The kingpin of the whole process – the nurse navigator.
The nurse navigator is the fulcrum of the whole process of dealing with prostate cancer. She – in my case, both are female – is the person whose job can be described as answering questions like, “OK, so I have prostate cancer; now what do I do?”
There are two of them at the new Leslie and Irene Dube Urology Centre of Health at St. Paul’s. The Centre is a new area with 18 private rooms and the latest in technology and treatment for prostate cancer. An amazing place.
My wife and I met with our nurse navigator for a crash course on prostate cancer and everything associated with it shortly after I had been told I had prostate cancer.
Here’s where, in hindsight, I might have made a mistake. I went to meet the nurse navigator two days after I received the call telling me I had prostate cancer. I was still in shock or denial or something, because part of what we were told bounced right back at her when she told me. I simply wasn’t able to assimilate it. None of this was her fault. She did an amazing job covering all aspects of prostate cancer in a clear and concise way, and she showed empathy and understanding while doing so.
I should have gone to see my own doctor before I went to the nurse navigator, because I think I would have been in a better frame of mind when I met her. I’ve known him for so long; he knows how to calm me down and make me listen. That may not be the way to go for someone else – we’re all different. But bear in mind that the nurse navigator will tell you everything, so be ready to pay CLOSE attention.
The nurse navigator, when I look back at it, is the critical component to this entire process. She is the kingpin of the whole operation, as far as I’m concerned. I continue to rely on the nurse navigator almost on a weekly basis – she’s a sounding board for problems, worries, a cornucopia of useful and practical knowledge and above all, a friend in this fight I’m in.
By having nurse navigators, patients are freed from the uncomfortable position of having to make up their minds about treatment right at the time they get “the call,” and instead have some time and good advice to help make the decision that’s right for them. Plus, they speed up the entire process to get you treated quickly.
Patients get a comprehensive amount of information delivered in a way that’s understandable. The message is consistent, so there’s no confusion about who said what while you’re trying to decide the best way to go. The decision on surgery or radiation is yours to make. All the nurse navigators does is give you the tools to help you decide which decision is best for you, and then they make everything happen.
It’s a very frank conversation about prostate cancer. I found out how my cancer is ranked based on my Gleason score. She talked about the types of radiation available, and what active surveillance entails. I found out all the information I’d ever want to hear about how the surgery works. I found out about nerve-saving techniques that may or may not work in my case (no such luck for me), and I got an understanding of the incontinence and erectile dysfunction (E.D.) issues I would be facing afterward.
Part of the talk was about erections. That’s a tough topic for a guy to talk to another person about (unless it’s guys exaggerating about things with other guys), but it’s an absolute necessity because the reality is that there’s a high probability that erectile dysfunction will become the “new normal” for most. I was uncomfortable talking about it, and I vaguely remember muttering some banal answers just so she’d stop asking questions about it.
That was my second mistake in the initial consultation. I should have sucked it up and been a grownup. I should have known that such a conversation would come up, and met it head on (so to speak). I’ve had a couple of conversations with her about it lately and it’s a LOT more relaxed and open and that’s a very healthy thing.
She talked about it because most men aren’t able to have nerve-saving surgery since their cancer is either too close to the nerves or in them. The nerves involved in erections run alongside the prostate in a sheath, so if there’s any cancer on the outside of the prostate, or if there’s no room between the nerves and the prostate, the surgeon cuts the nerves off.
No more erections unless you have help – but there are drugs for that! “Happy Juice” is what someone I know calls it. I’ll tell you all about that later…
I’ll never forget being asked if my erections could be described as “pristine.” What the hell does that mean? And how do you answer a strange woman when she asks you that, whether she’s a professional nurse or not? I think I might have said something like, “Uh, they’re pretty good.” Jeez!
As I said, there are solutions to the inability to have erections, and many men continue to have happy sex lives after prostate removal.
There was a lot of discussion on incontinence as well, and the reality for me is that incontinence had a much bigger impact on my life than E.D. did.
So by the time the nurse navigator was done with us, we knew what the prostate is, where it is, what happened to me, what the biopsy discovered and what that meant. I clearly knew the treatment options for prostate cancer and which ones she thought I could choose from. I got a ton of written information along with her contact information, and I was told to call her if I had questions.
I went home, had a rum to think about it, and made an appointment to see my doctor the next day.
For me, the decision was easy: I wanted that thing out of me. I couldn’t stand the thought of something cancerous living inside me. When I went to my doctor the next day, he confirmed that he thought the best course of action for me was to have the radical prostatectomy. We’ve talked about prostate cancer a hundred times, so he knew the best thing for me was to get it taken out.
It was like a weight had been lifted from my shoulders. I immediately felt good about the whole thing and had a direction to go. I phoned the nurse navigator up and told her I wanted to have it removed, but that I wanted to request a particular doctor.
Then it was time to wait for a date, which turned out to be April 29.