I think one of the things that
is really impressive about you is how much research you've done. So, as a researcher what
would you tell patients who are just beginning their journey and need to start that process of
researching and finding out what treatments they're going to be, you know, looking at?
Question everything. Absolutely question everything, and don't accept what you're told by
any one person without checking it out elsewhere. I think that there's two types of patients that
have the worst outcomes and those those are the ones who have the least resources and those who
have the most resources. The difference is those who have the least resources
tend to just not be able to get the information. Those who have the most resources, and I'm talking
about people who happen to know someone who's like the head of a department—things like that—they
tend to believe whatever they're told without question. All I'm saying is
don't believe what you're told without question; always question
what's being told to you and try to find another source of information that will confirm that.
So, what would you tell a caregiver whose husband or partner is about to start
the journey of, you know, being diagnosed with prostate cancer and finding out what
treatments they have? You've spoken a lot to caregivers at our conferences;
you've always been so great with them. What is your best advice to them?
Trying to keep it a little bit light, I would tell the caregiver good luck,
and I really mean that. I mean that in both a serious way and in a kind of offhanded casual way,
but it's true. Men are, in general, not good communicators and we're told that we are the
bread winner, we are the protector, we are the strong one, and when you're diagnosed
with cancer all of a sudden you don't feel like the protector or the strong one. Here's someone
who you have to let take care of you, and I would tell the caregiver to be prepared for every
range of emotion that they've ever seen their spouse or partner have because they will go from
anger, which in males is a lot of times the an indicator of depression, and the hormone therapy
will make them more emotional than you've ever seen them. That's one thing i didn't mention is
it does make you more emotional. I would just tell them to be ready for everything and to try to take
everything that they see and the way that their spouse or partner responds to them with a grain
of salt, and that grain of salt is understanding their position and where they're coming from,
and if your partner is normally not communicative they'll probably be even less communicative
when they're diagnosed because a lot of times they'll just kind of crawl into a hole
and clam up. If their partner is the other way around, they're very fortunate. You're very lucky
as a caregiver if your you know parter or spouse will communicate with you, but keep an open mind.
You know, you dealing in advanced prostate cancer with patients and this support group,
can you think of any stories of hope for our audience? We're always looking for
incredible stories because I think that since prostate cancer is so different
everybody thinks that advanced prostate cancer is an automatic death sentence,
and that's one of the misconceptions that we try to take care of here.
Well, it's not an automatic death sentence, especially today,
but I'd like to tell you a story that goes back many years where there was a
patient who the doctor told them, "You're lucky if you've got six months to live."
Seven years later, he saw him in the grocery store, and went up to him and, "Hey doc, how
you doing?" You know, and all I can say is that if a medical professional tells you you've got,
you know, X months to live, they don't know. They really don't know, and one of the things that you
said Alex was this is a very personal disease, each patient will respond differently to the same
exact regimen, same treatment. You could you could have two patients who are the same height and
weight and age and they could have the same health status, and they're going to respond differently.
The way to be successful is to communicate with your medical professionals
and to communicate with your caregiver and to be willing to make changes on a dime when it's time,
but yes, things are much better today than they ever been and it is not a death sentence.
Working in PCRI, working on helpline, we see a lot of different cases, a lot of different opinions;
we've heard what doctors say, we hear what patients say. We see what the standard of
care norms are and then obviously we see the new treatments in the pipelines that come up.
If there was one thing in the world of prostate cancer that you could change, what would it be?
A cure, that's what i would change. I would hope that there's a cure,
and without the cure, what I would hope for is that the treatments
don't debilitate the patient and that they can have a good quality of life.
That's really important to consider when you're looking at different treatments. How will this
treatment affect my long-term outcomes? How will this treatment affect my short-term outcomes? How
will I feel on a treatment, and how will my family see me doing on this treatment? So, those are
considerations; it's like a chess game trying to figure out am I trying to live as long as humanly
possible or am I trying to live the best life I can, and there's decisions to be made there.
No, I appreciate the way you put it. I think that oftentimes quality of life
just kind of goes by the wayside when it comes to people wanting to survive, and so
I think that if i was asked the same question, it would definitely come
to me when it comes to like surgery and radiation and all these side effects and hormone therapy.
It's just that they're not presented with the full picture from the start. They're not going
to have those conversations with the nurses in the doctor's office or even the doctors themselves,
and so they go home with this sense of, "Lkay well I know I need to do something." but without
actually knowing the full cost, and the cost is the frustrating part for me because I see
what so many people are going through when it comes to quality of life, and I'm talking to a
good friend who's just switched hormone therapies, and even just that transfer of switching has been
difficult for him and nobody told him it was going to happen. So here he's sitting thinking,
you know, am I going insane, and instead, it's just him transitioning and nobody even told him
that that was going to happen. So, I appreciate that point because i think that obviously
PCRI needs to fulfill that to some extent, but the concept of researching and looking
at it like a chess game and being very strategic in your choices is very important.
Well you actually brought something very interesting. Hormone therapy given to prostate
cancer patients are, in many cases, the same drugs given to men transitioning to females, and the
only way that you can be a male transitioning to a female is to have two psychologists basically
see you for a year or two and write a letter, and so they they take that very seriously, but when a
prostate cancer patient is diagnosed with prostate cancer in the urologist's office, for instance,
within an hour that patient will have been given a Lupron or a drug similar to that
without any counseling without being told what's going to happen to them, without being told how
they're going to feel or how their brain will change or how their body will change. So,
we're really kind of just thrown out there, and I think in a way it's because we're men. I think if
you gave women testosterone because they were diagnosed with a cancer that responded to that
they'd be given all sorts of counseling and we men aren't at all; we still aren't.
What are tips you would give to somebody who you're maybe on the phone with—a
prostate cancer patient who maybe wasn't born positive, maybe they need tips to
get motivation and keep going and continue to do their research and take care of themselves.
Well, I usually try to talk to them about what they feel are their strengths and
they can apply those strengths to their cancer. We have men that are artists,
engineers, they've been caretakers maybe before, you know, their husbands, fathers, partners,
and they've had success in those areas of their lives, so why not take that success and apply
it to how they look at their cancer. And I also tell them something that they're not expecting,
and that is be cognizant of the people around you and try to do something good for them as well
because what happens is when you are diagnosed with cancer
you're very inward looking; everything is about you and it can be in the moment, but it can't
be forever. It can't be in the long run. So if you're a person who wants to help others,
then help your spouse, help your partner, help your family members,
and that'll take some of that burden off of you, some of that worry; it's going to keep you busy.
So, what would you say are some benefits of joining a support group? What would you
encourage—what would you tell patients to encourage them to join?
One of the main benefits of a support group for men is
it's very unusual for men to share with each other what it is that they fear,
right? What it is that they're trying to solve that they're coming at from a point of weakness,
really. Most of them aren't researchers; they're not physicians; they're not familiar with this.
They were just thrown into this, and so everybody in that room honestly is coming from a point
of not knowing. I would say that if women saw a men's support group, it would be very different.
It's like every man turns into an engineer ;every man is trying to figure it out, "What if I take
this? What if I take that? What happens here? What happens there?" and also occasionally you'll get a
that flash of emotion that you see, and all the other guys are very appreciative when
somebody shares something that really bothers them, and this is going to be one of the few
times and maybe the only time in their entire lives that they will share something intimate
from a point of—they would think—of weakness with another man. This really doesn't happen
normally. It wouldn't normally happen had they not been diagnosed. So, you can make some really
great friendships in these support groups, and it can actually change your outlook for the better.
Yeah, I think that those benefits need to be talked about as well just
because a lot of times people think it's going to change the course of treatment,
but it also can change the course of your life. I know that even being a woman i've
attended support groups, I've spoken to support groups, and the friends that I've made there,
and the relationships I've had I have cherished for the rest of my life, and I would imagine
that even people—especially people—going through those situations and actually feeling
like there's somebody else who is going through what I'm going through, it's really incredible.
It's very helpful, extremely helpful. I would suggest that men seek out support groups.
If they can't physically get to support groups, seek out support groups online as well.
Hey everybody it's me, Alex, and our mascot here, Hunter. He's obviously licking my hands
because we have lots of treats for him today, but yeah, we just wanted to let you know to go ahead
and subscribe to our YouTube channel. We come up with new prostate cancer videos every week,
and go ahead and check him out on instagram at sirhunterthedal. Also, check out our website
pcri.org for more information about prostate cancer. We hope it helps.