Patient Advocates: Running Alongside You Every Step of the Cancer Marathon
My client likened her cancer diagnosis to running a marathon.
“It’s going to be a long run to the finish line, and it’s going to require a lot of focus and stamina,” she told me.
That metaphor stuck with me. A former half-marathon runner myself, I thought about how I always performed better when I had a support system, friends to train with and loved ones cheering me on along the sidelines. These people kept me more motivated, and as a result, empowered me to perform much better than I would have been able to if I’d done it alone.
Like a marathon runner, cancer patients perform much better when they’re not facing the challenge alone. A great addition to your team of friends and family on the sidelines, a patient advocate is your “running buddy” throughout the marathon of cancer. They are there to run alongside you every step of the journey, providing educational, logistical, and emotional support to help you perform at your best.
The Diagnosis
“I’m so sorry, but you have cancer.”
You hear the word “cancer,” and the rest is a blur. You are scared. You can hear the faint buzz of your doctor’s voice in the background, explaining your diagnosis, next steps, but you can’t actually make out any of the words. You leave the appointment with so many questions. What’s next? Who do I contact? What can I expect? How am I ever going to understand all this medical jargon? Am I going to die?
A patient advocate can alleviate some of your fears by helping you better understand what may lie in front of you and how to get the treatment process underway. They can translate your diagnosis from medical jargon to explain the results of your pathology, how these results will guide treatment options, and diagnostic procedures such as additional biopsies, scans, and blood tests.
Next Steps
The next mile marker after the diagnosis is the decision-making. There are so many decisions to make, and they all directly impact your outcomes.
The first critical decision is choosing a doctor. Wait – doctors. There’s the medical oncologist, surgical oncologist, radiation oncologist…maybe even a plastic surgeon. How do you choose the best doctor, and how do you know which ones you need to see and when? Furthermore, how will you coordinate all these appointments and make sure your various doctors have your records and pathology results?
A patient advocate can research physicians to help you choose the best doctors and seek initial and second opinions to inform your treatment plan. They can also help coordinate appointments and communication between members of your care team and sometimes even get you in to see a physician sooner. In short, a patient advocate can take on most of the logistical burden so the initial planning is less overwhelming.
Appointments
You’ve chosen your doctors and now have a whole series of appointments ahead of you. You approach these appointments with anxiety, not sure of the right questions to ask and worried you’ll miss something important.
Your doctor starts by explaining stage and grade to you, but what does it really mean? She throws around terms such as “tumor marker,” “genomic testing,” and “targeted therapy” that mean nothing to you. You leave the appointment feeling more confused than when you entered.
A patient advocate can help you get the most out of your appointment by preparing a list of important questions to ask. During the appointment, they’ll be there to take notes and make sure all of your questions are answered. They can also translate any medical speak to ensure you have a thorough understanding of your diagnosis and treatment options.
After the appointment, your patient advocate will provide you with their notes so you can better remember what was discussed and even share with family members who may be concerned and want to know more about your prognosis. With a patient advocate, you will thoroughly understand next steps and the answers to your questions so you can move forward with clarity and confidence.
The Results
You’ve received the results from your additional testing and imaging. It’s now time to meet with your doctor (again) to discuss surgery, chemotherapy, or radiation. A host of new questions arises: What drugs might I be given? What are the side effects? What should I expect from surgery and/or radiation? More jargon is thrown at you: “fractioned,” “adjuvant,” “simulation.” What does this all mean?
On top of being intimidated by the treatment plan itself, you’re scared of the side effects. Will you lose your hair? You hear the nausea can be awful. How much pain will you have?
Again, your advocate is there with you to attend appointments, take notes, make sure your questions are answered, and provide reassurance. You still feel anxious but a little less so, and you know you can get through this.
Day 1 of Treatment
It’s finally here: the day of your first treatment. You’ve been told what to expect, but what will it really be like? Will it hurt? Will you start having those side effects you’ve heard about? You feel lonely. This journey is yours alone and unlike anyone else’s.
Your advocate is there to reassure you and remind you that, while your journey is unique, you are not alone. You get through the day and breathe a sigh of relief at its passing. A long stretch of the marathon still lies ahead of you, but you have a teammate by your side to help you hit your stride. You know you can do this.