Comprehensive breast cancer support beyond the city lights
As a woman living with metastatic breast cancer since 2018, I recently listened with great interest to a podcast about a health center which provides broad-based supportive care for women with metastatic breast cancer. Women come in for a day-long evaluation session involving oncologists, counselors, physical therapists, nutritionists, social workers, and others with a comprehensive treatment plan as the goal. It sounded wonderful. The hitch? It was located in a big city.
I live in Wyoming, the ninth largest state geographically, but the least populous of any state in the United States, well under 600,000 people. Five generations of my family have hung around Wyoming, and except for college and graduate school, I have lived here all my life. Rural health care is pretty much all I have known. I was originally diagnosed with stage III invasive lobular carcinoma (HR positive, HER2-negative) in 2010 with the usual treatment regime of surgery, chemotherapy, and radiation. I did well on tamoxifen until 2018 when multiple bone metastases, now triple-negative, were discovered. I continued to work in a demanding job until 2020 when I retired. I have received a variety of treatments, including being ahead of the curve on trastuzumab deruxtecan (Enhertu), which was quite successful until just recently, and I am now in the process of transitioning to hospice.
So, how could I get integrated comprehensive care? Wyoming is so much a part of my identity and the thought of leaving the taproot the sustains me would significantly impact my quality of life. I delight and gain strength from walking the streets my great grandfather walked and never tire of the view of the mountains to the west. A recent study published in JCO Oncology Practice summarizes the disparities for people in rural areas succinctly, “Patients in rural areas face limited access to medical and oncology providers, long travel times, and low recruitment to clinical trials, all of which affect quality of care and health outcomes. Rural counties also have high rates of cancer-related mortality and other negative treatment outcomes.”
On second thought, I realized that despite living in a rural area without the range of specialties and healthcare professions common in bigger cities, I have a remarkably comprehensive care team. My primary medical oncologist, who specializes in breast cancer, is about 60 miles away in another state. I see her several times a year in person, but more often by telehealth which is a blessing. She has coordinated my care with our more modest cancer center in my hometown, so any injections, infusions, imaging, blood work, and other monitoring is all managed locally through the cancer center and the hospital. When needed, I get care from a radiation oncologist who travels to my hometown one day a week. Our hospital’s rehabilitation center has an oncology-experienced physical therapist who has been a vital ally in addressing mobility and exercise issues. A local counselor, chosen for her cancer care background, provides invaluable support one to two times a month. Connecting with fellow metastatic breast cancer women in my community, organized by the local cancer center, offers a sense of camaraderie. The community pharmacy provides timely access to the medications I need. Taking advantage of support services in Colorado, where my oncologist practices, I’ve tapped into palliative care, nutrition assistance, and integrated care services. I have even been able to see an acupuncturist with the help of the counselor.
It’s not perfect, although no system is. However, electronic health records (EHR) foster communication and coordination across disciplines and can partially compensate for the geographic separation of the care team. Assuming compatibility of EHR systems, I can track my appointments, treatment plan, lab work, and scans through the patient portal.
How did this happen? To a certain extent, luck! I have an oncologist who is open to this model of care. Importantly, our local cancer center also embraced this model. The integration of healthcare systems across communities and settings has also helped. Consequently, the oncologist, the staff at our hospital, and I have been able to coordinate those services so that I can get state-of-the-art cancer care at home. Without a doubt, we need more health systems, including cancer clinics, to develop comprehensive rural outreach programs.
At an individual level, setting up a care team can be challenging, and it is important to note: I am fully insured, and I have a background in the local healthcare system as a nurse. Here are tips that may help others with cancer, especially metastatic cancer, develop a healthcare team that provides the support they need in more isolated regions:
- Ask and ask again. What is possible given the unique nature of your healthcare system? Your family situation? Your needs?
- Engage your friends, family, and others in the community, such as support groups. What resources do they know about in your area? What’s worked for others?
- Connect with a nurse navigator, patient navigator, or social worker wherever you can. They can be a wealth of knowledge.
- Communicate, communicate, communicate: Prioritize consistent communication across healthcare settings and involve family on an ongoing basis. Involve your family in this as much as possible.
- Use the patient portal to track information and communication.
- Embrace telehealth opportunities. Advocate for clinics that have clinicians licensed across state lines to increase access.
- Finally, be flexible. It won’t be perfect, but it can be extremely beneficial to you and your family.
While rural comprehensive care presents challenges, resources, community engagement, and adaptable strategies can bridge the gap, fostering better care for all.
The views and opinions of our bloggers represent the views and opinions of the bloggers alone and not those of Living Beyond Breast Cancer. Also understand that Living Beyond Breast Cancer does not medically review any information or content contained on, or distributed through, its blog and therefore does not endorse the accuracy or reliability of any such information or content. Through our blog, we merely seek to give individuals creative freedom to tell their stories. It is not a substitute for professional counseling or medical advice.
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