Listen to Mike Craycraft, testicular cancer survivor and registered pharmacist, who understands why men hesitate to go to the doctor when they suspect this type of cancer diagnosis. He tells you why he waited, how he survived, why pharmacists are integral to the medical team, and how he established the Testicular Cancer Society. Join us on Don't Give In to Testicular Cancer from the Max Mallory Foundation.Support the show
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Don’t Give Up on Testicular Cancer
A Pharmacist and Testicular Cancer Survivor Tells His Story – Episode #12
testicular cancer, pharmacist, young adults with cancer, Mike Craycraft, Joyce Lofstrom, chemotherapy, Bleomycin, Cisplatin, Etoposide, Testicular Cancer Society
00:12 Joyce Lofstrom
Welcome to Don't Give Up on Testicular Cancer for cancer survivors, caregivers and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory of Max Mallory, who died at age 22 from testicular cancer.
I'm your host, Joyce Lofstrom, a young adult and adult cancer survivor and Max's mom.
Hi, this is Joyce and with me today is Mike Craycraft. And many of you might know Mike for his work in testicular cancer, and also, he established the Testicular Cancer Society. So, Mike, I am so glad you could be with me today and welcome.
00:56 Mike Craycraft
Thanks for having me, Joyce.
00:59 Joyce Lofstrom
So, I want to start out as I do on most of the discussions that we have. Just tell us a little bit about your testicular cancer story, what happened when - whatever you would like to share?
01:12 Mike Craycraft
Sure, well, I was diagnosed in 2006, I ended up having Stage One Seminoma. But I kind of had an unusual journey in that I originally had felt a lump back in October of 2005. And waited over seven months to go in to see the doctor.
Miraculously, I was still Stage One. But during that time, lived my life literally like I was dying. I knew right away in my own mind that it was cancer. But it took a lot of doing to get me into the doctor.
01:43 Joyce Lofstrom
You know, I've heard that from other young men I've interviewed. So, why do you think you waited? If I can ask?
01:51 Mike Craycraft
Oh, I mean, part of it was a little bit of denial, probably a little bit of fear. But the biggest thing was really not wanting to upset others. So, you know, it's knowing that I had cancer, how am I going to come out and tell my family and friends that, you know, that's what I have? As weird as that sounds, it was easier to convince myself that I was going to die of metastatic disease than it was to try to figure out how do I, you know, break everyone's heart and tell them that I'm sick?
02:18 Joyce Lofstrom
That's interesting. I think it's also probably common among other people as well. I appreciate you sharing that; I think that might help some other of our listeners as they hear what you faced when you went through it. So, you said you're still at Stage One. Anything you can share about the treatment you had to go through?
02:37 Mike Craycraft
Yeah, well, at the time for Stage One Seminoma, the gold standard was still three weeks of radiation therapy just as an adjuvant to keep the cancer from coming back. There was some work being done on surveillance and even a little less on Carboplatin.
So, I really, after doing nothing for myself for seven months, really saturated myself in the literature and in the experts at the time, and decided that even back, then that surveillance was the way to go. And you know, luckily, 14 years later, that's the gold standard now and the right decision. So, I lucked out.
03:12 Joyce Lofstrom
No, you did. That's wonderful. I should mention to our listeners that Mike is a registered pharmacist. So, he has expert knowledge that we want to draw from during the interview. But also, I think that probably helped you a little bit as well. And understanding I guess what you're up against in the diagnosis.
03:32 Mike Craycraft
Certainly, in understanding the disease, it didn't help me getting into the doctor. And that's one of the things I looked at is, if I can do that, as a healthcare professional, I'm sure there are a lot more people like me out there doing the same thing.
03:43 Joyce Lofstrom
Yes, I would agree. I would agree. Sometimes we are our own worst enemies, I guess. Another question I want to ask about your diagnosis is as you went through all of that, and I think he probably just answered it. But I was going to ask what was your biggest challenge when you heard the diagnosis? And then, you said you had mostly it was surveillance, but any, anything that just hit you then? Maybe you couldn't get over?
04:09 Mike Craycraft
Yeah, I mean, when the doctor said that, you know, the ultrasound looked like it was going most likely be cancer. It wasn't a shock to me. I knew for seven months in my own mind that it was so my experience there was a little bit different.
The physician also knew me from the medical center and said, “You know, I'm going to make sure you get the best care,” which certainly meant a lot to me.
I think one of the most difficult things and things guys still face today, especially with early-stage disease, is deciding on the treatment options after diagnosis. And my physicians very much wanted me involved in that decision making, which is great if there needs to be a lot of patient autonomy.
But realizing that there is no bad decision and having to work through the treatments that are going to be best for you, I think sometimes it's easier when someone just tells you what to do. You're going to have to do this. So, it's kind of a double-edged sword. It's a great benefit for early-stage disease, but it also can create a lot of anxiety and stress.
05:09 Joyce Lofstrom
Well, I think that's a good segue to my next question: How did you then decide to establish the Testicular Cancer Society?
05:18 Mike Craycraft
Well, at the time, there weren't a lot of resources available for testicular cancer. And the ones that were available were difficult to find.
I had scoured everywhere looking for other survivors and thought, well, maybe if I could create a hub where, you know, if people could find us, then we could show them where, you know, the active forums are, or the active websites, instead of searching around and finding just dead ends everywhere.
I also thought with my testicular cancer survivor experience, and then also, my medical background, that I was kind of uniquely positioned to try to help others. And so that's how the whole thing came about.
05:57 Joyce Lofstrom
Well, I have to say, I've used your website and the information on it, when Max, my son went through his testicular cancer journey. And one of the resources I found most helpful, and I've mentioned it in this podcast in another show, is the list of experts that you have on your Resource Center page.
I think that's so valuable to people trying to understand where to go to find care. And if you did find care, then, if you have questions, or maybe need a second opinion, these physicians that you have, and it's for physicians across the world, not just in the US, I really think that is important for people to know about it.
I'm curious how you identified these different doctors. Just any thoughts you have on the list and how patients could use it, other than, you know, as I just said. I used it a lot for reference. And we actually did go see one of the doctors on it.
06:58 Mike Craycraft
So, the list is really maintained by our friend, Doug Bank, specifically at the Testicular Cancer Resource Center. And it's really just, it's essentially physicians that have dedicated their careers to testicular cancer, it isn't just an aside for them, it's really what they've specialized in.
And when we look specifically at testicular cancer, so there's what's called the National Cancer Database here in the US, and out of 1,500 medical centers in the database, less than 20 of them see 20 or more new testicular cancer patients a year.
So, the vast majority of guys are treated in the periphery, in medical centers. And, you know, the treatment of testicular cancer is not all that difficult, as long as the patients are reacting properly.
But it also means that most physicians don't have a whole bunch of experience. And sometimes, treatments can be just as much art as it is science. And so, having the ability to reach out to physicians that see 50 to 100 patients a year, it really is important to make some nuanced treatment decisions.
You know, you're right. And we found that too. We talked to two different doctors for the RPLND surgery that Max had to have. And we were quite uninformed, I'll say about it, not realizing how involved that surgery is. What you just described is very accurate, because one physician had lots of experience. And this was his main purpose in life. I'll say it that way.
And that's where we wound up going. And the other physician, yeah, it wasn't that same background.
I think the way you described it is important. It makes it very clear why people should look at that list. And I didn't realize that out of all the medical centers, people could go to only 20 that have a team that really focuses solely on, especially on testicular cancer. That's important, I think to know.
My other question around some of the work you've done is on the Ball Checker app. Can you talk about that, too? I think that's another just a great resource for men to know about.
09:18 Mike Craycraft
Yeah, so you know, we developed a mobile app that's very simple. It gives a couple of little facts about testicular cancer and more importantly, how to do a monthly self-exam and the ability to set a monthly reminder. And then we tell people to go to just ballchecker.com to download it.
What we found is, you know, nowadays, the traditional brochures, we actually had one event with some nursing students at Rutgers, and they came back to us and said, “You know, listen, no one picked up the full-size brochure.”
We had tiny business cards with how to do a self-exam on it. They said, “But we notice guys would take that and hide it in their pocket as they were walking away.”
So, the thought is if we can develop a simple app that can be distributed worldwide, that really just gives guys the tidbit of information that they need. And then, if they do find it an issue, they have the resources to get back in contact with us.
10:15 Joyce Lofstrom
That's great. Especially now, everything is mobile, and an app like that is just, it's a perfect option.
So now, I want to talk a little bit about your pharmacy expertise and just what you can share with us about the different kinds of chemotherapy that some of the patients go through. I know in talking with some of the other young men, this topic always comes up. And there are many facets to it that we could talk about.
My first question is just really about your role as a pharmacist or any pharmacist when it comes to putting all the chemo combinations together. And I know, you've told me too, that your expertise was, it was not in testicular cancer chemotherapy, but I know you could talk about this to us and explain it.
But I guess I really want to know, what happens when the drugs actually get to the patient in the hospital. I'm just kind of looking at the process, Mike, I guess is what I really want to talk about.
11:15 Mike Craycraft
Sure, sure. But in the hospital, and essentially, my entire career has been in hospitals. So, you know, it's a complex procedure, there are so many steps between the time the patient gets there until the chemotherapy gets infused.
The pharmacist’s role is, is more than just simply, you know, mixing the drugs and getting there. It's making sure that the schedule is right, the doses are right, looking at your labs and other vital signs, and making sure that everything's appropriate to be given.
So, you know, sometimes that can cause a little bit of delay. I think anybody that's gotten chemotherapy has gone through that delay. They're waiting for labs to come back or the drugs to come up or even making sure the proper pre-medications are there.
And sometimes, even intervening when, you know, labs might indicate that in a typical patient, the drug should be held. But testicular cancer, it can be a little different. The pharmacists can help push to say, you know, we really maybe shouldn't be holding that today, or those kinds of things.
12:19 Joyce Lofstrom
I know one thing that I thought was admirable and necessary, but I had not experienced it before was when Max was having his treatment. Pharmacists actually came to the room and talk to us and talked about what was going to happen. And some, as you mentioned, the pre- drugs that you take, perhaps for nausea or some of the other side effects, I'll say.
Do you find that a common practice now in pharmacy, I'll say, in the chemo treatment bit? Were pharmacists? I know they're part of the team. But you know, do they interact more with the patient actually in the room? Or, you know, I'm just interested in your insights on that.
13:05 Mike Craycraft
Right. Each infusion center and their educational process is going to be a little bit different, but the pharmacists do in the hospital play a very active role in the patient's care, either if it's rounding with the medical team, or the oncology team, or any number of different ways. But essentially, when you're in the hospital in any capacity, anytime there's a medication ordered, the pharmacist is going to be reviewing that before it actually gets to you.
13:32 Joyce Lofstrom
So, my question was around the role of the pharmacist when someone is in the hospital or specifically in his testicular cancer treatment. As I remember, when Max was there having his chemo infusions, the pharmacist did come in and speak to us and go through some of the medications and ask us how we could you know, work with him or her.
I mean, how, how we could just interact more, and I had never experienced that before. I haven't had chemo either. But I mean, I've been in the hospital, and I was just very impressed that the pharmacist actually came in and spent time and talk with us about what was going on medication-wise.
Can you comment on that, based on your experience, in just how the pharmacist now is or appears to be more in front of the patient?
14:25 Mike Craycraft
Yeah, why pharmacists, especially in a hospital setting, really do have an active role in the care of the patient.
So, you know, not only did they review every order that comes across, so before a patient gets the medication, a pharmacist has already looked at it, in particular with testicular cancer, or just oncology in general. That’s reviewing the regimen, making sure the doses are right, making sure the timing is right, how fast the medication supposed to be run over technical things like that, as well as reviewing labs and making sure that the doses are appropriate to give on the particular days.
The educational component can be a little bit different in each facility, whether a pharmacist will be there at bedside or not. But it extends not just from the oncology setting even into inpatient.
Pharmacists really do play an active role in rounding with the medical teams to reviewing patients, and even in specialized situations like infectious disease or cardiac care, where we have a pharmacist and a medical center that specializes just in that, to oversee and make sure each person gets the right care that they need.
15:33 Joyce Lofstrom
So now, let's talk about the specific at least three of the drugs for testicular cancer, Bleomycin, Etoposide, and Cisplatin I know that's a very common combination, of three or maybe two.
Can you just give us a brief description about those three drugs and the benefits of them when it comes to testicular cancer?
15:58 Mike Craycraft
Just in generalities, so, when you look at all three drugs, each one of them has a beneficial effect on testicular cancer in and of itself, and then, when you add them together, you get synergistic effects.
So, it's, you know, one plus one isn't two; it's three or four.
So, finding drugs that are individually active, that have synergistic effects, and then also, have different toxicity profiles, is really important. And that's where they come up with these combinations, whether it's the Bleomycin, Etoposide, Cisplatin, or just the Etoposide, Cisplatin.
Finding those synergies and different toxicities is really what lends to the beneficial benefit.
16:44 Joyce Lofstrom
I think you've answered the next question I had, which is why different drugs are used for different types of testicular cancer? My first thought was that well, different kinds of cancer cells will react in a certain way to certain drugs. Is that what it is? Or is there, I'm sure there's more to it than just that?
17:06 Mike Craycraft
No, it's really that simple, with a different mechanism of action for the destruction of the cancer cells. And you can try two different mechanisms that, you know, will yield an even better benefit.
Typically for testicular cancer, the drugs themselves are fairly straightforward. You know, regardless, if you have seminoma or nonseminoma. It's just the degree of what you need.
So, you know, there are some lesser chemotherapy regimens that can be used, you know, for Stage One disease to keep the cancer from coming back. And then, when you have patients that don't originally respond, that's usually because of resistance to the Cisplatin itself, which then obviously, is not a good situation and takes more aggressive treatments.
17:55 Joyce Lofstrom
So then, another question on drugs, not chemo drugs. And it's just I know, there's so many other drugs or medications that help people get through chemo and those drugs for nausea, I think, headaches, pain.
And my question on that is just, you know, you the patient really don't know what those are coming in. And obviously, you rely on the medical team, including the pharmacists, to make sure that you get what you need.
I kind of get the feeling that the sky's the limit, like if I have this situation, nausea, I can ask for the pain medication for that, if I have a headache? Does that make sense? Like what I'm trying to say is just there are so many drugs out there, but how do you manage that? As a patient and with a pharmacist?
18:51 Mike Craycraft
Yeah, well, you know, in most medical centers that are familiar with the treatment protocols for testicular cancer, it comes with a pretty much a preset cocktail of mixtures, so to speak, for supportive care. And that supportive care really has changed dramatically over the years.
You know, I've had the pleasure of meeting survivors from the late 70s and early 80s. And Dr. Einhorn, at IU, you know, talks about it that the first day of chemotherapy, the average patient would have thrown up 12 times, and nowadays, that average is less than one (day), and that's really because of the supportive care. It's not because we changed the chemo regimens.
So, there are so many different symptoms and trying to figure out, you know, what it could be. Some patients might develop a cough because they're having a lot of reflux, you know. It's not necessarily treating the cough itself versus treating the reflux or the, you know, the acid indigestion that will reduce the cough. So sometimes it can be tricky.
There are a plethora of supportive agents out there. I don't know how much control each individual could really have over it, except being open about the side effects or the experiences they're having with their treatment team.
20:02 Joyce Lofstrom
So, one last question on the pharmacy topic. And I'm curious how with the team because you mentioned sometimes the pharmacist will go on rounds with the medical team.
When you have, the team has a meeting about XYZ patients, or just in general, is the pharmacist always there?
How do pharmacists interact, I guess, with the team in terms of, and I ask that question more for assurance for patients to know that, that you, the pharmacist, you're part of that medical team…and are helping to make sure that there's a whole, complete package of treatment, which is a given in a medical center. But I don't think I understood it as much as I should have, the role of a pharmacist.
20:56 Mike Craycraft
Well, I mean, the pharmacist is just another member of, hopefully, a multidisciplinary team that’s overseeing the care for each patient.
And I think one of the best examples I have is very early on in my career, we had a massive, multidisciplinary meeting on a patient. The dietitian, who was overseeing, you know, the nutritional needs of the patient, noticed that the patient's liver enzymes were becoming elevated. And I was able to look at the medications they were taking and realized that they were probably getting a little bit too much Tylenol than they should have. And so, we were able to cut it down and have delivery reduced.
So, it's really having that look from all sorts of different angles and so many different eyes on the patient that you can catch things.
And then, perhaps, it's because a different discipline finds the solution to it. So that's why it's so important to have those multidisciplinary reviews of each individual.
21:51 Joyce Lofstrom
That answers my question. And I'm also glad you mentioned the dietitian because I think nutrition is such an important part of healthcare and in managing your health.
So well, what are you doing now? Tell us about your life? What 12 years since your diagnosis and what's going on?
22:09 Mike Craycraft
Yeah, for 14 years since the diagnosis in June, just keeping on keeping on, trying to reach as many young healthy individuals as we can and make sure that they're aware of testicular cancer. Then, you know, making sure that we're there for those affected by the disease and assuring that they're getting the best care and have the resources they need to get through.
You know, our goal is that hopefully, one day the testicular cancer diagnosis will be a small bump, and the individuals get back to living their lives and our mission will be fulfilled.
22:45 Joyce Lofstrom
Can you give our listeners, the URL to your website and anything you want to share about the Testicular Cancer Society that they should know about? Other than what you already have told us?
22:57 Mike Craycraft
I don't know how much more, you know. Obviously, we rely on public support to be able to help continue with our mission. Our website is just testicularcancersociety.org. If you're looking to try to get someone to download our free app, again, simply tell them to go to ball checker.org. Usually, young guys will find that a little cheeky and go ahead and do it.
23:22 Joyce Lofstrom
Okay, and my last question, what advice do you have for any young man that might think he has testicular cancer or is going through treatment now?
23:33 Mike Craycraft
Well, I think there are two different parts there.
One if, you know, a guy notices something different with their testicles, obviously getting in and mentioning to the physician in a timely manner. The sooner the better is certainly what needs to be done. Physicians and health care professionals don't find it awkward if you bring up the subject, even though as an individual you might feel you'd be a little awkward.
You know, the earlier it's caught, certainly, the easier it is to treat. Even if it's a benign condition, that peace of mind of just going in and getting checked out. And believe me, I went through seven months of not having peace of mind; it can be tremendous.
If you do end up being diagnosed with testicular cancer, certainly we're here to help you from literally the “I feel a lump” to the ultrasound. (We help you with) understanding what each individual step is and really making sure that you know the disease and, you know, making sure that you have the right questions to ask your doctor to make sure you get the best care. And that's ultimately what we're here for as well.
24:36 Joyce Lofstrom
Thank you, Mike. I think that's wonderful advice to end our discussion on. It gives people ideas of what to do if they are concerned about testicular cancer. So, thank you for being with me. I really appreciate your time.
24:52 Mike Craycraft
Well, thank you for having me. And thanks to everyone for listening.
24:55 Joyce Lofstrom
Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website and it's at maxmalloryfoundation.com where you can learn more about testicular cancer, donate, and also, send your ideas for guests on the podcast. And for spelling, Mallory is m-a-l-l-o-r-y.
Please join me next time for Don't Give Up on Testicular Cancer.
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