Steve Z.
Cancer-Related Experience: Elevated Risk
Type of Inherited Risk: A polyposis syndrome
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Steve Z’s thousands of colon polyps were first identified when he had a routine colonoscopy in his late forties. He had been experiencing symptoms such as stomach pain, not eating, and going to the bathroom many times a day for a year beforehand. He “didn’t think anything of it,” though, because he had gotten used to living that way, and because his doctors thought medicine he was taking for diabetes might be causing the problems he was experiencing. He knows it was “a good call on my part” to make the colonoscopy appointment because if more time had passed, his providers say it might “have been past the point of being able to help.”
Most of Steve Z’s colon was surgically removed not long after his diagnosis. The surgery was difficult, but he recovered quickly. Two friends with similar medical experiences have been very helpful with ideas about how to manage necessary changes in things like diet, the need to be near a bathroom, and getting on with activities he enjoys such as golfing. Steve Z is able to work the same as before the surgery, just missing days when he goes for additional screening tests and timing his intake of specific foods and liquids so he can be present for his work without too much interruption. On the whole, he says the experience “didn’t really change a whole lot” in his life because he “kind of does things the same,” and is “the same teacher, I think. Same parent.”
Steve Z’s medical team worked with him and his family to find out if any relatives had similar issues with polyps, but there don’t appear to be any affected relatives. Genetic testing has not yet clarified a diagnosis either, because the tests weren’t able to generate “enough information to say that you have the gene for that, or that you don’t have the gene for that.” Nobody quite knows why his colon had all those polyps, but “they find new genes all the time” and ask Steve Z for permission to do additional tests. His medical team is always asking him new questions, and he knows they continually think about how to get answers to questions about what is causing his body to create polyps. In the meantime, they treat him like he has a genetic polyposis syndrome, even though they can’t identify which one. His wife has always been extraordinarily supportive, including by taking notes before and during visits to doctors.
Making sure his children are as healthy as possible is Steve Z’s top priority and primary reason to keep pursuing tests to identify a potential genetic link. Also very important to him is regular screening to catch and remove any additional polyps early; he has never had cancer, and wants to “keep… ahead of it” so the polyps don’t get a chance to become malignant. He decided to do an interview for this project so he “could help others” and let it be known that even though “they don’t know why things are happening to me the way they are,” it has all “come out pretty well. I feel great… my day is good…even while managing all this stuff, I feel good in between.”
Steve Z. had experienced severe symptoms for at least a year before his colonoscopy revealed extensive polyps.
Steve Z. had experienced severe symptoms for at least a year before his colonoscopy revealed extensive polyps.
Can you talk a little bit more about getting the results of the colonoscopy, and what that news was like for you to receive?
It wasn’t bad. I mean, I knew something was wrong.
Based on your symptoms?
Yeah. I mean, I felt terrible. I couldn't get through my day at school, because I was going to the bathroom-- at that point-- 25 times a day. And I wasn't even eating. So it was good to finally get a you know, this is what it is. And then my local doctor said, “all right, you should go down to [LOCATION].” And at the same time, sharing with my friend. He's like, well, you need to see my doctors.
Yeah.
So even when I got the diagnosis, I think it was almost a sense of relief. All right. I know what it is.
Yeah.
And manageable. You know, it's not like, you got all these polyps. You're going to die.
Right.
You have these polyps. You're going to get your colon out first. And then we'll go from there. And then each thing will go from there. So-- I don't know.
Right.
Yeah.
So it wasn't a shock?
If I did, it was a shock that I actually went to the doctor's-- you know, that I even went and checked. Because I'd gone a year feeling this way. I didn't think anything of it. I could have easily gone another year. I was getting used to going to the bathroom. You know, it certainly wasn't a good situation. But I mean, how often do-- I would never. I'd get a card in the mail, and my wife would say, hey, you gotta call, or, yeah, I'll call. Or, hey you gotta call. And he never called. It's just a little card.
Yeah.
So, I mean, the fact that I did it was a big deal. I would just-- I always lived with it for a while. And then I would have probably not lived very long with it. So that's what they said. They said if I'd gone another year, it would have been past the point of being able to help you. So, it was good. It was a good call on my part to call that phone number.
Were you seeing a PCP-- a primary care provider--
Yeah. I was-- yeah.
And talking about the symptoms, and the--
We had, but we were talking about diabetes.
Got it.
So it never even entered my mind that something else was wrong. Hey, how you doing? Ah my stomach hurts. You know, and- and when you read the list of side effects for metformin-- for my diabetes-- you know, that's part of it. Everything that was going on was a side effect of the medicines I was taking. So I didn't think anything of it.
Steve Z.’s doctors continue to try to make sense of his genetic results.
Steve Z.’s doctors continue to try to make sense of his genetic results.
So they went into the genetic testing piece. They still couldn't be sure of why. They ruled out FAP. I don't even know-- polyposis is the last one. I can't--
Right. Polyposis syndrome?
Yeah. So they didn’t have enough information to say that you have the gene for that, or that you don't have the gene for that. So they treat me like I do. They don't really have an answer of why my colon had all those polyps, because gene-wise, it doesn't look like I have that genetic makeup. So that's where-- they find new genes all the time, so they’ll call me up and say, “hey, do you want to get-- do you want us to run your stuff again just to rule this out?” I always say yes. It doesn't really impact-- you know it's good to know. You know, obviously, the kids went through it, so.
Steve Z.’s clinicians keep offering new tests and he keeps saying yes.
Steve Z.’s clinicians keep offering new tests and he keeps saying yes.
So they went into the genetic testing piece. They still couldn't be sure of why. They ruled out FAP. I don't even know-- polyposis is the last one. I can't--
Right. Polyposis syndrome?
Yeah. So they didn’t have enough information to say that you have the gene for that, or that you don't have the gene for that. So they treat me like I do. They don't really have an answer of why my colon had all those polyps, because gene-wise, it doesn't look like I have that genetic makeup. So that's where-- they find new genes all the time, so they’ll call me up and say, “hey, do you want to get-- do you want us to run your stuff again just to rule this out?” I always say yes. It doesn't really impact-- you know it's good to know. You know, obviously, the kids went through it, so.
Steve Z. says his team really knows how to talk to patients who are anxious.
Steve Z. says his team really knows how to talk to patients who are anxious.
And I didn't have a lot of questions for him, but he just put you at ease with knowing what's going to come up next. And I think that was the big part-- you know, how they put you at ease in what was going on, when all you have is questions, like, oh my god. “First of all, do I have colon cancer? Am I going to die?” And, you know, they just know how to talk to their patients. So I was lucky that way. You know? And then everybody I've worked with since down there-- it's the same thing, because they're all under this guy. It's a team. Never seen anybody in isolation, really. It's always been a group of figure problem solving on behalf of me, which is really nice. I didn’t-- if I have a problem with school, I figure it out.
Steve Z. prefers not to discuss his health with colleagues.
Steve Z. prefers not to discuss his health with colleagues.
Yes, so well, obviously, when I missed a month and a half--
They knew.
They knew something was up. I didn’t really share it with anyone who wasn't-- my friend I teach with, who recommended the doctors down at [Institutions]. Obviously, he knows. And then some of my close friends. But for the most part, I just kept it to myself. So, way easier. You know, I don't want to answer, oh, “how you feeling,” all that stuff. I feel great.
Steve Z. missed work for surgery to remove polyps, and now manages symptoms on the job.
Steve Z. missed work for surgery to remove polyps, and now manages symptoms on the job.
At one point I was going twice a week. I'm like, oh my god, afterwards, you know, going so much. Never thought I'd go to the doctor's that much. I missed school. I missed a lot of school.
Around the surgery?
Yeah. I left school mid-May. Took the rest of the year. Had the surgery, like, middle of June. And I was good in September to go back, so missed a month or something like that. I guess that's a lot for me.
---
I go to the bathroom a lot. Like they give me medicine for it, but I don't-- I'd rather just go to the bathroom, like 10, 15-- 15 times a day I go to the bathroom. So that's [INAUDIBLE]. That's the part you get used to. I've been used to it. My bathroom's right next to my classroom. Get through my day fine, or I won't eat. You know, once I get to school, I know what kind of day I have. So just the day to day figuring out the diet part-- that's been the most difficult part.
Steve Z. explains his circumstances to some people at work, but not to everyone.
Steve Z. explains his circumstances to some people at work, but not to everyone.
Do people at work know why you're taking these periodic days, or are you just saying “I need this time?”
Yes, well, obviously, when I missed a month and a half--
They knew.
They knew something was up. I didn’t really share it with anyone who wasn't-- my friend I teach with, who recommended the doctors down at [Institutions]. Obviously, he knows. And then some of my close friends. But for the most part, I just kept it to myself.
---
My principal knows, obviously, because there’s days where I gotta go, I just-- I would just go, I'm going to go home. Work's done or whatever. But my principal knows, and leadership knows.
Right.
Because they, again-- you have to fill out-- miss that much time, obviously, doctor's notes, things like that. But no. I don’t say a whole lot. I don't share it. With anyone, actually.
Steve Z. says his next surgery will happen when the number of polyps he has makes that necessary.
Steve Z. says his next surgery will happen when the number of polyps he has makes that necessary.
Get all the polyps at once. I had other polyps in other places that they felt comfortable about taking out. Some in my throat, some in my stomach, but, you know, a few thousand in my large intestine. So that was the plan, just to take that out, and then frequent checks after that to see if they're growing back. And that's just a number thing. If there's more than a certain amount, they would take the rest of my colon out.
Steve Z. felt confident he could adapt to future surgeries.
Steve Z. felt confident he could adapt to future surgeries.
Because if it's not good news, I mean-- it's fine. I mean, you know, if it's something-- another procedure, or getting a bag, or losing another organ-- I don't know. You can kind of figure that out as you go, you know, if it's worse. Fortunate to have these last few years. So I don’t really worry about it. I think it's-- again, I trust who I'm going to.
Steve Z.’s experience recovering from having his colon removed changed radically when someone in his community fixed up the yard he sees through his window without even being asked.
Steve Z.’s experience recovering from having his colon removed changed radically when someone in his community fixed up the yard he sees through his window without even being asked.
But the fact that I had a circle of friends and family that really were there, that's a big deal. It made the whole thing much easier, you know? When you're-- you know, I spent the month in the house after the surgery. I couldn't really do anything. Actually, it might be even longer. But, you know, my lawn looked like crap. It was terrible. And I'm sitting in my house, and the only thing I see is my yard. And, you know, the kids are working. Everybody's kind of busy. And the one thing that was driving me crazy is my yard. You know, it looked terrible. I know it sounds silly. But then one day, I was actually at the doctor's, came home, my yard was done. A family that plays baseball with my son owns a lawn care business. And they just came through, and he stopped the truck, got his crew out, and they cut it. It was like, wow. It was the greatest thing ever. I'm like, oh my god. Because all I was thinking about, every time I looked at my yard, was, oh my god. It looks like crap. I got to fix my yard. But I probably would have started to do it, but-- because I wasn't supposed to. I tried to follow the directions of the doctors. But he did it for me, and it was like the biggest deal. You know, it was really nice-- unexpected. But man, it made me feel good. Because, you know, I want my yard-- I want it to look good. I spent a lot of time on it. All of a sudden, because I can't do it-- you know, it was really, really nice. And I see the guy all the time, and I’ll never forget that piece. Again, that was just a guy from the community-- somebody I knew-- a friend. But certainly, he didn't have to stop and do it. And it just kind of changed my whole-- I would go, like, wow. My yard looks great. I feel good. Look how good that looks. So it was a big deal-- out of the blue, too. You know, nobody asked to do it, so.