Rare relatively unknown deadly breast cancer hitting young women and men
Gail Fry /Contributor
Due to the efforts of Fighting 4 the Tatas Breast Cancer, Inc. Co-Founder and Chief Executive Officer Joshlyn Earls, the State of California has declared October 3, “Inflammatory Breast Cancer Awareness Day” encouraging public knowledge of a deadly, aggressive and rare breast cancer.
In an interview with San Bernardino American News, California Senator State Senator Connie Leyva introduced the resolution to the California State Senate, explaining she first became aware of Inflammatory Breast Cancer (IBC) when approached by Earls at a community event and recognized the urgency to raise awareness of the hard to diagnose aggressive deadly breast cancer that does not appear as a lump in the breast.
Dr. Massimo Cristofanilli, an expert in the field, shared his concerns that “many primary care providers are not very familiar with this disease” and many women/men and/or their healthcare providers mistake the symptoms as an “infection” and treat it with antibiotics instead of doing a biopsy. Cristofanilli further explained IBC appears as a rash on or near the breast instead of the recognizable lump most doctors and patients are familiar with.
Cristofanilli revealed IBC develops from “cells that line the milk ducts of the breast” and then “spread beyond the ducts” warning a misdiagnosis delays “proper treatment” and IBC progresses “rapidly, often in a matter of weeks or months” where the cancer can reach an “advanced stage” before being properly diagnosed.
The California State Resolution revealed IBC is “incredibly physically disabling” can occur “in men” with patients “getting younger and younger.” Both the California State Assembly and Senate viewed IBC as something Californians and the medical community urgently needed to be aware of passing the state resolution on May 29, 2018, and declaring October 3, as “Inflammatory Breast Cancer Awareness Day.”
Fighting 4 The Tatas Breast Cancer, Inc. Co-founder and Chief Executive Officer (CEO) Joshlyn Earls explained she founded the nonprofit 501(c)(3) in October 2011 after she was diagnosed in May 2011 as having “high-grade infiltrating ductile carcinoma, stage IIIB” given “two and a half years to live” with her doctor explaining his prediction of her shorter life span was “because I am black.”
Earls then began to question why her doctor predicted a shorter life span based on her race reaching out to nationally recognized cancer research organizations such as Surveillance Research Program and the National Cancer Registry.
In conducting her research, Earls explained several news articles she read while in treatment, researchers she personally spoke with and national breast cancer organizations suggested black women don’t go to the doctor, won’t follow up, won’t go into a clinical trial with one researcher telling her many black women don’t own a computer. However, in researching the subject Earls found the National Cancer Registry didn’t track deaths specifically attributed to IBC because IBC did not have a specific medical code leading Earls to question their claims of a shorter life span as to African-American women with IBC.
Erase IBC Board Member Patty Bradfield concurred with Earls citing the circumstances in her own daughter’s death where her death certificate indicated “cancer” as the cause of death instead of specifying IBC and confirming “there is no code for IBC” and questioning “how can you give me these statistics if you don’t have the actual numbers?”
Bradfield explained as to African-American women/men, “the cultural differences in the black community in going to a doctor as opposed to a Caucasian going to a doctor is not as good” explaining IBC patients who delay going to the doctor “end up being stage IV, then their chances of survival are even lower.”
Bradfield shared she was “appalled” when Earls shared her experience of starting a support group of 20 women where “she was the only black woman” and where she discovered the Caucasian women in the group “all of them had a muga test.” Bradfield explained a muga test is done to determine “whether or not your heart is strong enough to take the chemo therapy drugs because they are very hard on your heart.”
The women in the group “all had the same doctor, they all had the same team” and “all of them had a muga test, except Joshlyn” and “I hate to say racist but it sure smacks of it” sadly reporting Earl’s now enlarged heart and questioning whether African-American women may be treated differently by the medical community.
Bradfield expressed concern explaining “by the time you see it” a person with IBC is already at a stage IIIB so any misdiagnosis and/or delay in treatment can quickly develop into a stage IV. Bradfield shared that her own daughter did not seek medical help fast enough and died four years following her diagnosis. Explaining her daughter was Caucasian, had gone to nursing school, and was fortunate that she went to a knowledgeable doctor.
Bradfield reasoned many women go to a dermatologist when they experience a rash or abnormality on their skin near their breasts, which can even look like a bug bite that a biopsy is needed to determine whether it is IBC and it should be “ruled out” early. Erase IBC website is at: https://www.eraseibc.org/
Bradfield recommended watching a documentary entitled “The Silent Killer: Inflammatory Breast Cancer” which can be viewed: https://komonews.com/archive/komo-news-special-report-inflammatory-breast-cancer
Fighting for the Tatas CEO Earls described the symptoms of IBC as swollen breasts that feel very heavy, are “angry red,” hurt like a stabbing pain and have an itch for which there is no relief and looks like a rash. Earls warned the cancer stays in your body and is “the fastest recurring breast cancer.”
“There are 17 or more different types of breast cancer and there are four stages,” Earl shared warning “the medical world doesn’t know what they are looking at” and “it is killing time” when it is misdiagnosed as an infection.
“Inflammatory breast cancer is in the skin, it’s not a lump, it’s like a rash on your chest wall, it’s a rash and most people are looking for a lump,” Earls shared. Fighting for the Tatas’ website can be viewed at: http://www.fighting4thetatas.org/
Earls explained IBC is “attacking women in their 20’s and 30’s” that “no one knows why” and describing the increase of the cancer in the younger generation as a “national health crisis” as women in their child-bearing age are being impacted while they believe they are “invincible.”
Earls emphasized the importance of early diagnosis as IBC spreads rapidly and by the time it reaches a stage IIIB, 30 to 35 percent of the cancer has already spread to distant lymph nodes and/or organs according to Dr. Massimo Cristofanilli, “There is so little information about IBC,” Earls acknowledged warning, “Because IBC spreads so rapidly the patients don’t have a lot of time.”
On Saturday, October 6, 2018, Fighting 4 the Tatas Breast Cancer, Inc. is holding a “Breast Cancer Awareness Festival” at the Rialto City Park from 10:00 am until 6:00 pm. featuring entertainment, vendors, a Decorate A Bra contest, a wall of ribbons representing those who died of breast cancer, an auction, a kid zone, a 50/50 raffle and free water and is seeking volunteers, interns (with intern credits), auction items and vendors for the event.
Both Earls and Bradfield view the next steps in raising awareness and preventing IBC deaths as developing an effective screening for the disease, enacting legislation requiring screening for the disease, requiring continuing medical education for medical professionals and recognition of IBC through a national awareness day while encouraging people to contact their federal and state representatives to express their concern and suggest solutions to prevent unnecessary IBC deaths.
Additional information on IBC can be found at the National Cancer Institute website at: https://seer.cancer.gov/ with a fact sheet on IBC at: https://www.cancer.gov/types/breast/ibc-fact-sheet
Two requests for comment by the San Bernardino American News regarding the statistics on African-Americans from the National Cancer Institute went unanswered as of press time.
