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In this episode, I’m talking to Mike Craycraft who turned the tables on his cancer diagnosis to transform it into a mission to help others. Mike is amazing because he puts in an incredible effort in running the Testicular Cancer Society and continuing support of folks joining the Testicular Cancer Forums. In the interview with Mike we get to hearing about:
- The criticality of finding support online
- How to put diagnosis into a more positive perspective
- What conditional survival is and why that’s important
- How building knowledge beats cancer anxiety
- Taking the opportunity to live a better life and help others
Joe: Mike, thank you so much for doing this. I’ve been really looking forward to it. Mike, can you please tell me about yourself?
Mike: Sure. My name is Mike Craycraft. I’m a clinical pharmacist by trade and also a testicular cancer survivor. I was diagnosed in 2006 and then founded the Testicular Cancer Society after my diagnosis just because there wasn’t a whole bunch of resources available back then. I felt like with my survivor experience and healthcare knowledge, perhaps I could help make a difference.
Joe: Thanks, Mike. I know that you waited for over seven months from when you first felt a lump in your testicle until you went to the doctor. What was the time like? What was going through your head?
Mike: It was like a vicious cycle. I would actually get hot flashes at night, so my scrotum would get loser and I could feel the lump. I’d like, “I’m going to call the doctor in the morning.” I checked myself in the shower and I wouldn’t feel it and I’d go to work and I wouldn’t remember to call until it was noon, and the doctor’s office was closed. Then I’d like, “Well, okay, after lunch I’ll call.” Then I wouldn’t remember again until six o’clock at night when the doctor’s office was closed.
Then it just became this vicious cycle of just delaying, delaying, delaying. I had a whole bunch of things going on, obviously with the holidays, with Christmas, with New Years, my dad’s birthday. I kept thinking, well, after this, I’ll go to the doctor. I really don’t want to come home for Christmas and say, “Merry Christmas, your son has cancer.” The next thing I know, it was pretty quick that I realized that my delay probably had meant that I had metastatic disease and I convinced myself that I would die as a young man, to the point where I even threw my own going away party. I went back home for our Thanksgiving holiday here in the U.S. and asked a friend what bar I could have.
I’m going to rent it out and buy all the drinks and I figured in a couple of months, my friends would realize that I had cancer and was dying. It was quite a hellish period for the seven months. Just not sharing with anybody. Not friends, family, doctor. Just keeping quiet and literally living like I was dying.
Joe: Horrible. It just drives you crazy, doesn’t it?
Mike: It’s a very lonely period, yes. I’m probably one of the few people that finally when the doctor said, “You have cancer”, I felt some kind of relief. Most people were shocked, and I was just like, okay, I’ve known this. You’re saying I’m going to live, well, great, can I get some money back because I just blew a whole bunch of money in the last seven months. By the way, I didn’t get any back, so don’t do what I did.
Joe: Yes, absolutely. Yes, you’re probably one of the very few people to say that. I know that your mind just plays tricks on you. I know that when I was, you know, I also had testicular cancer, and when I was in the shower and I reached down and I found it, I think the fact that really helped me was that I’m a complete hypochondriac, so thing I did the next day was I ran to the doctor immediately because I was 100 percent convinced that this was cancer. Yes, I know what you mean about you touch it the next day and it’s not there and you start doubting yourself. Your mind starts playing all of these crazy games on you.
Mike: Yes. It seemed like it just was a vicious cycle. Some of it was fear, some of it was denial. The biggest then, a whole churning in the cycle was really not wanting to upset others. I knew I was coming home for Thanksgiving and my friends were getting married. How can I ruin their wedding by telling everyone I think I have cancer? How can I do it at Christmas or New Year’s, or my dad’s 60th birthday in January? It just kept perpetuating. Until, finally, I had a guy’s trip to Costa Rica to go surfing and I figured I wanted to learn how to surf and if I was going to die and people thought I was a surfer, maybe people would think I’d be cooler. That was my last trip. I said, okay, before I even leave, I’m booking an appointment for two days after I get back, so I had to go after I got back from that trip. That was June. It had started in October.
Joe: Yes, absolutely. Once you found out that you had cancer, how did you break the news to your friends, your family, what was that like?
Mike: Well, at first, before my orchiectomy, or before the test scores were moved and we knew 100 percent it was cancer. I still kind of kept it quiet. I said something to my parents. I debated saying something to my sister. My dad convinced me I should because if I didn’t maybe she’d think that I was hiding something from her. Then literally right when I went in and the doctor first said I had cancer, I came back the next day and some friends of mine were playing music on stage and I ended up jumping on stage and making some ridiculous comment about: I’m pulling a Lance Armstrong and if anyone finds my testicle in the sand, to bring it back to me.
No one even got what I said, except for one friend who immediately started crying, knowing that I was saying that I had cancer. Once the pathology came back, then it was open season, I didn’t mind who knew or anything else. I just didn’t want to be that guy who maybe had a testicle removed and it came back normal. Looking back, even then, who cares? That’s great news. Hey, you lost a testicle, great news, you don’t have cancer. Once I got the official news, pretty much the flood gates opened.
Joe: How did people react? Were they supportive? Were they shocked? What was that like?
Mike: Well, I actually have a funny story for you. I guess I was being annoying one evening and one friend drew a stick figure with these round glasses on. It had these round glasses and they used to call me Smithers from the Simpsons TV show. It was a stick figure of me with tire tracks running across it. On the top, it said: Kill Smithers. They all thought it was funny. I didn’t know anything about it, they got these t-shirts printed up, not knowing that next thing I know I say I have cancer. Now, they don’t know what to do with the t-shirts. They ended up all putting them on and showing up to the beach bar one day and surprising me. It was all literally fun and games after that.
My parents had travelled to Maine and came back right after my diagnosis with the t-shirt of some squirrels on a branch and a nut had fallen off, and there was a big pile of nuts on the branch. It said: It’s all fun and games until someone loses a nut. My mom gives it to me and asks, “Is this too soon?” It’s like, no. Besides the humor, everybody was incredibly helpful, accepting. All of those kinds of things. I had a friend’s house that I stayed at for six weeks that year, because I would come back home to Cincinnati and stay with them. People just bent over backwards to help.
Joe: That’s fantastic. Is there anything in hindsight that you would have done differently? What I’m trying to say is, waiting all of this time, that must have been excruciating.
Mike: Yes. That’s the biggest thing, looking back in retrospect, I’m glad I did it because I did have an experience that was unlike anyone else. I also somehow lucked out and it was still stage one, which is pretty amazing. Really, looking back, using some common sense, no, I should have gone to the doctor right away in October when I first saw the lump and really saved myself the mental beatdown that I gave to myself. During that process, I also accepted the fact that I was going to die. I didn’t want to die but I accepted it in my mind. It was just as real as anybody with a terminal diagnosis. I went through that process. When I was going through it, I kept thinking, “I’ve had a pretty incredible life.”
Of course, people have had much better lives than I have, but other people haven’t. When I was trying to figure out, why is my life so great? It really came down to the people I know and the friends I’ve met. It’s nothing spectacular about me. It just really gave me a much grander perspective on life and what was important to me. Everything worked out fine but if I wouldn’t have beaten myself up for the seven months, that would have helped, too.
Joe: Absolutely. Now, that you’ve talked about back then, it’s really changed your perspective in terms of really appreciating the friends you’ve met and the people that you have in your life. Has that been any different now all of these years later, now that you look back on it? Has your perspective shifted?
Mike: I don’t know that my perspective has shifted that much. I do talk about every now and again I don’t share very often with people. When I was first diagnosed, I said, “Well, I’m going to go live my life every day.” Doing what I do, running a non-profit organization, it’s not a woes me, I look up and I’m like, “I’m not really living my life every day.” I’m sitting behind a computer ten, twelve, fourteen hours a day, that’s not exactly a good work/life balance, I guess. In that aspect, I probably need to improve on that balance nowadays.
Joe: What you’re doing now is really amazing because all of your non-profit work has helped so many people. I think it’s a good time to talk about the fact that you founded the Testicular Cancer Forum and you’ve been maintaining it for ten years now?
Mike: Well, I didn’t actually found it, it actually was started by a survivor and his buddy years ago. I actually joined the forms in 2008. Part of the testicular cancer society was we would tell people to go to the TC-Cancer.com forums because that’s where all the guys were. There was no reason for us to have something with our name on it, to try to reinvent the wheel. When everybody was already going there. We were really huge advocates for that. About five years ago, the forums were basically to the point where they were going to be shut down. They had some technical difficulties and the people who started it had put a decade in, basically.
They came to us and I saw the value in it. I would see guys come back years later on a questionable checkup or a second cancer or a relapse or a problem with hormone replacement therapy, or fertility questions. I wanted to make sure that the legacy of the forums was there for those people, and all that gathered knowledge. As well as new people coming. We took them over about five years ago. I’ve been on them for ten years no, but really only been the main oversight for about the last five years.
Joe: That’s so amazing, because I know that it helped me so much when I was looking for support, when I was looking for answers, to find people who were going through what you’re going through. It’s amazing. Thank you so much. I guess I want to ask, what is your main motivation for not only keeping the forums going but also being so active. You login almost every day and you post and you support people through it? How do you keep it going?
Mike: My goal overall was to always help the next me. I know how I was in 2006, I know how the forums helped me. If I can help the next guy in those ways, then it’s worth it. It gives me pleasure to be able to do that. I also feel, like I said before, I’m in a unique position, where I have the healthcare knowledge, where I can reach out to the top experts in the world and have a conversation with them that’s so in-depth that it would flabbergast people. Then I could turn around, and being a pharmacist, be able to communicate back down to the person’s level that was just diagnosed, which not a lot of healthcare professionals have that ability, to really relate to the public, per say, with the information.
Also, with the feelings. Sometimes it gets difficult, sometimes you lose some empathy along the way. Overall, no, you stop for a second and think, “Yes, this person, they’re in the exact shoes that I was. I remember how that feels.” Taking two minutes to reply to them really can help make a difference.
Joe: That is another thing that I really noticed on the forums, is that everyone is so supportive, even if the same questions from guys come up, because people go through the same things. People, like you, like so many others, just respond in such a great, such a positive way, as if it’s the first time that anyone has posted in there. I think that’s so fantastic and I can’t encourage people any more than I’m trying to do now. What I want to encourage people is to always go to forums, like the testicular cancer forum, because I think you get so much incredible value and support out of it.
Mike: Nowadays, there’s a lot of testicular cancer groups on Facebook, which is great. You can get almost instantaneous reaction. The forum sometimes is a little slow as far as developing response. What I think is really key about the forums is two things, one, they’re completely anonymous. You pick your own username. We’ve had situations where there’s been people on there that can’t use their real name, or don’t want to use their real name. where, Facebook, you have to in these Facebook groups.
Secondly, it’s searchable and it’s permanent, where Facebook, if someone posted six months ago, it’s going to take you an hour and a half to scroll back down and find that information. The forums kind of are an older technology, but I think they really are invaluable for what they are. It’s a huge collection of experience and knowledge from real life. That’s what people need.
Joe: Absolutely. I think that the more resources that you have at your disposal, the better. If I was talking to someone today who found out they had cancer, I would say, “Use every tool you can at your disposal to help yourself. Read books, go to forums.” You mentioned Facebook groups. I’m sure there are other resources out there. I think people should use whatever they can, shouldn’t they?
Mike: Yes. There are plenty of people willing to help that have been there before. I think the forums are really good because I think there’s a high level of education and experience on there. Again, not belittling Facebook groups at all, but I’ve been on there and seen some responses and it’s just worrisome at some point, where when I’m going through the forums, I see every post. I don’t always comment, because if I comment on every post, then it’s Mike’s forums, not the testicular cancer forums. I don’t always interject. I certainly do if I see something that appears to be misinformation. It’s very rare when going through these forums that I even see that.
Joe: In the forums, just because there have been people who have been around for a while now and mixed with new people, it just makes much more of a community feel there.
Mike: Well, I think it’s even a self-learning process. Where if there’s a post and there are five responses, there might be 15 responses. Six of them or ten of them are just out there. They’re talking about one type of testicular cancer, when the person has a different one, or they just don’t totally have the grasp of knowledge that I think the people on the forums, because they’ve been there for a while and because it’s less absorbed and it’s absorbing good information back. I just think the quality if much higher.
Joe: Yes, absolutely. What would you say about, I definitely believe it really helped me to be really in the know about what’s going on at every stage of the way. Yes, it was great to have, for example, my neurologist, then my oncologist, but it really helped me to combine that with also firsthand experience with people like yourself, and the forums, who really helped me learn so much more, all of this additional information, as well as perspective. What do you think about that? About people getting that mix of specialist knowledge but also real-life first-hand experience of people who went down that road before?
Mike: Well, I think they go hand-in-hand. When you’re going through the diagnostic process and you’re trying to get staged, having someone be able to say to you, “Well, the biggest key of information is a CT scan. Then after that it’s going to be your tumor markers and then it’s going to come down to what the pathology actually says.” Also, being able to say at the same time, your pathology shouldn’t take any more than three days and your CT scan really should be ready tomorrow. You can go get the information yourself. It’s an anxious hurry up and wait period. You’re rushing through everything and then you’re waiting for those results to come back, which can create an incredible amount of anxiety.
Especially if you don’t have a physician who isn’t on top of things and wants to move quickly for you. They’ll say, “Okay, go get a CT scan, see me in a week. Go do this, see me in a week.” It’s like, no, let’s see you two days from now. Let’s hurry this up. At least call and let me know what the information is, so I’m not sitting here fretting.
Joe: Yes, absolutely. Mike, I remember in one of your posts, when you were talking about driving your friend to her cancer treatments, I think two hours each way. Did you find it emotionally rewarding? Was it tiring? Was it draining? What was it like?
Mike: It was a friend of mine who relapsed with brain cancer. Actually, it was one of the biggest pleasures of my life, she ended up passing away. To be able to take her to her physical therapy or to her radiation treatments was incredibly rewarding. As I mentioned, I put myself through that process of making peace with my life. I feel like I was very well-able to help her along the way, as well. It’s one of the best things I have ever done. A two-hour drive each way was nothing, really.
Joe: That’s great, Mike. I also remember there was this amazing post of someone, I think they were going through stage two or stage three of testicular cancer and they were ready to give up. Their doctor said it was going to be too difficult to operate. I remember that you recommended a specialist in a different city to get a second opinion and that person followed your advice. They went through with the operation. I remember they got completely over it. That’s incredible, Mike. How does that make you feel? Being able to make such a difference to somebody’s life?
Mike: It was pretty exciting when he sent the response back and filled us in with what was going on. Yes, I guess he originally asked his oncologist to go to one of the two physicians that I recommended. I believe I met both in person, but one I’m much more social with. I knew that they knew their stuff. I guess his physician did or didn’t, I don’t know. He had a local surgeon; the surgeon wasn’t able to remove all of the cancer in his abdomen and sent him home to die. He decided that, well, I’ve nothing to lose, I’m just going to contact the doctor Mike said. Within two weeks, he was in the doctor’s office, Saul, that doctor/surgeon who was able to remove 100 percent of the cancer and he was cured. He was amazed that the doctor, the specialist I mentioned was 700 kilometers away. Which for a guy in the U.S. you’re probably wondering why I said kilometers, it was because the patient was in Australia.
I recommended either one doctor in Melbourne or another doctor in Sydney. To be able to do that, literally from the other side of the world, really was exciting for me. Lucky with the American Society of Clinical Oncology that I’ve been over and got to meet these physicians at the annual meeting. There’s also what’s called G3, the global germ cell group. These physicians are a part of that, that I get the pleasure of going to those meetings, as well. It just all worked out in an absolutely fantabulous way.
Joe: Fantabulous, that really is a perfect way to describe it, Mike. Absolutely. Mike, I know that sometimes people on the forum have clearly false alarms. Does this annoy you or do you believe that the forum is for everyone, not just for people who are really sick?
Mike: No. The key is early detection and treatment. If someone comes in and they feel a lump and it really from whatever they’re describing is a pimple on the scrotum and not a testicular cancer, they’re still scared. They’re still worried. We can’t really tell them that it’s a pimple on their scrotum and not testicular cancer. Certainly, being able to guide them in to get to a doctor, to get checked out. To hope they get a scrotal ultrasound is key. There’s also really a healthcare anxiety. You say hypochondriac, there is a huge anxiety and some people it takes a lot of convincing to.
Some people, their questions has been answered 15 times already this year, and they didn’t search through, but regardless, it’s okay. They have a question, they need an answer. If they would rather type it in and get an answer from everybody, that’s great. It’s not just for those diagnosed. It’s hugely for the caregivers, as well. As you see, there are so many women who are on the forums. It really is for everyone.
Joe: Absolutely. Speaking of anxiety, I know of one thing that comes up for me, personally, is the fear of cancer coming back. Did that happen to you? If so, what would you recommend to someone dealing with cancer in terms of how they can deal with it in a better way?
Mike: I don’t think the fear of it coming back ever really goes away. I think it gets easier with time. I know from my three-year checkup, which is a pretty big one for seminoma, I was reading through my CT results, I would always get my results before I went back into my doctor, so I would know what questions to ask instead of being shocked by what I’m told. I was reading through, it said, interval increase in size is… and then it skipped down to the next line, not seen. From the end of one line to the beginning of the next, I about crapped myself. Thinking, interval is seen, instead of is not seen. I worked with the radiologist, so I even made fun of him and said, “Listen, you’ve got to change your dictation so it all falls on one line, this is too nerve-racking.” Really, I think, as someone who’s diagnosed, having a realistic expectation of what your risk of relapse is I think is important.
Having knowledge of that. I think a lot of guys don’t. They don’t know what their risk of relapse is. It’s stage one disease or after chemotherapy or after chemo and RPLND what the odds of it are coming back in the second testicle are. They get a headache and they think, “It’s gone to my brain”, which would be extremely rare to occur without some disease in the abdomen and lungs. I think that is key. I think, really, for stage one disease, for example, taking a look at the numbers and seeing that greater than 99 percent of guys live for 15 years, survival rate. It’s basically almost 100 percent cure. If you look at the guys who actually had stage one testicular cancer that passed away, many passes away from alcohol as they do from testicular cancer and the treatment. Many more pass away from other cancers, or cardiovascular disease or lung disease.
Our experience tells us the biggest challenge that we’ve had is our testicular cancer diagnosis. I always look at it as, what is the next big challenge I’m going to face? Yes, could this be the biggest challenge of my life so far? The testicular cancer, I’ve always thought that. Five months after my diagnosis, I got Dagny fever. My odds of dying acutely from Dagny fever were much higher than dying acutely from testicular cancer. I think putting in a perspective helps a little bit. Knowing that they call it conditional survival. For every two years you live, your odds of living the next two years go up, no matter what the stage is. I think making sure you have a perspective is really key. Then if there are anxieties, what can be done about it? Is it something that’s affecting your daily activities? Then you probably need to go talk to someone.
There’s also the new program that came out of Australia, the e-ct.org, that’s helping guys readjust to life after diagnosis. That’s something that they can try. Sometimes, I think the biggest thing is to realize that some things are normal. A lot of guys can have anxiety because they have peripheral neuropathy and it’s a constant reminder that they’ve had cancer. When they realize that, yes, just about everybody else who’s had chemotherapy has that, as well, it’s normal. I think that can put the mind at ease a little bit, as well.
Joe: Yes, probably for yourself, I know that it does for me, going to the forum and seeing other people, I guess that helps put things into perspective, as well, right?
Mike: Yes, it certainly does. Saying that you’re not the only one that’s having these fears is big. What’s really amazing to me right now is that the most recent research looking at survivorship shows that really the fear of infertility or being able to be a father is just as high and as severe as recurrence. Which is flabbergasting because you would think, okay, well, just go to a fertility doctor and check your sperm count a year or two after chemotherapy. Or at least put your mind at ease or confirm it. That’s a lot simpler than getting over the fear of recurrence. It’s amazing that those are the two biggest things that are really affecting survivorship, as far as really a fear and anxiety standpoint.
Joe: Well, that’s pretty amazing. I didn’t know that. Mike, what is your perspective on living a healthy lifestyle? What would you recommend in terms of keeping in good shape physically, mentally? Is it a diet, is it exercise? What would you say?
Mike: Well, as I mentioned before, testicular cancer survivors have a higher risk of cardiovascular disease, they have a higher risk of metabolic syndrome. Certainly, leading a healthy lifestyle is never a bad idea. Is it in the long-run going to make a difference with your cancer coming back? No. Is it going to keep you from passing away from complications or, like I said, cardiovascular disease, yes, certainly. I think there are also limits to it. There was a great book actually written by Matthew Carr, out of Australia, called: Battle Scars. If you haven’t read it, take a read, it’s pretty good.
In it, was getting up every morning, he was big into eastern medicine, I guess it is, and martial arts, for lack of a better term. He was getting up every morning and drinking his own urine. When his cancer relapsed, he kind of slapped himself in the face thinking, “Seriously? Did I think drinking my own urine every morning was going to go keep my cancer away? What was I thinking?” I do say that there are certain limits to what you want to do, but certainly having a reasonable diet and exercise is a good idea.
Joe: Good, thanks, Mike.
Mike: One last thing to add, people always talk about antioxidants, so one of things that you have to look at, especially when you’re on chemotherapy, people want to load up on all these antioxidants. Go to the nutrition store and get everything they possibly can. Well, the problem is, the chemotherapy creates free radicals to kill the cancer cells. When you do anything too much in a zealot pathway, I always caution. Maybe turn it back in a little bit.
Joe: Cool. Thanks, Mike. If you had a minute with someone who was recently diagnosed with some type of cancer, what would you tell them?
Mike: Well, I guess it depends on the type of cancer. I think overall is relax, take a deep breath, get some perspective and knowledge. I think anxiety and maybe hysteria, for a lack of a better word, can take over and really cripple you, without more critically thinking about what you’re facing. I don’t mean to be slight at all, but I heard one time that cancer has a 50 percent mortality rate. Well, yes, overall, but the good news is that 50 percent of you are going to die of something else. Not to be too flippant, but that kind of puts things into perspective.
Now, obviously, each individual case is going to be different. Really, taking a breath, figuring out what you’re facing, and figuring out where you’re going to get the best care. I think that’s really the biggest thing. Some people, unfortunately, I have to talk to and have to explain, you’re probably going to be better off getting things in order, this doesn’t look real good. There doesn’t really seem to be any other options. You’ve talked to the top experts. That pathway is different. The initial diagnosis really is just knowledge and perspective.
Joe: If someone wanted to find out more about your journey or maybe learn about Testicular Cancer Society and the forum, what would they do?
Mike: Really, just visit our website. Our main website is: testicularcanersociety.org. Then the forums are at: tc-cancer.com. There’s a tab on there. That whole website, well, we need to redo both of our websites. They’re kind of old. The forums on the tc-cancer.com are really the most viable resource on there.
Joe: Thank you so much, Mike. It has been a real pleasure.
Mike: Absolutely. Well, thanks for having me, Joe.