In this feature, we hear from Fazila Seker, Ph.D. She discusses ways to educate and empower people with a breast cancer diagnosis.
Dr. Seker is the CEO and co-founder of MOLLI Surgical.
When people are faced with a cancer diagnosis, they suddenly find themselves needing to learn a whole new medical vocabulary while simultaneously coping with their own emotions and those of their families.
It can be overwhelming. And for people who are also facing inequitable access to healthcare, these overwhelming challenges are even more pronounced.
What can we do to help move the system along and help create a more equitable and more compassionate healthcare system for people with breast cancer?
To answer this question, I reached out to Dr. Randy Miles, MD, division chief of breast imaging and associate director of research at Denver Health Medical Center, and Maimah Karmo, a breast cancer survivor and founder of the Tigerlily Foundation, an organization dedicated to supporting women through their breast cancer journeys.
I’m grateful to share their insights on how doctors, patients, and industry can work together to educate and empower people diagnosed with breast cancer.
Arming yourself with information before consulting your doctor is important so you can speak up about what you need for your care.
Ideally, physicians view patients as partners in care and work with them. Physicians should be proactive and ready to answer patients’ questions. And patients should arrive with the questions they need answering for a strong starting point.
Karmo and Tigerlily Foundation connect patients with the resources and tools available to help them avoid falling through the cracks in healthcare disparities.
“My work has really been about ensuring that these barriers go away, because I can’t stand for somebody to die because they didn’t know, they didn’t have access to a car, or insurance, or someone to watch their kids, the right and timely information about their healthcare, or some other barrier like trauma or mistrust,” says Karmo.
“That’s why I do what I do. That’s why it’s so important to me to empower patients to know that they have the right to live, and there is help available.”
– Maimah Karmo
Self-advocacy is important, but what’s difficult is knowing how to advocate for yourself. Being your best advocate means being educated about screening, treatment, imaging, and knowing what questions to ask.
For example, both patient and doctor may need to be educated about breast-conserving surgery and localization options.
“The biggest thing to consider is patient need. If there is a large population traveling long distances for their surgery, wire-free localization is a great option because patients are provided more flexibility with their cancer localization procedure,” says Dr. Miles.
Wire-free localization options allow lumpectomy patients to forgo wire placement the morning of their surgery, which often leads to patient anxiety and prolongs the surgical day.
Wire-free localization helps breast cancer patients have a more customizable experience where they can go directly to the surgical suite on the day of surgery rather than starting their day in the radiology department for their localization procedure, which often occurs early in the morning and is associated with long wait times to surgery.
As Dr. Miles says, “decoupling the two experiences is a big factor towards helping patients have a better experience on surgery day — a day most patients look forward to because they’ve sat with their diagnosis for some time, and it’s the day we’re taking the cancer out.”
Resources such as the ANGEL (Advocate Now to Grow, Empower and Lead) Advocacy Program can help.
The Tigerlily Foundation trains women in these areas to embody a warrior mentality of knowing patients’ rights and what to ask for. The organisation provides toolkits patients can take to their doctor on everything from finance to treatment and scheduling.
Tigerlily trains ANGEL Advocates in ongoing rolling cohorts to go out and train others, especially in communities where there are higher death rates for Black women.
In one case, Tigerlily Foundation’s ANGEL Advocacy Team learned that a patient was homeless and living in her car with a child. She was unemployed and had no insurance — she was impacted by almost every conceivable barrier.
Tigerlily helped her apply for support, provided coaching, paid some of her bills, sent food, provided job coaching, and supported her with access to help her navigate barriers in the healthcare system. This is the difference one ANGEL or a team of ANGELS can make for others.
Reducing time to diagnosis
The process from discovery to diagnosis is one of the most difficult parts of the cancer journey. It requires a doctor’s visit, a preliminary scan, a follow-up mammogram, biopsy, and appointments for results.
Going to these screenings can mean lost wages, possibly losing a job, more childcare expenses, as well as logistical concerns to get appointments.
Cutting down the time from screening to diagnosis is hugely important. Dr. Miles is working to shorten this time.
Suspicious mammogram findings are discussed right away, and if there is space available, biopsies are performed the same day.
By focusing on the patient’s experiences, they can receive support in both practical and emotional ways — as we know, waiting for results is a huge source of anxiety, in addition to the stress of managing work and family life around that period.
Karmo’s journey with her own cancer began with a year-long delay to diagnosis. “I had a false-negative screening and was dismissed by the doctor because of my young age and probably my skin color,” she says.
Patients and physicians must work together — a patient needs to feel empowered to ask for what they need, and a physician must be prepared to listen. They should also ask questions with the aim of uncovering barriers to care, such as a lack of reliable transportation, housing, childcare, or paid time off.
There is no room for excuses, whether it’s a barrier in communication due to primary language, socioeconomic circumstances, customs, or culture. Physicians must set their assumptions aside — whether breast cancer literacy, level of education, or socioeconomic status.
The physician’s role is to understand as much as possible, rather than judge, and make sure that the patient feels comfortable and understood.
They must also help educate on all the options available, such as wire-free localization. “One of the biggest things I do in the clinic is to have one-on-one interactions so I can make sure the patient understands their imaging findings and what are the next steps,” explains Dr. Miles.
“It’s about being proactive in identifying the barriers that might prevent your management recommendations from being followed. It’s also about letting them know to reach out to their friends and family members to make sure they’re educated, too.”
— Dr. Miles
If a patient is not receiving this kind of education and involved partnership from their doctor, they should look for another doctor. It’s that important.
One of the initiatives Tigerlily Foundation spearheads is the combination of two summits: Know More Disparities and Pull Up A Seat.
In Know More Disparities, Black women — patients and physicians — are invited to talk about their experiences and the specific barriers they face, whether through literacy, racism, provider bias, and more.
Allies are invited to listen, but not to speak. A week or two following the Know More Disparities summit, the second half, Pull Up A Seat, takes place. Allies, such as healthcare providers, policymakers, congressional aides, and clinical research organizations meet for a panel discussion that addresses the barriers raised in the Know More Disparities session.
From this discussion, barrier toolkits are created and shipped to ANGEL Advocates across the country so that they can help teach how to ask about and get support to resolve the barriers patients face.
Tigerlily Foundation also promotes its #InclusionPledge. The #InclusionPledge gives individuals and organizations a chance to pledge specific, measurable actions they can take to lower barriers for Black women, especially as the COVID-19 pandemic has exacerbated these challenges.
These barriers are categorized as: psychological, emotional/trauma/mental, literacy, trust, socioeconomic, lifestyle, geographical, communication, and financial.
Social media, especially Twitter, can give patients access to people and resources like never before. They ask questions and receive answers and input from a lot of different perspectives.
Tigerlily hosts regular #TLCTransform Twitter chats (@tlctransform). Others can benefit from these discussions as well as the original poster.
“One group can’t solve this problem. We need a lot of different perspectives. We need to look at the problem of health equity from a lot of different vantage points.”
– Maimah Karmo
“I use my Twitter account to share the latest technology and guidelines, disseminating information to a wide audience and engaging with questions,” says Dr. Miles. “In terms of reaching out to patients, social media is a great tool to widely disseminate evidence-based medicine.”
Social media can help create transformation, recruit patients for studies, share what’s new, and find what you need to know. It’s also a community that’s ready to assist with advocacy and support.
All of us — healthcare professionals, medical manufacturers, and medtech companies — have a role to play in helping patients.
“One way the industry can contribute is to listen to hear, not to talk. Lean in,” says Karmo. “The events of last year have made it OK to talk about these experiences for the first time.”
Industry needs to invest in people of color: programs, breaking barriers, events, advocating, and research. For example, there needs to be more diversity in clinical trials. As pharmaceutical companies work to bring drugs to market, this representation has to be factored in.
“At one point, I took Compazine for my nausea, but it wasn’t working, so I ended up asking for Zofran. Well, my insurance wouldn’t cover the Zofran. My co-pay was almost $1,000 for the Zofran,” recalls Karmo.
“Not long ago, I was on a call, and I mentioned the same story. I had five Black women on the call who said, ‘Same. I had that exact reaction to the medication.’ And it’s possible it wasn’t tested on Black women, so we just wouldn’t have known.”
– Maimah Karmo
Meanwhile, people have to make decisions about going to work while on chemo — nauseated, fatigued, or sick to their stomachs. Better representation in clinical trials can help uncover the best treatments for all patients.
Just as representation matters in research, it also matters in healthcare, particularly among medical professionals. How can we train more people from diverse backgrounds?
Patients are more likely to speak with someone who looks like them and understands their unique medical, cultural, and spiritual needs, but we rarely see Black doctors.
For example, the reality is that involving social workers in Black communities could result in having kids removed from vulnerable patients, so patients don’t expose these vulnerabilities to healthcare partners. But there are things they might reveal to an advocate or Black health practitioner that they won’t tell others.
Bring the community together
The healthcare industry is well-positioned to host, sponsor, or otherwise facilitate events that bring all parts of the breast cancer community together.
“Physicians should try to do conferences and events where we can talk about breast cancer and imaging to have that contact and make that opening for patients to reach out,” says Dr. Miles.
“We’ve got to meet patients where they are and make sure they’re comfortable speaking with physicians and asking questions that are hard or uncomfortable to ask,” he adds.
Virtual and in-person events bring advocates, healthcare professionals, and patients together. Educating people and ensuring health equity requires bringing together multiple views and perspectives — something we try to do on our Facebook Live broadcast called “Breast Practices,” for example.
By working together, listening, and leaning in, we can come together to dismantle systemic barriers and co-create solutions that will result in health equity for Black women and end disparities in our lifetime.