10/7/2020 by Share Your Story

What Does Not Kill You Makes You An Advocate

Carol had breast cancer; not once but twice. A cancer diagnosis changes a person. For Carol, it led her towards advocacy and community.


The familiar narrative for treatment of a cancer diagnosis is that the process can be physically, emotionally, and financially draining. While Carol admits that having cancer wasn’t the highest point in her life, I was taken aback when she told me, “Having cancer wasn’t the worst thing. It made me more humble. It made me appreciate all the things I took for granted.”

Carol the fighter

Carol is a two-time survivor of breast cancer, once in 2014, and then again in 2018. Like other women and especially black women, she was dismissed by her primary care provider after asking for a mammogram at her annual physical. Though she had a family history of breast cancer, she was only 47 years old, and the doctor believed that the procedure was unnecessary.

Just two weeks later, Carol felt a small lump in her armpit. A trip to urgent care and an ultrasound revealed a mass of tissue, proven to stage II breast cancer through a biopsy.

“When your body talks to you, you have to listen to it. I knew it was more than a little bump.”

A Life Disrupted

Carol was working two part-time jobs, attending college. She was also a single mother of four with two young boys still at home. Carol had Medicaid but was concerned it would expose her to lower quality care. She had previous experiences of discrimination in suburban healthcare clinics. Whether it was her race, her gender, or her insurance status, Carol refused to be treated poorly by the medical industry. With a cancer diagnosis, she couldn’t afford to be.

team carol

At her first treatment visit in the Mile Square Clinic in Englewood, Carol had low expectations. A community on the southwest side of Chicago, Englewood is often represented as an area with limited opportunity. Mile Square is a Federally Qualified Health Center and receives support from the federal government to provide exceptional quality of care to low-income community members.

“When I was on public insurance, all I could think about was what quality of care I would to receive. Whether or not they would treat me differently because I couldn’t afford it.”

Surprisingly High Quality Care

Carol received exceptional care the moment she walked through the doors. Met on the arm by a patient navigator, she still remembers her words, “We are going to do this together – I am going to be there for you every step of the way.”

Her care team was optimistic. Carol had been proactive and followed the signs her body had given, which would allow for a full recovery from treatment. Most important to Carol, her entire team, especially her surgeon, deeply respected the shared decision-making power between a patient and a doctor. While the doctors had the medical expertise, Carol was given agency to decide the treatment plan that made the most sense to her. She eventually decided to go with two lumpectomies to remove the cancerous tissue.

“They were able to care for me and teach me at the same time… They genuinely cared, and they treated me like I was their own family.”

Another Cancer Diagnosis: The Rematch

Four years later, Carol found herself back at Mile Square with another cancer diagnosis: a lump in the opposite breast. The same patient navigator that had walk the walk with her the first time around came to her exam room after hearing the news. She hugged her and followed the embrace with “Carol, we beat it once, and we’re going to beat it again.”

team carol 2

Beat it, they did, and after rounds of radiation and chemotherapy, Carol is now another full year cancer-free. Carol, having graduated with her degree in Business Management and obtaining a full-time job, was now enrolled in a private health insurance plan. During both treatments with different insurance types, Carol never noticed a difference in the level of individualization and compassion of her care team.

“Most of the time I came to Mile Square, I left laughing. And I think that was imperative to my survival at the end.”

Carol Came Through Stronger

It’s not unusual for cancer survivors to suggest that their diagnosis changed their outlook on life. It’s an experience that drives people to appreciate the moments between the chaos of appointments and treatment. In Carol’s words, her success of today was directly due to the members of her care team taking time to listen, understand her as a person, and treat her, not just as a cancer diagnosis, and not just with medicine, but also with respect.


Kate PecoraKate Pecora is a graduate of the University of Massachusetts Amherst where she studied Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. Kate has Spinal Muscular Atrophy Type III. She is currently (e)traveling across the country in search of the most compelling stories of patient access, affordability, and quality. Ultimately this will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter

From the Editor:

Some additional reading

The financial burden of cancer

Cancer research updates

 


Spread the Word:

You'll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.
The latest about patient advocacy

Join our Email List

Get notified about new stories and resources to empower patients and caregivers.