Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

[dssb_sharing_buttons icon_placement=”icon” alignment=”left” use_custom_icon_size=”on” icon_font_size=”16px” icon_bg=”#98002E” alignment_tablet=”left” alignment_phone=”left” alignment_last_edited=”on|tablet” _builder_version=”4.14.7″ _module_preset=”default” background_color=”RGBA(255,255,255,0)” width=”80%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|tablet” max_width=”100%” module_alignment=”center” custom_margin=”0px||||false|false” custom_padding=”0px||0px||true|false” border_radii_icon=”on||||” global_colors_info=”{}”][dssb_sharing_button _builder_version=”4.14.7″ _module_preset=”default” global_colors_info=”{}”][/dssb_sharing_button][dssb_sharing_button social_network=”twitter” _builder_version=”4.14.7″ _module_preset=”default” global_colors_info=”{}”][/dssb_sharing_button][dssb_sharing_button social_network=”pinterest” _builder_version=”4.14.7″ _module_preset=”default” global_colors_info=”{}”][/dssb_sharing_button][dssb_sharing_button social_network=”linkedin” _builder_version=”4.14.7″ _module_preset=”default” global_colors_info=”{}”][/dssb_sharing_button][/dssb_sharing_buttons]

Cholangiocarcinoma FoundationAfter brushing off the symptoms of shoulder pain, fatigue, and GI issues as part of my career as a paramedic, I eventually scheduled an appointment with my primary care physician in 2009 when I suspected that I had gallbladder stones. The ultrasound revealed that I had a grapefruit-sized tumor on my liver. Despite having no risk factors or family history of liver disease, the liver resection, which removed two-thirds of my liver, confirmed that I had intrahepatic cholangiocarcinoma. Three months after the resection, my cancer came back, and I knew that with the limited treatment options for this disease, the only way to beat it was by participating in a clinical trial, which I credit the persistence of my oncologist for finding. However, because my health insurance did not cover the standard of care that went into participating in the clinical trial, I was only left with the option of undergoing palliative treatment, causing tinnitus and neuropathy amongst other side effects, which drastically lowered my quality of life. The barrier that I faced with the lack of coverage from my health insurance paved my path to advocacy. I, along with other patients from Montana, traveled to the Capitol and shared our stories. This led to the passing of a law that ensured that health insurance companies in Montana would have to cover the costs for cancer patients who wanted to participate in clinical trials. While the results of this law were not quick enough for my benefit, I knew that it would at least help others down the road. Fortunately, through my own research, I came across a federally funded clinical trial that was being conducted by the National Cancer Institute; even though this clinical trial was not specific to cholangiocarcinoma, I was adamant about attempting to enroll in it. Soon enough, I became the ninth person to enter into the trial, the first cholangiocarcinoma patient in the trial, and the first to have a response. This clinical trial and the perpetual support from my husband and children are the reasons why I am here, twelve years later. 

My cancer journey has not only changed my life, but my family’s – their perception on life, what is important, and their ability to value time. My children have become involved in advocacy, which bleeds into the family whether they want it or not. Through it all, I learned that it is important to be your own advocate. This is especially true for those who do not have access to care – to health experts or to clinical trials – due to financial or geographic barriers. Everyone deserves equal access, but change is a process; nothing moves fast in the cancer world, and I wish we could make things move faster. However, there is so much more hope than there was twelve years ago – which is why we must not lose hope because there is a lot of research being done. You don’t realize how big the cancer world is until you’re stuck right in the middle of it, which is why it is important to connect with advocacy organizations, so you’re not alone. Through my experience in advocacy, I learned that every patient just wants to talk to someone else who has been in his/her shoes. If you tell your story, you might make a difference.

 

Melinda Bachini

Billings, MT, USA

Bile Duct/Liver Cancer (2009 – Present)