Letter to the Editor: Gateway to Hope is an oasis in Missouri’s healthcare desert

In the summer of 2020, I was watching my daughter play and holding my newborn son when I got the call that a recent biopsy I had undergone came back positive. I was a 28-year-old mom of two who had officially been diagnosed with breast cancer.

It was the biggest moment of terror I’ve ever felt. 

After more than a month of labs, appointments and scans, I learned the cancer had spread to my liver, meaning not only did I have breast cancer, but it was Stage 4 metastatic breast cancer. My doctors gave me hope and treated me with curative intent, but a quick Google search will tell you that Stage 4 breast cancer is considered treatable but terminal. 

I immediately began a long treatment plan that included five months of chemo, a double mastectomy, a hysterectomy, maintenance oral chemo, and a long recovery from the damage all of these life-saving treatments have done to my body.

As an added stressor, I live in rural Missouri, a healthcare desert with no specialty healthcare facilities. I had used most of my FMLA (Family and Medical Leave Act) time for unpaid maternity leave, so when I went back to work and immediately started chemo treatments, I used up the little sick time I was accumulating right away. Not only did I have to go to hours-long appointments at the hospital for labs, doctor visits and chemo, but I also was driving 90 miles each way back and forth to Columbia for every appointment. 

After chemo was complete, I had multiple surgeries requiring long leaves from work for surgery and recovery. My employer was incredibly supportive and helpful, but it was hard on my family to go more than six months without a full paycheck from my work.

I had to find a way to make the finances work for our family while I recovered. Thankfully, I was connected to an amazing organization called Gateway to Hope, a Missouri-based lifeline for women who need any kind of breast cancer help, from prevention and early detection to diagnosis and financial support. I applied to the program and received financial assistance immediately, then received it again as I went through routine treatment.  

Gateway to Hope also provided a navigator to check in with me, not just about my treatment and diagnosis but about me, how my family was doing and how I was feeling. There wasn’t any pressure to engage, but they did answer my questions and ease my anxieties anytime something new came up. I still, to this day, have check-ins with my social worker over the phone. 

I was on the fence about continuing to apply for services through Gateway to Hope, even though I can get lifetime services as someone with Stage 4 breast cancer. I worried that I was taking time and resources away from others. Then my doctor recommended seeking a second opinion so I could confidently make treatment decisions, which again required taking time off from work, driving the long distance to the doctor and paying an out-of-network copay. 

I was again stressed. My Gateway to Hope navigator just happened to check in then and reassured me that Gateway to Hope was there to ease my stress about how I was going to get the care that I needed while keeping our finances under control. 

That’s why Gateway to Hope exists.

I continue to apply for services to speak with experts, even if I do not use the financial assistance, because their expertise is just as important. Recently, my healthcare desert became even more desolate when my insurance provider went out of network with the healthcare facility where I have been treated for almost five years. 

I quickly called Gateway to Hope for recommendations, advice on how to go about switching healthcare providers, and how to handle the worry this caused me. It is going to be about 190 miles to my new healthcare provider, which brings a lot more stress, but I know I have a lot of people cheering for me in my corner. 

July will be five years since my diagnosis, and I am proud to share I am doing well, thanks to an incredible team of doctors, new technologies in medicine, and social support like that from Gateway to Hope. I’ve gotten to see so many of my kids’ milestones that I feared I wouldn’t, back on that first day I got the call with my diagnosis. I am forever grateful. 

I never got the chance for early screening and early prevention, but I have loved connecting women in my community to Gateway to Hope so they can get screened. I would encourage anyone, old or young, to reach out to Gateway to Hope and do the same. They do not just have services for women with breast cancer. They also help women get screenings. 

In rural Missouri, throughout the state, navigating screening appointments, transportation and logistics can be hard. Gateway to Hope will make it easier for you. Early screenings save lives, and Gateway to Hope is a homegrown organization helping women in Missouri get access to these necessary services. You can fill out their form for more information on how they can help at mobreasthealth.org.  

Erin Main
Linn County, Missouri