Navigating Prostate Cancer: A Patient's Experience From Diagnosis to Survivor
Although cancer affects you physically in many ways, there are also psychological effects that can be difficult for a patient.
First there were tests, then a biopsy, and finally a diagnosis: “You have prostate cancer.” How could anyone plan for this moment? Questions that immediately came to mind were what stage am I, what are the chances of whatever path I take working, and what will the side effects be? “Cured” was a word I read men with prostate cancer will never hear.
I was told I was not the typical prostate cancer patient as I was too young, in good health, ate well, didn't smoke, and didn't drink alcohol. I thought to myself, what could I have possibly done differently? How about not having a brother with the disease a year earlier?
I underwent a robotic prostatectomy in 2009. Five years later my cancer was back with external radiation treatments being my best option, but even that had only a 50% chance of working. I wondered how this could happen, because after my surgery, I had only a 15% chance of my cancer coming back in the next 10 years. Two doctors told me the combination of surgery and radiation would make me impotent and 1 optimistic doctor said that was just a possibility.
An Introduction to Navigation
I was waiting to see my radiation oncologist for the first time when Ms S walked in and introduced herself as my cancer navigator. After a few words about contacting her with any questions, our meeting was cut short by the arrival of my radiation oncologist. I had never heard of someone called a navigator and wouldn't understand how helpful she could be until much later.
Men with prostate cancer face so many embarrassing experiences. For me, the embarrassing moments came after surgery when a female nurse checked on different areas in my genital region every hour. During radiation, it was the daily lowering of my pants so the female radiation therapists could line up the tattoos on each hip and my pubic area.
Before my treatments started, I couldn't sleep through the night, whereas during my treatment days that problem disappeared. As the end of treatment came into sight, however, I started to become fearful again and wondered if Ms S could help in some way so I asked if I could talk with her. Ms S met with me, heard my concerns, and scheduled a follow-up appointment so that we could talk longer. The next time we met she listened while I talked about many things including having to wait 3 months for my first PSA test to see if my radiation treatments worked. If they didn't work, I would need to start hormone therapy — often referred to as chemical castration. Hot flashes, loss of muscle mass, weight gain, the ability to have an erection, or even have thoughts of sex, along with other side effects were my biggest concerns. Ms S was different from many I have met in the medical field in that she expressed concern on her face as we spoke. After our second meeting, she scheduled yet another follow-up appointment.