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.
Empowering patients
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.
Advocacy
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.
Source: Medical News Today
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