What It’s Like to Get a Prostate Cancer Diagnosis: A Real-Life Story September 7, 2017 Reposted with permission from Greater Boston Urology. In September 2013, Les Cavicchi was 59 years old and had, in his words, “an unbelievably great life.” But then Les learned he had prostate cancer.What follows is a candid interview with Les who also happens to be Greater Boston Urology’s COO (although he didn’t join GBU until a year after his diagnosis). Les discusses what it’s like to hear the words “you have prostate cancer,” and what he did next.Q: Tell me what was happening from a health standpoint right before you received the diagnosis.Les: I had a rising PSA (prostate-specific antigen). Over the course of 18 months, it went from about 4.0 to 8.0. These days, the baseline considered normal is 1.5. Not only was it high, but it was moving up. I was also experiencing some personal challenges with urinary frequency due to my prostate being five times larger than it should have been.Q: So your PSA is rising and you know you needed to do something. What happened next?Les: Because I’ve spent my whole life in healthcare, I’m fortunate that I have many friends in the business. A fellow doctor-friend recommended that I see Dr. Michael Donovan with Greater Boston Urology. Dr. Donovan met with me and reviewed all of the lab data and so forth. He said that he felt the only real way to sleep at night was to do a biopsy. That way, we would know whether the rising PSA was due to prostate cancer.Q: Let’s talk about the biopsy process. Many men are, understandably, not too thrilled with the idea.Les: While it’s not a fun procedure, you can get through it. It’s not that terrible. For my case, we did what’s called a TRUS biopsy: transrectal ultrasound biopsy. Basically, it takes 12 samples of prostate tissue from 12 different quadrants using an ultrasound to map that out. Once that procedure’s completed, those 12 tissue samples go to the laboratory and you wait for the results.[Editor’s note: Today, in addition to TRUS biopsies, men have another option at GBU: MRI/ultrasound fusion guided biopsy. This wasn’t available at the time of Les’s diagnosis, however.] Q: Take me back to that moment when you got the results.Les: Dr. Donovan told me he would call with the results and that I should be prepared for the answer to our question on the call. He wasn’t just going to call me to set up an appointment, come in, let’s talk about it. He says, “I’m going to tell you when I call you.” I said, “Okay.”[Editor’s note: Some physicians won’t give test results over the phone. It’s a personal preference, and it varies physician to physician, even here within GBU. Make sure you discuss what to expect with your doctor.]Q: Were you watching the phone non-stop?Les: Well, I had a national job at the time. I was in Albuquerque, New Mexico, at a meeting. I think he called around 5:00 Boston time, but it was 3:00 there. I looked at my cell phone and I had him plugged in, so I knew it was Dr. Donovan. I excused myself from the meeting and I went into an empty conference room. He said, “It’s Dr. Donovan. I’ve got the results from your biopsy. Two out of the ten tissue samples were positive. You have prostate cancer.”I said, “Well, I am not completely surprised because this rising PSA had to be due to something.” Then he said, “Do you have a pencil and paper?” I said, “Sure.” What I actually had was paper on the easels you find in conference rooms along with a big marker.He said, “Start writing these things down.” He gave me a bunch of numbers, like Gleason scores. He was giving me homework, if you will, to document things that he wanted me to review and look up and understand because the next step in the process was to have what he called a cancer conference. The cancer conference was face to face, but he needed me to do some research ahead of time.Q: What went through your mind when you hung up the phone?Les: I was scared. There was no doubt about it. I was thinking, “I’m 59 years old. I have an unbelievably great life. My wife’s just incredible. We have a great time, and I’m going to do whatever it takes to get over this, even though it has the capacity to be life changing. It’s depressing, and I know certain aspects of daily life are going to be different for me from now on.”Those were the three things I thought: It’s scary. I’m depressed about being sick. And I know things are going to change. When I say change, I mean you’re going to have to do something to address this and it’s going to create side effects or second effects. I’ve been a medical guy forever and I do understand probably more than most patients about the fact that there can be additional issues that occur. Q: What did you do next?Les: I called my wife immediately. She said, “Don’t worry about it.” Which is, I guess, the right answer, but I could tell she was worried, too. I said, “Now that we have an answer, we have to make some decisions.” She said, “Well how are you going to do that?” I said, “Well, this is what I’m going to do. I’m going to come home from Albuquerque as scheduled,” which was the next day. I do remember staying another night. I continued, “I’m going to go to our place in Florida and I’m going to stay down there for a week and do some research and take my time and figure out what I’m going to do.” She said, “I think that’s a good idea.” Q: Once it started to hit you—that you had prostate cancer—what went through your head? What did you think about?Les: After dinner that night (I actually had a business dinner that I had to attend), I went to the hotel room, got on Amazon, ordered four books about prostate cancer, and had them shipped to Sarasota where my second home is. I got on a flight a day or so later and headed down to Sarasota to contemplate what to do.The books were extremely interesting, informative, and helpful. They gave me a much more objective look at the situation. In other words, when you get this diagnosis, it’s almost completely emotional. It doesn’t matter what the options are because you have cancer. End of story. You don’t have the ability to think about what you should do next, how you should approach things, what your options are. All that stuff is just … It’s not feasible to think about it at that time. It’s just not realistic. I couldn’t seem to compartmentalize any meaningful, objective thoughts on my own. The books were the framework for that strategic planning that needed to occur prior to my cancer conference meeting with Dr. Donovan.Q: Because it’s so emotional?Les: Yes. And it’s a shock to your system. It’s shocking to think that you’ve got something debilitating enough to literally take you out, especially when your life’s going so well.Reading those books was really eye opening. One of the books was authored by a urologist who had prostate cancer. He had made the decision to have a radical prostatectomy. With a radical prostatectomy, you’re removing the prostate gland and the cancer along with it, since the cancer is localized or “within the capsule,” as mine was, which means the cancer is only within the prostate gland; there is no spread of cancer anywhere else.So if you remove the prostate, you remove the cancer. You don’t need any chemotherapy or radiation therapy following surgery, because all the damaged cells are gone. That’s great. The negative side is that when you remove the prostate, you can damage other nerves, organs, and vessels that control other things like urinary flow and sexual function and so forth. That’s the downside.You have to make a decision. Do I want to treat this more conservatively and keep my prostate with perhaps radiation therapy, chemotherapy, brachytherapy (which is the radiation seeds)? Or do I remove it? In my mind, it was “remove it, treat this once, and do it right.” That was my philosophy all along. I am not screwing with this. I want this gone. I don’t want to deal with it more than once. Get it out of here. It’s already five times bigger than it’s supposed to be. It’s already getting me up four times a night. This thing is not getting any better. In fact, it’s just going to create more havoc over time. Good-bye.Q: It sounds like your mind was made up pretty quickly?Les: By the time I finished reading those books, I’d made my decision. So I came home, back to Massachusetts. Shortly after, I had my cancer conference with Dr. Donovan. My wife and I walked into his office and shut the door. He allowed an hour for the meeting. I said to him, “This is going to be a real short meeting.” He said, “I don’t understand.” I said, “You’re going to take this thing out.” He said, “Wait a minute. We have all this stuff to talk about.” I said, “No, we don’t. You talked to me about the research. I’ve done the research. I’ve read these books.” (I brought the books with me, too.) I said, “I’m ready to rock here. There’s no reason not to proceed. I have a family history of this. My mother’s father—my grandfather—died of prostate cancer. I am not taking any chances here. We’ve got a problem. We’re going to fix it. You’re going to do it.”Q: Did Dr. Donovan want to discuss other options with you?Les: He did. Doctors want to educate patients on all options. Which I understand. But again, I’m not the average patient. I’ve worked in healthcare all of my life. I teach. Dr. Donovan quickly understood that I’d done the research and had made up my mind. Plus, he agreed with my decision.[Editor’s note: While we believe patients should educate themselves, we do recommend discussing all options with your doctor and listening to what your doctor has to say. Bring a family member or friend with you and have that person take notes. Be open-minded going into these cancer conferences. The solution you might have settled on in your head before the meeting might change once you’ve discussed everything with your doctor. Also, seeking a second opinion is perfectly acceptable. Dr. Donovan recommended that Les seek a second opinion, but Les declined. The decision is yours, but you should always feel OK with seeking one.]Q: Knowing what you know now, and knowing that not all patients have healthcare backgrounds like you, do you recommend people conduct such deep research prior to a cancer conference?Les: In my opinion, anyone who gets a diagnosis like this, you can’t ignore it. And you owe it to yourself to understand what’s going on in your body. Most people have access to the Internet. Everybody’s got a computer in their hand with their phone. Even if you just did some rudimentary searches on prostate cancer, you’ll learn so much so quickly. And this knowledge will empower you as you make your way through cancer conferences and whatever treatment you ultimately choose. Speaking of treatments, in Greater Boston Urology’s next article, they’ll talk to Les about what it was like for him to get a radical prostatectomy. Blog Posts Living with Prostate Cancer Testing & Diagnosis Contributor Greater Boston Urology Blog Founded in 2010, Greater Boston Urology is an integrated urology practice. Their excellent blog hosts a range of stories and details about treatment options. More for Newly Diagnosed Patients Newly Diagnosed A prostate cancer diagnosis can be scary and overwhelming. ZERO provides resources and support to help people with prostate cancer find a path forward. ZERO Prostate Cancer Statement on Wade Boggs' Prostate Cancer Announcement A Year of Growth, Change, and Renewed Purpose: Reflecting on My First Year as CEO of ZERO Rick Steves Announces Prostate Cancer Diagnosis Unlocking Lonnie Van Horn’s Genetic Blueprint: The Crucial Role of Genes in His Prostate Cancer Journey
Reposted with permission from Greater Boston Urology. In September 2013, Les Cavicchi was 59 years old and had, in his words, “an unbelievably great life.” But then Les learned he had prostate cancer.What follows is a candid interview with Les who also happens to be Greater Boston Urology’s COO (although he didn’t join GBU until a year after his diagnosis). Les discusses what it’s like to hear the words “you have prostate cancer,” and what he did next.Q: Tell me what was happening from a health standpoint right before you received the diagnosis.Les: I had a rising PSA (prostate-specific antigen). Over the course of 18 months, it went from about 4.0 to 8.0. These days, the baseline considered normal is 1.5. Not only was it high, but it was moving up. I was also experiencing some personal challenges with urinary frequency due to my prostate being five times larger than it should have been.Q: So your PSA is rising and you know you needed to do something. What happened next?Les: Because I’ve spent my whole life in healthcare, I’m fortunate that I have many friends in the business. A fellow doctor-friend recommended that I see Dr. Michael Donovan with Greater Boston Urology. Dr. Donovan met with me and reviewed all of the lab data and so forth. He said that he felt the only real way to sleep at night was to do a biopsy. That way, we would know whether the rising PSA was due to prostate cancer.Q: Let’s talk about the biopsy process. Many men are, understandably, not too thrilled with the idea.Les: While it’s not a fun procedure, you can get through it. It’s not that terrible. For my case, we did what’s called a TRUS biopsy: transrectal ultrasound biopsy. Basically, it takes 12 samples of prostate tissue from 12 different quadrants using an ultrasound to map that out. Once that procedure’s completed, those 12 tissue samples go to the laboratory and you wait for the results.[Editor’s note: Today, in addition to TRUS biopsies, men have another option at GBU: MRI/ultrasound fusion guided biopsy. This wasn’t available at the time of Les’s diagnosis, however.] Q: Take me back to that moment when you got the results.Les: Dr. Donovan told me he would call with the results and that I should be prepared for the answer to our question on the call. He wasn’t just going to call me to set up an appointment, come in, let’s talk about it. He says, “I’m going to tell you when I call you.” I said, “Okay.”[Editor’s note: Some physicians won’t give test results over the phone. It’s a personal preference, and it varies physician to physician, even here within GBU. Make sure you discuss what to expect with your doctor.]Q: Were you watching the phone non-stop?Les: Well, I had a national job at the time. I was in Albuquerque, New Mexico, at a meeting. I think he called around 5:00 Boston time, but it was 3:00 there. I looked at my cell phone and I had him plugged in, so I knew it was Dr. Donovan. I excused myself from the meeting and I went into an empty conference room. He said, “It’s Dr. Donovan. I’ve got the results from your biopsy. Two out of the ten tissue samples were positive. You have prostate cancer.”I said, “Well, I am not completely surprised because this rising PSA had to be due to something.” Then he said, “Do you have a pencil and paper?” I said, “Sure.” What I actually had was paper on the easels you find in conference rooms along with a big marker.He said, “Start writing these things down.” He gave me a bunch of numbers, like Gleason scores. He was giving me homework, if you will, to document things that he wanted me to review and look up and understand because the next step in the process was to have what he called a cancer conference. The cancer conference was face to face, but he needed me to do some research ahead of time.Q: What went through your mind when you hung up the phone?Les: I was scared. There was no doubt about it. I was thinking, “I’m 59 years old. I have an unbelievably great life. My wife’s just incredible. We have a great time, and I’m going to do whatever it takes to get over this, even though it has the capacity to be life changing. It’s depressing, and I know certain aspects of daily life are going to be different for me from now on.”Those were the three things I thought: It’s scary. I’m depressed about being sick. And I know things are going to change. When I say change, I mean you’re going to have to do something to address this and it’s going to create side effects or second effects. I’ve been a medical guy forever and I do understand probably more than most patients about the fact that there can be additional issues that occur. Q: What did you do next?Les: I called my wife immediately. She said, “Don’t worry about it.” Which is, I guess, the right answer, but I could tell she was worried, too. I said, “Now that we have an answer, we have to make some decisions.” She said, “Well how are you going to do that?” I said, “Well, this is what I’m going to do. I’m going to come home from Albuquerque as scheduled,” which was the next day. I do remember staying another night. I continued, “I’m going to go to our place in Florida and I’m going to stay down there for a week and do some research and take my time and figure out what I’m going to do.” She said, “I think that’s a good idea.” Q: Once it started to hit you—that you had prostate cancer—what went through your head? What did you think about?Les: After dinner that night (I actually had a business dinner that I had to attend), I went to the hotel room, got on Amazon, ordered four books about prostate cancer, and had them shipped to Sarasota where my second home is. I got on a flight a day or so later and headed down to Sarasota to contemplate what to do.The books were extremely interesting, informative, and helpful. They gave me a much more objective look at the situation. In other words, when you get this diagnosis, it’s almost completely emotional. It doesn’t matter what the options are because you have cancer. End of story. You don’t have the ability to think about what you should do next, how you should approach things, what your options are. All that stuff is just … It’s not feasible to think about it at that time. It’s just not realistic. I couldn’t seem to compartmentalize any meaningful, objective thoughts on my own. The books were the framework for that strategic planning that needed to occur prior to my cancer conference meeting with Dr. Donovan.Q: Because it’s so emotional?Les: Yes. And it’s a shock to your system. It’s shocking to think that you’ve got something debilitating enough to literally take you out, especially when your life’s going so well.Reading those books was really eye opening. One of the books was authored by a urologist who had prostate cancer. He had made the decision to have a radical prostatectomy. With a radical prostatectomy, you’re removing the prostate gland and the cancer along with it, since the cancer is localized or “within the capsule,” as mine was, which means the cancer is only within the prostate gland; there is no spread of cancer anywhere else.So if you remove the prostate, you remove the cancer. You don’t need any chemotherapy or radiation therapy following surgery, because all the damaged cells are gone. That’s great. The negative side is that when you remove the prostate, you can damage other nerves, organs, and vessels that control other things like urinary flow and sexual function and so forth. That’s the downside.You have to make a decision. Do I want to treat this more conservatively and keep my prostate with perhaps radiation therapy, chemotherapy, brachytherapy (which is the radiation seeds)? Or do I remove it? In my mind, it was “remove it, treat this once, and do it right.” That was my philosophy all along. I am not screwing with this. I want this gone. I don’t want to deal with it more than once. Get it out of here. It’s already five times bigger than it’s supposed to be. It’s already getting me up four times a night. This thing is not getting any better. In fact, it’s just going to create more havoc over time. Good-bye.Q: It sounds like your mind was made up pretty quickly?Les: By the time I finished reading those books, I’d made my decision. So I came home, back to Massachusetts. Shortly after, I had my cancer conference with Dr. Donovan. My wife and I walked into his office and shut the door. He allowed an hour for the meeting. I said to him, “This is going to be a real short meeting.” He said, “I don’t understand.” I said, “You’re going to take this thing out.” He said, “Wait a minute. We have all this stuff to talk about.” I said, “No, we don’t. You talked to me about the research. I’ve done the research. I’ve read these books.” (I brought the books with me, too.) I said, “I’m ready to rock here. There’s no reason not to proceed. I have a family history of this. My mother’s father—my grandfather—died of prostate cancer. I am not taking any chances here. We’ve got a problem. We’re going to fix it. You’re going to do it.”Q: Did Dr. Donovan want to discuss other options with you?Les: He did. Doctors want to educate patients on all options. Which I understand. But again, I’m not the average patient. I’ve worked in healthcare all of my life. I teach. Dr. Donovan quickly understood that I’d done the research and had made up my mind. Plus, he agreed with my decision.[Editor’s note: While we believe patients should educate themselves, we do recommend discussing all options with your doctor and listening to what your doctor has to say. Bring a family member or friend with you and have that person take notes. Be open-minded going into these cancer conferences. The solution you might have settled on in your head before the meeting might change once you’ve discussed everything with your doctor. Also, seeking a second opinion is perfectly acceptable. Dr. Donovan recommended that Les seek a second opinion, but Les declined. The decision is yours, but you should always feel OK with seeking one.]Q: Knowing what you know now, and knowing that not all patients have healthcare backgrounds like you, do you recommend people conduct such deep research prior to a cancer conference?Les: In my opinion, anyone who gets a diagnosis like this, you can’t ignore it. And you owe it to yourself to understand what’s going on in your body. Most people have access to the Internet. Everybody’s got a computer in their hand with their phone. Even if you just did some rudimentary searches on prostate cancer, you’ll learn so much so quickly. And this knowledge will empower you as you make your way through cancer conferences and whatever treatment you ultimately choose. Speaking of treatments, in Greater Boston Urology’s next article, they’ll talk to Les about what it was like for him to get a radical prostatectomy.
More for Newly Diagnosed Patients Newly Diagnosed A prostate cancer diagnosis can be scary and overwhelming. ZERO provides resources and support to help people with prostate cancer find a path forward. ZERO Prostate Cancer Statement on Wade Boggs' Prostate Cancer Announcement A Year of Growth, Change, and Renewed Purpose: Reflecting on My First Year as CEO of ZERO Rick Steves Announces Prostate Cancer Diagnosis Unlocking Lonnie Van Horn’s Genetic Blueprint: The Crucial Role of Genes in His Prostate Cancer Journey
