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Breast cancer survivors talk about self-advocacy, early detection | The Homepage
- jmartinez5135
- Oct 1
- 10 min read
By Juliet Martinez, managing editor
What do a mother of four, a rugby-playing social worker and a disability advocate have in common? They are all breast cancer survivors.
October is Breast Cancer Awareness month, so The Homepage spoke with breast cancer survivors in Hazelwood. They are at different stages of life and degrees of illness, but they all want people to know more about breast cancer, the importance of early detection and how vital it is to stick up for yourself in medical settings.
Kiyomi Knox is a 37-year-old social worker at Center of Life. She has worked there for almost seven years. That is where she met DaVonne Fuller-Forbes, a 38-year-old mother of four children ranging from 1 to 14 years old, and Andrea Coleman-Betts, a 69-year-old disability activist and retired teacher.
Ms. Knox discovered earlier this year that she has breast cancer. Ms. Fuller and Ms. Coleman-Betts have breast cancer, too.
Ms. Coleman-Betts first discovered she had breast cancer through a routine mammogram in 2010. She had the tumor surgically removed, followed by 90 days of radiation and oral chemotherapy for three years. She stopped chemo in 2013 or 2014 thinking the odds of recurrence were low. But last January she had her routine mammogram and found out her cancer had returned.
“I started off before the invasive diagnosis saying I was ‘cruising with cancer,’ but the cruise ship stopped when they said it was invasive,” she said during a Sept. 16 phone call.
This time, she opted to have both breasts removed. Based on the pathology report from that surgery, she was diagnosed with invasive breast cancer. She is now taking another five-year course of oral chemo.
Ms. Fuller-Forbes had pain in her breasts throughout her 30s, but her doctors at UPMC dismissed her concerns, blaming her discomfort on stress or her hormonal cycle. Last year, when she was pregnant with her fourth child and receiving prenatal care at Allegheny Health Network, doctors took her seriously. At 37 years old, she was too young for routine mammograms, but her doctor agreed she needed one. Within days of her first mammogram, she had a diagnosis of breast cancer that had spread throughout her body. Within a week, she gave birth by cesarean section to her son, who was just barely at full term, her ovaries were removed, causing her to enter menopause, and she started radiation treatments.
Ms. Knox watched Ms. Fuller-Forbes go through this process, so when she had breast pain last year, she pushed her doctor about getting a mammogram even after they assured her it was likely nothing. She was also too young for routine mammograms, but after she insisted on the test, her gynecologist agreed to order one. That is how she found out about the cancerous cells growing in her breast.
It was at a pre-invasive stage; there is debate in the medical and survivor community on how to treat it, if at all, versus waiting to see if it spreads. It was ultimately up to Ms. Knox whether to follow the standard treatment of lumpectomy and radiation or wait it out. Her radiation oncologist said that it could take eight years from onset for it to become invasive and that it looked as though it was at the halfway mark. Ms. Knox was 36; she said in a Sept. 4 phone call if she had waited until age 40 to get a routine mammogram, the cancer would have likely spread throughout her body by then. Instead, she decided to have surgery and 19 radiation treatments. In a few months, she will take steps to preserve her eggs in case she wants to have children in the future and begin a five-year course of hormone blockers, forcing her into premature menopause.
Don’t put it off
Ms. Knox wants everyone to know breast cancer can affect them.
“I truthfully was never really worried about it since it isn’t in my family, but here we are,” she wrote in a Sept. 17 email.
She focuses on silver linings to stay positive in the face of a difficult diagnosis. One of those silver linings is that her cancer was detected before it spread. This meant she could wait until the end of the school year to have surgery. It means she can play a final season of rugby before going through freezing her eggs and starting her five-year course of hormone blockers.
“Everything I’m going through is best-case scenario,” she said. “And it definitely could look very different.”
Cancer screenings are tests that can detect disease in its earliest stages. Early detection can mean treating cancers before they have a chance to spread throughout the body.
The American Cancer Society recommends that people at risk of breast cancer be given the option of getting a mammogram starting at age 40. Between the ages of 45 and 55, yearly mammograms are recommended. At age 55, people can switch to every other year if they wish or continue getting mammograms every year. This should continue as long as they are in good health and expected to live at least 10 more years.
Ms. Coleman-Betts warns against putting off breast cancer screenings.
“People don’t want to think that, you know, it could make a difference,” she said. “[They think,] ‘Well, I’ll skip a couple years, and I’ll go next year,’ but every year you need to go.”
She hopes people reading this article will hear that message and get checked.
“Like they say, if I could save or help one person along the way, then my living will not be in vain,” she said.
The American Cancer Society recommends that people with breast tissue make themselves familiar with the normal appearance and texture of their breasts so they can report any changes to their doctor. To create an individualized cancer screening plan that takes into account your family history and other factors, talk to your doctor.
Self-advocacy
Ms. Knox said she had to push just to get her diagnosis.
“My experience would have been very very different if I had not pushed and gotten that sooner,” she said.
She urged anyone facing a difficult diagnosis to remember that they can change medical providers to find one they feel comfortable with.
Getting a breast cancer diagnosis is a life-altering event that demands a lot from patients. Ms. Coleman-Betts reflected that when her cancer came back, she had to become more assertive.
“The second time, I started advocating,” she said. “I had to go and take notes, write everything down and ask how to spell things, ask them, ‘Why am I taking this? Why am I taking that?’”
In addition to breast cancer, Ms. Coleman-Betts has lupus, an autoimmune disease. Since 2016, she has also become a full-time wheelchair user. She said not everyone understands the challenges she lives with, and sometimes medical personnel have treated her like she is exaggerating. She has to counter those messages to keep working to get her needs met.
“I have to keep telling myself, ‘It’s me trying to survive, not trying to attract attention.’ I’m in survival mode,” she said.
Ms. Fuller-Forbes said during a Sept. 12 phone call that Black women frequently face these attitudes in medical settings.
“As a Black woman, we often back down in the medical field,” she said. “We are demonized, we are looked at like we’re shiftless, out of work, or we choose not to work, or we’re trying to look for pain medication, or we’re trying to get sympathy just to get sympathy.”
So having as much support as possible is essential. She recommends taking a friend, relative or partner to appointments, no matter how minor.
“Don’t go to these appointments by yourself,” she said, “Especially if there’s something concerning you, because there’s strength in numbers.”
“Be bold in it. They work for you! You don’t work for them; they work for you. If you need a second opinion, get one,” she said.
As a social worker, Ms. Knox is in a position to help others who need backup at medical appointments. Anyone who needs this kind of support can contact her at Center of Life and a member of her team will go with them. She also encourages anyone with breast cancer to connect with other local resources like the ones listed at the end of this article.
How to support a survivor
“I know October comes every year, and they begin: All the Steelers will start wearing pink, and there’ll be some overkill on pink, pink, pink,” Ms. Coleman-Betts said. But breast cancer is an everyday reality for those living with it.
Ms. Fuller-Forbes said the best approach is to be kind to everyone. Some days she looks fine but doesn’t feel well. It is not always possible to tell from looking at her, so kindness from others is appreciated.
“I want people to be as kind as possible, because what you say could take someone over the edge. What you do could take someone over the edge,” she said. “So, us being kind to one another is the best, the easiest way to get through the day.”
But unsolicited advice, even if well intended, can be hard to hear when she is working every day to live with the pain her cancer causes, keep up with her medical care and raise her children.
“Let the person that has the disease come to you when it comes to giving advice of their care,” she said. “If I tell you I’m in pain, and you say, ‘All you got to do is ...’ Just listen. I didn’t ask you to tell me what to do about the pain, I just need you to know that I’m in pain today.”
Ms. Knox said it is OK to just ask people how they’re doing and about their treatment.
“I think people have a certain image in their head when they hear someone has breast cancer, but treatments affect people all differently,” Ms. Knox wrote in a Sept. 17 email. For example, she and many others take long-term treatments that affect their lives and health for a long time.
Ms. Coleman-Betts also said she wishes everyone would talk openly about cancer.
“I don’t even expect you to understand, just have some compassion,” she said.
But it’s also important not to take life too seriously.
“Laugh, cry, find as much humor as you can in everything,” she said. “I say, ‘I got a chest looking like an ironing board. I don’t need an ironing board anymore. I just iron on my chest.’”
A concrete way you can help a breast cancer survivor in Hazelwood is to attend the spaghetti dinner that Ms. Knox is organizing to benefit Ms. Fuller-Forbes on Oct. 17 at the Spartan Center from 5:30 to 8 p.m.
JADA House International is also hosting a Lunch and Learn event focused on breast cancer on Oct. 3. See the Events section on Page 14 for details.
Sidebar: Dana’s cancer story
By Kiyomi Knox
Dana Warren is a Hazelwood resident, member of St. John the Evangelist Baptist Church and a licensed clinical social worker. At 48, she is also a two-time breast cancer survivor. She was first diagnosed in 2016 and, after undergoing surgery and radiation, had been cancer-free until a routine breast MRI in December of 2023 showed a suspicious mass. This led to being diagnosed with a more aggressive form of breast cancer in January 2024.
Faith kept Ms. Warren moving forward. She wrote the news of her recurrence on her CaringBridge blog on March 19, 2024.
“My initial thought was, ‘Well Happy New Year to me, what a way to start 2024.’ And then quickly after I felt gratitude for having breath in my body, another day of life and the faith to know we beat it before, and we’ll beat it again!”
She described having to wait for her results on whether she would need chemo or not, something different from her last journey.
“There is something about the wait, the stillness, the unknown that is very unsettling,” she wrote. “If you allow it, the quietness gets too loud.”
As she waited, she leaned on her relationship with God to help bring her peace and confidence.
Ms. Warren had to decide whether she wanted to do chemo or not, as it was based on the results of her oncotype score. This test shows the risk of cancer recurrence and the potential benefit of using chemotherapy alongside hormone therapy. Anything over 25 shows a higher risk that breast cancer could come back and spread without the additional treatment of chemo.
Her score was 30. She felt she was at a crossroads of whether or not to put her body through the treatment. She described her support systems as they surrounded her during not only appointments and decision-making but through the entire process, offering her words of encouragement, space to be heard and even offering to shave their heads along with her.
Ms. Warren ultimately decided to pursue the treatment, which consisted of four rounds of chemotherapy. Following chemo, she completed 20 rounds of radiation and is continuing her treatment with hormone therapy. She ended her CaringBridge blog in December with a reference to Ecclesiastes, writing, “Cheers to closing out the year, the lessons, the love, the ups, the downs. To everything there is a time, to everything there is a season. This is our season of restoration.”
Breast cancer resources
• 412 Thrive helps those affected by breast cancer and genetic mutations that lead to cancer through online and in-person support, monthly gatherings, educational workshops and more. Visit 412thrive.org.
• Allegheny Health Network free cancer screenings based on eligibility. Visit ahn.org/lp/comprehensive-cancer-screening-clinic.
• Cancer Bridges offers support to cancer survivors through a variety of free programs and services. Visit cancerbridges.org.
• Lending Hearts creates a caring community for children and young adults living with cancer, offering support and connection for them and their families. Visit lendinghearts.org.
• Pennsylvania Breast Cancer Coalition helps patients navigate insurance, get free mammograms and information on free breast cancer treatment. Visit pabreastcancer.org/resources.
• St. Clair Hospital Cancer Resources offers medical care, support groups, and also occasionally offer free mammograms for those 40 and over who are underinsured. Visit stclair.org/services/az-listing/breast-care-center/breast-cancer-support-group.
• Steel City Dragons is Pittsburgh’s premier dragon boat organization. It includes Pink Steel breast cancer paddlers and Pittsburgh Unity all-cancer paddlers. Visit steelcitydragons.org/pinksteel.
• Susan G. Komen Foundation in Pennsylvania offers survivors and supporters opportunities to fundraise for breast cancer research. Visit komen.org/community/pennsylvania.
• Wigs ’n More, Inc. & Mastectomy Boutique in Latrobe offers wigs, mastectomy products, lumpectomy prosthetics, women’s bathing suits and more. Visit wigsnmore.net.
• Young Women’s Breast Cancer Awareness Foundation educates and builds awareness about breast cancer in younger women. Visit ywbcaf.org.
Kiyomi Knox conducted one of the interviews with Andrea Coleman-Betts for this article.