take five months off so that I could return to Michigan and take care of my mom. I am so fortunate and grateful that it was possible for me to spend that time with her.
After finding out that the cancer had spread to her liver, how long did your mom stay in the hospital?
My mom stayed in the hospital long enough for the toxins that were affecting her brain function to be removed, and once her levels returned to normal, she went home where she received Hospice care. She just wanted to be in her own home with her daughters. She passed away about a month later.
Being that you have such a close link to breast cancer, what precautions do you have to take?
The normal age in which women should start getting mammograms is age forty, but I have to get mammograms beginning at age thirty-five and I have to be rigorous about performing breast self exams.
I’d like to thank Beatrice again for sharing with me, for allowing me to ask her a million invasive questions, for trusting me and for allowing me to share her mom’s story with all of you.
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