DESCRIPTION
In 2005, Mike Craycraft thought he might have testicular cancer, but waited seven months to seek medical attention. After experiencing a scrotal ultrasound, being checked out for preoptive tumor markers and undergoing an inguinal orchiectomy, he was relieved to learn that while he had been diagnosed with testicular cancer, it was Stage I and very treatable.
A clinical pharmacist by trade, Mike Craycraft of Cincinnati, Ohio, was living in South Florida when one night he felt a lump on his testicles. Immediately he had a feeling it was cancer.
Seven months later, he saw his primary care physician, who ordered a scrotal ultrasound. Its results were enough for the doctor to send Mike to a urologist. A week later he was seen by the urologist. That night he received a call from the urologist asked Mike to come in the next day.
When Mike came in, he was told of his diagnosis, but there was still more work to be done. The urologist looked at preoptive tumor markers, followed by CT scans. Next he scheduled an inguinal orchiectomy, in which the groin area is viewed to determine the stage of the cancer. Miraculously, despite Mike waiting so long to be seen on the matter, his testicular cancer was diagnosed as Stage One.
Mike Craycraft was given the option of following through on active surveillance, and that’s the option he chose. From that point up until the present, Mike has gone in for his scheduled CT scans and blood work, and he has been fine.
Mike says his health is very close to what it was prior to his diagnosis. In 2013, to celebrate his seven-year ‘cancerversary,’ he climbed Mt. Kilimanjaro.
In another way, Mike’s life has changed. He founded the Testicular Cancer Society. He says in 2006, when he was diagnosed, there were very few support avenues for those diagnosed with testicular cancer. TCS offers support in-person in the Cincinnati area or via the internet through https://www.testicularcancersociety.org. It works in three main areas, those being increasing awareness, access to care and quality of care.
By way of advice, Mike Craycraft says if you are diagnosed with testicular cancer, or any type of cancer, to take a deep breath, take a step back and get some perspective to formulate a gameplan, and avoid making rash decisions.
Additional Resources:
The Testicular Cancer Society: https://www.testicularcancersociety.org
TRANSCRIPTION
Bruce Morton: This is the Cancer Interviews podcast. Welcome, I’m your host, Bruce Morton. We don’t hear a lot about testicular cancer, but it’s out there. On this episode, we’ll hear from a man who was diagnosed with it, survived it and now is doing plenty to help others diagnosed with the disease. He is Mike Craycraft of Cincinnati, Ohio, and he has an informative story about his past, present and future. So, here he is, Mike Craycraft, and Mike, welcome to Cancer Interviews.
Mike Craycraft: Thanks for having me.
BM: It is our custom to begin our interviews from the same place and that is to learn a bit more about your life, exclusive of your cancer journey. If you would, Mike, tell us about where you are from, what you do for work, and when time allows for fun, what you do for fun.
MC: I was born and raised in Cincinnati, lived down in South Florida a couple different times, a clinical pharmacist by trade and most recently founded the Testicular Cancer Society as my full-time job. Outside of that, when I have time, I love to travel around the country and follow Jimmy Buffett.
BM: With respect to your cancer journey, unfortunately, each one has a starting point. When did you notice that something wasn’t quite right?
MC: I was living in South Florida in 2005, right after Hurricane Wilma and with no AC, no power, I just went to adjust myself on the couch, felt a ridge on one of my testicles and immediately knew it was cancer, but it took me quite some time to get up the nerve to go to the doctor.
BM: How long did that take and what triggered your going to the doctor?
MC: Seven months, actually, which coming from a health care professional is pretty idiotic. I would feel the lump at night, get hot flashes, didn’t feel it in the shower. I didn’t really have a primary care doctor except for one listed on insurance, so I kept delaying my going in, pretty much convinced myself I was going to die from a metastatic disease. I went so far as to throw myself a going away party that Thanksgiving without telling anyone why I was doing it.
BM: There must have come a time after that when you did tell your friends.
MC: I had kind of a final hoorah and went surfing in Costa Rica on Memorial Day weekend 2006 and before I even left, after all these delays, I booked an appointment for two days after I returned. I figured my parents paid my college tuition and they would be pretty upset if I just ended up never going to the doctor and passing away from something, so that was the impetus to say let’s go, let’s this done and see where we’re at.
BM: And how difficult was it trying to come to terms with your mortality, the thought that this could be it?
MC: That part probably wasn’t as difficult as much as staying quiet about it, believe it or not. I grew up playing club soccer, I traveled around the country playing, I played Division I college soccer, I was a pharmacist at 22, I had never been married, I had no kids, no real responsibilities except for myself. Not to sound like a martyr, but I looked at things as if it had to happen to someone and I was kind of the perfect person to have it happen to. I had had a great life, incredibly satisfied with the life I had had up until then mainly because of the incredible people and friends and family I had, so I just really couldn’t find room to complain, as weird as that sounds, so I essentially made peace with passing away and was quite surprised when I found out that that wasn’t going to be the case.
BM: Mike, I think the next step in this story is, you said you got good news when you went to the doctor, but if you would, explain in greater detail what happened when you went to the doctor.
MC: I finally decided to go to the primary care doctor to let him know what was happening. He ordered a scrotal ultrasound, went and had that done. He called back and didn’t want to say much, but that he would like me to see a urologist, so I made an appointment for a week later. After hours that night, the urologist called my voicemail and said I could come in any time I wanted the next day. So, I was pretty much confirmed he wasn’t going to give me an award, but rather a cancer diagnosis. I went in, I actually worked in a medical center with a urologist, he recognized my name, and told me not to worry that he and his staff would take the best care of me. I had been living like I was dying, so my response was to ask if I could get any money back? Then I asked what was next.
BM: And, what had to be done?
MC: Essentially it was just the preoptive tumor markers and CT scans to see if it had spread and then scheduled an inguinal orchiectomy, they take the test through the groin area like a hernia surgery and then from there trying to figure out what stage it is. Luckily, mine was still Stage One, miraculously. Waiting seven months can be catastrophic. For some reason, I had a lazy growing cancer, so it kind of fit in with my laziness during those seven months, too.
BM: Mike, some of the people listening or watching are people who might be diagnosed with testicular cancer, or they just diagnosed with testicular cancer. For those individuals, describe what that procedure felt like.
MC: Honestly, I had a pretty easy time with it. I had surgery on a Monday and found out that evening that a friend I had been surfing with in Costa Rica had perforated his intestines and was in the ICU, so I ended up that Wednesday going out to the ICU then went out to Happy Hour just to let my friends know I made it. I wasn’t moving quickly, but I was able to get around and hobble. It hurt to laugh and cry and sneeze and cough, but it wasn’t tremendously bad. I just kept ice on my groin for a week or so, then it was back to normal pretty quickly.
BM: You had said you had pretty much come to terms with the prospect of dying from this disease, but this you received this very good news. Were you just as calm about it, or were you elated?
MC: I was pretty elated. I think the vast majority of everyone who goes through that says to themselves that they are going to live life to each day, and so I tried to do that even more. I don’t like being wrong, but in this case, I was so glad that I was completely wrong.
BM: In your procedure’s aftermath, even though it may seem obvious to you, describe for those of us who don’t know, what does testicular cancer feel like? How does it impact you?
MC: Physically, not much. Only about 20 percent of the time is it even painful, so I even went to a second radiation oncologist appointment and when I walked in, I said, “Mike Craycraft here to see Dr. Green,” they paged him overhead and I had to remind them that I was a patient. I was an otherwise healthy-looking 33-year-old. I just had cancer that if not addressed would be detrimental. I lucked out with Stage One, and I had the option of undergoing surveillance, so from then on out it was just a matter of going for the proper CT scans and blood work, but 16 years later, luckily it has not returned.
BM: You referenced pain 20 percent of the time. What was that pain like?
MC: I didn’t have any pain whatsoever. Only about 20 percent of the guys who have my procedure have any pain. It is usually a painless lump that is found on the testicle. You can have some swelling, or you have a testicle decrease in size or later on you can have back pain, difficulty breathing, pain in the chest muscles. Otherwise, it is just a painless lump, there’s not much to it and they are not that big, necessarily. It can be the size of a pea. It can be somewhat difficult to know what’s going on and I think that’s why some guys get diagnosed late stage, and don’t even know it. They can get in a car wreck, go get a CT scan and it reveals a tumor in one’s abdomen and they find out it came from the testicle.
BM: A lot of this took place in the year 2006. As we talk today, it is the year 2022. If prior to your diagnosis you could describe yourself as being 100 percent, today how close to 100 percent are you?
MC: If I could ‘curve’ for the getting old part, I think pretty much 100 percent. In 2013, my seven-year ‘cancerversary’, I climbed Mt. Kilimanjaro. I have broken a leg and a couple of ribs, but otherwise can pretty much do anything I want today that I wanted to do before my diagnosis.
BM: Some people we speak to on this show think there is some thing to be gained in some form or fashion, by documenting their cancer journey. Did you ever see fit to do that?
MC: Yeah, certainly along the way. I have a pretty good memory and a medical background. For my three-year cancerversary, I was asked to write my story as part of a chapter in a book. They asked me for 5,000 words and by the time I got done, it was 9,000 words, so I had to do some editing. I found that very therapeutic and even to this day, I will go back and read that chapter and remember where I was three years out from diagnosis. I think a lot of people find it cathartic to write down things as they go along whether they are good or bad. I think sometimes, too, it helps them communicate with family members and loved ones. If you create a web page you are putting it out there where you are not having the same thing 15 times on 15 different phone calls, so I think there certainly is utility to it.
BM: I think I know the answer to this question, but I am going to ask anyway because I want to hear your answer. If you had a do-over, if you could hit the rewind and take yourself back to the day you discovered the lump, would you have responded any differently?
MC: Certainly, I would have gone to the doctor immediately. Seven months of ‘living like you’re dying’ sounds like a great time, but it’s mentally it’s very challenging and emotionally, too. Granted, I had a lot of fun doing what I was doing, but would rather have gone to the doctor and then done those fun things. I think that’s probably the biggest part. I certainly would never trade my diagnosis. I don’t know what my life would have been like before the diagnosis, but I certainly love the one I have, after.
BM: Mike, we have learned on this show by talking to people with different types of cancer that depending upon the type of cancer that they may have a wealth of support avenues, while others, especially those with rare cancers, have little or none. Testicular cancer doesn’t seem to be in the rare category, but at the same time, it is not a ‘high-profile’ cancer. What resources of support were available to you in 2006?
MC: I remember talking about support groups and this and that, and I kind of laughed it off. I got a brochure on self-esteem, too, and I think I didn’t need any help. I was just fine, but I secretly developed my own support group. Back when there were people on the website called My Space, I would search around for testicular cancer and when I saw someone said they had had it, I reached out to them mainly to figure out what my treatment options were and what I should choose and what they chose. Outside of that, there weren’t many resources available. Even to this day, it is almost impossible for us to have in-person support groups. There are not enough guys diagnosed in a geographical area in the same kind of time period to get ‘em together. I think there is one in London that’s doing a great job, but this is typically a younger man’s disease and getting a bunch of 25-year-olds together is like herding cats, so it can be quite difficult, even though I think they would benefit from it. As a result, a lot of the stuff going on today is more online and digital, e-mails, phone calls, texts, you name it. If you can communicate it, that’s what we use to help them diagnosed.
BM: As for your founding the Testicular Cancer Society, what inspired you to do it?
MC: Really at the time of my diagnosis, there wasn’t much available for testicular cancer, and it was at the time of the advent of online billboards and groups and this and that. You would find one and then learn that only four people had been there and the most recent one was a year ago. There were a couple of good resources and I thought it is hard for me to find and with my medical background, I understand the disease fully and then diagnosed I understood that side of the bedrails, so, I thought what if I create something that is like the hub of a wheel, people can come in, I can show them where they can go, where the resources are, I can listen to them and find solutions to problems in which resources weren’t available, so that really the impetus in short, trying to make the testicular cancer world a little bit better than it was when I got there.
BM: I am going to ask this question twice, but this is the first time. If somebody wants to check out your website, what is its address?
MC: It’s www.testicularcancersociety.org
BM: Now I want to hear more about what TCS can do for people. I am sure that in the years that TCS has evolved that it has grown in scope. What were some of things that you could do in the early days of TCS and what are some of the things you can do now?
MC: You know, in the early days, it was more a case of pointing people in the right direction and trying to support them along their way. It was more of an emotional support type situation. At this point, I have spent so many years studying testicular cancer that I think from more of a clinical navigation perspective, I help a lot of people individually one-on-one going through their care, what’s the next step going to be, what is that piece of information mean? You know, you only get so much time in the doctor’s office, come out with so many questions and you can read a whole bunch on the web, but nobody really answers your individual question, even if that same answer was on the individual web page, so that’s really more of what we are doing now than when we were doing probably at the beginning. It’s constantly evolving.
BM: What are some of the things in your vision for TCS’ future?
MC: We work in three main silos, increasing awareness, access to care and quality of care, so really, we are working on the quality of care issue. Guys are diagnosed all across the US, but not every medical center has a lot of expertise for this particular cancer. There are some that see less than 20 testicular cancer patients a year. We see 500 to 700, so it is not unusual that when you do things a whole bunch that you might have a little more nuance to it than if you see a testicular cancer patient once every five years, so I think really advancing that quality of care, and the second biggest part is the awareness issue, it is still such an issue. It is difficult to raise awareness to get the message to stick, but really, I am a perfect example, although I didn’t go in early, but I was still diagnosed with early stage, I could get by with 45 minutes of surgery and followup, where other guys are facing nine to 12 weeks of chemotherapy and even more robust surgeries after that. You are losing six months of your life and coming out with a whole bunch of financial toxicity.
BM: You had mentioned, Mike, minutes ago, you said when you were diagnosed, you encountered a scarcity of opportunities for face-to-face care from a health care professional. Here we are, communicating via Zoom. To what degree is Zoom in the toolbox for TCS?
MC: It is. When we help someone, we rely on their preference of how to communicate. Zoom’s a lot easier for me, or a phone call; but the person diagnosed or the caregiver that we are helping at the time, that might not be their thing. So, we do text, e-mail, what’sapp, Instagram direct messages, if you would list the ways we communicate now and gave it to me ten years ago, I would have laughed and said you were crazy. It’s really meeting the needs of those affected.
BM: One more time, that web address.
MC: It’s www.testicularcancersociety.org
BM: We are going conclude things now, Mike, and while we always start from the same place, we like to end from the same place. Specifically, if you encountered someone who had just been diagnosed with testicular cancer, you would likely have a message for them. While it might be a multi-faceted message, if there is one facet that sticks out above all others, what would it be?
MC: Really, it is to take a deep breath, take a step back and get some perspective and I think that is the best place to start off with. We all have our own experiences with cancer as we grow up, testicular cancer is very unique, it is unique as is every other cancer and so our previous experiences are not necessarily the reality sometimes. So, I think taking a moment to get perspective of what’s going on is really important and will help down the road and certainly, that’s what we’re here to do, to help as well.
BM: Mike Craycraft of Cincinnati, Ohio, he is a testicular cancer survivor and he’s the founder of the Testicular Cancer Society, and he has been our guest. Mike, thank you very much for a story that has been informative, and I hope for people listening and watching, who have been diagnosed or may be diagnosed, I hope they find it inspirational as well. Mike, thanks again.
MC: Thanks for having me, and thanks for watching and listening.
BM: That will wrap up this edition of Cancer Interviews, and don’t forget, if you are on a cancer journey or know someone who is, you are not alone. There are people just like Mike, ready to help you. Just make sure that when they speak, you listen. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
The Testicular Cancer Society
SHOW NOTES
TITLE: Mike Craycraft, Testicular Cancer Survivor – Cincinnati, Ohio, USA
Mike Craycraft survived Stage One testicular cancer, then took a major proactive step to help others diagnosed with the disease. He founded the Cincinnati-based Testicular Cancer Society. Its web address is testicularcancersociety.org.
Additional Resources:
The Testicular Cancer Society: www.testicularcancersociety.org
Time Stamps:
02:20 When Mike discovered a lump in one of his testicles, he thought he would die of cancer.
04:52 What he learned when he was seen by a doctor.
05:50 Describes procedure.
07:00 Post-op pain.
09:04 Mike describes the pain others may experience when diagnosed with testicular cancer.
13:49 When diagnosed in 2006, there wasn’t much in the way of support.
KEYWORDS (tags):
testicular cancer
cancer
cancer interviews
scrotal ultrasound
bruce morton
inguinal orchiectomy
mike craycraft
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