Life can be complicated.
The full expectation and preparation for one version of future events becomes a complete 180 in the blink of an eye.
On Wednesday, my right calf was kind of sore.
I mean, it wasn't like, it's painful.
my gosh, what's going It was just kind of sore.
So I called my doctor and they called back and said to, you know, it's probably nothing, but you should get that checked out.
When I was in the emergency room, the nurse, she says, I'm telling my colleagues that I've got a patient with three blood clots in them and he doesn't look anything like a patient
with three blood clots on him.
To which I said, well, what does a person with three blood clots look like?
And she says, they're usually dead.
How do you anticipate the gravity of a sudden, dire circumstance while on the road to recovery from a previously life-altering event?
How do you prepare or attempt to expect the unexpected?
Every six minutes, somebody in America dies of a blood clot.
We're here to change that statistic.
Welcome to Taking a Breath, a stop the clot podcast.
A podcast dedicated to bringing awareness of the dangers of blood clots from the clotting disorders community to the world.
With the help of many notable blood clot survivors, we are here to give you the knowledge and the skills that you need to prevent this silent killer.
My name is Leslie Legge.
I am the president of the National Blood Clot Alliance and I am a blood clot survivor.
And my name is Todd Robertson.
I am the patient engagement liaison for the National Blood Clot Alliance and I am a seven-time blood clot survivor.
And we're here to stop the clot.
As blood clot survivors, we know the fear associated with a close call, that dreaded diagnosis that provides a bitter mix of clarity and finality.
Our guest today is somebody who unfortunately knows this feeling all too well.
From active early screenings for his hereditary predisposition for cancer to rolling with the uncertainty of his developed DVT and PE from cancer treatment complications, it takes
a level of resiliency
only experienced by a few.
Please join me in welcoming today my friend, Dr.
Michael Philbin.
So we have hereditary prostate cancer in our family.
So I was diagnosed when I was 52.
Sorry.
I started screening in my forties because my dad died of metastatic prostate cancer when he was 57.
I was 12 at the time.
So both my brother and I were doing screenings well up before that.
So my brother was, he's 14 years older than me.
So he was already getting it, you know, you know, getting things checked out and whatnot.
So he was, I don't know, 53, 54.
Dad's had it, now my brother's had it.
So I started taking vitamin E with selenium and lycopene and all that stuff.
Was that a waste of money for 11 years, probably?
Did it slow it down?
Maybe, I don't know.
So my PSA, when I was like 45, it actually went up enough that for a normal man, it probably would have been, no big deal, don't worry about it.
But because of my family history, my dad dying of metastatic disease, my brother having it.
Did the first biopsy, which of course I was nervous for.
And then it came back negative.
And then six months later, it tripled or quadrupled.
And I thought, this is it.
They didn't find it the last time.
like, God, I'm only 45, 46.
I thought I had until 50 till I had to worry about this.
And then that came back negative.
Nothing there.
And then the PSA came back down.
And over the next seven years, it kind of rose slowly, not a big deal.
The urologist I had at the time, his thing was like, yeah, your PSA has been kind of steady, but you're 52, your dad's age, your brother's age, maybe we should do another
biopsy.
So I talk with my wife and family and my doctor, so we do another biopsy.
So I was really nervous for the first two and I go into this biopsy thinking, there's no big deal.
It's just sort of to check and make sure things are fine.
Nothing's going to happen.
Because the PSA hadn't grown up that much.
So technically,
PSA screening did not catch my cancer.
So based on the amount of my PSA change, wouldn't have warranted it.
But my family history and the age of my brother and father getting it is what warranted the check.
And then it turns out I did have prostate cancer.
So that's what warranted the surgery.
So I got caught when I was 52, I had a prostatectomy and they told me that getting a blood clot in your calves and potentially in your lungs was one of the complications of the
surgery and that I should walk around for at least five minutes every hour.
If I had any pain in my leg, give them a call.
So surgery was on Saturday.
On Wednesday, my right calf was kind of sore.
It's almost like if you ever done work where you're standing on a ladder and you're on your chip toes for a little too long, your calves get kind of sore from that.
So it was just like that.
It was just a soreness.
wasn't like, like pain, pain.
And then by Friday, it was still sore and I was taking six ibuprofen a day.
So I thought, well, I it's sore.
It doesn't hurt.
So I called my doctor and they called back and said to
You know, it's probably nothing, but you should get that checked out.
Either come into our urgent care or go to your local ER.
So I went to the local hospital.
Of course, they realized I was a week after the prostatectomy.
I was tachycardic, like on a like 115, 120 beats per minute.
So they did a echo on the legs and they saw a blood clot in my left leg.
Bear in mind, the sore were in my right leg.
They did not see a blood clot in my right leg.
They saw one in...
And they also did a CTA and found that I had a small clot in each lung, their sub-segmental tomylarian bull eye.
I knew a little bit about the calf pain because once I pulled a muscle in my calf, went to the local emergency room and they sort of said, well, we don't think it's a blood clot.
So I was aware that if you had pain in your leg, like felt like a pulled muscle, that that could potentially be a blood clot.
So just from that little pulled muscle thing I had.
some awareness to it and that it was really the other one.
was, the journalist David something or other in the first Gulf war.
was sitting on a tank for like four days, got off.
DVT let loose and he had a massive PE and died on the spot.
So that was like the first time, like in the general media that I was aware of it.
The next time was, one of the women I work with her, fiance was diagnosed with colon cancer, but they got it.
It looks like he's going to be okay.
They can do some treatment two days later.
He's dead.
It's like, what happened?
we had a blood clot.
So there was a time where now I've like, know somebody that's had a blood clot and you know, it will, the DVT emboli or whatever, thrombo embolized went to the lungs and he died
from it.
So that was sort of a, you know, one was in the general media.
Another was actually someone I know is Beyonce.
So I had some awareness to it.
And like I said, that my cancer center, had,
made me well aware that it was something to be on the lookout for.
When I was in the emergency room, the nurse, she says, I'm telling my colleagues that I've got a patient with three blood clots in them and he doesn't look anything like a patient
with three blood clots on him.
To which I said, well, what does a person with three blood clots look like?
And she says, they're usually dead.
So I said, and I figured, well, I guess I must be doing okay.
I knew blood clots weren't a good thing, but I figured I feel okay.
I'm in the hospital, they're taking care of me.
So while I was in the hospital, it was fine.
It was a couple of weeks after my doctors, my general practitioners, doctor's office called and said the doctor had liked to come in, like me to come in to see me.
So I went in and I said, I heard you had these P E's after your surgery.
said, I said, yeah, it was no big deal.
They were small ones.
He's like, well, if the good thing they were, we wouldn't be talking right now.
And that was sort of the aha.
I'm going to.
okay.
And mine were below the knee, so those are supposed to be not as dangerous, you know, because the higher up they go, the bigger the vein, the bigger the clot and whatnot.
And I think because I just had, within the week of the abdominal surgery, I think they were taking a lot more seriously.
And the ER doctor said, if we were in Europe, we'd release you because it's below your knee.
They wouldn't even treat it.
They'd say, go home.
It's only in recent years where they do an echo on it that they can actually see them now, because I think the older technology
the veins were too low below the knee, wouldn't even see that per se.
My GP told me if you stuck a hundred people in a room, I would have been the last one anyone would have picked to get it.
Have a blood clot after the surgery.
The clotting risks associated with surgery can be terrifying.
Knowing that these complications stem from oftentimes life-saving procedures just makes these subdued clotting events that much more nefarious.
However, when it comes to being informed, the best you can do to prepare is communicate, inquire, and recognize the risk factors beforehand.
Here to discuss the clotting risk for people with hereditary predispositions to cancer and how to communicate risk effectively.
From Memorial Sloan Kettering, this is Dr.
Avi Leder.
That individual that has prostate cancer, if I were to meet him beforehand, just for discussion about the risk of blood clotting, I would actually tell them that prostate
cancer is associated with a relatively low risk of blood clots.
The fact that you are at low risk does not mean that you're not going to have a clot.
the fact that you're at high risk is not mean that you're going to have a clot, but it is about probabilities in life.
Right?
So that's mainly for us.
think for us as a group of doctors, physicians,
Ideally, we would be able to select the higher risk group for more intensive education and prevention and the lower risk group in which you save them some of those worrying
situations.
But I would tell that patient that if they were going to surgery, they should ask the surgeon about a prevention of black clots because hospitalization and surgery
Even if your cancer is a low risk blood clot cancer, the surgery in itself, you just pull someone off Fifth Avenue here and put them in hospital for five or six days and they have
surgery and they were healthy, their risk increases.
So the surgery is a big thing.
I say this every time, but I feel like we need to clone you because of your willingness to just talk about your whole health experience.
We just don't have many men that are so open about things, so it's great to have your willingness to do so.
So here's a question for you because you're so very matter of fact about everything when we chat.
And I was like that too when I was diagnosed.
And then when I started to like do my research on what had happened and when all of the statistics look like it massively raised my anxiety.
What was your experience like when you started to kind of delve into learning about blood clots?
Cause it's one thing when you're in the hospital and you're, you've got great care at MSK and hey, you should be aware of the following things, but
Did it do a number on you at all after the fact?
Yeah, it more after.
Yeah.
And actually it was a central New Jersey hospital that I was at for that.
So all my blood clot related stuff wasn't done at the cancer center.
It was done locally.
But MSK had told you to be on the lookout.
Okay.
That's where I have the surgery.
there, you know, when I call, they said either come in to see us or go or whatever.
so tell us about the after.
Yeah.
So after, so like, like I said, when I saw my general practitioner, you know, at first I was like, they're small blood clots, like no big deal.
And then he sort of said, well, if they weren't, you know, then it's a lot more serious.
So that was the first aha moment that, you know, that you start learning a little bit more about it and stuff.
So I ended up, so I was seeing a local hematologist, the same doctor I had in the hospital.
continued to see them, afterwards.
So.
The P E's actually cleared like within a month or two, because it was maybe it was actually five weeks after surgery, right before I was supposed to go to work.
And one morning I just felt really weird.
I called my wife up to come get me, went to the emergency room to get check docs.
just felt, and they looked, everything was, they didn't see anything in the fact, the CTA shows the blood clots have now cleared or whatever.
So I don't know if it was just a, what they call the phasovagal response or something.
You know, it's almost like if you think you're not feeling right, you can almost get yourself into like, I don't know if shock's the right word, but you think something wrong
and there isn't, it just sort of, so those actually cleared pretty quickly.
And I saw the hematologist fairly regularly and they do the echo on the leg.
And again, like I said, that the cloth that was seen was in the left leg, despite the pain in the right leg.
and the clot was sort of still there.
So I was on Xarelto for a while.
mainly, and then it seemed like the clot was stable.
So after, know if was like six or nine months or a year or something, went off for like a month.
They checked my D dimer and then that was still a little elevated.
And the whole time my hematologist would say, well, it's risk versus reward.
You know, we keep you on it because the reward outweighs the risk.
You know, so each time we went through, was a shared decision making thing very much.
so then I went back on for a while.
And so was, I was on totally for like two years and then finally was off because the, the DVT and the, the cap seemed fine and everything like that.
Did you have any concern about coming off of it?
yeah.
Cause I mean, when you, when you're on the, anticoagulant, at least it's like, you know, 90, 90, whatever, 5 % of people aren't going to have a recurrence applied.
So it's not a hundred percent, but at least you realize while you're on it, you're, you're, have.
very good protection.
Yeah.
Cause so I wasn't that worried about recurrence of my prostate cancer because if I had a prostate cancer recurrence, you know, more than likely, yeah, I'd have to go through
radiation or, but in terms of it killing you probably would take a while versus you get another blood clot and you could drop dead.
So the, the blood clots were, were almost kind of a, and that I wasn't expecting.
Like when I was told I had prostate cancer, I'm like, well, I this day was going.
Cause a lot of people say they hear they have cancer and they don't hear what the doctor says.
I remember every word he told me, because I knew that that more than likely was going to happen.
it wasn't, but the blood, having getting the blood clots, that was unexpected that I didn't, expect would happen nor potentially realize the potential lethality of.
You know, have it having a blood clot.
think the conference we were at, I believe they had said 20 % of cancer patients get a blood clot at some point.
in time.
Yeah, it's the second leading cause of mortality for cancer patients behind the cancer itself, which is mind boggling when you think about it.
Especially pancreatic, guess, is especially high.
Yeah, there are certain that are higher risk.
Yeah, I was in the same camp.
Like once I started actually doing my research and I'm a researcher by training.
So I was like, my God, these numbers.
And then, you know, I realized how very lucky I was and how very lucky I was that I got treated relatively quickly.
also, so one of the things I also wanted to touch on, you've had time to kind of reflect upon all of this and like you got treated at, for your cancer at MSK, which is a world
renowned institution.
You live in a metropolitan area or close to it, so you can get access to healthcare.
You've been a real proponent of your own health, which I think is just so critically important for people, especially if there's a family history.
So you have this platform now.
What do you say to people and men in particular about getting real about your own healthcare?
If you know there's a family history of something, you know, how do you deal with it?
Like recommendations to Joe Q public about your health, your own healthcare journey.
Cause you really took control of yours.
Yeah.
Well, my other brother who didn't have, who hasn't had prostate cancer, he started, has a saying.
how would you like your pain now or later?
And later is usually worse.
So it's easy to put your head in the sand.
And I've done it.
Everybody's done it.
I don't want to worry about that later.
But ultimately catching something earlier is going to be more treatable, less painful or whatever.
I think if it's something at some point when you finally realize, you know, I need to get this looked at, know, because if you don't, it's
you know, it's going to be worse later on as you do things.
So if, at least if you think of the, I want less pain now or more pain later, you know?
But the prostate it's, it's so interesting.
You know, that is something that men should be aware of.
And you know, you are out there, you know, advocating for awareness.
So, you know, you've kind of, don't know if you're the reluctant advocate now or you're being dragged into it by a national blood clot Alliance, Memorial Slung Kettering, but you
know,
Where do you see this going?
You've got, like I said, you've got a platform.
People want to hear a story.
You have the ability to help influence people think about their health journey in a really good way.
Like, how do you see this developing for you?
From the blood clot standpoint or?
All of it.
I mean, from hereditary cancer, I also volunteered force facing hereditary cancer empowered.
So I'm already doing a lot of stuff with them in terms of the hereditary cancer and the things.
So I think it's something like 10 % of cancers are hereditary and usually hereditary is early onset.
The average is like 66 for prostate cancer and early onset is before 55.
Much like women would breast or ovarian, know, C-carp cancer in the thirties or ovarian in the forties and whatnot versus at older ages.
So I definitely, you know, work in that camp.
And the problem is like on the prostate cancer, and there's a lot of this.
it's over treated.
We don't need to screen anybody, which if you're at average risk or normal risk for a disease, that may be quite true.
You're at average risk.
Maybe we don't need to screen, but if you're a high risk individual for whatever the disease is.
you know, my case, the blood clot was more a complication of surgery.
There are people that have clotting disorders that put down that risk for that.
So certainly, you know, if, if, if you're in a family where there's a hereditary history of
of DBTs or PEs and whatnot, that's probably something that, you know, to be aware of, you know, whether it's, you find out, you have this disorder or not?
Cause that is one thing the hematologist said when they checked me and said, yeah, we did all the tests on your blood and you don't have any pre, you don't have a predisposition to
blood clots.
At that point, I wasn't necessarily aware of, okay, what are all these different disorders and so forth.
Once you have one of those clotting disorders, you know, most people are going to know it a lot.
You know, more readily.
So once she said I did, I wasn't predisposed to it.
really didn't give that end any more thought, but, certainly fear of recurrence of the blood clots occurring.
anytime I'd have like some soreness or pain in my calf or my thigh, you know, it's like, this it again?
Is that said again, emergency room, am I overreacting?
Am I, so needless to say, you know, a few cases I made the point of my hematologist.
you know, a couple of days later, then you should you be waiting days by thought, well, I don't think it's urgent, you know, cause anytime anything happens, you think, do I need to
go to my, local doctor in a couple of days?
Should I go to an urgent care center?
Do I need to go to an emergency room or somebody you're with?
So you always kind of run through what's the appropriate thing, you know, or do you take two aspirin and call your doctor and, know, the famous take two aspirin and call your
doctor in the morning.
So you always sort of look at.
where do things appear to be and what's the right step to take and so forth.
So yeah, there's a few times where I'd end up, and probably more than a few times, like after an airline flight, my heart rate was up.
Yeah, I had PEs before.
So it's like, okay, well, we just want to rule it out because you've had it before.
You were just on a long flight, even though I wasn't presenting with any leg pain or whatever.
The elevated heart rate was enough that, you know, they did a quick CTA to go, no, there's no P E's in there.
You're, okay.
So it's certainly, I think once you've had a blood clot and everyone I run into any of the, you've had a blood clot already.
That puts you at higher risk.
You could get another one.
So any medical professional I've been to is at least been aware that because I've had one, their radar goes up and immediately that, you've had a word clock before and they're
taking it seriously as to do we need to rule it out?
Is it something that's going on?
or whatever.
and then I think I told you, or I talked about, it was like, I think a highly weeks after the surgery or whatever.
And I was at home and I felt a twinge in my thigh three seconds later, a twinge in my lung.
And all of a I started like blacking out and I thought, you know, cause it's like, well the blood clot let loose.
just went to my lung.
And, again, was that more of a vasovagal thing where you like talked yourself into
And I was starting to go out and I thought I was dying at that point.
It was really, it was kind of scary.
And then it went away and I was fine.
It's like, you hold your breath too long, you get a little lightheaded and then you, so, and then I was fine.
was thinking, my God, what was that?
I mean, I actually called my hematologist office.
It was kind of late and I forget what they said.
And ultimately, yeah.
Cause again, do I go to an ER right now?
And it just seemed it come into.
came and went and I just kept an eye and it was kind of okay.
So, you know, I did evaluate sure I've been going to an emergency right then and there, but because it kind of came and went, it didn't seem to be, I forget if we had the white,
the Apple watchers and now it's good.
look at the Apple watch.
So every time I go on Mary hat and my heart rates always elevated.
Hey, hey, I love.
All right.
My heart rate's 104.
I'm sitting on the train.
Is anything going on here?
And then I do my thing and I come back and then my heart rate back down.
So I'm at least used to, if I go into Manhattan, you're usually, you know, it's hustle, buffle, what fought for, you know, crime.
So I don't know if your adrenaline's up a little bit.
certainly yeah.
Any heart rate being up, that's of course more of the pulmonary embolism than a DBT.
You know, so you're aware of these things to know to be on the lookout.
So, it can always be a little, like, like I said, I had a bigger fear of a blood clot recurrence and dying from that than a prostate cancer recurrence.
That's why, know, your voice is so important to, know, to us in the thrombosis world, because you've experienced it and you can talk about it talk about it, but until you
actually experience it, it's a different.
It's a different story altogether.
So, you know, I think it's important that because VTE, these blood clots, you know, I often refer to them as sometimes they're the bride and sometimes they're the bridesmaid,
i.e.
they attach themselves to other things like cancer, you know, using your voice to say, hey, I had prostate cancer, but I also had this.
And you guys should also just be aware of this in the event that, you know, you have surgery or what have you, just to make people aware because that will save lives.
And also, you know, if you feel a twinge and you were smart, you know, like go to the doctor, go to the emergency room.
I'm like, I'm glad I eventually went because my outcome could have been a lot worse.
And I was the person who was trying to talk myself out of there was something wrong.
And there was something wrong.
I didn't know what it was, but I think, you know, always err on the side of caution and rule it out.
Just like you were saying, do you want your pain now or do you want your pain later?
And later's work.
But later is always worse.
Usually it is always worse.
So,
Michael, just want to say thank you so much for joining us here today.
Your story is amazing and then we're so happy that you're okay.
And also thank you for helping us to raise blood clot awareness.
It's so important to have people like you doing so and in particular to have men who are willing to share their stories because your story will share, will save lives.
Thank you.
It is my pleasure and usually, you know, everyone wants to hear about my prostate cancer stuff and the blood clots like a
yeah, I some blood clots, but it worked out okay.
So it's kind of interesting to actually now have a platform to actually discuss that part of things.
Cause not everybody's necessarily aware, especially if you have 20 % of cancer patients having blood clots at some point.
I don't know the percentages of how many become fatal P E's necessarily, but at least, I guess the lucky thing, if you know you're in a high risk group, you can look out for it.
So it's, tougher if.
you get a blood clot for no reason at all.
You don't, you don't understand.
So at least if you know you're in a high risk group, can try to be aware or monitor or whatever you need to do.
Awesome.
Thank you.
We want to thank Michael once again for sharing his experience and vulnerability here today.
A special thank you to the exquisite Dr.
Avi Leder from Memorial Sloan Kettering for his impeccable expertise.
Thank you for joining us here today on another episode of Taking a Breath.
For more information on risk prevention and community, please visit stoptheclock.org.
We know the patient because we are the patient.
Together, with listeners like you, can collectively stop the clock.
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