Women's health

Breast cancer: Advocate harder, advocate smarter

Fortunately, Lisa B. Jones' hereditary breast cancer was detected early. Today, she helps disadvantaged women in similar situations in New York.
Leane Clifton
Published on October 18, 2021

Three women, three countries, three individual breast cancer stories. In the third part of this three-part series Lisa B. Jones, a native New Yorker who has survived cancer meets our journalist and a photographer in Harlem to talk about her work as a healthcare advocate and SHARE1 ambassador helping women navigate breast cancer diagnosis and treatment. 

I must admit, a healthcare clinic was the last place I expected to meet a breast cancer survivor as one of their favorite places, but here we are in a small examining room at <a href="https://ryanhealth.org/" target="_blank">Ryan Health</a> in Harlem, a private non-profit federally funded healthcare provider where Lisa volunteers as a patient advocate and community outreach educator.
<p>“This is one of my happy places because of the work and the openness to the community collaboration that Ryan Health has with me, and <a href="https://www.sharecancersupport.org/" target="_blank">SHARE<sup>1</sup></a><sup></sup>,” says Lisa.&nbsp;<br></p>
Lisa B. Jones stands outside the entrance to Ryan Health in Harlem, New York City, one of her favorite places
Although breast cancer rates are high in the area at least 16 major hospitals have closed across NYC creating a gap in medical care in many communities as thousands of in-patient beds are eliminated and former medical centers become luxury condominiums. During previous city administrations property values skyrocketed and it became more financially advantageous to sell the buildings than continue to fund failing or aging neighborhood hospitals. In response to these changes in healthcare delivery in the last decades walk-in emergency care and organizations like Ryan Health are dedicated to providing high quality, affordable, comprehensive and culturally competent healthcare services to medically underserved populations – creating a safety net.
Executive Director Charles Shorter is Lisa’s partner in advocacy. <br><br>
The picture shows Lisa B. Jones´ partner Charles Shorter
”It’s very apparent, when looking at data, that women of color, black and brown women aren’t getting the necessary breast cancer services,” says Shorter. “So we partner with an organization that brings their mobile van in to provide free breast cancer screenings.” Lisa is there in her role as a <a href="https://www.sharecancersupport.org" target="_blank">SHARE </a>ambassador to offer support and information to the women who come for testing.
Lisa B. Jones began her career as a chef. “I would work with a lot of nutritionists because I was curious about how do I make it taste good and still be good for you?”<p><p>‘Healthy’ culinary arts was a new and highly popular concept in the 1990s. Jones was hired as a consultant by Harlem Hospital to design recipes for their ‘Healthy Heart’ initiative. She says, “It was also trying to marry food, health and community.”<p><p><p>She was also taken on by the healthcare workers Local 1199 to do large-scale food demonstrations, “how to make a healthier egg salad, or a tuna salad or a chicken salad”. She did demonstrations for brands like Braun and Vitamix and became known as ‘the smoothie chef’. NYC Mayor David Dinkins hired her as his personal chef at his official residence, Gracie Mansion. As a result of her consulting work she transitioned into community relations for healthcare companies Health First and other community health interests. <p>Then she got sick.<p>
Lisa’s mother was diagnosed with breast cancer when Jones was seven years old. She says her mother was an excellent cook and when she got sick, “it showed in the food that she could make, because she might make one meal for us, but then she was unable to eat.” For three or four years until her mother’s death, cancer “was the tapestry of my life, it ran everything”.<p>According to the American Cancer Society, the most common cause of hereditary breast cancer is an inherited mutation in the BRCA1 or BRCA2 gene. On average, a woman with a BRCA1 or BRCA2 gene mutation has up to a seven in 10 chance of getting breast cancer by age 80.<p><p>Because her mother died of cancer Lisa’s doctor advocated with her insurance company to allow her to undergo genetic testing, and she was identified as having the <a href="BRCA2 gene">BRCA2 gene</a> when she was 36 years old. She was put ‘under surveillance’ – regular mammography, MRI and ultrasound screenings. She says, “knowing that it’s a part of your DNA, it was always in the back of my mind”.</p><p>
A gene on chromosome 13 that normally helps to suppress cell growth. A person who inherits certain mutations in a BRCA2 gene has a higher risk of getting breast, ovarian, prostate, and other types of cancer.
<p>Lisa was 51 when she was diagnosed with <a href="DCISMI">DCISMI</a> stage one breast cancer.</p>
DCISMI means that a few of the cancer cells have started to break through the wall of the duct. DCIS-MI is stage I breast cancer.
She was also diagnosed with SLE lupus at the same time, complicating treatment options. Lisa had a partial <a href="mastectomy, a lumpectomy">mastectomy, a lumpectomy</a>, and a bilateral reduction. The cancer had not spread to her lymph nodes, and because her SLE lupus was not under control and could be complicated by chemo, her team decided not to pursue that or radiation. “There’s also such a thing as over-treatment. Even though I do have the gene, it’s not necessary to bring out all the heavy artillery first,” considers Lisa. She remains ‘under surveillance’, having regular screenings and scans. Lisa has been cancer-free for five years.
Mastectomy – Mastectomy is the removal of the whole breast. There are five different types of mastectomy: "simple" or "total" mastectomy, modified radical mastectomy, radical mastectomy, partial mastectomy, and subcutaneous (nipple-sparing) mastectomy. Radical mastectomy is the most extensive type.

Lumpectomy – A surgical operation in which a lump is removed from the breast, typically when cancer is present but has not spread.

<p>As far as regular screening for breast cancer is concerned, Lisa B. Jones has been the exception rather than the rule among African American women in the US. Jones tells us “more white women get diagnosed with breast cancer, more black women die from it“. The number one factor seems to be insurance coverage with only 39 percent of uninsured women having regular screenings for the disease. A recent study published by the <a href="https://www.komen.org/breast-cancer/screening/screening-disparities/" target="_blank">Susan G. Komen Foundation</a> states that 74 percent of African American women with health insurance go for screening; slightly more than the 73 percent of white women with insurance.</p>
While economics is a factor, Lisa believes that there is more to it, stating that, “White women go [to a doctor] as soon as they notice something wrong. Black women will not do that because it’s always something or somebody else they are taking care of.” The result is that African American women are often diagnosed at later stages. “When black women go in to doctors, sometimes we’re just not feeling heard or seen,” Lisa continues, “I think there is a certain standardization of medicine that needs to be reformed. There’s still over 50% of medical students think that there’s a difference in terms of pain between black patients and white patients. When you hear that it makes you advocate harder, but it also makes you advocate smarter, too.”
Lisa also does work with the <a href="https://www.stopbreastcancer.org" target="_blank">National Breast Cancer Coalition<sup>2</sup></a><sup></sup> lobbying to pass the H.R.2178 <a href="Metastatic Breast Cancer" data-ste-link-id="2386058324.on/cp-text-image-f6b99fb1:2390989094.Metastatic Breast Cancer:1034262630">Metastatic Breast Cancer</a> Access to Care Act, which provides exemptions to waiting periods for disability and Medicare qualification for women with breast cancer. Jones sees this as a failing of the healthcare system when “the average life expectancy for a metastatic breast cancer diagnosis is 36 months, give or take, and the average wait times for disability and Medicare are six months and two years, respectively”.
A bill pending a vote in the US House of Representatives that would, “amend title II of the Social Security Act to eliminate the waiting periods for disability insurance benefits and Medicare coverage for individuals with metastatic breast cancer, and for other purposes”.
The image shows a graph indicating that prior to the 2019 COVID-19 pandemic, 37 percent of breast cancer diagnoses were associated with symptomatic disease. Tumor sizes classified as T1c or larger were seen in 64 percent of diagnosed breast cancer cases. During the same period in 2020, 78 percent of breast cancer diagnoses were associated with symptomatic disease and 78 percent of diagnosed breast cancer cases were found to have tumor sizes classified T1c or greater.
SHARE<sup>1</sup> Cancer Support is a national nonprofit founded and run by women cancer survivors that supports, educates, and empowers women affected by the disease, with a special focus on medically underserved communities. They have programs for African American and Latina women, and even one for Japanese women because a cancer survivor saw the need and became an ambassador. <p><p>Although Lisa was the person they hired to do their first healthy cooking demo years before, it wasn’t until her diagnosis that she became committed to the organization. That day, Co-Director of Latina SHARE<sup>1</sup>, Jennie Santiago, invited her to their office in the same hospital where she counseled Lisa and encouraged her to be a part of the SHARE<sup>1</sup> community once her health became stabilized. Months later, Lisa was speaking at various events and attended support groups for African American women where she felt a level support and comfort.</p><p></p>
<p>Lisa says she had a major shift in priorities and conviction after her diagnosis, which gave her “a lot of perspective working with other women with breast cancer”. It was a natural extension of her career to become a SHARE<sup>1</sup> ambassador, advocating for and teaching other women how to advocate for themselves. During her three years with the organization she has worked one-on-one with an average of 200 women per year. </p>
She believes the most important thing women can do for themselves is to care about their own health: early scanning, early detection, and early treatment.
Lisa B. Jones sits in an office and talks about the time she had breast cancer.
<p>Literally hundreds of thousands of women have been helped by the SHARE<sup>1</sup> Cancer Organization since the first dozen members started advocating in 1976. Shorter emphasizes the need for organizations like SHARE<sup>1</sup>, “for our women to get the holistic picture, not only the medical care”. He believes that the organization and Lisa, in particular, have been beneficial partners in Ryan Health’s community outreach efforts. I agree that Harlem is lucky to have the commitment of both Lisa and Shorter working together to bring care to the neighborhood. “When you’re dealing with women with cancer, it’s a matter of all hands on deck,” says Lisa. ”I’m very grateful for the type of relationship that I have with organizations like Ryan Health. My partnership with Mr. Shorter allows me the freedom to help my community in a tangible and meaningful way.</p>

By Leane Clifton
Leane Clifton is a New York based TV producer, journalist, and documentary filmmaker, with a focus on society, health and technology.