Sara: A Reflection on 20 Years of Rural Breast Cancer CareSeptember 5, 2015
Sara O’Donnell is the founder and executive director of Cancer Resource Centers of Mendocino County. The Cancer Resource Centers provide free services to improve quality of life for residents facing cancer in Mendocino County, California. Here Sara shares her personal story, discusses challenges for women seeking healthcare in rural areas, and the changes she’s seen in her rural community in her 20 years of patient navigation.
My personal experience with breast cancer began when I was first diagnosed in 1990. I was a young mother—I had three boys and no insurance—and lived in rural Mendocino County, off the grid and 25 miles from any town.
I’m a very resourceful person, but I was absolutely lost. I didn’t know anyone that had survived cancer. I was 40 years old, and I was very scared. The only thing locally available was a small American Cancer Society office, which no longer exists. I went in there and was handed a pamphlet with little information that didn’t address my feelings of fear, isolation and ignorance of what I’d been diagnosed with. I knew nothing about what was ahead of me.
I had surgery, a lumpectomy, chemotherapy, and radiation. About halfway through my chemo, I had a personal epiphany that I didn’t want anyone to have to struggle with trying to find information and support like I did. I didn’t know how I would do it, but somehow I would change that for my community.
It pulled on my heart to think about how hard it would be for others.
“I’m a very resourceful person, but I was absolutely lost. I didn’t know anyone that had survived cancer.”
I count my entire county as my community. Mendocino County is over 87,000 people spread over 3,500 square miles in mountainous northwestern California, with residents living in an area that is equal in geographic size to Delaware and Rhode Island combined. It’s very rural, and our largest town has a population of under 16,000.
I had my chemo administered at UCSF in San Francisco, a three and a half hour drive from my home. My husband would stay home with the children and I would have a different friend drive me each time. We’d leave at seven in the morning and get home at seven at night.
I was fortunate to have a very strong bond and open communication with my oncologist. When I joined a support group for people with chronic illness, over and over I’d hear how hard it was to communicate or have a relationship with their doctors, and also about transportation issues to get to treatment. It broke my heart a second time to learn that people didn’t know how to communicate like I was able to or had bad relationships with their physicians. I knew it didn’t have to be like that.
These experiences, along with encouragement from my family and oncologist, fueled the passion and fire in my belly to start the Cancer Resource Centers and help people navigate through the system.
In 1995, we started the organization on 1,300 dollars, and the rest is history. That was twenty years ago this summer.
“I didn’t want anyone to have to struggle with trying to find information and support like I did.”
Limitations to care in rural areas
According to the American College of Obstetricians and Gynecologists: “Rural women experience poorer health outcomes and have less access to health care than urban women. Many rural areas have limited numbers of health care providers, especially women’s health providers.”
Transportation: In rural areas everywhere and definitely here, transportation is a huge issue—and in Mendocino County it has not improved one iota in 20 years. There’s very little public transportation, with just one bus going from the western side to the eastern side of the county once a day.
Services: There is only one radiation treatment center, and one dedicated breast surgeon, to serve two counties (nearly 5,000 square miles). So women coming from the corners of the county are traveling 2-3 hours one way, 5 days a week for several weeks.
Navigation: Where navigation doesn’t exist, patients’ choices are limited for treatment because they don’t know how to overcome barriers like transportation, or they don’t fully understand their diagnoses or treatment options. Part of navigation is overcoming those barriers and giving equal access to quality healthcare.
Specialists: There are fewer cancer specialists in rural areas. This is not to say the doctors are not as good, but if women are looking for choices there just aren’t as many options. We have 2 medical oncologists for 90,000 people, and this year we got our first plastic surgeon, who comes up one day a week. Before that, if a woman chose to have breast reconstruction, she would have to drive at least 90 to 150 miles away, a 3 to 4 hour drive.
Insurance: There is a high Medi-Cal (California’s Medicaid) population, and until four years ago the dedicated breast surgeon did not take their insurance, so a general surgeon that did not do a lot of breast surgery would see all of the low-income women.
Language: Language translation in medical offices is usually conducted by telephone, if at all. The majority of translation needed in Mendocino is in Spanish, and we now have a bilingual, bicultural navigator on staff, which has been very helpful. Mendocino’s population is 23% Hispanic/Latino, meaning a good chunk of our population has limited services available in their native language.
“In rural areas everywhere and definitely here, transportation is a huge issue—and in Mendocino County it has not improved one iota in 20 years.”
Appointment and Survivorship Navigation
Fifteen years ago, we had to convince physicians of our value as navigators, and now they call us as a part of our direct referral system. There are two major time points in a breast cancer patient’s experience where good navigation can make a significant impact, and it’s where CRCMC has lately been focusing its programs.
The first is meeting with clients before going in for a surgery consultation. We work with clients to prepare a list of questions for their doctor and then accompany them to their appointment, audio record it, and take notes. Afterwards, we give them the notes and recording so they can absorb and remember what went on and what the next steps are. This helps keep women from getting lost and really understanding what her options are. It is our signature service, and we call it “decision support,” a strategy developed by Dr. Jeff Belkora at UCSF. I know from my personal experience and through experience with thousands of patients we’ve navigated—you’re in shock and 80% of the appointment just goes whirring past you.
The other piece is survivorship care planning. A survivorship care plan is generally given to a patient and her primary care provider at the end of active treatment. Ideally, the woman will leave with a document for her personal record that states her treatment protocol and then recommendations going forward for surveillance: things to watch for and information for her primary care doctor. From this document, patients can also request recommendations for a healthy lifestyle, psychosocial health and information on chemo brain. When survivorship care plans are implemented and if they are implemented well, they have the potential to be a really big game changer for women.
To learn more about patient navigation, check out the rest of our Heroes in Pink!