‘I just want people to know this exists’: Young Black mom fights rare breast cancer
At 30 years old, Amanda Bloom of Akron is not the typical demographic for a patient with a rare and aggressive form of breast cancer.
But the type of cancer the young Black mother has strikes younger women and doesn’t present like other breast cancers.
Bloom has been diagnosed with stage 4 metastatic inflammatory breast cancer. The cancer has spread to her lymph nodes and bones.
She has been trying to navigate a health system that she’s finding riddled with disparities for Black patients — and fighting a disease that strikes Black women more than their white counterparts.
The diagnosis is often missed or misdiagnosed and the patients do not have breast lumps, which are often a sign of breast cancer. The disease also can’t be diagnosed in a mammogram or ultrasound but an MRI.
What is inflammatory breast cancer?
Inflammatory breast cancer, often called IBC, accounts for 1 to 5% of all breast cancers diagnosed in the United States, according to the Sealy, Texas-based IBC Network Foundation, a nonprofit organization that educates people about the disease and funds research.
This type of breast cancer, in which cancer cells block lymph vessels in the skin of the breast, is called “inflammatory” because the breast often looks swollen and red, or “inflamed," according to the foundation.
IBC progresses rapidly, often in a matter of weeks or months. Inflammatory breast cancer is either stage 3 or 4 at diagnosis, depending on whether cancer cells have spread only to nearby lymph nodes or to other tissues as well, according to the foundation. It is not commonly picked up by a mammogram since it does not present with a lump in the breast.
IBC also tends to show up in women at a younger age and spread more quickly than other types of cancer, according to a 2020 study completed by University of Michigan researchers, which was published in "Breast Cancer Research and Treatment." It is often diagnosed at a late stage because the cancer cells have already grown into the skin by the time symptoms appear; it’s typically diagnosed at stage 3 or stage 4.
The incidence of IBC among Black women is more than 70% higher than in white women, affecting 4.5 Black women out of 100,000 compared to 2.6 white women, according to the study.
IBC tends to be diagnosed at younger ages — the median is 57 compared to a median of 62 for other types of breast cancer, according to the IBC Network. However, Terry Arnold, executive director of the network and an IBC survivor of 13 years, said she has spoken to patients as young as 19 although the majority tend to be around 30 and in childbearing years.
The median age of IBC diagnosis in Black women is 54 years, compared to 58 years in white women, the network said.
The University of Michigan study also found that women with IBC are living about twice as long as their counterparts in the mid to late 1970s, but despite that overall improvement in survival, the ongoing disparity between white and Black patients exists.
“White patients today still tend to live about two years longer than their Black peers,” the study said.
Researchers found that from 1973 to 1977, patients with IBC survived for an average of 50 months, compared to 100 months for patients diagnosed from 2008 to 2012.
Unlike strides made against other types of breast cancer, there aren’t yet any targeted therapies against IBC, the study said.
While women with other types of stage 4 breast cancer may be able to live longer with treatments, IBC patients do not have the same life expectancy, Arnold said.
Treatments include chemotherapy and radiation, Arnold said. Some women get a radical mastectomy, which removes the whole breast, all the lymph nodes under the arm, and the chest wall muscles under the breast.
What are symptoms of IBC?
Here are potential common symptoms, according to the IBC Network:
Breast swelling, which one breast is suddenly larger than the other.
“Bug bite” or small pimple that doesn’t heal.
Breast that feels warm to touch and may look infected
Itching or shooting pain.
A dimpling of the breast skin that looks like an orange peel (peau d'orange).
Thickening of the skin.
Flattened or discolored nipple.
Swelling in underarm or only on one side of neck.
Might feel lump, however lumps are not common in IBC.
"A sudden change to one breast that lasts more than two weeks warrants an exam by doctor to confirm or rule out inflammatory breast cancer,” Arnold said. The change may also not be dramatic or a sudden swelling, she said.
Since the disease is often misdiagnosed, patients may have to see multiple doctors, Arnold said. There are only a handful of clinics worldwide that are specifically devoted to it, including a new one at Ohio State University.
The disease itself is old and there have been women treated for it for years, Arnold said, but it is considered an orphan disease, which means there is less research and pharmaceutical companies see little incentive in working on medications.
The new inflammatory breast cancer program at The Ohio State University Comprehensive Cancer Center — James Cancer Hospital and Solove Research Institute’s Stefanie Spielman Comprehensive Breast Center can be reached at https://cancer.osu.edu/IBC or 800-293-5066.
Amanda Bloom's story
Amanda Bloom, who goes by Bloom to her friends, was born to a crack-addicted mother. Bloom showed no signs of crack in her system when she was adopted as a newborn, said her adopted mother, Linda Bloom, who adopted and raised four children with her husband, Mark.
But the family believes that Bloom’s many medical ailments as she was growing up were from her birth mother using crack during pregnancy. As a child, she had surgeries on her stomach and had severe migraines — though she didn’t know they were migraines.
A 2009 graduate of Nordonia High School, Bloom attended Bowling Green to study theater, but gallstones and a subsequent surgery caused her to leave school. She took some classes online at the University of Phoenix and then went to Kent State.
But while at Kent at age 18, she began having back issues, including a herniated disc, which turned into three back surgeries.
This is when Bloom said she started to feel like she was not being treated the same when she went to seek medical care.
As she was growing up, even with all of her medical ailments, Bloom said her mom, who is white and was part of the medical community, was with her. She got great care, Bloom said.
Several incidents over the next several years caused Bloom to distrust the medical system and feel that she was being misdiagnosed or blown off, she said.
"I thought I had good care my whole life,” she said. “I didn’t realize that [the care changed] because I was Black and on Medicare.”
Bloom also acknowledges that there was a time in her life from about age 18 to 22 when she went down the wrong path.
While recovering from a back surgery, she became addicted to the Percocet pain relief she was prescribed. Bloom said she did not progress to the stronger opioids and would often trade the stronger medications for Percocet.
“I was bad at the streets,” she said. “I was probably the best client any drug dealer ever had because I would be like a middleman. I would call this guy that would come to my job, take my car, use my food stamp card and then take extra money for the already overpriced drugs I was buying.”
Within that four-year span, she accumulated six felonies and spent time in jail, after stealing from her family and losing custody of her son. Her mother still has guardianship of 7-year-old CJ, but when Bloom successfully completed rehab and moved to Akron, CJ lived with her while Bloom’s mother, family and CJ’s dad were active in his life and care.
Bloom got pregnant with CJ in the midst of her addiction problems and stopped drinking and using Percocet while she was pregnant.
“I think a lot of my problems stemmed from being a premature baby of a crack-addicted mother, so I wasn’t going to do that to him.”
But Bloom admits that she still wasn’t present as a mother during CJ’s early life since she went back to her Percocet drug use and ended up in jail.
Bloom’s sobriety date is April 20, 2016, after she was sent to rehab.
She moved to West Akron, worked three restaurant jobs and was raising CJ.
As a former drug addict with felonies on her record, Bloom said she had to convince and rely on people who would take a chance on her for jobs and to rent an apartment.
Sleuthing to figure out what was wrong
Last year, Bloom had a third back surgery and a rib removed as part of another diagnosis called thoracic outlet syndrome, which is a group of disorders that occur when blood vessels or nerves in the space between the collarbone and first rib are compressed.
Earlier this year, she had just started to feel better after those surgeries and a bout with COVID in December.
But something still felt wrong, Bloom said. She was feeling fatigued, her breasts were hurting, she was feeling lightheaded and she was throwing up daily. She thought maybe she was pregnant. She took multiple pregnancy tests.
She passed out at a baby shower and ended up in the hospital and left in a wheelchair unable to walk. In March, she moved home to Macedonia so her parents could care for her. Though doctors told her that she would have trouble walking, she has recuperated from that.
Bloom, who said she is a voracious researcher and reader, began trying to figure out what was wrong. She had lost 70 pounds in the last six months. Her right breast began getting larger and changing last year around August or September.
Her spinal doctor is the one who first mentioned that she wondered if Bloom had inflammatory breast cancer since they saw tumors on her spine and put together her symptoms of her sudden larger breast. The physician said she also knew that it was a much different type of breast cancer and affected younger Black women. But the doctor said she was not the specialist.
Bloom went for a mammogram and was told there was nothing suspicious and come back in six months.
Bloom already had begun researching about IBC so kept digging. She joined a Facebook group about started reading about the MD Anderson Inflammatory Breast Cancer Clinic in Houston.
Bloom’s Ohio Medicaid would not cover any treatment in Texas, so her mom took $13,000 out of her retirement account to get her daughter an appointment and care at MD Anderson. Bloom went last month to get tests, including the MRI. It confirmed she had IBC.
She will return to Houston this month for a biopsy to see what hormonal strain of cancer she has and to see a physician about next steps.
The cancer has spread to her lymph nodes and bones. She suspects it has spread to her lungs since she has been having a hard time breathing.
“I’m learning as I go. All I know is that I have stage 4 metastatic inflammatory breast cancer.”
Bloom had not heard of the new OSU clinic and says she may look into transferring her care from Texas closer to home since costs are so high.
“Breast cancer is almost like a positive cancer to get diagnosed with these days because of the connotations if you catch it early. But this cancer, there’s no catching it early, but it’s also deadly. Best-case scenario is you live for 10 years and some people live longer, but you never go into remission. If you’re alive, you’re getting treated,” she said.
Bloom has not completely decided her course of action, but she is not in favor of going through the treatments, losing her hair and feeling poorly “to get a little bit longer.”
“There’s always hope and I don’t want to say there’s not hope, but the later you get diagnosed, the less chance there is of being able to lead a life of quality,” she said.
“I wanted to do this story because I know that there’s going to be another Black girl that her boobs are different sizes and she had no idea that these tiny little dimples are deadly. That’s all it is; it looks like an orange peel.
“I don’t want anybody to get crazy scared or anything, but there’s certain things that are really relevant to inflammatory breast cancer. I don’t want other people not to hear about them because they took too long to diagnose me and that’s literally exactly what I’m trying to prevent.”
It is unknown if Bloom’s other ailments are linked and she thinks they may have weakened her immune system, but Arnold with the IBC Network said it is not typical for women to have a list of other ailments before IBC.
We don't have any ideas of any precursor to this illness. If is more often like an attack, healthy one day. Stage 3 cancer the next," said Arnold.
Bloom wants to educate women to the rare disease.
“All I want to do is if one person literally looks at this and realizes one day that they have this and they get treated a month sooner and live a month longer, then that makes everything worth it.”
“The way it looks, I don’t have much time. I probably have a year or so. People hate that I say that, but I’m a numbers girl through and through and I need to make sense. A lot of my conditions didn't make sense because I shouldn’t have this many rare conditions," she said.
Preparing for son's future
Bloom said she’s trying to build her own life insurance for her son since she can’t qualify for life insurance with her medical conditions. Her parents are older and her mom just had a heart attack last week and is home recuperating.
Bloom has opened an online business called Bloom’s Garage — https://bloomsgarage.com — where she is selling both new and used items. The tagline is “From Antiques to Tech Geeks.”
Friends have also started a Go Fund Me — https://www.gofundme.com/f/-bloom —and are planning a fundraiser on Sept. 24 for her, which will include live music, food trucks, a raffle and silent auction. More information or tickets can be found on the Facebook Page “Blooming for Hope” or tickets for $10 each can be purchased at https://www.eventbrite.com/e/389641928497
Bloom came up with a concept for a children’s book while she was in jail. She has a book coach and the book is currently being illustrated. She’s working on a podcast to talk about everything that has happened to her. It will have a focus on awareness of cancer. https://Flowersbloom.net will be live soon.
“I realized maybe I was just supposed to be the actor in my own story because I've always wanted to act,” she said. “I can just tell my story.”
She’s also wanting to finish her bucket list, which includes traveling to all of the states and out of the country with her son.
Staying away from drugs
Even now, Bloom says she is in constant pain, but because she doesn’t want to go backward as an addict, she will not take any pain medications, though she does take medical marijuana to dull some of the pain.
“At this point in my life, I have stage 4 cancer and I’m choosing to go to an A.A. meeting every day instead of even taking Percocet the right way,” she said. “The only day I’ll live pain free is the day I’ll be in hospice,” she said.
“I’m not giving up, even if I don’t choose to do chemo and radiation. I’ve been a fighter for a long time,” she said, “I’m not giving up. Just at some point, I want to keep fighting to live a life where I can laugh and have a good time rather than fighting in a hospital alone.
“I just want people to know this exists.”
Beacon Journal staff reporter Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ To see her most recent stories and columns, go to www.tinyurl.com/bettylinfisher
This article originally appeared on Akron Beacon Journal: Young Black mom fights rare inflammatory breast cancer
