Testicular Cancer Awareness - A Conversation with Scott Petinga

April 18, 2019

As a testicular cancer survivor and founder of the Center for Advocacy for Cancer of the Testes International (CACTI), Scott Petinga discusses with Charles Ryan, the importance of men to perform monthly self-exams, and seeking medical follow-up with urologists who are experienced in testicular cancer treatment if a suspicious lump or abnormality is suspected.    Self-exams are the way most cases of testicular cancer are detected early.  Scott shares his diagnosis, the challenges he faced and continues to face.  He shares the impact of his personal journey over the past 15-years since he was diagnosed with testicular cancer.  Beyond testicular cancer he delivers a call to action in driving men's health awareness, so that young men engage in having a primary care physician, so they stay engaged in managing their health and do not wait until they are ill.   


Scott Petinga is a philanthropic entrepreneur and testicular cancer survivor. He is the Founder of Center for Advocacy for Cancer of the Testes International (CACTI) and the TH!NK DIFFERENT Foundation. He is Chairman and CEO of The Neat Pig Group and author of No One Ever Drowned in Sweat.

Charles J. Ryan, MD, The B.J. Kennedy Chair in Clinical Medical Oncology at the University of Minnesota and Director of the Division of Hematology, Oncology, and Transplantation. 

Read the Full Video Transcript

Charles Ryan: This month, April, is Testicular Cancer Awareness Month. I'm delighted to have with me Scott Petinga, who's a friend and a testicular cancer survivor. Importantly, he's the Founder of the Center for Advocacy for Cancer of the Testes International, which is easier said as CACTI. That is an advocacy and research center for men with testicular cancer.

Scott, so glad you could join us today.

Scott Petinga: Thanks so much, Chuck.

Charles Ryan: So, tell us a little bit about yourself and about what you're doing with CACTI.

Scott Petinga: Absolutely. So, fifteen years ago, when I was 31, in the prime of my life, I'd just got married, was intimate with my wife, and she found a lump in my groin. Of course, like everybody else, I turned to the internet to self-diagnose myself. I realized that most likely I had testicular cancer.

A couple days later, going through the medical realm, I realized that I indeed had Stage 1 seminoma. I immediately had what was called an orchiectomy, and that's a surgery to remove the testes, followed by ten rounds of radiation to the abdomen. Even though it's fifteen years later, and my disease was 99.5% curable, I'm still dealing with the side effects from that treatment.

What's interesting enough, I've realized that I wasn't alone. 27 deaths actually happen every year, globally, because of testicular cancer. Currently, about 9,500 men in the U.S. get diagnosed every single year. That's more than double than in the last forty years altogether. So, we definitely have a problem that men absolutely don't understand that this disease even exists. So, we have a huge awareness problem. Secondly, once they do get the disease, they're not sure of necessarily the steps to take once they do discover that lump.

Charles Ryan: I think you really hit on an important issue here, which is that this disease, while thankfully is deadly in only in a small minority of patients, can extract a cost on the patient as we treat it. Making the right decision and catching this disease early are the key facets around making sure that the treatment is not too burdensome and doesn't create illness in and of itself.

You point out that you had a Stage 1 seminoma, that is, I believe, still the most common diagnosis of testicular cancer. There are many other subtypes of it and many other stages of it: Stage 1-4, really. But, the Stage 1 seminoma is about fifty percent of all testicular cancer diagnoses. Very curable, but does require treatment.

Scott Petinga: Absolutely. I think the other thing, too, is ... The reason I wanted to create CACTI was I lived in a rural town at the time of diagnosis. Through Googling and search engines, I realized that I needed to go see a urologist, so that's exactly what I did. I found the closest urologist, walked into their office. They had an Ivy League diploma, they were much older than me, so I just assumed that I was in good hands. Unfortunately, what I've realized is, because the disease is so rare, not every urologist has even seen a testicular cancer diagnosis in their career.

So, I didn't want anybody to go through the treatment that I went through. A lot of that came down to is ... The reason I have the side effects that I do today is because the team that diagnosed me and treated me just didn't have the skillset, the knowledge, the information, to provide me with the best adequate care that I needed.

Charles Ryan: You were probably the only testicular cancer case that that urologist saw that year; and that's not a knock on him, it's a rare enough disease that it is complicated for people to really keep up with the latest if they don't see many cases of this every year.

Scott Petinga: That's absolutely true. So, what I've learned through the last fifteen years and working with practitioners, such as yourself, you really do need to head to the big city to get treatment. Specifically, with testicular cancer, you need to seek out those individuals who've done it time and time again; those individuals who not only have the frequency every year but have the experience and are part of the research side of treatment as well.

So, that was the one thing was ... My premise is to try to make it better for those who follow in my footsteps. The first part of the CACTI website was not only giving information on about what happens when you're newly diagnosed, but we have an entire section called "Find An Expert". This is where we truly sought out the world-leading experts on testicular cancer. We've listed them, every single person here, not only in the United States; such as Baltimore, Boston, Indianapolis, Philadelphia, Los Angeles; but all around the world. So, I think that was so important at the end of the day, making sure that people like me find the right doctors to treat.

Charles Ryan: Yeah, that's great. That's a great message. Your case is one where you were receiving treatment in 2001, I think it was when you were diagnosed. You were receiving a treatment for Stage 1 seminoma that we really don't give anymore, radiation, in fact. So, it's a good example that that choice was made at that time. Now, if somebody were sent to me and was expecting to get radiation for seminoma, I would have to tell them that's not what we do, and, in fact, the research is showing that we can avoid that treatment.

Scott Petinga: Yeah, and I absolutely agree. I think, you know, secondary is so many doctors, oncologists in particular, often in the past have thought about what they needed to do and that's treatment of cancer. But, oftentimes, they've lacked thinking in the future and understanding through survivorship. What's going to happen to that patient five years from now based off the treatment we've given them? Ten years? Fifteen years? Twenty years?

That's been my push now, and CACTI's push, for the last three years. We're funding research and understanding what happens when you remove a testicle, in regards to the patient's fertility; in regards to the patient's hormonal levels, specifically testosterone, and what that leads to when it comes to fatigue, mood, and several other criteria, such as even cognitive function.

Charles Ryan: Right, right. That's something that you and I have spent a lot of time talking about, and we're actually doing research on here at the University of Minnesota.

So, Scott, one of the major issues around testicular cancer is that the incidence appears to be increasing in this country and in Europe. Do you want to speak to that?

Scott Petinga: Yeah. Thanks, Chuck. Interesting enough, the rate at which men are getting testicular cancer has increased almost by three times over the last four decades. A lot of it comes down to men are just unaware of the disease itself, and also how to do any type of self-exams in order to catch it early. There are so many now, organizations out there fighting the fight specifically like CACTI, all mostly run by former cancer survivors, who had never taught themselves, now trying to educate the next generation; so that what happened to us doesn't necessarily happen to them.

Charles Ryan: It's possible that ... You may know more than I do that the increased incidence that we're seeing is actually a good thing in that it is the result of earlier detection, and that maybe men are finding themselves with Stage 1 disease in the shower as opposed to finding out that they have Stage 2 or Stage 3 disease in the emergency room.

Scott Petinga: I think that could be a part of it. Most of the people that I have heard from through the CACTI organization and some of my other nonprofits seem to all be in intimate relationships. I think oftentimes what we're finding out, at least in the research, is 7-10% of men are discovering their lumps when they are in that intimate session. So, I think when you're put in the position to be more aware of, essentially, your testicles, I think increases your likelihood of knowing what's feeling right and what's not. But, oftentimes, too, I've had countless men tell me that due to their significant other ... They're alive today because he or she found a lump.

But, CACTI did a campaign a couple years ago that said, "He's not your doctor and she's not your doctor." We have to think about that, right? You can't rely on that moment of passion to find a disease. Right? We, essentially, have to do our own job and check ourselves because that's truly what's going to be in our best interest.

Charles Ryan: Yeah, it kind of dulls the whole idea of the moment of passion if you think about it. But, I think the key is that intimate partners can be instrumental in this process. I think that's great that you brought that up.

So, let's talk a little bit about ... Let's talk to some men out there who are healthy, they're enjoying life, and they're listening to this and they're wondering what they should be doing about making sure they get checked. Should they be going in to see a doctor? Should they be checking themselves? What's the perspective that you have?

Scott Petinga: First and foremost, I recommend: perform a testicular cancer self-exam, once a month, in the shower. It takes less than two minutes. There's a tremendous amount of self-exam flyers out there. Specifically, at CACTI, we have our own listed on the website. It's a pretty easy procedure. You hold the testicles between your thumb and fingers of both hands and roll it gently between the fingers. You're essentially trying to understand the size, shape, and feel. Normal testicles feel soft and they move freely in the scrotum. That's the easiest thing to do. If you do happen to feel that there's some type of lump or a feeling that just doesn't resonate with you, then seek medical care.

Charles Ryan: I should also point out that all men are probably going to be a little surprised if they start examining their testicles closely, that they are going to feel some lumps; but they won't be in the testicle. They'll be feeling their epididymis and the posterior, the back part of the testicle, is going to feel a little lumpy to them. It's not uncommon for men to start doing these self-exams and to feel something that they think is abnormal that is perfectly normal. My point is that if you begin to do the self-exam, you'll quickly realize what is entirely normal.

Just as a physician, I will tell people that the nice thing about nature, in this case, is it's given us two of these things. So, one thing you want to be looking out for if you're doing a testicular self-exam is compare one side to the other; because for the most part, the testicle on the right side should feel smooth in the front and it should feel the same way on the left. If you feel a bump there that's not on the other side, that would be something that you would want to be aware of.

But, I just put out there that the testicles do kind of hang down. They've got this thing called the epididymis, which is sort of this ropy material behind it, and that's perfectly normal.

Scott Petinga: Interestingly enough, though, which most people don't even realize, particularly most men that I speak with, is one testicle's often slightly larger than the other.

Charles Ryan: That's right.

Scott Petinga: One also hangs lower than the other.

Charles Ryan: That's right.

Scott Petinga: So, oftentimes, when people are doing it for the very first time, they get freaked out a little bit because they're like, "Oh, my God. One of my testicles is larger." It's like, no, that's truly common, particularly if it's just a slight notice.

Charles Ryan: Of course, we really do want to promote self-exam, but I think it's very reasonable for a man to go to his doctor and say, "Hey, I want to do a testicular self-exam, can you show me what I should be looking for?" Or, if they have any worries that something might be a little bit abnormal, they simply go to a doctor, they get it checked out. Chances are pretty good that some of these things are going to be completely normal, but they'll then learn from their doctor what they should be checking for and how normal things feel, basically.

Scott Petinga: Couldn't agree more.

Charles Ryan: So, great. I actually think there's another upside to doing testicular self-exam, and I just sort of referred to this, is that we really want young men to have a relationship with their doctor. There's a lot of men's health-related issues that do arise between the ages of 21 when they are no longer taken care of by pediatricians, and 45 or 50 where they begin to start having older people's problems and need to be seeing doctors for those. So, I think there's a real advantage to doing what I just said. Go to your doctor, talk about testicular self-exam. It is the most common solid tumor in men in that age group, so it is something that they need to be aware of.

But, there's also this benefit of establishing primary care; getting your blood pressure checked, getting your cholesterol checked, and those types of things that can go along with learning this testicular exam.

Scott Petinga: I think more importantly, too, is when you even do get diagnosed with a disease, regardless of the stage, you really do need to seek out a peer group. There are several that I belong to and I'm a huge proponent of, the reason being that, oftentimes, you might not have any friends and family that have been diagnosed with cancer and who've been through it and understand it. So, it's so great to be able to speak to somebody who's essentially had the same diagnosis as now you have and has been through it and has overcome it.

So, two that I highly recommend is one out of Chicago called Imerman Angels, phenomenal group; the second one is a subsection of Stupid Cancer called Instapeer. Both phenomenal organizations that have helped so many other people, like myself.

Charles Ryan: So, how does that work? You go on Instapeer and they match you up with somebody in your area who's been diagnosed with a disease, and you get a chance to connect with them over the internet? How does it work?

Scott Petinga: Yeah. So, I've used Imerman Angels more often and I'm actually a mentor. So, think of it as like a Match.com for cancer patients. You put in your demographic information and within a couple days you get matched to somebody essentially your age, your geographical location, and your stage. Even though these individuals can't offer medical decisions and assistance, they have been through what you're going through six months ago, a couple years ago, so it's truly impactful just having somebody to vent to who understands. Oftentimes, whether it's your spouse, significant other or your girlfriend, boyfriend, whatever it is, they don't know and sometimes they just don't understand the burdens you're suffering.

Particularly with myself, I was 31 years old, essentially got diagnosed on my honeymoon, always wanted kids but then lost my fertility. I didn't know what to do and I didn't know who to turn to. So, having somebody to speak with who understands exactly what I was going through can absolutely help you mentally, emotionally and even physically.

Charles Ryan: That's great advice, that's great advice. I mean, I've treated many men with this disease over the years, and I will say over and over again that the support system that people bring to the table when they face treatment; not only their family and friends but also others who have been through similar experiences; make their course easier for them and I think really reduce the anxiety and some of the post-treatment effects that can occur.

Organizations like yours, and organizations like these that you've referred to, help people make the right decision. That's a key part of cancer treatment is making the right decision at the beginning because you can't undo some of the decisions once certain things are done.

You highlight all the important issues, fertility, sexual function, anxiety, and emotional health, that are critical to this, so I really want to applaud your advocacy on this point and your work through CACTI and Imerman Angels, as a mentor. We will hopefully see the word spread of your good work, and these organizations' good work, that can match patients newly diagnosed with this disease to the people who can help them make the right decision. So, thank you for your time today, Scott.

Scott Petinga: Thanks, Chuck. I truly appreciate all that you and your team have done to advance, not only this disease but so many other diseases when it comes to urology; and for being on the forefront of so many of the research opportunities that are out there.