Testicular Cancer Survivorship & Advocacy - Scott Petinga

April 27, 2021

Scott Petinga, a testicular cancer survivor, patient advocate, and entrepreneur, joins Charles Ryan, MD, to provide an update on his work in the field of testicular cancer advocacy. Scott Petinga shares research advances he is a part of at USC as well as different patient resource avenues like social media groups and online forums for newly diagnosed patients and testicular cancer survivors.

Biographies:

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, Minneapolis, Minnesota

Read the Full Video Transcript

Charles Ryan: Welcome. I'm delighted to be joined today by my friend, Scott Petinga. Scott is a serial entrepreneur, a testicular cancer survivor, and for today's purposes, a really outstanding patient advocate for men with testicular cancer, as we discuss during Testicular Cancer Awareness Month. Scott, thank you for everything you do for cancer patients and in general, testicular cancer patients specifically. It's great to see you and I just wonder if you might want to give us an update on your work and what's going on in the world of advocacy for testicular cancer?

Scott Petinga: Yeah, absolutely. Thanks, Chuck. Always a pleasure to be here and to talk to you and everybody else. I'm actually coming up on 17 years for my cancerversary, so on May 3rd it'll be 17 years since I was diagnosed. It's been a long road initially and still continued to be a little bit bumpy with some residual side effects from that cancer treatment. So I continue my fight and my thirst for more and more knowledge to make sure that no one ever has to deal with some of the ailments that I have.

But, luckily with that is some of the research that I funded have seen tremendous crossroads with Sia Daneshmand out at the University of Southern California. So we essentially proved that stage 1 and stage 2 testicular cancer patients now only have to have an orchiectomy, which is the removal of the testis and no longer need any additional treatment options such as chemotherapy or radiation, so I'm happy to be involved in that. I think that'll help tremendously with reducing the amount of ailments that cancer patients have been accustomed to having, so that's exciting stuff.

Charles Ryan: Yeah. Testicular cancer is really one of the models of a disease that was over-treated for a long period of time, and because of the work of Sia and others over the course of the last few decades, the amount of treatment that needs to be done to cure a man of this disease is being reduced, which is really exciting. It's really one of the leading areas of oncology where we're doing that, perhaps lymphoma is another one, and we're gracious to you for all the work that you did with Sia on developing some of these treatment algorithms. He and I had a nice conversation here on Uro Today a few weeks ago that I think has had a lot of views, so that's really wonderful.

We were talking before a little bit about social media and how patients get connected to one another. And as an oncologist treating men with testicular cancer, I'm frequently asked by them to connect them to people like you or to connect them to just somebody else who has this disease, because it's a rare disease, there's a lot of psychological implications, I think, to it, and there's a lot of fear that comes with this. Tell us a little bit about how people come to meet, not only you but each other once they're diagnosed with this disease? And what do you think this does for patients and their families?

Scott Petinga: Yeah, absolutely. I think it's pretty amazing. Social media is so vast these days. You have Twitter, Instagram, Facebook, are some of the bigger ones, but I've even seen some meetings on Clubhouse that have helped a lot of patients out as well. Sort of what we talked about a little bit, the fascinating thing, particularly about the method like both Instagram and Facebook, since they're both owned by the same company, is how powerful the AI is, and that's the artificial intelligence. It essentially knows everything somebody's posting, and then it starts making recommendations based off of commonalities that people might have. So oftentimes it knows that I'm traveled, I spend time in Los Angeles at USC getting secondary treatment, I spend time, of course, at Minnesota where it's my home, but I also spend time in New York and places as Miami. What it's starting to do, it's starting to recommend not only cancer survivors on people that I should know, but also people who are currently undergoing treatment.

And one such person I actually introduced to you, Chuck, came all the way from down under Australia, an entrepreneur, his father was in the midst of receiving a cancer diagnosis and was a little bit perplexed on all the different options, all the information that one could digest nowadays through a Google search, and a lot of misinformation out there, both in chat rooms as well as a mass media. So it's interesting to sort of make those matches when human lives actually come in to stake. And knowing that we can extend somebody's life, prevent some of those ailments, I think, is key.

And I think most importantly, and I tell people this all the time, if you're looking for the best-of-the-best doctor, go to Twitter, because that's truly where they are. They're the guys out there in the forefront, like yourself, like Sia, like Craig Nichols, who are talking about their craft, so proud of what they're working on, willing to share it. And again, it's a wonderful platform, and again, these individuals such as yourself, are willing to take conversations from anybody who's willing to engage. So I think that's the new medicine. It's no longer practicing in your office where somebody might not have to be able to drive the distance or have the insurance or the affordability to see a top doctor like you, but being able to literally sit across from the world's most elite doctors in any specific specialty and be able to get real down-to-earth, hands-on opinions.

Charles Ryan: It's really interesting you bring this up, because I think we're seeing a convergence in terms of the information flow with regards to social media and then now with the onslaught of telehealth that's happened with COVID. I do still a large number of my patient visits are via telehealth. It's created both an opportunity and a to do it effectively from the standpoint of, it's easy for me to log on to Zoom and talk to somebody. I don't necessarily have the time to do that for people who I can't take primary care of, and it's also an issue of, can I take responsibility for somebody I've never sat down with in person?

The answer is that we probably could do a little bit better. I could practice medicine and actually do consultations with patients who are not able to come into my physical clinic. Just by way of example, I've just re-instituted my California medical license and now I'm seeing patients from California. Where it used to be just advice, now it's I can take care of them because I can do it via telehealth.

And so the point is, is that a person, a young man diagnosed with testicular cancer now should not feel limited perhaps by the geography where he lives as dictating the doctors he must see. We see this now where myself and many of us are engaged in situations where we're doing consultations where people from all over the world who are looking for second opinions. And so I wonder if there are folks or platforms out there that men with testicular cancer can use to touch base with somebody who sees this as the primary condition that they treat. Real experts who do this every day.

Scott Petinga: And that's what you and I have talked about for a long time, and Sia and Craig as well, we call it the hub-and-spoke model, because unfortunately, I believe a lot of my ailments came due to the fact that I just saw a generalist at the end of the day. Somebody who was unskilled, unknowledgeable about the disease that I had, and therefore I got over-treated. So through one of my foundations called CACTI, and that's cacti.org, we actually are one of the only non-profits to list the best doctors when it comes to testicular cancer treatment all throughout the world. And these are doctors that have been validated by yourself, Sia Daneshmand, Craig Nichols, so you can feel comfortable and at ease at the end of the day if you see one of these doctors.

However, like we mentioned, is people don't necessarily have the ability to go physically see one of these doctors, so the more telehealth, the better. Or again, having that individual specialists as part of the care team where you'd be treated locally, but essentially your local doctor gets to call an expert in the time of need for that expertise.

Charles Ryan: That's been done as long as I've known about medicine. My father was an oncologist, and I knew that he would see difficult patients at our town in Wisconsin and he would call the experts around the country to get opinions and I know that it's still happens. But before it was a phone call for advice, doctor-to-doctor, and the patient wouldn't see the other doctor. Now, the patient can actually go on, do a telehealth visit with Craig Nichols, or perhaps I hope, and get his opinion and have him know the case.

That does a couple different things. One is it's great for that individual patient. It's also great for the doctors who do this, because you get exposed to all kinds of different permutations of this disease and its presentations, you get exposed to rare sub-types, you get exposed to unusual clinical situations. The one thing you hear from doctors over and over again is no two patients are exactly alike, and the more repetitions you get in treating a condition, the more nuance you see, the more subtlety you're able to pick up.

So I think testicular cancer is a great example for the hub-and-spoke model because of all the issues you identified. Over-treatment, it's rare. Expertise really matters and you have a lot of survivorship issues and community that develop from that diagnosis. In addition to cacti.org, are there other sources that you would recommend for patients or those who are newly diagnosed?

Scott Petinga: Yeah, absolutely. I think Facebook forums are wonderful place as well. These are individuals across many different diversity types, geographies, and the great thing about it is sometimes, oftentimes, there's also an oncologist that specializes in that disease that partakes in some of these conversations. This is highly valuable, because the biggest thing is, even looking for myself 17 years ago, social media was somewhat absent, and not only that is a lot of the information online, there was no depth and breadth as there is today.

So I think what's relatively important is to take that fear out of what you're experiencing, and the most unique thing, particularly about testicular cancer or prostate and even ovarian cancer, is it impacts so many different bodily functions. At least from my standpoint is not only did I lose my testicle that day, I lost my fertility, I lost my body's ability to generate hormones, I've experienced cognitive issues over the last 17 years and a bunch of other side effects that I mentioned from all the treatment options that were thrown at it. So to know that other people are experiencing those same things, puts me a little bit at ease, to understand how they're dealing with some of those. Particularly, there's something called scan anxiety. We're all familiar with it. It's that first 2 years where you're constantly getting bombarded with diagnostic testings to make sure those cancers don't come back or have spread.

And unfortunately, there's some people, like myself, who don't do well, particularly when you have an x-ray. So for whatever reason, how my body works, it always cast shadows on a chest x-ray. So every 6 months there was always a scare that I had a tumor and it came to a point where I stopped doing the x-rays because it was so problematic for my psyche and it really wasn't worth it at the end of the day when it came to a diagnostic output. But to be able to talk to somebody now about it, I get calls all the time, where he's like, "What can I expect? What should I know going in to make it a little bit easier so I can just spend the nights, the weeks before being able to sleep or not able to eat?" So to have a sounding board is tremendous.

Another organization I'd love to be able to give a shout out to is Imerman Angels out of Chicago, founded by a cancer patient, Jonny Imerman, a wonderful resource. You can consider it as a matchmaking service for cancer patients, active cancer patients. They understand you from a staging perspective and a treatment protocol, but as well as you geodemographically. Where do you live? How old are you? And they match you with somebody who's been through that exact same thing. So to be able to have a buddy to go along with it is just phenomenal, and unfortunately it wasn't around when I was there, but I've seen so many patients benefit from it. And again, I'm an Angel as well. So I get calls from essentially men going through it and just wanting to feel relaxed and relieved that this isn't terminal, this isn't a death sentence, that there's so much positive to come out of it, Even though at that moment in time it might feel dark and like the worst thing that's ever happened to

Charles Ryan: Right. Just as a point of fact, 50% of men diagnosed with testicular cancer, in the current era, have stage 1 seminoma, and stage 1 seminoma is usually treated with an orchiectomy and, in most cases, no further therapies needed. And so the prognosis for the majority of men treated with testicular cancer is excellent. The majority for the prognosis of that 50% with stage 1 seminoma is really excellent, and networks like this, connections like this prevent over-treatment, prevent the anxiety that can lead to allowing one to be over-treated. I think that's another thing, is people hear cancer. They think, "I've got to get it treated. I'm going to do whatever radical thing I have to do to get it done." And that's been one of the challenges around convincing patients they don't need anything further, and that's actually a key part, a big part of the community is understanding that that's okay.

You gave me another thought as you were talking, which is our electronic health records now are evolving such that a patient can go in for a scan on a Friday and anticipation for an appointment with me on Monday, and he can read his own scan results on Saturday morning. This is something I'm actually quite afraid of, not for my own liability, but from the standpoint of, it's a rare person who has a totally clean scan. We've got stuff on the inside of our bodies and people tend to read some of these things and get a little nervous and I worry about what patients are doing over thinking about that they don't have the context for before they see me on the visit.

So now of course, when I read a read a result, I try to, if I read a result in anticipation of the visit, I release it so that the patient knows that I've seen it, but also when I get them on the call or when I see them in the clinic, the first words out of my mouth are, "Your scans look fine. How are you doing?" As opposed to what we're trained to do, which is get their subjective take on life before we talk about the objective stuff.

Scott Petinga: What I think too is my biggest platform is the survivorship side. We've all talked about the diagnostic, we've all talked about the initial protocol that used to essentially make sure that the cancer isn't terminal, but I think the biggest thing is, once you're a cancer patient, you're always a cancer patient, regardless if you're in remission or not. And because cancer is relatively a new disease when it comes to young people, in longevity, I think it's going to be interesting the next 20, 30, 40 years, particularly testicular cancer is a young man's disease, 15 to 40. I was 31, so I'm 17 years in already.

Charles Ryan: Well, it's interesting. We're seeing now the 20-somethings who were treated and cured in the 70s and 80s, when cisplatin first came out, they're now in their sixties and seventies, those guys. And so now there's a lot of attention paid to these late, late effects of cisplatin chemotherapy. There've been some folks who have been studying that and its effect on cardiovascular outcomes and things like that.

Scott Petinga: And that's the thing, again, as I mentioned, is there's things I've never knew that would have impacted me because I think the doctor didn't even know, and because social media didn't exist, I wasn't aware of. So we never had the talk about, "I'm 31, I'm recently married, I want offspring, what do I do?" So luckily, years later, and with a lot of money, I was able to go through IVF and knock on wood, I have three beautiful daughters. But again, things I wish I would've known going in.

Secondly, I had radiation therapy. I have a tremendous amount of muscle atrophy in the radiation zone. Things I wish I would've known things. I wish I would've had an option. "We could have given you surveillance or we can give you radiation. Here's the pros and cons for both." I didn't feel like I had any options or any control over the outcome, which is unfortunate, which I know have changed over time, and now it seems that patients are now stakeholders in making those decisions that could be life threatening or life altering. I think the biggest thing is I know there is a bumpy road ahead, and this more so for me than some of the other patients, and why the reason I'm funding so much research and why I'm funding the research with you is to try to understand the why, the how, and then how do we prevent it and then how do we correct it?

Charles Ryan: Right. I think there's a lot of benefit to be gained from diving a little bit deeper on what you're talking about before with this hub-and-spoke model. There's a couple of models that work. One is Christian Kollmannsberger's model in, in British Columbia. It's been a while since I talked to him about this, but I believe what they do is they have almost everybody in the entire province of British Columbia who's diagnosed with testicular cancer, has a consultation with him and/or their team and goes through what the treatment recommendation is. So you don't have the issue of a doctor who sees one case every 5 years making a decision, and then you have the ability to capture the data for the whole province. I know that they were doing that a few years back. I think they're still doing it.

The other system, one which I've been exposed to, is out in California at Kaiser Permanente, for example. A big health system covers millions and millions of people, but everybody diagnosed with testicular cancer is presented at a tumor board in the system. There's a couple of my former colleagues who do that now and they have experience and they get an opportunity to discuss it. So it would be really interesting to see us develop something like that across states, regions. This is the kind of thing that you're talking about, and I really would like to see that develop, because it'd be good for the physicians as well as good for the patient.

Scott Petinga: And I think more than anybody, and one of the biggest issues with having a testicle removed is the impact on just the hormonal system, both testosterone and estrogen. When I first got diagnosed, no one ever ran a hormone panel. That has since changed. Working with a lot of the institutions, trying to make it a mandatory. We know it's only happening at the largest institutions. It really needs to happen at all institutions. When a guy comes in, an orchiectomy is deemed necessary, they really absolutely need a hormonal panel upfront to understand the deprivation, short-term as well as long-term. Because I've known myself, you know based off your anecdotal research, that there is a blow to cognitive function. How long does it last? And then what do we need to do if it doesn't come back? How do we preserve the functions that the hormones were essentially helping. And again, it's supplementation is key. A lot of insurance companies, unfortunately, don't cover supplementation, which I know if I don't have my supplementation, I have a tremendous amount of cognitive issues, both short-term and long-term.

Charles Ryan: It's really surprising that people have trouble getting coverage for testosterone supplementation. It's just hard to believe that that happens. It's such a vital thing for health. It's not just a lifestyle, it's preserving health and probably survival of men who had orchiectomies. So yeah, it brings up something that we are continuing to think about. Wearing my hat now as a leader in the Division of Hematology, Oncology at a university is we don't have enough time with our trainees to train them about everything they need to know about every cancer, about every new therapy, and about survivorship. So survivorship is becoming its own niche within oncology, which is good and bad. It's good because you have a lot of intellectual work, academic work, research going in and people who are finding this as a way to do it as a career. And the bad thing is that it should be just part of all cancer care, spread throughout. Every practitioner should know something about it like we know the basics of other things. But I think we're moving in that direction.

One of my colleagues here, Anne Blaes, was the recent past president of the American Society of Clinical Oncology Cancer Survivorship Committee, and there are now essentially survivorship departments within cancer centers, and in our cancer center it's recently been elevated even more so as a program within the cancer center and others are following suit. So I think we're going to get there. I think the progress that we've seen against this disease and how we treat it has been interesting to follow, and rapid, since your diagnosis and treatment. What I mean by that is it's different from what we're doing in every other cancer.

In every other cancer, we're searching for new treatments and how to increase the intensity of treatment and have more cures come as a result. In this disease, we're focusing on, I hope, the patient experience trying to get beyond just the treatment, because the treatment is just the beginning of a lifelong journey. So survivorship is as or more important in testicular cancer than it is in almost every other cancer.

I want to just thank you for your time and your advocacy and your efforts and everything you do, Scott Petinga. Any final thoughts for someone who's maybe newly diagnosed and listening to us for the first time? What do you want to tell them?

Scott Petinga: I think the biggest thing, and what I still do to this day 17 years later, is don't forget to live like your dying. Every single day I wake up grateful. So much opportunity that I have to see my kids, feel the sunshine on my face. So I think that's super important is to realize is no matter how bad the days are, I'm still here. Another day to fight, another day to fail, another day to get up and try something new. I think that's most important is it's not a death sentence, regardless of what stage regardless of what type of cancer, is you still got a few more breaths, a few more footprints to see, sunrises to rise, sunsets to go down. It's been an interesting ride, but I've met extraordinary people, like yourself, along the way, so I'm truly grateful.

Charles Ryan: Those are great parting words, and that's one of the reasons I became an oncologist, is because the people you are working with learn to appreciate life, you learn that helping them get more life is incredibly rewarding. So, thank you again, Scott, for everything you do, and hopefully I'll talk to you again sometime soon.

Scott Petinga: Yeah, definitely take care.