Advice From Two Prostate Cancer Survivors For Newly Diagnosed Patients

A pair of prostate cancer survivors from the Atlanta area, who have found friendship and community together, are sharing insights for fellow patients and survivors.

Ernie Strauss and Ronald Wakefield, who met through the patient navigation program of Northside Hospital, have built a support network to help other men navigate the prostate cancer landscape.

CURE: For newly diagnosed patients with prostate cancer, what is some key advice that you have for them as they face this diagnosis?

Strauss: For me, when I came home with my diagnosis, I handed my wife a thick pad of paper with instructions as to what my diagnosis was, what my numbers were, but the very last page, it mentioned a nurse navigator program that was offered through Northside, but I think a lot of other hospitals do it. And my wife came downstairs and said, “You need to call this number.” And I had no idea who I was going to be speaking to, or what the concept was. But I talked to this nurse, and she basically told me her job was to answer any questions that I had, to help me get all my appointments scheduled, keep things moving, and just to be there for me. And that was huge for me, just absolutely huge.

Wakefield: The same nurse navigator that earlier reached out to Ernie is the same one that reached out to me, too. Now Northside, that's a tremendous program, but for somebody newly diagnosed, for me, from the very get-go, you need support. So, if you have a spouse or a significant other or somebody you're comfortable with and knows you well, it makes a difference. So, my wife went with me to all the appointments, to all the procedures, all of that. And just having her there for me was very, very helpful. So that's the first thing, making sure you have a pretty good support system.

The second part of that is the docs would tell you one thing, but if you can get connected with others who have probably gone through it or going through it, it really helps too, because the docs will tell you in black and white what to expect. But a typical example is this gentleman, I had a catheter inserted after the surgery, because he had surgery too, and he was able to tell me, “Yeah, it's going to come out but [it will be] really uncomfortable.” The docs aren't going to tell you that, but I was prepared in my mind for that, and it still happens I didn't have a problem at all. So that was a bonus for me. So the two things would be just making sure you have a support system, and don't try to walk that journey alone and reaching out to others that have been through it. It’s very, very helpful.

What are some common misconceptions regarding prostate cancer that you have encountered?

Wakefield: I've spoken to a number of different men. And, typically, men don't want to talk about it. That's one thing. The second thing is, some men don't really want to do anything about it either, because they're focused on, “It's going to impact my sexual function.” And from the very get-go, talking to my personal physician, what he said to me was, “If all else fails, you can get a penile implant.” And he talked to me about this guy who was in his 80s who got it done, and guy’s as happy as ever, he's never been that happy in his life. So going in, I knew that. So my thing to men is, really, don't let that stop you from seeking treatment. Go seek treatment, take care of yourself. And then there are other things, ways you can deal with whatever you're faced with, after that. So, to me, that's what's critical.

Strauss: I'll echo everything that Ron just said. My father went through prostate cancer at the same time that I was going through radiation. And so many doctors have said prostate cancer is not what's going to kill you — it's going to be a heart attack or a stroke or something later in life, because it's predominantly diagnosed for men who are in their late 60s, 70s and 80s, and since it's such a slow growing cancer, there's nothing to worry about.

But my encouragement would be, having been diagnosed at age 46, I didn't know my primary care physician was actually testing for this, but they thank goodness they did, because otherwise I still would have just probably ignored everything. So, I would encourage men to not only talk about it, but also ask their doctors what kind of blood tests are they doing, and to go ahead and start getting tested at age 45 or whatever. And the same thing with the colonoscopies. Get your colonoscopy done, because that's where all the stigma resides.

One is the digital examination. When you go to the urologist, there's a big stigma around that, and I was panicking about that. I thought it was much more than it was. It lasted two seconds, if that, and the urologist was like, I don't feel anything. And when it was done, I was like, that's it. And so, to all of my buddies, I'm like, go have the digital exam and get your PSA tested, just in case.

But also, the colonoscopy. People complain about that all the time. That's not a big deal. Yes, the prep is rough, but it's one evening, and then you could possibly have five to 10 years of peace of mind knowing that everything's fine, and if it's not, you get it addressed before it aggressively grows. So it's a lot of just men discussing things, because, again, we're at an age where we need to start relying more upon science and not just think about, “OK, I don't want anything, you know, going up, to possibly diagnose something up in that area,” but it really is necessary, because there's so much preventative stuff that could that can really save your life.

Transcript has been edited for clarity and conciseness.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.