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AND HOW TO GET ONE ON YOUR TEAM. STAT!
Oh, man. You thought you had managed through the more difficult challenges of living with prostate cancer, and then you learn the cancer has progressed to an advanced stage. You wonder how this could have happened. Sure, you wanted to hear the rest of what the doctor said. But after the diagnosis registered, you were only able to process every other word. Your head became filled with an endless stream of questions.
Why is this happening? How will I tell my family? What does the future hold?
But, hang on. There's support: You don't have to stagger through this alone. More than a fancy-sounding perk, a patient navigator guides you through next steps and may help you tackle everything from deciphering medical bills to getting off the waiting lists and into doctors' offices.1
The nation's first patient navigator program began in 1990, launched by Harold Freeman, MD, who was fed up seeing the complex healthcare system clobber patients without them getting the quality care they deserved.1 Since then, the cancer care system has only gotten more complicated and doctors are even more time strapped. The bottom line: No matter your education or income level, every man with advanced prostate cancer can benefit from a patient navigator's guidance.1
1. PATIENT NAVIGATORS CAN
LIGHTEN THE LOGISTICS
LOAD
With advanced prostate cancer, you may have as many as 9 medical professionals on your healthcare team, from urologists to nutritionists. And each will want to check in with you regularly. Just imagine you and a loved one having to make all of those appointments on your own.
If you start to feel a bit stressed, overwhelmed, or anxious – take a deep breath. Enter the patient navigator, aka your logistical point guard. You could get assistance with everything from scheduling appointments, to arranging child care or transport, 1 and even booking hotel rooms for loved ones during overnight treatments. Mark also advises families on when and how to take sick leave.
2. PATIENT NAVIGATORS CAN
BRING EXTRA LISTENING
EARS
Remember when you were so flabbergasted by your diagnosis that you had trouble listening to what your doctor was telling you? Well, one of the biggest benefits of having a patient navigator on your team is that he or she may be able to join you for appointments with your doctor to help ask questions and secure the information you need. You and your loved one can also work with your patient navigator to prepare before and regroup after each visit with your doctor. This can be helpful, because listening gaps—whether due to worry or the enormous amount of info bombarding you—are not an issue for patient navigators. They're all ears, all the time. "After we'd speak with the doctor, our patient navigator was the one who would talk us through what to really expect," says Sharon, whose husband has advanced prostate cancer. "He'd help us understand what the doctor was saying by putting it in practical terms and by clarifying any questions we may have had. Without a doubt, he was wonderful."
3. PATIENT NAVIGATORS CAN
SHARE RESOURCE CHEAT
SHEETS
Patient navigators may not only help you decipher medical bills, and refute charges, if needed, but they can also share website links to government and private programs that may be able to assist you and your family with treatment costs. 1 Mark prides himself on always sharing support websites and phone numbers with caregivers, too, connecting them to support networks.
4. PATIENT NAVIGATORS CAN
ASSIST WITH
UNDERSTANDING DIFFERENT APPROACHES TO TREATMENT
Patient navigators also help you better understand the various treatment options that are proposed to you when you have advanced prostate cancer. "For example," says Mark, "maybe you spoke with your urologist but didn't know he's a urological surgeon, and based on that expertise, likely offered you treatment suggestions different from, say, those of a clinical oncologist or radiation oncologist." A patient navigator can help you understand why a particular specialist may be proposing certain approaches to treatment. That said, a patient navigator is not intended to provide medical advice but rather is there to provide support to patients and caregivers.
5. PATIENT NAVIGATORS HAVE
CONNECTIONS,
CONNECTIONS, CONNECTIONS
Say you get the "30-day waiting list" response from a receptionist. Often, a patient navigator has the go-to connections and relationships to get you in the door much faster to avoid a month-long wait. He or she can also provide a list of specialists referenced by your healthcare provider. 1
FIND YOUR PATIENT NAVIGATOR NOW!
Start with your treatment center or doctor's office. As of January 1, 2016, a new mandate requires cancer centers seeking accreditation by the American College of Surgeons to provide cancer-navigation services. 1 "If your medical office does not offer one, you could reach out to PHEN to discuss getting access to a patient navigator," says Mark. "The American Cancer Society also features a hotline for finding patient navigators across the country and lists patient navigators by state online that they can connect you with." 1
My Prostate Cancer Roadmap is an initiative of Janssen Biotech, Inc., in collaboration with
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