Prostate Cancer Series: How To Thrive With Cancer
“The Prostate Cancer Series,” focuses on Paul, who was diagnosed with prostate cancer in 2019.
In this series, Paul discusses how he transformed his initial shock and fear that followed his life-altering diagnosis into something good. After finding support through cancer groups, Paul has been paying it forward by helping others who’ve been diagnosed with prostate cancer.
With a desire to inspire and provide hope, Paul took to writing for Medium where he shared his cancer journey and the lessons he learned along the way. He now shares his story with us and discusses how changing his mindset and focusing on positivity has helped him on his healing journey.
Introduction
Tell us about yourself
Paul G.: I grew up outside New York City, in suburban New Jersey. I was an athlete and an editor of my school paper. When it came time to go to college, I decided I wanted to go to school in California.
I went to UC Santa Cruz, which is 2000 acres of rolling meadows and Redwoods overlooking Monterey Bay. I invented my own major called The Politics of Mass Media. I was also a disc jockey on the radio station and I had a sports show on the radio station. When I was done, I realized there were no media jobs in Santa Cruz so I went back to New York City and started my career.
Would you describe yourself as in control?
Paul G.: I was highly motivated, and this was the 70s. So there are plenty of highs in there as well. I wanted to explore different things. I knew what I liked. I loved sports, I liked writing.
The common thread is that you were a storyteller
Paul G.: I was probably telling stories when I was a child too. I jumped from the radio to CNN when it was first starting, and I went down to Atlanta where it was going to be the first 24/ 7 station. Nobody had ever done it before. I was hired as a writer and within a week I was a producer and within 2 weeks, I was a producer anchor. That’s the way CNN was at the time because they didn’t have enough bodies. Then I learned to become a storyteller in the video medium. I ended up doing a lot of high-end corporate stuff and a lot of nonprofit stuff, so I had to learn how to tell those stories as well.
Forty plus years of being in media, I consider myself, and I say this with humility, a master storyteller. I’m still working on my craft.
Recount the moment you met your wife
Paul G.: I was approaching Strawberry Fields at 72nd Street, and I saw this young woman lacing up her roller skates. And when she got up to go roller skate, I sidled up next to her and said, “Are you going to Disco Heaven?” Which is this place near the volleyball courts where everybody skates with these giant boom boxes. She’d never been there before. It wasn’t a truth or dare moment, but I pushed her a little bit and she went up there and skated around having a grand old time.
I was riding my bike around, but I was watching. When she left, I rode up behind her and threw out a line and she bit and I reeled her in and we sat and we talked. She was an advertising producer. We were both cutting videos to the song “Hot Together” by the Pointer Sisters. I mean, you talk about serendipity, and we made a date to get together. The other thing we found out is we didn’t want to live in New York anymore. We ended up in San Francisco and started from there.
You always made sure she was taken care of?
Paul G.: I won’t use the word ‘caretakers,’ we’re givers. I tell Wendy, “I never come home without something for you.” Whether it’s a muffin or it could be this, could be that. I’m always thinking, what could I bring her? I know she was always looking out for me. I think the great gift is not only being loved but giving love. I think in some ways we want that even more than just being loved. I feel that with my dog. As much as they say, “Dogs give unconditional love,” we also give them unconditional love back.
I had been a serial dater. I was in my mid-30s at that point. I knew that when they said this was the kind of girl I wanted to marry, she was hard-oriented. She was sweet, she was really cute, we were in the same business, we were both Jewish. A lot of things lined up. I think it was total karma that we met because 2 seconds I’m riding my bike in the other direction or she’s not lacing up her skates and we don’t meet.
Initial Symptoms & Diagnosis
I realized that I had gone from living a normal life to now all of a sudden, I’m in a club I never wanted to be a member of.
Paul. G.
Paul G.: I went to a regular checkup and the doctor said he felt something. I didn’t know what to think. I didn’t think it was good, but I didn’t think it was terrible. He sent me to a urologist and said, “I feel something there. Let’s do a biopsy.” I started to worry a little bit. Biopsies are not fun. They’re very invasive. They go in through your urethra and they’re taking samples. Afterward, I was sore.
I’m going to guess a week or two later, probably a week, I was in my car after working out. It was raining and I got a phone call from the urologist and he said, “You have prostate cancer.” That’s the minute your life switches. I was in shock. I was 63 years old, super healthy, and ate relatively well. I have a sweet tooth, but I didn’t have a lot of high-risk factors. There wasn’t a lot of cancer in my family. Later on, I found out 2 of my uncles had prostate cancer. It was like a kick in the balls, no pun intended. I was stunned. When I told Wendy, I knew immediately that she would be there for me 100%.
I realized that I had gone from living a normal life to now all of a sudden, I’m in a club I never wanted to be a member of. It’s this feeling of, what the fuck? I’m young, I’m healthy, I eat well, I exercise. How is this happening? It doesn’t sink in right away. You just know that life will never be the same again.
Choosing who to share a cancer diagnosis with
Paul G.: I’m a very private person. I have a few really good friends that I will tell almost anything, including women, friends, and couples. Unfortunately, both my parents had passed by then. Actually, that was probably fortunate because I know they would have worried so much. Also an unusual situation in that my older brother had frontal temporal dementia and he had passed, so just my younger brother knew about it. I didn’t want to go through it with Wendy’s family. My thing is, once you’ve told everyone it’s out, you can always decide later on who you want to share it with and how.
I remember reading an article in the New York Times that said the way people react to news about cancer can be very draining for the person who’s sharing the news. They may ask a lot of questions, including a lot that you don’t know the answer to. They may offer advice that you really don’t want to hear.
Everybody knows somebody other than their family or friends who’s had cancer, but if someone’s had breast cancer, leukemia, or lung cancer, it doesn’t relate to prostate cancer. Sometimes people say things that are inappropriate and I didn’t want to go through that. I figured, for now, I’m going to keep this to myself because my Gleason score was 4-3. That’s a whole thing in itself. You start learning that you get all these numbers, Gleason scores, quadrants of your prostate capsule, different kinds of reports, and genomic tests. It’s overwhelming.
What did your numbers show?
Paul G.: The thing I heard first was it’s a good cancer. I would never put those 2 words together. The reason they call it a good cancer is because it’s very treatable if it’s caught early. Not necessarily cured, but very treatable. I didn’t feel like I was one of the lucky ones. I got prostate cancer. The word cancer is what you hear. I found that it gets very matter-of-fact with doctors. They’re compassionate, but their job is to tell you the facts and the statistics.
We were getting all these numbers, the Gleason scores, and I was a 4-3. There’s low risk, medium risk, and high risk. I fell right on the cusp of intermediate, but I was on the wrong side of it. 3-4 and below are considered good candidates for active surveillance where you’re just watching your PSA levels. That made it a little challenging too, because I wasn’t high risk. I was on the cusp. Then they told me the genomic tests showed that it was aggressive, so that put me in another category.
I had a PSA scan, a highly sophisticated PET scan. They shoot you with radioactive isotopes and then iodine and you go into the machine with the clerks and they couldn’t find anything. So in some ways that was encouraging because it meant things were small and they hadn’t moved into my organs or lungs or bones.
On the other hand, it was like, if you don’t know where it is, how are we going to treat it? I had one of the top surgeons in the country so I was confident that I was in good hands but you have to make a decision early on. Are you going to do radiation or are you going to do surgery? The catch-22 is if you choose radiation, you really can’t do surgery later on. If you choose surgery, you can do radiation later on. Although, again, I didn’t know that a third of the men would need radiation later on. So here am I in this sort of limbo state of we can’t find it, you’re right on the risk of intermediate to low, but you’re on the wrong side of it. It is aggressive.
I wanted more opinions. I didn’t just want a second opinion, I want a third opinion. I ended back with the, “Your PSA is slowly going up,” and mine was low. The doctors kept saying, “We think it’s confined to the capsule based on what your Gleason score is and your PSA levels,” but they couldn’t guarantee it. I found out in January, I had the surgery, and I had to go back and look in April. I was tortured during that time by not wanting to make the wrong decision.
When did you tell your family about your diagnosis?
Paul G.: I was somewhat obsessed with thinking about it. It was always in the back of my mind. It’s hard to avoid that when you have cancer. I think I told our children a month or 2 after I found out. I didn’t want to worry them. I knew as I was approaching surgery that I needed to tell them what was going on. I also wrote an email to all of Wendy’s family. Now my family’s gone. My parents are gone. One of my brothers has passed and my younger brother is starting to fade.
I wrote them an email telling them what was going on. I was going to have surgery, but I was very clear about my boundaries and that I didn’t want to discuss it. At some point, I would share information as it came up, and I might have gone overboard with this, but I was very firm about my boundaries. I know they care and they love me and they want to support me, but I didn’t want to go down that road of getting lots of questions, and lots of phone calls so I played it pretty close to the vest.
Processing the emotions of a cancer diagnosis
I think for men, we don’t like to be weak.
Paul. G.
Paul G.: When you hear you have prostate cancer, for men, there’s a lot of fear because it’s a sexually related thing. You’re talking about your internal plumbing and the unknown side effects, which can be incontinence or sexual dysfunction. You don’t really want to talk about those things. You also think about dying.
I felt I didn’t want to put that burden of fear on other people. If I couldn’t project overwhelming confidence that I got this, I didn’t want to share other than with Wendy and only with Wendy. That’s how scared I was. I think for men, we don’t like to be weak. I like to be in control as much as possible.
I also grew up in a household where there was a lot of chaos, a lot of emotional chaos. I’m sure that made me even more of a person who wanted to have control. Suddenly I was thrust into this situation where I felt like I had no control. I did share it once I knew I was having surgery. After surgery, I remember coming out. You’re anesthetized and you know that this robot is being controlled by a surgeon. One of the big concerns is nerve sparing because there are all these delicate nerves around the prostate. I remember coming out very groggy and the surgeon saying, “I was able to spare your nerves and I didn’t see anything outside the capsule.” I felt like, okay, that’s good, but I was also wounded to the core.
Episode 2
Finding a cancer community
Paul G.: This is the core of my body and it was a shock to my system. Now, it was good that the doctors had said to me, “I think it’s confined to the capsule.” That did give me some relief. Having a catheter on alone is weird. You’re walking around with this bag.
I did join the men’s prostate cancer support group at Marin Health. They offer so much information. It’s the guys who’ve been in the trenches, I don’t want to say they knew more than my doctors, but they’d all been to so many doctors. Some had surgery, some had radiation, and some were on active surveillance. They knew all the drugs. They knew all the things.
I think part of it is, I was 63. I never think of myself as old. I thought of myself as young. Part of me still feels 18 or 25. You get a cancer diagnosis and you have a prostatectomy and you can start to feel a little old fast because you’re wounded. Not only wounded, there’s no certainty that you’re going to ever be whole again. If you have surgery, you will never be whole again, but you wonder if you’re ever going to get your old life back. For someone who liked to be in control and make things happen, it felt like things were happening to me and they were out of my control. That’s a tough one to crack.
One thing that does happen when you get a cancer diagnosis, in my case prostate cancer, you’re a member of a club. One of the things that’s really positive about that is every man who has gone through this that I met wanted to support me. They’d call me and say, “I’ll be happy to talk to you about it.” A lot of them say, “You’re going to get through this. It’s going to be okay.” They talk about what happened after surgery. They talk about incontinence. They talk about drugs, shots, pumps, and all the sexual things that you think, I don’t even want to know about, but you do want to know about it. I felt like I was in a community, but I have to be honest at the same time, it was a community club. I didn’t want to be in.
One of the positive things is once you become someone who’s been diagnosed with prostate cancer, all of a sudden this community opens up to other men who’ve gone through this and they all want to pay it forward. They all want to tell you about their experience and support you through yours to reduce the worry and to give you information you may not get from your doctors. But there’s so much information from the doctors, that it’s overwhelming. To have more practical terms broken down step by step makes a huge difference.
At the same time, I must say, going to the cancer support group again, I don’t want to spill all my beans. When you’re one of the new guys, you can feel the fear in the room. There’s a sort of separation between people who’ve just found out and sometimes they bring their wives with them, people who are trying to make a decision about how to be treated, and the men who’ve been there and keep showing up over and over again to support you. It was not pleasant to have to discuss the fact that my body had felt like it betrayed me. That was not an easy thing to talk about, and I don’t know that I tried to be matter-of-fact about it, but my body, my brain, and my body were definitely under a lot of pressure and stress.
This was now my people. It was healing in one sense, especially all the information they had that was easy to understand. But sometimes, there were people in there who were terrified. I had a hard time being around that energy. As I went to more groups and more sessions, I realized it’s geared toward men who are just finding out they have prostate cancer. There’s a lot of that initial overwhelm.
The power of having a cancer support group
Paul G.: It was a safe space to talk about prostate cancer because everybody in that room either had it or has it. It is important to unburden yourself however much you’re comfortable doing. The unspoken question for everybody is, how is this going to affect me as a man? That’s what people want to know. I think the cancer support group provides a place to share however much you want to share and ask any question you want to ask.
You’ll find out that your doctors are great, but the support group provides things that the doctors don’t. It provides emotional support in a way that’s not the doctor’s job. My doctors are compassionate, but it’s not their job to hold your hand. It’s their job to take care of you medically and to give you the facts. Sometimes the facts are pretty scary. The percentages of survival, the percentages of when the disease could come back. I encourage men to go to prostate cancer support groups and decide for themselves, is this for me? How much do I want to share? Are there men I want to stay in touch with during this or afterward? Because there are a lot of men who come there.
If they’re not done with prostate cancer, they’ve been dealing with it for a long time, and I mean a long time. They’ll tell you almost anything you want to know. It’s a chance to be around experienced veterans. You can always call someone outside of the meetings. The person who leads our group, Stan Rosenfeld, I called him my prostate cancer rabbi because I could call him anytime. I could ask him any question. There wasn’t anything I couldn’t ask.
How did having someone to answer your cancer questions help you?
Paul G.: It took some of the angst out of it. It made it accessible. The information was accessible whether or not I liked hearing it, because remember, it’s cancer. It’s not fun. You’re not at a men’s group to talk about, my job is like this and my wife and kids are like that. You’re dealing with your mortality, but there’s no other space quite like it. You’re amongst your peers and they’re going through the same thing you are. It’s an open invitation to say, okay, here’s where I’m at, here’s what I’m confused about. I didn’t get into saying I’m really scared. You don’t hear me say things like that, but you can feel it. I’m sure they can feel it. The sense of empathy and caring and wanting to make men feel informed, that’s part of being a little bit more in control if you really understand your options.
Why didn’t you discuss feeling afraid?
Paul G.: It’s not my nature. I don’t want to. I’m not going to say I’m scared shitless. I’m afraid I’m going to die. I have no control over this and my life will never be the same. That’s not what I wanted to share with them. I wanted them to give me some information. Give me some solutions. I think that’s what sometimes we’re looking for. We’re looking for solutions. You have a big problem, and sometimes there aren’t solutions other than looking for second opinions, and third opinions. The facts are the facts. You’ve got prostate cancer, this is your Gleason score, and you have to deal with that.
It’s a foreign experience to be in a group. All of a sudden, you just found out you had prostate cancer, and all of a sudden, you’re in a group of 20 men who also either had or have prostate cancer. They use the term “no current evidence of disease.” My doctor has never said cure. They don’t use the word cure. It’s really strange at first to be in this room with all these other people going through the same crisis. They know we’re scared. I didn’t feel the need to say, “I’m really, really scared.”
I did express a lot that I didn’t know what to do, I’ve got these two choices – surgery and radiation. Ideally, I’d like to find a way not to have to do either. Radiation also involves hormone deprivation therapy and that’s a whole thing in itself. I felt comfortable in the sense that there wasn’t anything I couldn’t share. I think I honored my feelings about it. This is as much as I do want to share. I know I can say anything I want here and they will support me and they’ll give me information and advice. You have to decide what your comfort level is. In fact, I would say you also have to become your own medical advocate.
Discussing a cancer diagnosis
Paul G.: I’ve dealt with a lot of doctors. I have a team. It’s double figures of how many doctors I have. Part of that is because there were complications. I didn’t talk to my doctors about my emotions. My main oncologist, Terry Friedlander, I said to him, “I’m scared. I don’t know what to do.” He was very compassionate and he said, “I understand. It’s really hard.” But he hadn’t had the surgery. He was dealing with it every day as a doctor. It’s a very different energy to be around men in the same boat.
Wendy was there with me I believe the first or second time. It was good to have her support there but I think she also became more scared. When she heard about some of these stories, the reality started to hit. That’s one of the things about a support group, it’s all about reality. This is what you’re going through, this is what your options are, here’s what a lot of us have learned, here are some of the doctors we recommend, and here are medications or things you can try. It’s like going to a diner with a big menu, the ones that have pages and pages. There’s a lot to choose from on the menu.
Not being informed about the medical situation
Paul G.: The ball was dropped a couple of times. The first time was when I wasn’t told that a third of the men needed salvage radiation later on. So I’m going into my healing stage thinking it’s done, it was confined to the capsule. I did have side effects from this wound in my body that took a while to heal. When you’re practicing your Kegels and you’re doing all these things like the catheter for 2 weeks, that was really weird and very uncomfortable. It was a relief when I got that out.
The other thing was, maybe because of the pandemic, I wasn’t getting regular PSA tests and I thought I’d been cured. I wasn’t told, you need to get one every 3 months. It probably wasn’t until almost a year and a half later, maybe 2 years later, that I took a PSA test and it wasn’t 0.002, which is what they say. That’s 0 because they always put the 2 there because it’s immeasurable at some point. So again, I’m like, what the fuck? I thought I was done. They said I got it all. All these things came rushing back, those feelings. Except this time they were stronger because this time, it’s back. You may never get rid of it at this point. That’s what it felt like to me. I looked for all these different ways to not have to go into radiation hormone therapy.
I had 2 pretty serious complications. There was a history of frontal temporal dementia in my family, which was genetic, and I had to get tested with the psychiatric oncology program, and that took a while. That’s the other thing about when you see specialists, you don’t see them a week after they tell you to see a specialist. These things can take months. You’re stuck waiting to see someone. Admittedly, my doctors made things much easier. They said, “I’ll put a word in,” and all of a sudden appointments appeared that wouldn’t have appeared if you were a first-time person coming in.
I asked for a routine EKG just when I was ready to start hormone therapy. As it turned out, there were some issues, some ischemia, and an enlarged heart. Now I had to go through cardiology oncology, and again, you’re waiting for the specialists.
Having a good medical care team
I must say this – UCSF has some of the best doctors in the world. I was very fortunate to be near a teaching hospital. There are 3 in California – UCLA, Stanford, and UCSF. I was lucky I had access to some of the best doctors in the world, but I was knocked for a loop. I went into this I can’t believe this is happening mentality. I did 4 PSMA’s because my thing was, I don’t want to get radiated if we don’t know where we’re radiating. In my mind, that’s like carpet bombing versus guided missiles, and we never found the target. The thing I learned about PSMAs, as sophisticated as they are, they’re good at seeing clumps or tumors where the cells have congregated. As far as individual cancer cells, they’re microscopic. In my case, they couldn’t find them. I realized we’re not going to find it. I’m going to have to make a decision in good faith. This is when I found my mind, body medicine person. That was when the road went right.
Episode 3
How did you process relapsing?
Paul G.: I was even more closed-mouthed the second time when it came back. I did not want to share that news. I had made a decision about treatment, so I didn’t need any questions about what I was going to do. I did tell my confidants and our kids. I can feel it when I tell somebody it’s not good news. The closer you are to people, sometimes the more it affects them. The people who love you, it shocks and scares them. It hits home for them in a way that, if you’re just talking to your doctor or some other medical professionals or you’re in a men’s group, it’s more a matter-of-fact than with people close to you.
I felt like, I don’t want to talk about this. I don’t know what I’m going to do. I even skipped a family reunion. I hadn’t told them yet. Instead of going and feeling like, I’m going to go there and not tell them what’s really going on in my life when they ask, “How are you?” That was when I decided I was going to work with a cancer coach. What I found was, there’s work for me to do that makes me feel like I do have some control over this and it can change my outlook on what’s happening now and what’s going to happen next.
Did you tell loved ones about relapsing?
Paul G.: I knew I could tell Wendy and that the reaction would be, we’re going to get through this. I was so fortunate to have a partner who I knew would be there and she would provide the support and confidence that I couldn’t feel right away. And for some time, my good friends, I felt that same sort of, whatever you need. If you don’t want to hear a lot, we’ll respect that. If there’s anything you want to tell us, we’re here for that too. My children stepped up. They didn’t break down crying or say, “Dad, what’s going to happen?” It was more like, “I’m really sorry. We’ll be there for you, whatever you need.” I know that not everybody has that in their lives. Some people are alone with this, so I was fortunate.
The second time around, I really didn’t want to talk about it. I did go back to the prostate cancer support group, and they’re very matter-of-fact. This is where I learned about 33% of the people come back to. I didn’t learn it from my doctors. A third of men have to get salvage radiation later on. They talk about hormone therapy and all different kinds of radiation, and there are different hormone therapy drugs. I felt like, now I’ve been there once before, I know what I can get in the prostate cancer support group. I know I can go there and get some answers, and very solid information from people who’ve been there and done that.
How did hormone therapy affect you?
Paul G.: I felt like I could ask anything. Hormone therapy affects everyone differently, as does radiation. Surgery is a little more straightforward. In fact, it’s very straightforward. They cut out your prostate. Now that I was entering into this more nebulous treatment, you hear about the hot flashes, the loss of libido, weight gain, and reduced bone density. The other side of it is that you diet and exercise as much as you can and meditate. All the things that can be used to help balance the treatment you’re getting because hormone therapy and radiation, they’re tough on the body. Men aren’t prepared for menopause. We develop a lot of empathy for middle-aged women at that point. Some of the hot flashes start and it’s like, oh, this is what you’ve been going through. It’s a whole new ballgame.
If I had a question about treatment and radiation or hormone therapy, I felt like I could get really solid information and things I didn’t necessarily even hear from my doctors. Not that my doctors aren’t super knowledgeable, but I think doctors and radiation oncologists stay in their lane. In my case, a cardiology oncologist stays in his lane. When you go to a cancer support group, there are no lanes. It’s whatever you need. You want to talk about hormone therapy? We’ll talk about it. You want to talk about sexual function? We’ll talk about it. You want to talk about radiation effects? We’ll talk about it. There are things some of these men have been doing for decades and decades. They know all the doctors. They know all the different symposiums, the papers that are out there, and the statistics.
Navigating cancer statistics and survival rates
Paul G.: That really shocked me when I talked to my oncologist. I asked, “What are the chances we’re going to get this eradicated and I’ll be done with this? It’s not 100% based on your age, your Gleason scores, the decipher scores, and the genomic scores, I found out. I got different numbers from different doctors. Some would say, “You have a 25% chance based on statistics and studies.” They were just throwing these numbers out. “You have a 25% chance of living 10 years or 15 years. This is what the studies show for men with your Gleason score, with your surgery, with your decipher score. These are what the statistics show.” That’s sobering because now you’re talking about death, and that’s something nobody wants to talk about.
You’re in uncharted territory. You don’t know, they don’t know, and every time you take a PSA test, there’s no current evidence of disease. The good news is I just had my first 3-month past treatment PSA test and there was no sign of disease. I admit it’s a struggle for me to fully accept that’s great news when I know that I’m going to have to keep testing for years to come. This is where the mind-body medicine also comes in. Once I changed my attitude, it was, we got this, I got this, I’m going to keep this cancer out of my body and I’m going to do everything I can to stay healthy. That was a turning point in my treatment. I had oncology tumor boards meet twice about my thing because, between neurology and cardiology, it’s a little more complicated. They all said the same thing – hormone therapy and radiation.
What drew you to your cancer coach?
Paul G.: I know the value of a coach. I used to work with the top coaches in professional basketball, so I know we need teachers, mentors, and particularly coaches. Coaches provide not only expertise but also support. They will call you on things that you need to address with the goal of getting better. You’re improving, you’re gaining new skills. The term cancer coach appealed to me because I’d done enough therapy in my life that I’m talked out.
I’m sure there are plenty of therapists who you can talk to. In fact, there are a lot of people at UCSF. I talked to palliative care and a bunch of counselors. They’re great, but they weren’t going to be there for me day in and day out. That’s not their job and they’re busy so the idea of having a coach appealed to me. I could tell that he was filling a role that I needed. I wanted someone who was totally in my corner, but who was going to support me and push me. At that point, I was not feeling optimistic. I was scared, pessimistic, maybe skeptical, but I was not feeling optimistic.
I learned I could gain practical tools like meditations, cancer visualizations, writing in a gratitude journal, and self-hypnosis. All of a sudden I realized, this is something I am in control of. When you focus on gratitude, your life perspective changes. It’s like, what is working in my life, not what isn’t working. We know what’s not working with cancer, what is working, and how can I make it work even better. How can my mindset work even better?
Mind-body medicine sounds confusing to people. What does that really mean? It means using the power of our minds to lift us up into a feeling of not necessarily being in control, but playing our part, being in the game, and not just counting on our doctors. To believe that I had a role in my healing, I embraced it. I signed up for it. I was doing hormone therapy, I was practicing these tools, and I was using my mind and my spirit to become a part of my healing.
Letting go of fear
Paul G.: I was letting go of a lot of the fear and feeling like I could be in charge of what’s happening to me. That shifted everything. You have this feeling when you’re diagnosed with cancer that the doctors are in control, the universe is in control and you’re not in control. I felt like, okay, here are practical things I can do to support my doctors. Also for me to push it to another level where I’m part of the healing. I would wholeheartedly recommend to people to consider having a cancer coach or somebody who’s going to be there to push you to be your highest, most positive, and most powerful self.
Being part of your own healing was new for me. I learned that the fear was going to make things worse. It wasn’t healthy for me, fear. Optimism and practical everyday tools helped me see that I was attacking the cancer. I used these visualization exercises. When I was underneath the linear accelerator, I would envision drones because the thing rotates, zapping the cancer cells in my body. I swim laps 3 or 4 times a week. When I was in the water, I visualized dolphins zapping my body with sonar. Other times it was waves washing the cancer cells out. I was focused on being part of my healing and I think that was really powerful. I kept to my gratitude journaling. I wake up in the morning, what am I grateful for? I go to bed at night, what am I grateful for? And that’s a different mindset than, what am I scared of?
What are practical things people can do to better their cancer journey?
Paul G.: There is integrative oncology. There are departments in integrative oncology, so it’s not just surgery and radiation. UCSF has an integrative oncology department, and you have the Internet, which actually is a Pandora’s box because it can scare the living daylights out of you. You can find out things that you might not have known on your own.
What would you say to someone diagnosed with prostate cancer?
Paul G.: When you’re first diagnosed with prostate cancer, it’s a shock and it’s easy to feel terrified and out of control. You have no control. I would say that when you talk to other men who’ve been there or who are there, you realize you’re not alone. In my support group, there was nothing I couldn’t discuss with them. The most personal, private, emotional, mental, and physical questions. There was a sense of relief that I’m not in this alone. I have a resource outside of my doctors because doctors are busy. It’s like a business and they’ve got appointments left and right. Whereas the support group was, “You need us, call us.” I was able to, even with my second time around, pay it forward with other men. If someone needed to talk about prostate cancer, they could call me. Some people are going to think of gratitude journaling and visualizing drones zapping the cancer away.
What you can hear in a support group is, there are no guarantees. But here’s what we know and here’s what worked for me. There’s a big difference between saying, “You ought to” and someone saying, “This was my experience,” and then you can ask them about their experience. Getting out of your head or getting out of your body with the emotions where you’re just obsessed…My mind would just keep spinning and spinning the same old questions and worries.
Go somewhere where you can get answers if you have questions and you’ll get support immediately as long as you need it. You can go for years if you have to. There’s no limitation on it. They’re meeting again in person once a month. I think men are more solitary creatures than women. Women, I’m always amazed, they get together and within 2 minutes they’re talking about the most personal parts of their lives. Men, we’re more comfortable talking about what’s happening in our business, sports, and politics. Sometimes I’ll say to some men that I know there, let’s drop deep. Let’s cut the bullshit and get right to it. With men, we’re in a place we’re not used to being. We’re feeling weak and scared. With prostate cancer, it’s like, what kind of man am I going to be after this? That’s a pretty tough question for someone to deal with.
The power of sharing your cancer story
Paul G.: I never thought I’d write about my prostate cancer. Then I got to the point where I wanted to pay it forward. I realized, as a storyteller, that that’s how I could pay it forward. Also, what I’m doing here today. I knew I could share my experience in a way that was very accessible. I started to write it knowing that I didn’t have to share it with anyone. I’m an inveterate rewriter and that’s what I think makes great writing. People are willing to rethink and rewrite. I’ve been an essayist for decades, so I know how to tell that kind of story.
I started writing it and kept it to myself, come back, write it some more, come back, go at it again. I have a friend who’s a writing coach and editor. She looked at it and gave me suggestions. I kept working it and working it. I showed it to my cancer coach and after a while it was like, I will tell this story. I will take that huge leap of faith – and when I say huge, I mean huge.
I tried to put some humor in it. It was dark humor, but I felt like this was a way for me to make the best possible use of my experience by sharing my story with other people. I still feel like that’s my gift to give and my way of paying it forward. I don’t wish this cancer on anybody. I know what it’s like to be diagnosed with prostate cancer not once, but twice. I want them to know that even though there’s a lot of fear and angst and uncertainty, there can also be a silver lining to having cancer. With this kind of medical crisis, you can decide who you really want to be in your life. You can see who you really are and how you want to live. That’s what these life crises often give you the opportunity to do. I didn’t want to live in fear and I didn’t want to live tagged as the cancer guy. I wanted to live fully. I wanted to do the things in my life that maybe I’d been putting off. I felt like I’d been given a gift. Now it’s time to share this gift with others. I can’t cure their cancer, but I can tell them things that, from my experience, changed everything.
Describe discovering you have a family history of prostate cancer
Paul G.: What happens with families is when someone passes, they take their stories with them. Unless you’re one of these people who’ve done interviews with the elders or videotapes of the elders, you’re not going to know directly from them because they’re gone. Their kids, my cousins, are mostly on the East Coast. I’m not really close with my cousins, so I’ve never asked them. I never called them up and said, “By the way, your fathers, what did they pass away from?” I found both of my uncles died of prostate cancer. I believe they were in their late 70s or early 80s. That was a real surprise. It was one of those things I probably didn’t want to know about because that made me worry even more. It would have helped to know because my doctors would have wanted to know. My brother had anal cancer, but that’s not related to prostate cancer.
I do recommend that people ask the hard questions of their family, including those who’ve passed, is there a history of cancer, and with men, is there a history of prostate cancer? Because it does give your doctor information that will help you in the long run.
It’s the same thing with the genetic disposition of dementia in my family. You want to tell your cousins about this. We think my father had it. He was the one who started with it or it could have been his grandfather, but who knows? So if they’re my uncles, they’re brothers, part of that same family, they should know about it too because it could be passed on to them and to their children.
Laughter is the best medicine
Paul G.: To me, the old adage that laughter is the best medicine is true. It’s scientifically proven. It raises your endorphins and dopamine levels, and your blood pressure lowers. It’s all the good stuff and it’s so much fun and so bonding with other people.
I did want to mention that laughter is also a big medicine. So when we’re talking about surgeries and hormone therapy and radiation, we talked a little bit about finding the positives in your life. Laughter is one of the most powerful medicines and anyway, you can cultivate laughter. There’s the famous story of Norman Cousins, who was diagnosed with cancer. This is probably 50 years ago, maybe 60 years ago. He watched, in the hospital, Groucho Marx and the Marx Brothers movies and all these other comedies, and he really felt that part of his healing was laughter.
When you’re in a group of people, it can be very healing. It can be very powerful because what it does is it opens your heart. I think that’s one of the things about having prostate cancer is your heart tends to close down. You clench in your body parts, in your heart, and in your mind. Anything that can unclench your mind, body, spirit, and brain, anything that can relax you, release you and bring pleasure and joy, that’s big medicine. That’s big medicine.
Focusing on the positive
Paul G.: My dog is some of the most powerful medicine I can have. Being around her and being able to love her all the time and feel that affection coming back…Things that just make you smile. I know cancer is not funny. It’s not happy. But there are still things in life that are joyful. I really urge men who are dealing with cancer to find joy, or at least something they’re grateful for. It could be that you’re alive, that the sun is out, a roof over your head, food, family, or a good job. Whatever it is that while this is going on, it’s not the only thing in your life. Prostate cancer is not the only thing going on in your life. Find other things that balance out. I’m still living, I’m still here, and I’m going to make the best of this. I’m going to trust my doctors. I’m going to trust my mind and my body to help me heal. Again, laughter was one of them for me and still is. I went to a comedy club last night. When you leave, there’s this feeling of, that felt really good.
Don’t think about it as a death sentence. Prostate cancer is the second leading cause of cancer deaths in men, but if you read the statistics, that is about 35,000 men a year. That’s a very small number. Hundreds of thousands are diagnosed with it each year. The doctors will tell you most men die of prostate cancer, not of prostate cancer. You may get into your 70s or 80s and have prostate cancer and they may say, “Your Gleason scores are low. We don’t need to treat you unless you really want to be treated. Go on and live your life.”
My thing is don’t go down with the ship. Shit happens, things happen, life happens. Deal with it. Prostate cancer, as much as I didn’t want to hear, ‘It’s a good cancer,’ it’s a lot better than some of the ones where I’ve been on some of the support group sites with people who have lung cancer and pancreatic cancer and breast cancer. Those stories are terrifying. With prostate cancer, I think it’s good to believe that there are resources and hope. That’s what we all want. We want hope. That’s my story and I’m sticking to it.
Why do you think your story has resonated with so many women?
Paul G.: I think the reason my article resonated with women is that women open their hearts and they deal with cancer in a different way. They’re in touch with their emotions. They’re used to talking to other women about their deepest feelings, their most private feelings, not even hesitating sometimes and sometimes even with strangers. I wasn’t totally surprised that women were the ones who were commenting and highlighting because women are naturally focused on healing, communication, compassion, and love. That’s not to say men aren’t. We’re more like onions. You have to peel away the layers. I always think of Shrek, where the donkey says, “You’re like an onion. You got to peel away the layers to get to the good parts.”
A man talking to women about prostate cancer is a little strange because you’re talking about the most private part of your body and what could be permanent side effects. I had a lot of reactions to hormone therapy from women saying, “Welcome to my world.” In general, I’d say I’m very comfortable with women, I’ve always had really strong friendships with women. I wasn’t surprised by the kind of support I got from women about sharing my story.
What advice do you have for someone on their own journey with prostate cancer?
Paul G.: I’m taking on this role. It’s not something I thought I’d do. I was lucky to find great doctors. I also had a coach that opened up a whole new world for me of self-healing. It was total serendipity and luck that I happened to find him in a Google search.
Every man has his own journey, his own path, and has to be his own medical advocate. You can’t just count on your doctors. You’ve got to ask questions. You’d be well off to get second opinions and go to cancer support groups. You’ll hear things there that you won’t hear anywhere else. I came out of the cancer closet and really felt like I had to pay it forward to other men and participate in something like this. I’ve been through this now, and I’m still going through it, but I’ve been through this, and it’s an act of selflessness to want to help other people go through this.
It’s hard to get a diagnosis of prostate cancer. Yet, there’s hope and there’s healing. There’s a silver lining in this. You can see parts of your life and ask, is this how I want to live? Is this who I really am? What do I want to do now? Not only do I want to be cured of cancer, but how do I want to live? What have I learned through this process? Time is precious. We’re not guaranteed anything. We all go at any time. You read the newspaper every day and someone can die at 20. My dad lived to 98, but there are no guarantees in life.
So, if you’ve been diagnosed with prostate cancer, don’t waste your time and energy on the negative part of it. Trust your doctors. Trust whatever healers you end up with. Trust your men’s support group and most of all, trust yourself. Trust that you will find a way through this journey. There’s no guarantee that you’re going to be cured. But listening to other men talk about this, you can see that you’re not alone and that there are happy endings or at least life changes that you didn’t know were possible. I put my story out there and I can continue to expand that story. I’m doing something noble by taking that leap of faith and coming out of the cancer closet.
Special thanks again to Janssen for its support of our independent patient education content. The Patient Story retains full editorial control.
Prostate Cancer Patient Stories
Clarence S., Early Stage
Cancer Details: PSA levels fluctuated but were never extremely elevated, cancer contained to prostate
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment:Radical prostatectomy (surgery)
Steve R., Stage 2
Cancer Details: Started at stage 2 and gradually progressed to stage 3, and then to stage 4 with metastasis to lymph nodes
1st Symptoms: Rising PSA score
Treatment: IMRT (radiation therapy), brachytherapy, surgery, and lutetium-177
Al Roker, Gleason 7+, Aggressive
Cancer Details: Aggressive but caught early
1st Symptoms: No symptoms, caught at routine physical with PSA test
Treatment: Radical prostatectomy (surgery)
Bruce M., Gleason 8/9, Stage 4A
Cancer Details: Staged Gleason 6/7 pre-surgery, post-surgery changed to 8/9, PSA level at 27
1st Symptoms: Urination changes, brother’s prostate cancer diagnosis
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Casodex & Lupron)
Dennis G., Gleason 9 (Contained)
Cancer Details: Staged Gleason score 9
1st Symptoms: Urinating more frequently middle of night, slower urine flow
Treatment: Radical prostatectomy (surgery), salvage radiation, hormone therapy (Lupron)
Theo W., Prostate Cancer, low-end high-risk
Cancer details:
Low-end high-risk prostate cancer, early kidney cancer
1st Symptoms: PSA level of 72
Treatment: Surgery, radiation
Jeffrey P., Gleason Score 7
Cancer Details: Diagnosed at 59, biopsy had not detected it
1st Symptoms:None, routine PSA test, then IsoPSA test
Treatment:Laparoscopic prostatectomy
Mical R., Stage 2
Symptoms: No symptoms, caught at routine physical with PSA test
Treatments: Radical prostatectomy (surgery)
Mark K., Prostate Cancer, Stage 4
1st Symptoms: Inability to walk
Treatment: Chemotherapy, monthly injection for lungs
Prostate Cancer Series
Prostate cancer patient Paul discusses his cancer journey, including how he processed his diagnosis, his experience with hormone therapy treatment, how he found support, and his advice to other prostate cancer patients.
One reply on “Prostate Cancer Series: How To Thrive With Cancer”
How do I find a support community please?