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Prostate Cancer Uncensored | Feat. Craig Gelfand

 

 

 

 

Welcome to Prostate Cancer Uncensored, a podcast produced by ZERO – The End of Prostate Cancer. This episode is brought to you in partnership with Bayer. Today, our guest host is Twisted Sister’s Jay Jay French. He’s a rocker and author and a prostate cancer survivor.

Prostate Cancer: Uncensored podcast unfiltered discussions with researchers, caregivers, patients, and medical professionals about prostate cancer. Listen online, or subscribe and download on your favorite podcasting platform; episodes are available for listening on Apple PodcastsAnchor.fmStitcherGoogle PodcastsTuneInPlayerFMPocket CastsSpotifyPodBeanRadioPublic,


Dr. Reggie Tucker-Seeley:
Welcome to Prostate Cancer Uncensored, a podcast produced by ZERO – The End of Prostate Cancer. I’m Dr. Reggie Tucker-Seeley, ZERO’s vice president of health equity, and I’m joined today by Mr. Craig Gelfand, a prostate cancer survivor here in Los Angeles, California. Thank you for joining me today, Craig.

Craig Gelfand:
It’s my pleasure, Reggie. I’m ready to tell my story.

Reggie:
Great. Craig, you and I have had a few conversations about that story, about your prostate cancer journey, and how we got connected here at ZERO. I’m eager for our listeners to hear that story. First, can you tell us a little bit about yourself, such as where you’re from originally and a little bit about your work background?

Craig:
Sure. I am a native Californian. I was born in the San Fernando Valley and still reside here. I have been working in entertainment for the last 30 some odd years. During the pandemic, when I was not working for a while, I had a little time to reflect and thought about what do I want to do for the last chapter of my working career. I am now trying to focus on helping people with prostate cancer since I had a great outcome, and we need to bring more awareness to prostate cancer because it seems to be like the little secret that nobody wants to talk about.

Reggie:
Yes. I know in one of our conversations, you talked about your background in television. If you can give our listeners a good understanding of where you were in your life when your prostate cancer journey started.

Craig:
Sure. I was working at Nickelodeon at the time. I was in the promo department. The backstory was in 2014, I just felt like I was getting a little thicker than I should, and I wanted to get back in shape. I hired a trainer and I started taking spin classes, which I love doing both. In that time, because I was going to the doctor every year for my blood panel, which is pretty much a physical these days.

When I started working out and started losing weight and started feeling great, I did not go to the doctor for over two years because I figured as I keep losing weight, my cholesterol will be lowered, my sugar will be lowered, all those numbers would be great. I neglected going to the doctor for over two years, which was not smart at somebody at my age because we should do a blood panel every year.

In 2016, I finally went and got my blood panel done. Thinking I had lost all this weight, I was feeling the greatest I’ve ever felt, and I’m on top of the world, I get a call from my doctor saying, “You need to call a urologist immediately.” I’m like, “Why?” He said, “Because you have a very high PSA.” I’m like, “What is a PSA?” He explained it to me. What I found out that day was 0 to 4 would be a normal PSA, and mine I think it was 10.9, so hovering around 11.

Of course, I went on the internet and I completely freaked out because everything pointed to that I had prostate cancer. I started reading all this stuff to educate myself. I obviously went to a urologist. They did the digital exam, and they thought I had prostatitis, which was an inflammation of the prostate because they didn’t feel any irregularities in the prostate, which is what the digital exam usually does. I was thrilled. I was like, “Great. I don’t have cancer.”

I went on Cipro for a month, which is an antibiotic that’s supposed to clear up any kind of infection and take away the inflammation. I went back a month later and had my PSA done, and it went down to eight. I was thrilled. I’m like, “I’m on the road to recovery.” The doctor was like, “No, it should be back down to normal. It’s not enough of a drop.” That then started the process of an MRI. I was at a doctor’s office in the San Fernando Valley.

I did not care for some of the care and responses I was getting once I had the MRI, so I switched to UCLA, which I was completely thrilled I did and very happy with. We did another MRI, it showed a little lesion in the top part of the prostate and that’s why the digital exam did not feel any irregularities of the prostate because they couldn’t reach it. They needed longer fingers.

The MRI showed up a lesion. I had a biopsy, which again, Reggie, I told you. All these things that I knew was going to happen, I was fearful of. You’re going to put a what up my what and do what? I was just like, come on. It wasn’t as bad as I thought. I wouldn’t want to do it every day, but it wasn’t as bad as I thought. I got diagnosed with prostate cancer, and that was in August of 2016.

Reggie:
Something that you mentioned that you felt good and you weren’t sure about you need to go to the doctor to get all of these tests done. A lot of men may be apprehensive or nervous about being screened for prostate cancer, especially if that overall they feel pretty healthy. What is your message to any man that might feel hesitant about being screened for prostate cancer?

Craig:
My message is, and that’s why I wanted to partner up with zerocancer.org because we need to bring awareness to it. Everybody needs to get their blood panel done once a year and you must ask for a PSA. Apparently from what I’m hearing, they don’t always check for a PSA. You must check for your PSA. You must know your number. The digital exam is not that bad.

I know people freak out. It’s not horrible. If it’s lifesaving, it doesn’t matter even if it hurt, and it didn’t. It’s not like they spend a day up there. It’s a quick little examination, and it could save your life. My passion right now is trying to bring awareness, education, and early detection because early detection is the key because I had no symptoms. That’s why I was more blown away than anybody when I got this diagnosis. I had no symptoms, and there are not a lot of symptoms for prostate cancer.

Some people do experience symptoms. I did not. That is another reason for having the test. An early detection, like any other cancer, is the key to survival. There’s a lot of treatments. I’m not a doctor. You are, Reggie. I’m not a doctor. There’s a lot of treatments out there now, but even if you have to have it removed, early detection is the key because you don’t want those cancer cells to escape the prostate because that’s when you can have issues. Early detection means it is usually always contained within the prostate and you should be fine.

Reggie:
I think the quote for the podcast is going to be, “At least they aren’t going to spend a day up there.” I think you are encouraging men to get screened early, I think is the key here, and that it can be life-saving because we know that with early detection that your outcomes are better if it’s detected early.

Craig:
Absolutely.

Reggie:
After you were diagnosed, what happens next? I always tell folks, I am a doctor, but I am a PhD doctor, not an MD doctor. I’ve done a lot of healthcare delivery-related research, and I struggle with navigating the healthcare delivery system. Tell us a little bit about what the process was like for you following diagnosis.

Craig:
Absolutely. Just so you know, I’m not a doctor either, but I am a question-asker. Not all doctors love that, but for me, the more information I had, the more I was able to deal with it and knew what I had to do. When I got diagnosed in August, again, UCLA felt that it wasn’t an emergency based on where the tumor was located and stuff, and they’re swamped, which is very sad to say. The urology department of all these places are swamped because prostate cancer is rampant.

I didn’t have surgery till November. Between August and November, your mind plays tricks on you that you don’t like that word cancer, you don’t like knowing that cancer is living within inside you. I just educated myself the best that I could. Again, since I had two months to think about it, I was freaked out about, I’m going to have the surgery. I never went down the path that I might be incontinent from it or anything like that because it– They basically said I was young, your nerves will heal.

Not that you want it, but the younger you get it, the better you are because your body heals better when you are younger. I was paranoid about coming home with a catheter for a week because you have to come home with a catheter. I was like, that’s going to be horrible, the surgery is going to be horrible. None of it was horrible. Again, you don’t want it, we can all live without it, but if you have it, you got to deal with it. I had a very positive experience with the exception of after I had surgery–

I think this has changed a little bit because this is back in 2016. At that time, you would have a blood panel done in three months, and at that time, you should be undetectable. You should not have a PSA number, because your prostate is gone. They allow 0 or .01 or .02, that I was informed of, is still considered undetectable. I go and get my blood test very nervous because it’s my first blood test after it, and unfortunately, I was detectable. Not high, it was .24, but I was pissed.

I was just like, “Everyone said I had the best case scenario,” and now I’m like, “Well, what do I need to do?” They’re like, “You now have to have 40 days of radiation.” I was just like, “God,” but I was going to do it because I wanted to live and I wanted to survive. They also had suggested that I take these Lupron shots, which is a shot that lower your testosterone because when you have prostate cancer, testosterone, as you know, Reggie, I feel like I’m telling– you already know that, but testosterone feeds prostate cancer.

I battled taking the shot because they say it’s like a male menopause. You’re going to get sweaty and blah, blah, blah. I’m like, “I’m already hot. I’m always warm and sweaty.” I fought it for a couple of days. Then again, I thought, “You know what? I need to do everything I can to survive because if I do the radiation and it’s not 100%, I would always say if I had done Lupron, maybe that would’ve helped.” I did the Lupron. It was two shots. It was every three months I had one shot.

Again, I say to Reggie, I don’t know how your body knows when you have a shot that lasts for three months, how it works, but I had that. I had blood work done before radiation, and my PSA went down to 0.04. I was just hovering almost to undetectable. I said, “Can I avoid radiation?” They’re like, “No, the Lupron is working, but you still need to have the radiation because some cells escape somewhere.” That was my journey to that point.

I did not have radiation until June of 2017. I don’t actually know the reason why we waited from February to June. I had radiation, apprehensive about that. I went every morning at seven o’clock, AM, obviously so I could then exercise afterwards and go to work. I never had any side effects from it. I do feel fortunate. I don’t think there’s a ton of side effects from radiation as far as– It’s not like chemo. I was able to exercise like I said. I wasn’t tired. I did really well.

Since that point, I have been undetectable. I have blood work to do in the next couple of weeks, which will be five years, and God willing it’s undetectable. I am in remission. They don’t use the word here, but I’m in remission.

Reggie:
Yes. You mentioned throughout your journey you would seek out information and trying to educate yourself about what was happening.

Craig:
Yes.

Reggie:
This is a little off script from what we plan to talk about. As you were talking, I was thinking about your process for seeking out information and how the internet has so much misinformation out there. What were some of your strategies to make sure that you were getting the best information and right information?

Craig:
I didn’t know that many people that had had prostate cancer. There was no family history. I did talk to as many people as I could, but most people didn’t have the right information for me. I had a doctor friend, so I asked him about that because your concerns are you want to be able to function after you have the surgery. That’s why you want the best doctor, so you can. I did as much research as I could. Sometimes the internet can really screw up your head.

I felt pretty confident. I’m not really sure why. I didn’t want to go down the negative side. It doesn’t help. I just try to stay on the positive side. For me, personally, I said, “Can I keep my prostate and do other kinds of treatments?” They were like, it really wasn’t advisable for me. Then I thought about it. I’m like, “Because I’m a little neurotic with my health,” I was like, “I need the cancer out of my body. I needed out. I don’t want to know that I’m doing–” There’s different kind of radiations you can do, but it’s still going to be inside me.

I didn’t want it. I knew I was going to do that. That was basically it. I just hoped for the best and went about my life. I chose to do this, and I’m not telling everybody they need to. I didn’t tell anybody at work what I was going through. Work was my escape actually, because of my neurosis in my head, every night I was like, “Damn, I have prostate cancer. I have cancer in my body.”

Going to work was my escape. I didn’t want to have to discuss it. For me, I talked about it after, but not before. For me, that helped. It was 8, 10 hours a day, I didn’t have to think about it. Again, that’s how it worked for me.

Reggie:
I’m so glad that you reached out to us because organizations like ZERO fill that gap for many men. We provide good, sound education materials that have been vetted by our medical advisory board. You can trust the information that we have on our website, and then also support groups. We have access to support that could help folks. If they don’t want to talk about it at work or they don’t want to talk about it in their friendship circles, we have support groups to help men navigate this journey.

Craig:
Which is so important because the one thing I did not research was organizations of prostate cancer organizations. I was just researching information about the cancer and the process and all that stuff. The reason I’m really excited about partnering up with zerocancer.org is people should know about this organization before they have prostate cancer. They should educate themselves about the prostate and what those numbers mean.

If God forbid, you do get diagnosed at some point, you know where to go. I would’ve loved to have had a chat room or a seminar or a webinar, whatever you want to call it, to ask questions. That’s one of the things I found. This is nothing against UCLA because I really was very happy with my services there. The doctors have to see a ton of patients a day. It’s just the way medical profession is. I’m a question-asker, so sometimes they didn’t have as much time for me.

I would have loved to have been able to reach out to an organization like this where I could get some questions answered and hear other people’s stories because– That’s what I want to do. Because I had a positive experience, I want to share that positive experience because hopefully, it’ll take away some of the fear. We need to discuss it like they do breast cancer in my opinion.

Again, I know why prostate cancer isn’t discussed as much, it’s a very personal thing, it could be a lifestyle change, all that stuff, but it needs to be discussed because I know a few people who have been diagnosed with it and they’re not really dealing with it at the moment. I know why they’re not dealing with it, but it’s like it’s your life. I want to help get this message out there and grow with this company and get people to be aware of what your prostate is in case you do get prostate cancer.

Reggie:
Yes, I agree. Sexual health is not something that we talk about. In this country, generally, but especially men, we don’t necessarily talk about how we’re doing below the belt.

Craig:
Correct.

Reggie:
You mentioned, as you were navigating this process, that you had a lot of questions and that it was really a little hard to get those questions answered as you were navigating the healthcare delivery system. What would you say the healthcare delivery system did well, and what would you say that it could do better for men navigating from diagnosis to treatment, to post-treatment, what we call cancer survivorship?

Craig:
That’s a good question because I didn’t feel that– I probably had enough information. I’m just an information junkie when it comes to stuff like that. I want to know. I want to know everything so I’m not surprised. I have to say with the exception of not having anyone to– I talked to a couple of people about it who had had it, they weren’t overly–

I don’t know. I didn’t find them encouraging. I want to be encouraging to people because I had a positive experience. I don’t know what I missed by not having information prior to surgery. Post-surgery, I think I knew everything that I needed to know. I will give credit to where I had radiation. I guess, do they call them a radiation oncologist? Is that what [crosstalk]?

Reggie:
Radiation oncologist? Yes.

Craig:
He was amazing. I had eight weeks and one day. I don’t know what the 41th day was, but I had 41 sessions. Every Monday I met with this doctor who was amazing. I loved him because he sat with me. I never felt rushed. He told me I was exhausting to him because I had a list of questions every week because I thought about more stuff as I would go through the weeks of radiation. I so appreciated that. I know that can’t happen all the time because, again, the medical profession doctors need to see a zillion patients a day.

That really helped me because I had that connection of what was happening with the radiation, what I needed to expect. Is it destroying my other organs in my body? I had all these questions. That was very helpful. I always left there feeling like I was going to be okay, and he gave me the answers I needed to hear, whether they were right or wrong. He gave you the positive answers. I wanted the positive answers, not the negative answer.

Reggie:
You said something that I completely relate to, and that is not liking surprises. I do not like surprises. Actually, I don’t like surprises in any aspect of my life.

Craig:
Me either, Reggie. Don’t get me a surprise party. I’ll walk out. I will walk out.

Reggie:
I was just going to say that, Craig. I am the same. I am exactly the same. I do not like surprises. I think having a place where you can get your questions answered so that as you’re navigating the process, there are no or fewer surprises as you’re navigating that space is really important. Craig, thank you so much for sharing your story. I knew that when we had our first conversation and you shared your story with me that it would be helpful to have other men hear about your story and hearing about your prostate cancer journey. My last question is focused on how we at ZERO can support you to amplify your message. What can organizations like ZERO do to help raise awareness generally? Specifically, let’s think about it. What does it look here in Los Angeles with such a large entertainment and TV or movie footprint?

Craig:
Yes, that’s a really good question. I don’t know if I have all the answers for that at the moment because again I just heard about you when we– I called you about having lunch, which was a couple of months ago. I didn’t even know you existed and that’s wrong. I should have known that you existed during my whole process. Maybe that was lack of me not googling properly, but this organization it should be known and talked about more.

I don’t know. Possibly they could do some storylines of prostate cancer. There’s a lot of medical dramas on TV, maybe something like that. That’s a good question, Reggie, and I don’t know if I know the exact answer at the moment, but I do feel like we need to get word out more, whether it be maybe– I know you guys have a run-walk, maybe we try and work on some other kind of– I’m using the word gala but maybe not a gala but something to just get more– because seriously, Reggie, I have a fairly good amount of educated men.

Even today I say, “Hey, do you know what a PSA is?” They’re like, most people think it’s a public service announcement. That’s what I thought because I came out of the promo world. They don’t know what it is, and I’ll tell them, and then I’ll go, “Do you know what your PSA number is?” They’re like, “I don’t even know what that means.” I’m not sure yet how to change that but we need to change that. I have a campaign in my head about know your PSA number just because– Two stories, and if we run out of time, let me know.

One of my closest friends his PSA went from 1.75 to 3.5 in the matter of two years. He was with a specific HMO. I’m not here to throw anybody under the bus, but he was with a specific HMO. They said, “Don’t worry about it. You’re still below normal. You’re still below four.” I was like, “No, you need to investigate it. I hope you don’t have any prostate cancer but your number has doubled in two years. That’s not great.” He pushed and pushed, and he had prostate cancer, and he took care of it.

He didn’t need radiation because it was such early stages. They took it out, no cells had escaped, and all that kind of stuff. The other reason that got me into this whole wanting to change, pivot my career is a friend of mine called me and said, “Hey, I have a buddy on the East Coast. He has prostate cancer. He doesn’t really know if he wants to deal with it, what he’s going to do.” I’m like, “Well, what do you mean? You got to deal with it.” I called him and he really wasn’t dealing with it.

He was trying to do a different diet change and his PSA was escalating. I told him my story. We talked for like 20 minutes. I said, “Obviously, you do what you need to do, make your choice, but this is my experience.” Then I didn’t hear from him for a while. My friend told me that he did take care of it. He came to LA about six months after that and wanted to meet me. I was like, “Great. Yes, I talked to you for 20 minutes. I don’t know what you look like, whatever.”

I went and met him. He pulled me aside at this little party and he said, “I got to tell you something.” He goes, “I’m here because of you. You saved my life.” I was so taken aback. I never had anybody say that before. He was like, “You talked to me intelligently, you told me how positive your experience was, and I went and took care of it, and I am here and I’m here because of you.” I was like, “Wow, I took 20 minutes out of my life to talk to somebody and I saved, at that point, a stranger’s life.”

That’s when I started pivoting about I want to help, I want to do something, I want to get the message out, and I want to save people’s lives because too many people are dying from this disease, Reggie, you know that.

Reggie:
Yes.

Craig:
That should not be the case. That shouldn’t be the case.

Reggie:
Yes, and too many people are dying and it’s different groups that it’s impacting differently. We’ve also talked about how for Black men we are one and a half times more likely to be diagnosed with prostate cancer, twice as likely to die from the disease.

Craig:
Correct.

Reggie:
All of the challenges with healthcare access that the Black community or that historically the Black community has struggled to get good access to good quality healthcare, all of those issues impacts those differences. It sounds like we need not only a campaign that raises awareness about prostate cancer, about PSA tests, but also about all of the organizations that can help folks as they’re navigating their prostate cancer journey.

Craig:
Correct. Again, that’s why hopefully I can work with your team and figure this out because I don’t know it off the top of my head yet, but it’s got to be discussed more and with women too because women are way better about this stuff than men. I talked to a lot of different women and they were like, “You know what? If for some reason after surgery things don’t work like they used to, I’d rather have my husband, my partner, my spouse, or whatever, I’d rather have them alive, and we will figure things out.”

My feeling again, I’m not a doctor, but I still feel early detection most of the time everything works okay. It might not be 100%. but it will work okay.

Reggie:
Yes. I think one of the things that we as a community, as a society don’t talk enough about is when a family member gets diagnosed with a chronic disease, that becomes a family issue, and it’s something that the entire family has to manage and deal with. We need to make sure that when we are providing resources, we’re not only providing resources for the patient who is navigating this disease, but also their family, those that are around them to support them, to make sure that they too have all the resources they need to help their family member get to the other side of a successful outcome.

Craig:
Exactly. From what I know, and again I’m not a doctor, and I’ll keep saying that, prostate cancer is one of the most curable ones in its early stages. If I was going to get cancer because there’s a lot of cancer in my family. I almost feel fortunate that I got this one that– Again, I hope I’m cured. I don’t know. To be very honest with you, every time I go give blood every six months, I become a nervous wreck until I get the results.

That’s just me. I know other people aren’t as neurotic as me, and that’s great, but for me, it does, it makes me nervous, but I’m very happy every time it comes back undetectable. Again my big line is early detection is the key. My mother is a product of that. She had breast cancer twice, early detection, radiation, she lived to 92. It’s just really important. It’s very, very important.

Reggie:
Now we have two phrases. The first is they won’t spend all day up there.

Craig:
Up there, exactly.

Reggie:
Get your test. For PSA, it’s a blood test so that one is a much easier test to get. Then the other one is early detection is the key and it’s definitely the key for prostate cancer as well. Craig, thank you so much for taking the time today to sit down with me to talk about your prostate cancer journey and helping to raise awareness about this disease. We really appreciate you working to make your voice heard and to talk to us here at ZERO.

I’m sure folks listening at home or in their cars, wherever they’re listening to this podcast, definitely appreciate hearing your story. Are there any last comments you’d like to make before we wrap up?

Craig:
No, just thank you for letting me voice what I wanted to talk about. I can also say look at your doctor’s hands. If he has more hands, it won’t be that uncomfortable. [laughter] Just don’t be so freaked out about having a digital exam. It’s life-saving. That’s the other thing. I hear people like, “I don’t want that exam.” I’m like, “It’s 10 seconds and it could be life-saving.” Just do it and make yourself aware, and know your PSA number. Find out what your–

Reggie:
Know your PSA number.

Craig:
Write it down on your phone, somewhere, make a note, and every year just keep track of it just to see. If it goes up a couple little percentages, little points, that’s okay, but if it goes from two to four or something like that, you want to investigate. We got to be our own advocates also because a lot of times doctors will just say everything is fine, and hopefully it is, but you want to know what that actually means.

Reggie:
Yes. To be your own advocate it’s helpful to have organizations like ZERO there with all of the resources, all of the information that you need so that you are partnering with your physician in ensuring that you have the best outcomes possible as you navigate this journey.

Craig:
The other thing I will say is if you don’t feel you’re getting the answers or the connection with your doctor, it’s okay to switch. You have the right to go to a different doctor. You want to feel confident. I know so many people who don’t ask any questions when they get a diagnosis. I’m like, “Why didn’t you ask?” They’re like, “I don’t know.” I’m like, “You need to ask.” If you don’t find that that doctor is responsive to you, it’s okay to go to another doctor, get a second opinion. It’s our lives. It’s your life. I think we take better care of our cars than we do our bodies, and people should start thinking about that.

Reggie:
Agreed. Craig, again, thank you so much.

Craig:
I’m done, Reggie. You know I can keep talking. I’m done.

Reggie:
Craig, thank you so much for your time today.

Craig:
My pleasure.

Reggie:
We’re going to wrap up here with our ZERO podcast Uncensored. Thank you so much for joining us.

Craig:
My pleasure. Hope to do it again.

Reggie:
Yes. Thanks, Craig.

Craig:
Take care. Bye, guys.

Voice-Over:
Thank you for listening to Prostate Cancer Uncensored, a podcast produced by ZERO – The End of Prostate Cancer. To download more podcasts, head over to zerocancer.org.