Hi everyone, it's Alex of the PCRI. Today I get to sit down with a really good friend
of mine named John Shearron. He's a support group leader out of Chicago who runs a group
on advanced prostate cancer called Mets Mavericks, and today he's going to share his story and
also some incredible advise for us.
Hi John, thank you for being here today.
Hey Alex, how are you?
So, John, you've been a support group leader for advanced prostate cancer patients and
have been an advanced prostate cancer patient yourself. Can you share your story, kind of
how you found out about your prostate cancer diagnosis?
I found out about my diagnosis accidentally. I saw an ad on the internet that said, "Get
testosterone, feel like you're 19 again." I go, "Sounds good to me," and the many blood
tests that they gave me resulted in a PSA, and my first PSA was 12 that I'd ever had,
and I was 45 at the time.
So, your family doctor told you that?
No, it was the result of going to take the multiple blood tests, and so no doctor told
me. All I did was I got the results in and I saw I had a PSA of 12, and the only thing
I knew about PSAs was public service announcements. I had no idea what it was. I didn't know.
And so, I had to do some research. So, over the next week or so I call my family doctor,
they referred me to a urologist, and the urologist gave me another PSA. Three weeks later, it
was 15, and I started the journey from there.
Wow, so once you got to the urologist, what were your options?
There weren't any. It was surgery, surgery, or surgery. And he wanted to cut it out quickly.
And by the way, their pathologist made a mistake. He said I had a Gleason 6; that didn't seem
right to me from the brief time that I researched it, and so I had second opinions, and second
opinions said, "No, you have a Gleason 7, 4+3."
That's a lot to find out within a very short time-frame.
It is.
How did you know to do the second-opinion, though, because obviously that's a different
way of thinking. A lot of people do the run-of-the-mill whatever the urologist says, and go to treatment,
but you did a lot of research, so what caused you to think that way?
Yeah, I like to research. I want to find out what's going on. I want to understand what's
happening. So, I got involved with some support groups, and I met a gentleman who became my
mentor who was a breast cancer researcher for over 40 years, and he was really brilliant,
and together, we tried to figure out what to do.
So, is he the founder of mets mavericks, the group that you are?
Yes, Bill Blair was the founder of Mets Mavericks.
And that's based out of Chicago, right?
Yes, that's correct.
And when did you take over the group?
I took over when Bill passed away, which was in 2008.
Well, I think it's an extremely unique group because there's obviously a lot of advanced
prostate cancer patients out there, but to have a support group exclusively for advanced
prostate cancer is really interesting because you're dealing with some really tough situations
and some intimate parts of people's lives, so what's that like for you?
It can be really difficult. I'm in an unusual situation. Most men are very communicative.
They rarely tell their families what is going on. Their doctor will see their test results,
but their doctor is not very close, personally, to the patient, and I'm in-between. So, I
get to see them from a personal point-of-view, and I also get to see them from a patient
point-of-view, where I look at their blood test results, hear about they're feeling,
ask them about what they might want their next step to be, etc., etc., and it's tough
because over the last, I don't know how many years, I have watched a lot of the pass away,
but I have to say, now it's very different—really different. The drugs that we have now, the
imaging we have now; if someone were to tell me that we have 10 times more options, I would
tell them that they're wrong; we have more than that. We had very, very, very few options
when I was first diagnosed. Really, hardly any at all.
No, that's incredible. I mean how much the medicine has definitely changed so much in
the last 10 years alone, since I started, and I often think, what was there before?
I know we had surgery, we had radiation—which, unfortunately, back then had a lot of toxicity—and
so I think we're really lucky to be at the place that we're at today, and I think one
of the points that's really—something you mentioned—is, you know, that was 20 years
ago for you when you were diagnosed, and when prostate cancer is thought of as a chronic
disease, not just cancer, what's interesting about that is the fact that if you live long
enough, you're going to benefit from medicine in the future, and I don't think that's something
that patients often think about—that something can get approved in five years that completely
be a game-changer for them, which is why we talk about it on the channel a lot.
Well, sometimes there could be a game-changer next month. I mean, it happens—it's been
happening very frequently recently. You know, so now we've got the PSMA, we have far better
imaging than we've ever had before. We have drugs that didn't exist even two, three years
ago. We have drugs now that weren't an option. And, like you said, radiation is so much better
than it was. The amount of change that's happened in the last 20 years, I don't think anybody
predicted. It's been really rapid and quite impressive, and it's been very beneficial
to the men and their families.
So, after you got your pathology back, and you found out that you were an intermediate-risk
prostate cancer patient, and your PSA was rising, at what point did you decide, "Okay,
I'm going to start researching treatments?" Did you talk to your doctor? I mean, you only
had a couple options when it came to surgery or radiation back then, so what did you do?
I would go to conferences. I would go to presentations. I would read as much as I could that was available
on the internet. I would talk to other patients to see what their responses was to their treatment
and how they felt about the treatment that they did receive and what their outcome at
the time was. So, I really left stone unturned.
That's awesome. I mean, I know that's who you are naturally, but I kind of wish every
patient had that attitude, and I know that researching is oftentimes somewhat overwhelming,
but there's so much that they can look at on the internet today and talk to other people
even online if they're uncomfortable going to a support group in person because obviously,
I think that's a massive change in the thinking of being a real researcher when it comes to
being a patient versus just doing the run-of-the-mill standard-of-care treatments. And obviously,
it's going to affect your quality of life a lot. So, what did you end up doing as far
as treatment goes?
Well, I ended up doing something that wasn't done very often back then, and isn't done
very often now, and I did focal cryotherapy. You know, nowadays, we have the 3T multiparametric
MRI, guided biopsies, and back then, we didn't have anything even remotely close. So, the
closest thing was called the saturation biopsy, and that's what I had. Basically, 40 cores
on each side of the prostate, and knocked out 4, and those 80 samples proved that my
cancer was only on one side of the prostate, so I was able to have focal therapy.
How many cores did you say you had taken?
A total of 80.
That's amazing.
Yeah, no prostate is left.
So, did you have to talk your doctor into this? This is not a standard treatment.
No, I went to one of the gentlemen who was a pioneer in cryotherapy, and he was very
concerned, and in fact, when I had that saturation biopsy done, they showed I had a Gleason 8,
not a Gleason 7, and he was very concerned. So, when the focal cryotherapy, he did something
that he doesn't usually do, and I don't know if he's done it since—cryotherapy usually
freezes the tumor twice; freeze, thaw, freeze, thaw, then you're done, and in my case, he
did it three times. So, the surgery took a little bit longer. But I did go to Disneyworld
the next day.
That's impressive.
I actually, I did literally. I went to Disneyworld the next day after the surgery.
So, you did focal cryotherapy, and were there any side effects associated with that besides
any pain from going to Disneyland the next day?
Yeah, no pain. I would say partial impotence because they freeze—the thing about cryotherapy
is you're going to freeze at least one or both nerve bundles, and it froze one nerve
bundle. You know, that's not really a big deal. You know, Viagra, Cialis, you know,
Trimix, you have all sorts of different ways to get an erection if you need one. So, I
never even gave it a second thought. It hasn't really bothered me.
Alright, so what was your PSA like after that?
It ranges between 0.05 and 1.2.
After you had the treatment, how long did it take to get there?
Probably a month or so. Not long. In fact, right after I had the surgery, I asked could
I get a PSA? And they said, no, we would never do it right afterwards. I said okay, and so
I went got one on my own within an hour or two, and it was interesting. It was, obviously,
the PSA is now in the bloodstream even more, and it was 18 at that time. It was just something
I wanted to know.
That's really good information because I think people are always interested on how it works
and what does the PSA do, and how does it all get released, and then settling down over
time.
Yeah, it was really successful. I'm really happy with the outcome.
So, did you have to do anything after that, or is you had the focal cry and you moved
forward?
I moved forward and became a lot healthier. My doctor told me to follow the Mediterranean
diet. I started getting back into cycling, which is my life-long love as far as sports
go, and I am healthier and in much better shape and have a better diet then I ever would
have had if I hasn't been diagnosed with prostate cancer.
I had one support group leader, he was a good friend of mine, he always said that his prostate
cancer diagnosis was kind of a blessing for him because he would have never taken care
of his health the way that he did unless he diagnosed with prostate cancer the way that
he was, and he realized, you know, I want to live, I want to go do my life, and still
continue to do all my hobbies, so that sounds like it was a very similar experience for
you.
Yeah, I agree 100%. I think my life is much better after having had a diagnosis, and that's
not to say it works that way for everybody because I understand some guys are in some
very difficult places. I just happened to be very fortunate that the diagnosis ended
up being a net positive for me.
You know, did you have to do any hormone therapy or any other forms of treatment since you
had the focal cryo?
I did, they started me on hormone therapy almost right away after my first biopsy in
the urologist's office, and I didn't think anything of it. They just said, "We're going
to give you a shot of Lupron. It's going to tell your body to stop producing testosterone."
At the same time I was given Casodex. Actually, I need to back that up. They gave me Casodex
two weeks before Lupron. But I was on it for a year and a half, and they wanted to keep
me on it longer, and at the 18-month point, I just called the doctor's office and said,
I'm not coming in; I'm not taking the shots anymore.
And your PSA had stabilized by that time, correct?
Yes.
And you had already had the focal cryo, so you weren't dependent on the hormone therapy
in that case?
No, I wasn't. They just wanted to make sure they got any micro—not metastases—but,
you know, any small networks of cells elsewhere in the body that could be well taken care
of by the hormone therapy.
So, what was your experience? I mean hormone therapy can be a quite a lot.
Oh, I would have paid to do it if someone told me how I felt was possible. I would have
bet anybody any amount of money that you couldn't take away my sex drive by giving me a shot.
Wow, that's impressive. I mean, you're one of the few people I know that would say, I
would pay to do it because you're a researcher in your brain, so I think you probably found
that whole process fascinating, but what were the physical effects of that? I mean, did
you feel weaker?
Oh yeah, really fascinating what happens, and it's like being inside your own experiment.
So, you lose all visual, as far as sex drive goes. You, you know, usually see an attractive
woman walk by and your turn your head. It's automatic. I didn't realize how automatic
it was until I had been on hormone therapy, and it is automatic, and you have to try really
hard not to when you're not on hormone therapy. So, all of that was gone. The visual response
was gone, everything was gone, and it was really fascinating. I gained weight. I've
stayed the same weight since I was in high school/college my whole life, and I'm a small
person, and I exercised throughout my hormone therapy, and I still gained almost 30 pounds.
And when you were doing exercise, were you doing weight training, or?
That's a mistake I made. No weight training. I wasn't at that point really aware of how
important that was, and I absolutely, positively would have done it again had I had the chance
to do it.
So, have you done a lot of cycling then?
I did start doing cycling then, and that was beneficial, but I didn't do it that much until
later one. It wasn't until much later that I started doing that.
Side effects, you didn't have hot flashes or anything like that?
Oh, I did. I had everything. So, every side effect you can think of. I was considerably
weaker, much weaker, and the way that I know that is that all my life I've done one exercise
repeatedly, and that's push-ups, and it really made a difference. So, you lose at least half
your upper-body muscle mass. And hot flashes I had fairly frequently. At night, I had to
wake up completely covered in sweat, and during the day time, at work, sometimes I would just
get so hot that, you know, it was unbelievable how hot you can get in one minute, but you
know, it didn't kill me. It was fine. It was just a nuisance, really.
Did you do anything to mitigate the hot flashes like estrogen patches or anything?
No, nothing.
So, obviously, I mean, when your testosterone comes back, it's a very different lifestyle.
Did you have any sort of— what was your experience like?
That was the best thing ever. It was almost like being in a movie. So, my testosterone
comes back, it's like a second puberty. My body literally went through all the same things
it did when I was going through puberty. I got a little bit of like a hard nodule under
one of my breasts which I remember going through when I was like 12 or 13, and then that went
away. Obviously, your sex drive comes back, and the absolute crazy thing is what happens
if you exercise during hormone therapy and then when your testosterone comes back. So
one day I'm doing pushups—I'd do them like twice a week, maybe three times a week. I'd
always do them to failure so I knew exactly how many I could do—and on one particular
day, I blow through the maximum that I could possibly do like it was nothing. Literally,
a few days before, I could do whatever the maximum was, and three, four days later, at
that point my testosterone was starting to come back, and I built so much muscle in that
short period of time that I was actually looking around the room going, "What just happened?"
How long were you off the hormone therapy when that happened and your testosterone started
to come back?
Probably a few months before it started coming back. I'd say between three and six months.
That's often a question I get on helpline and with patients and I'm sure you do on helpline
now, is what is that recovery process like when you're off of hormone therapy because
I know that, obviously, the side effects of being on hormone therapy is quite overwhelming
with the fatigue and side effects, and so, it's always good to hear about life on the
other side when it comes back and you know longer need to be on it.
I will say that one of the things I've seen a lot through the PCRI YouTube videos is Dr.
Scholz talking about how important exercise is, and I have to say, if a patient is going
to on hormone therapy, and you really want to change your life and want to make it so
much better than it was before, start exercising on hormone therapy and do the best job you
can when you're exercising. When your testosterone comes back, it's like a whole new lease on
life. You can be healthier and stronger than you were prior to the diagnosis and prior
to hormone therapy.
That's an incredible point. I'm glad you said it as somebody who has been through because
it's one thing for Dr. Scholz and I to say it, but it's another thing for a patient to
say it who has been through that experience. It's a massive change, and it has been really
cool to see how patients kind of develop their lifestyle habits, and you know, make these
really healthy decisions by going through these processes which are quite terrible,
but there's really a silver lining there. Thank you so much John. I mean, you shared
your story today, and it's very impactful. I know it's definitely impacted me and kept
me passionate about what I do here at PCRI. You've definitely helped me and PCRI stay
on our game and given us incredible ideas, and I look forward to continuing with you
on helpline. Speaking of helpline. If you have any questions about prostate cancer,
side effects, or lifestyle issues, and you need help, we are just a phone call away.
You can go to our website, PCRI.ORG/helpline, submit your information there, and we'll give
you a call back and setup a time to talk. We really appreciate you and I hope you have
a great week.
Hey everybody, it's me, Alex, and our mascot, Hunter, here. 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 out with new prostate cancer videos
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check out our website, PCRI.ORG, for my more information about prostate cancer. We hope
it helps.