Navigating healthcare and financial hurdles in breast cancer treatment

When she lost her grandmother to metastatic breast cancer, Shiloh was 16. Having been a volunteer, she started her first paid job in a hospital, working her way up from a floor care and housekeeping team member to eventually become a registered nurse, specializing in interventional procedures like cardiac catheterizations and interventional radiology. As such, she had a deep understanding of processes like port placements and diagnostic testing.

Then, in February 2023, Shiloh found herself on the other side of the healthcare system as a patient. During a travel assignment in Louisiana, she discovered a lump in her breast during a self-exam. Shiloh immediately reached out to a doctor she worked with, and he quickly arranged for diagnostic tests at Tansey Breast Cancer Center in New Orleans, Louisiana. The diagnosis was invasive ductal carcinoma, a swift-moving form of breast cancer. “It was surreal,” Shiloh recalls. “I had always been the one providing care, and suddenly, I was the one in need of it.”

Shiloh lives in Manatee County, Florida. She is married and has a young daughter still living at home with her, which was another layer of motivation to her journey. “Knowing that my daughter needs me to be strong keeps me going, even on the toughest days,” she says.

Challenges and self-advocacy

As a nurse, Shiloh had a unique perspective on patient care. Yet, she discovered stark inconsistencies in the system. Though short staffing is a nationwide problem, in Manatee County, there are almost 400,000 people, almost 30% of whom are over 65 years; and more than 20% of the population is employed in healthcare. Shiloh faced significant delays in scheduling essential tests and procedures due to short staffing issues and miscommunication from one treatment member to another. Her chemotherapy was almost delayed by several months because her healthcare team in Florida didn’t have the results of her biopsy which she had completed in Louisiana. “Each delay felt like a lifetime,” she says. “I knew how crucial timely intervention was, and every postponement added to my anxiety.” Shiloh reached back out to the team in Louisiana who worked her into their schedules. After much travel and weeks of delay, the biopsy was complete. She went back to Florida determined to start treatment.

Despite being fortunate to have good insurance coverage through her spouse’s federal benefits, the inefficiencies and lack of coordination among healthcare providers presented real barriers to her timely treatment . One experience involved a technician at a local clinic who placed a blood pressure cuff over Shiloh’s chemotherapy port, which was placed on her arm. This could have caused excruciating pain and potential harm, had she not stopped the technician from proceeding. Shiloh's intimate knowledge of medical protocols empowered her to advocate for herself, leading her to transfer her care to a more reliable facility. Fortunately, she already knew an oncologist she trusted in Florida. She was able to transfer her care with results now in hand and begin her chemotherapy. Shiloh recognizes, "If someone with my knowledge of the system and connections for patient referrals, could face such issues, what about those who don’t have the same resources or understand how to connect with them?”

Financial strain

The physical toll of chemotherapy eventually forced Shiloh to stop working in 2023. With the port on her left arm, she could not lift heavy items, yet most of her patients were over 150 pounds . She was unable to move patients from a stretcher over to the procedures table or push them on stretchers. Shiloh already had an elevated risk of infections because of abnormal blood levels, but with her blood counts further affected by chemotherapy, she repeatedly had upper respiratory infections despite wearing surgical masks to protect herself. The neuropathy in her fingers made it difficult for her to open medications and she could no longer reach above to IV poles to hang medications or bend below the procedural tables. She understood it was unfair to her coworkers and especially her patients, “How am I taking care of my patients if I don't have the ability to do it all the way all the time?”

The loss of work plunged her into financial uncertainty. Without her paycheck how would her family meet basic financial needs? Shiloh found that the copays for medicine and tests became a struggle as she balanced her mortgage and car payments. She struggled to cover basic expenses. She applied for social security, believing she would qualify given her situation. However, her caseworker told her that she was “young and educated”, and she could find other types of work. Despite medical documentation of multiple surgeries (some with complications), her neuropathy, increased risk of infections, and no-lift restrictions, Shiloh was denied reconsideration when she appealed. At this point, it had been twelve months since she had started treatment and finances were bleak.

Support networks and LBBC’s financial fund

Shiloh is grateful that her family provided strong support for her in innumerable ways, including financial and emotional assistance. She also cut out any expenses she could, such as her daughter’s afterschool care and a storage unit rental, so that she could concentrate on the priorities.

Her self-advocacy has led her to seek support from various organizations, only to discover that for many assistance programs, she couldn’t qualify because she owned her home or she was either too young or too old. Nurses House and Living Beyond Breast Cancer (LBBC) were vital resources, providing the much-needed financial assistance that helped Shiloh with some expenses during her treatment. The support allowed her to afford essentials such as a mortgage payment from the Nurses House grant and a car payment with the help of LBBC, which were otherwise out of reach due to her reduced income. She could then concentrate on paying for other expenses, such as groceries, as she applied for additional sources of assistance. Of LBBC, she says, “LBBC was a lifeline. It was one of few assistance grants I could meet eligibility for. Their support made a world of difference during a time when every dollar counted."

Hopes for the future and business ideas

Looking ahead, Shiloh envisions using her experiences to educate and support others in similar situations. She is considering creating her own business focused on healthcare education and advocacy. Inspired by the gaps she identified in patient care, Shiloh aims to develop workshops and resources for patients and continued training for healthcare professionals to better understand how to keep the patient as the priority. “Their lives depend on us doing better regardless of staffing or other issues within our employment.” Her business idea includes offering teaching seminars centering on patient advocacy in healthcare settings, as well as services that will help healthcare facilities improve their patient care protocols. “I want to be a voice for those who feel their voices are not being heard,” Shiloh explains. “Everyone deserves to be heard and treated with dignity.”

One specific idea she is passionate about is creating a platform that connects patients with financial resources and support networks. This idea was born out of her own struggle to find and access the assistance she needed during her treatment. By leveraging her knowledge and experience, Shiloh hopes to make the journey easier for others facing similar challenges. “I’ve been there. It can be a dark place,” she says. “If I can light the way for someone else, then all of this will have been worth it.”