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Patients Speak: Choosing Focal Therapy

Mr. David Fitch talks to Prostatepedia about choosing focal therapy for prostate cancer.

Join us to read our November issue on focal therapy.

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What was your life like before prostate cancer?

Mr. David Fitch: I live by myself. I’m 74. I’m retired. Ever since I quit working, I found it is a lot better to interact with my friends. I bicycle and swim. I’m more of a cyclist than a swimmer. I cycle almost every day. I’m probably riding 200 to 300 miles a week. I started doing that initially for the social part of it—all my friends are bicycle folks.

Then I got into the VA Palo Alto swimming pool a few years ago and so I’ve got a lot of VA pals as well. All my exercise basically started as more of a social thing. That’s what was happening before the diagnosis of prostate cancer.

How did you find out that you had prostate cancer?

Mr. Fitch: That was through the VA. The VA in Palo Alto, California, is really good. I’ve been going there for over 10 years. I found out through my endocrinologist. I can’t say enough nice things about her. She has literally saved my life at least twice and this was one of those times. She was looking at my PSA over the years. She said: “It’s gently rising. It doesn’t really rise to the threshold of being something to worry about.” It was around 2.5 for several years before rising to around 3.5 over a period of about four to five years. She said, “Would you like to go talk to the urology department?” I said, “Sure, I’m always happy to talk to people.” She sent me to the head of the urology department. I had no clue about what a urologist did. I went to see the guy, and he did a digital rectal exam (DRE) and said he could feel a lump. My previous DRE was 18 months earlier with my primary care physician and she said everything was fine.

The urologist sent me for an MRI— I had no idea what an MRI was. This started my research: What’s an MRI? With the MRI he said, “It looks to me like there’s something wrong, so I need to do a biopsy.” He told me that the protocol for the VA is a blind biopsy, not using the MRI, just poking 12 holes or so into my prostate and taking samples. Very hit-or-miss. My research indicated that using the MRI fused to a picture of my prostate gave the radiologist a better chance of seeing the suspicious areas to sample, but the VA doesn’t do that. There is a program, Veteran’s Choice, that allows patients to be sent outside the VA if a procedure cannot be performed within the VA. I was sent to Stanford for an MRI-ultrasound fusion biopsy. The Stanford radiologist, Dr. Sonn, found lesions on both sides of my prostate. The right side had more suspicious areas than the left. The pathologist’s report confirmed the presence of intermediate prostate cancer. On the right side were two areas: Gleason 4+3 and 3+4. On the left side, it was Gleason 3+4.

What was your reaction? How did you feel when you found this out?

Mr. Fitch: I was very concerned of course but not distraught. The VA Urology Department did not inform me of the difference between blind biopsy and directed biopsy or of the availability of the Veteran’s Choice Program until I asked. I was now suspicious: What else hadn’t I been told? The only solution was my own research. I went down this rabbit hole trying to answer: What is prostate cancer? What does it mean? What do all these numbers mean? Who can do what, and how do I go about finding out? I joined a support group at the VA Palo Alto, which was worthless. Then I went to two other local support groups, one in Los Gatos, and another at Mountain View—both of them pretty good.

I found out from talking to a lot of guys that doctors generally prescribe their own methods of taking care of this stuff, whether or not it fits. Urologists want to cut and radiologists want to radiate. Then I found an online support group, Inspire.com, a partner of Us TOO. It’s fairly comprehensive. You can get a lot of questions answered, and you can spend literally hundreds or thousands of hours digging through—it’s like trying to take a drink out of a fire hydrant.

I was willing to educate myself. I was looking for people who could help me educate myself to find out what needed to be done. The best way I can characterize this is the problem that I had didn’t seem to me to be life-threatening at the moment. It seemed to me like I had plenty of time to figure out what to do next, but I was going to have to do something.

I didn’t like the fact that the head of the VA Urology Department told me he could only offer me surgery or radiation—nothing else. I thought both of those things were like amputating my arm because I got a scratch. I told him that. I said, “You’re not helping me a whole lot.” I had a 20-minute appointment at most. He just seemed too busy to have any sort of a long conversation. I went in there with all this reference material, a ton of it. I didn’t exactly know where I wanted to go with it, but I wanted to have a conversation with the man. His bedside manner was terrible. He gave me 20 minutes and said, “Okay, well, do whatever you want.” I wasn’t getting anywhere.

At that point, I felt that the VA Urology Department was not very helpful. I began to realize that there is a huge difference in doctors’ expertise as far as prostate cancer was concerned. I realized that I had to take this into my own hands. I had to educate myself in order to be able to go forward: What is a urologist? A radiologist? An oncologist? Do they specialize in prostate cancer?

Later, after my focal laser ablation (FLA) procedure, I met Dr. John Leppert, a VA urologist who has been very helpful and supportive in my quest to understand prostate cancer.

Did you turn to the online groups? Is that where you went first for education?

Mr. Fitch: I started online, yes. I did a lot of reading. I just worked for a long time until I had the answers that I wanted. Additionally, I began to hear the names of certain doctors mentioned over and over again: Dr. Snuffy Myers, Dr. Mark Scholz, Dr. Mark Moyad, Dr. Fabio Almeida, Dr. Dan Sperling, Dr. Pete Carroll, Dr. Joe Busch, and many others.

In many cases, Google was where my investigation began and I watched many YouTube videos. I concluded that many doctors want to cut something out of me or to radiate me, and both those things have serious consequences. I didn’t like either one.

It was about that time that I stumbled onto FLA. It probably had more to do with side effects than it did with whether it worked or not, quite frankly. I found that the biggest side effect from FLA was financial. It would cost me $20,000.

I decided not to buy a new car that year and use the money to take care f my body instead. I’m being a little facetious here. If it didn’t work, I could always do anything I wanted to the second time around. That’s what led me to FLA.

Once you found out about focal therapy as an option, how did you figure out which form of focal therapy was best?

Mr. Fitch: My FLA was done in 2016. There are more types of focal therapies now than in 2015 when I made the decision. Additionally, there are very few doctors who do this particular FLA. I went to Dr. Eric Walser at the University of Texas Medical Branch in Galveston, who I think I found out about on Inspire.com. Initially, I was going to Dr. John Feller at Desert Medical Imaging in Indian Wells, California. He had a clinical trial that I was eligible for, but I changed my mind at the last minute because Dr. Feller’s clinical trial would cost more than Dr. Walser’s commercial practice and would require two trips. And Dr. Feller uses an MRI machine that is 1.5 Tesla. I know it works just fine in the right hands, but it is not a 3.0 Tesla machine.

What was the actual procedure like for you?

Mr. Fitch: The procedure was outpatient. It lasted maybe an hour. I was never knocked out. It was just local anesthetic. I spent a few days in Galveston recovering. They did two overlapping ablations on the right side and one on the left. They took larger margins to preclude missing some hard-to-see cancerous spots. Prior to this time, FLA procedures had recurrence rate in the 10-15% range. Taking a little larger margin around the tumor would reduce the recurrence rate. And in my case, they ablated twice, overlapping, on the right and once on the left side. The tumor on the left side was rather small and hard to see. The two tumors on the right side were fairly close to the urethra, which meant that when my poor old prostate swelled up from the ablation, it closed off the urethra. Without a catheter in place, I wouldn’t have been able to pee.

The only painful part of the procedure was reinsertion of the catheter for the blocked urethra. I ended up staying in Galveston from Monday to Friday waiting for the urethra to open. I was told this problem was not typical and was probably due to the ablation near the urethra.

Any side effects after the treatment?

Mr. Fitch: My ejaculations are dry. I’m told that’s pretty typical. I’m 74 years old and not having kids is really not a problem for me. Otherwise, there don’t seem to be any aftereffects.

How are you monitoring now for potential recurrence after treatment?

Mr. Fitch: Active surveillance. The protocol is to have a PSA test every three months and an MRI at six months and 12 months. If everything is clean at the end of 12 months, then maybe an MRI once a year. It varies a little bit after that. The PSAs typically go on at three-month intervals. They’re just part of my normal blood work that I have done at the VA.

To put the PSA in perspective, before the FLA, it was about 3.5. Three months after FLA, it dropped to 2.3. Then at six months, it dropped to 0.25. I was so surprised by that number that I had it confirmed with a second test a few days later. It was 0.28.

At nine months, it jumped back to 0.55. That could have been partly due to riding my bike a lot. That does have an impact on PSA. At one year post-FLA, it is 0.43. I’ve had a one-year MRI as well which shows some scarring but no other problems.

Do you have any advice for men who are in a similar situation?

Mr. Fitch: I would do it again for intermediate prostate cancer (i.e., Gleason 7) which has not metastasized. It’s expensive, not covered by insurance, and I had to travel, but it was well worth it. No pain, no leaking, and sex works. If the cancer reappears in the gland it can be re-ablated or any other procedure used. There are many available therapies for organ-contained prostate cancer that has not metastasized: cryotherapy, CyberKnife, MR-guided focused ultrasound, NanoKnife, proton beam, photodynamic therapy with TOOKAD, stereotactic body radiation therapy (SBRT), brachytherapy (seeds), and more. Technological improvements are happening quickly. I suspect we’re headed down the road of some new, permanent therapies that will eradicate prostate cancer forever. Immunotherapy comes to mind. Until then, FLA seems like a good interim measure.

Any other thoughts for other men struggling with prostate cancer?

Mr. Fitch: Listen to the doctors. If you like what they say, and if you want to follow their advice, that’s fine. If you think there might be something else out there that works better, at least take a look at other options and see how they stack up against what you’re being told. Prostate cancer probably hasn’t changed a heck of a lot in a long time, but the ways that we approach it are changing rapidly. Active surveillance for low-risk cancer (Gleason 6) is increasing dramatically, and scanning techniques make this possible. If it weren’t for the new technologies in scanning, we wouldn’t be doing focal anything. Scanning helps find the tumors. I was a fighter pilot. If somebody was shooting at me, I could combat that by seeing the threat and defeating it. The same goes here. If you can see it, you can probably defeat it.

There are a lot of scanning techniques including MRI. PET/CT scanning techniques use different imaging agents (injected during the scan) and can help to see both inside and outside the prostate. These agents include C 11-acetate, PSMA, Axumin (fluciclovine F 18), and many others. It’s worthwhile investigating those to make sure that a guy knows exactly what he’s got and exactly what he has to deal with before he goes down any road. He’s got lots of time, especially if it’s low or intermediate risk. Take the time to educate yourself, to understand what needs to be done.

The last point I’d make is to attend the Prostate Cancer Research Institute (PCRI) conferences in the fall. It’s designed for patients, given by world class doctors, lasts three days for $50 or so. The education is remarkable.

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Reporting Symptoms Online Improves Survival

Dr. Ethan Basch is a Professor of Medicine at the University of North Carolina Lineberger Comprehensive Cancer Center. Prostatepedia spoke with him about having patients report symptoms via web-based portal.

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Why did you become a doctor? What is it about patient care that attracts you?

Dr. Ethan Basch: I became a doctor because I like people and value direct service. Patient care is rewarding when I feel I can help people by providing medical knowledge that helps them make decisions, listening, and providing support and compassion, and by connecting them to other professionals or resources that can help them during difficult moments.

Do patients commonly report the majority of cancer treatment side effects to their doctors? What are some of the obstacles to those conversations?

Dr. Basch: Studies show that clinicians (doctors and nurses) are unaware of up to half of their patients’ symptoms. The reasons for this are complex. Between clinic visits, patients may be reluctant to call the office with problems or have difficulties getting through. At visits, clinicians might not ask about specific symptoms amidst other pressing discussion topics. There are also interpersonal dynamics that play a role. Patients might not want to “let their doctor down” by admitting to difficulties. Similarly, doctors might downplay patients’ problems because they are emphasizing positive rather than negative aspects of treatment. Electronic questionnaires bypass these various barriers. They enable patients to respond honestly to straightforward and systematic questions about issues they experience. This information is then conveyed automatically to clinicians.

How are doctors currently using newer technologies—like web-based portals or mobile apps—to make it easier for patients to communicate with them?

Dr. Basch: An increasing number of patient portal systems used by hospitals and clinics enable patients to self-report problems they experience. Clinicians can respond to patients within their usual workflow. There are also a growing number of mobile apps to facilitate this communication between patients and clinicians. These systems lower the barriers to reaching clinicians and facilitate better communication during and between visits.

Can you tell us about your study that looked at having patients use a web-based portal to report side effects?

Dr. Basch: We conducted a study asking a simple question: If we provide an online system for patients to report symptoms to their doctors and nurses during cancer treatment, will that improve outcomes? The answer was a resounding yes. In this study, we randomly assigned 766 patients to either usual care or to self-reporting common symptoms on a weekly basis from home or clinic with automated email alerts sent to nurses for severe or worsening problems. We found that compared to usual care, the patients who self-reported had significantly fewer emergency room visits, better quality of life, and were able to remain on chemotherapy longer because their symptoms were better controlled.

These findings together likely account for the most striking finding of the study, that the median overall survival was five months longer among those who self-reported.

Do you think such web-based portals can help doctors address side effects faster and more effectively?

Dr. Basch: Yes.

Are there any financial implications for reporting side effects electronically?

Dr. Basch: We found a significant decrease in emergency room visits when symptoms are managed through proactive electronic symptom monitoring, which is a potential cost savings.

Do you think patients are more likely to report certain side effects if given the opportunity to do so electronically than if they have to report them during an office visit?

Dr. Basch: Yes, this has been shown in prior scientific studies. Patients are more likely to disclose symptom information through questionnaires than in face-to-face discussions.

This is likely due to some of the reasons I mention above.

Is there anything else you’d like patients to know about your study or its implications?

Dr. Basch: It is important to reach out to your care team when you have symptoms.

If you were to do the study again, would you make any changes to the way you had patients report side effects—e.g., mobile app versus desktop portal versus text or newer apps/etc.?

Dr. Basch: We started this study more than a decade ago, and there have been substantial advances since then in health information technology and in patient/clinician familiarity with electronic tools. Today, we use newer approaches, including automated telephone systems and downloadable apps. Bots are on the horizon that will automatically elicit symptoms from patients and give advice, and wearable activity trackers will be integrated.

Any thoughts for doctors who may be reading this?

Dr. Basch: It is important to monitor patients’ symptoms between visits during systematic cancer treatment—treatment for most chronic symptomatic conditions, actually. Although there are logistical and workflow challenges associated with integrating patient reported outcomes into a practice, there are many benefits: improved communication, patient satisfaction, and clinical outcomes.

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The Moustache: A Fun Approach To A Serious Problem

Sandy Goodman is one of Movember’s top fundraisers. Prostatepedia spoke to him about their annual moustache-growing campaign.

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What is Movember?

Sandy Goodman: Movember is a fun approach to a serious problem. A bunch of guys sat down over some beers and dreamed up this way to follow the lead of breast cancer awareness advocates, who had been doing such a great job talking to women about early detection. These guys talked about what could be done for men. It’s grown into something much larger. The bottom line: guys don’t talk and men are dying too young (6 years earlier than women, on average).

Men are dying too young, and, for Movember, the simple solution is the moustache. The moustache is just our ribbon—it’s our banner. I don’t grow a moustache normally. Because I do it once a year, everyone asks why I’m growing one. It sparks the conversation.

Movember has been very innovative. They’ve made all the fundraising and gift-giving tools available online to everybody. An incredible amount of partnership and research has been funded through Movember. The back end—what the money is going towards—has real outcomes.

I’m happy to be a part of something that’s fun, and I’m proud to be part of something that’s truly making a difference.

image003Sounds like the annual campaign isn’t just about fundraising, but is also a way to start talking about some of these issues.

Sandy Goodman: Yeah, that’s right. It’s definitely all about sparking conversation. Men are terrible at making doctor appointments. Men are terrible at following up on doctor appointments. Men are terrible about checking themselves and being aware of what’s going on. To the extent that we can just spark conversation is a big impact.

Movember used to say that one moustache reaches an average of 100 people in a month. The number of emails you send out and share, Facebook posts, blog posts, the pictures—the reach is large and it just multiplies.

I’d be surprised to find anyone on the globe now who doesn’t understand what a moustache during the month of November means.

For me, it’s just about being involved with something. We all need to give back. I’m a huge believer in lifting with your pinkies as a group. It’s such a powerful thing when we all just lift together.

How did you get involved with Movember?

Sandy Goodman: I got involved 10 years ago because my father-in-law was diagnosed with prostate cancer. He had been doing all the right things. He went to his doctor for PSA and DRE exams every year. When his doctor saw something he didn’t like, he said, “You have an elevated PSA score and need to come back.”

At the time, he was getting remarried. His brother had had some complications after a prostatectomy, so my father-in-law was afraid to go back. He didn’t go back until a year later when he was doubled over in pain and they said it was too late. He was terminally ill with prostate cancer. It had spread. They gave him three years to live; he made it eight years, but it was not a very good eight years.

Early detection is so important, but beyond early detection is early action. My father-in-law did the right things, but then didn’t follow through… he didn’t take action. It was sad to watch this whole process. It was especially terrible, because it was completely avoidable.

At the time, I knew nothing about my prostate. I didn’t know what it did. I didn’t really know where it was and I never checked it. I was 45 years old. None of my friends knew anything about their prostates, either. We never checked our testicles or any of that stuff.

At the same time, a work friend’s dad had cancer. He was getting involved with Movember. He started a team and I joined him. Movember had only been in the United States for a year at the time.

It was a fun approach to a serious problem, which was right up my alley. I grew a moustache, got hooked, and I’ve been growing for 10 years now. I’ve been talking to everyone I can, all my bros.

Movember has had the viral social media aspect going for it.

Sandy Goodman: Completely. I started a golf tournament for our team 5 years ago. It’s grown. My goal was to bring the Movember message to my local community. I was walking around the South Bay and people would recognize that I had grown a moustache, but I think they saw me as a novelty. I wanted to do more. The golf tournament brings in local businesses. They set up on every other hole, so it’s an interactive experience. It’s a fun day. One of them sponsors the team photos of everyone holding up the tournament banner.

This year, instead of having a professional photographer there to take the picture, we’re asking the players to take the pictures with their own cameras and phones, so they’ll have it immediately. Then they can share and post their photos with hash tags. It’s just another way to keep the message growing virally.

There are new ideas every year.

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What has been your own approach to Movember?

Sandy Goodman: It’s changed over the years. At first, it was about getting people on the team. We’ve had as many as 80 people on a team and we’ve had as few as 20. I haven’t even really started building a team yet for this year. I used to start up on September 15, the day the website goes up, but it was a bit early. I just sent my first email for recruiting.

Originally, we just had a get-together with the guys. Then, we connected with some local bars and existing local events. Now we help promote. Bars and restaurants are happy for us to bring our crew, so we’ve had a lot of success with that. If there’s too much happening on the calendar, though, people can get burnt out, so we take that into consideration.

Movember has made it easier to host an event. Once you’re signed up, you can send invites to your friends or you can post events publicly. It’s fantastic. You could post a keg party if you wanted and ask for donations as admission.

When they were in college, I helped my sons set up their own team, The Buffalo Mo Bros. I encouraged them to use those tools to set up keg parties and things like that. It was super easy. It’s about getting together, having fun, and raising awareness and some money.

How do you motivate people to donate to a cause like this?

Sandy Goodman: In the beginning, I fundraised almost exclusively through email. I would send out about eight emails throughout the campaign. I started with the kickoff, maybe something for Halloween, then Veterans Day, and halfway there’s the golf tournament and then the wrap-up.

I would always attach a personal message. I would cut my group into subgroups, such as work friends or high school friends, and then cater the messages to them. Movember allows you to upload pictures to the site, so I do that, and they can see my progress.

Now, I focus exclusively on the golf tournament, because it’s just a big event. It raises about $50,000. I organize everything.

For whatever reason, I am fortunate to have some very generous friends. Everyone understood that I was passionate about it and that resonated. I was passionate because of my father-in-law. I was passionate because I have three sons who have a history to be concerned with because they’re two and a half times more likely to get it than I am.

What works for my fundraising is email campaigns and being thoughtful about how I word the emails and who I send them to.

I’ve been doing this for 10 years. I’ve been the top United States fundraiser for the past 8 years. The individual who has raised the MOst MOney is called the MoMo. It’s a title I love. I would love to retain it.

I imagine if you’ve been doing this for eight years, you must have a core group of people who campaign with you every year?

Sandy Goodman: I do, but people come in and out. It’s hard to maintain the passion. There are many charities that compete for our attention and our dollars. People have other things in their lives. Sometimes life throws you a curve ball, and your focus and priorities just change.

For example, one of the guys who has been with me all these years just told me: “My mother-in-law has breast cancer. So I’ve decided to focus on the breast cancer walk this year.” I think that’s great. There’s nothing wrong with that. I miss him, but he’s still doing great things.

For me, it’s just about being involved with something. It’s such a powerful thing when we all lift together. It’s about numbers.

It’s about having a clear message and a clear path for success. You have to make it frictionless for people so that they can just click and be done. If people don’t see a hyperlink and they don’t understand your methods, you’re not going to win. Movember has been fantastic at that. They get that need for ease. That’s why they were trailblazers and why they were able to have such success and to grow so quickly.

They made it frictionless. They made it easy for people to understand the message, to follow somebody who’s passionate and having fun and to see your progress. Pictures and emails are template-driven, so they allow you to spin to your group, update, and customize your message. “Just click here.” It’s that simple.

What are your tips for men who want to start their own group?

Sandy Goodman: Have fun. Be passionate. And do the work. There’s a full spectrum of Mo Bros and Mo Sisters. There are people out there who sign up and they’ve raised zero dollars, but they have fun and they have an excuse to spark conversations. That’s great. They’re doing something and making a difference. If one moustache saves one life, even if you haven’t raised any dollars, that’s fantastic.

On the other end of the spectrum, some people just get really into it. They get passionate, organized, do the hard work, and they raise a lot of money and awareness. It’s a balance between both.

Do you have any advice for patients or their loved ones who want to participate?

Sandy Goodman: I watched my father-in-law suffer. It was a very difficult experience for everybody—obviously for him—but also for all his family members. Once he had prostate cancer, we learned that it was so confusing to find and understand the resources available, the best course of action, or the best treatments.

Movember had resources that were really comforting and helpful and focused on care (LIVESTRONG at the time). Knowing that they’re doing the research and the work is comforting also.

Under “About Us,” they have information on the work that they’re doing. There are over 1,200 projects funded by Movember in all areas of men’s health: prostate cancer, testicular cancer, and mental health and suicide prevention.

They also provide links to other resources. They have hotlines for people to call for more information and support.

Resources for mental health have really grown in prominence at Movember over the past few years, mostly in response to the mental anguish that you go through when faced with any cancer and not knowing who to talk to. When you consider that three out of four suicides are men, it’s a huge issue at all ages.

I never want to get a message from someone saying they’re glad I’m doing this because they’ve just been diagnosed with prostate cancer. That’s terrible. But the fact that they were diagnosed and they’re taking action is fantastic, because they’re reaching out. They’ve seen me, my passion, and they’ve seen my moustache every year.

I always pick up the phone. I try to help however I can. If I can provide a resource through Movember, I always do that, but it’s a tough journey.

Most people with prostate cancer will die of something else.

Sandy Goodman: That’s true. For those who already have prostate cancer, it’s the treatment and it’s the side effects that are difficult.

I have several friends that have gone through complete prostatectomies and several going through active surveillance. It’s not an easy journey, even if it’s super successful. It just takes time.

Do you still feel men don’t want to talk about prostate cancer?

Sandy Goodman: That’s changing a little. I have two good friends who have had prostatectomies and they’ve had some very serious side effects. They are extremely open about wearing diapers and the other issues. That conversation wouldn’t have happened 10 years ago. I would have waived them off like: “I don’t want to hear that.” Now, I’m open to it, everyone around me is open to it, and it’s not taboo anymore. It’s more about being there for them than anything else. The message is being heard.

Do you think that this change is due to efforts like Movember’s annual campaign, or do you think society is evolving?

Sandy Goodman: I think it’s a combination. It’s not one or the other. People are coming of age in a more communicative era. We have Facebook and social media and charities out there are promoting and discussing these issues.

We’re more accustomed to sharing our emotions as a culture?

Sandy Goodman: Yes. We share a lot. We share everything on the worldwide web. There it’s frictionless, and the messages are bouncing around at hyper speed all the time. Sometimes more than you want. But that’s for the best when you’re talking about things that in the past were not discussed and should be.

Depression and suicide?

Sandy Goodman: One hundred percent. People suffer on their own for many reasons, including cancer. That’s the main message of Movember: talk, listen, and be there. I’ve picked up the phone to check on people many times over the last couple years, and we just have a conversation. Other times people have reached out to me when I wasn’t feeling great about things. I would just be honest and say: “I just need to talk to someone right now.”

For me, that support is completely thanks to Movember and their message. I try to practice what they preach, but it’s not always easy. We’re guys. We still grew up being guys. We don’t cry. We say, put a Band-Aid on it, you’ll be fine. But that’s not as powerful as reaching out.

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Is There A Consensus On Focal Therapy?

David Crawford, the distinguished Professor of Surgery, Urology, and Radiation Oncology, and Head of the Section of Urologic Oncology, at the University of Colorado Anschutz Medical Campus frames Prostatepedia’s November discussions on focal therapy for prostate cancer.

There is a lot of interest in focal therapy right now. Years ago, when I used to recommend radical prostatectomy and radiation to patients, they would ask why I couldn’t just take out a part of their prostate and not the whole thing. I would chuckle and say, “You can’t do that.” I’d say that prostate cancers tend to be multifocal. We can’t just operate on part of your prostate. We have to treat the whole thing.

That resonated with many urologists for years. Then Drs. Gary Onik and Winston Barzell started using cryotherapy to ablate prostate tumors and mapping biopsies to localize the cancer. Like a lot of things in medicine, there was a backlash of people who felt focal therapy was inappropriate because prostate cancer is multifocal.

Dr. Onik persisted. When somebody came in with a low-grade or even intermediate-grade prostate cancer on the left side of the prostate gland, he would biopsy the right side of the prostate extensively. If there wasn’t any cancer, he would do an ablation and treat the whole left side. That was the beginning of focal therapy.

I became interested in what I call targeted focal therapy about 15 years ago. Of course, focal therapy hinges on our ability to effectively biopsy patients so that you know you’re not missing other, more aggressive tumors. Focal therapy means focally treating a lesion, but I like the term targeted focal therapy because we’re targeting exactly where the tumor is with our mapping biopsies.

There are many ways to do focal therapy. We can use lasers, cryotherapy, or high-intensity focused ultrasound (HIFU). We’re working on using immunotherapy to target lesions. We can even put alcohol into the lesion and get rid of the cancer that way. Ablating the tumor isn’t the hard part. The hard part is knowing where the lesion is and targeting it.

Fifteen years ago, we had several hundred radical prostatectomy specimens; a researcher from Japan named Dasako Hirano, who had been with us for two years, outlined the tumors on acetate paper and then we put them into a 3D system so that we could simulate where these tumors were using different biopsying techniques. We showed that if you use the transperineal approach to place a needle into the prostate every five millimeters, you could sample the whole prostate without missing many significant cancers. I felt that it was safe to go forward with targeted focal therapy.

We knew we would not do any harm with 3D mapping biopsies.

We also talk about MRI in relation to focal therapy. MRI has been around for a long time. We’ve gone from 1 Tesla to 3 Tesla and now 5 Tesla MRI units. We’re getting better at reading the MRI results. There has been a lot of discussion about how accurate MRI is and what it misses. MRIs still can miss aggressive cancers. Depending on which expert you believe, MRI misses anywhere from 7-10% up to 30% of aggressive cancers. MRI is a lot simpler than our painstaking 3D mapping biopsy, though, so it’s caught on.

Dr. Mark Emberton was the first to champion MRI in the United Kingdom. Dr. Emberton and his team now have a lot of experience in using MRI in focal therapy, primarily cryotherapy.

But to me, the gold standard remains the mapping biopsies. MRI is good, but not perfect. Perhaps we can use molecular markers along with MRI to rule out more aggressive cancers.

Focal therapy is a response to overtreatment and it does have a place, but with prostate cancer, we’ve got to follow people a long time before we come to a consensus.

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Gay Men + Prostate Cancer

william_goeren_mediumWilliam Goeren is the Director ofClinical Programs for CancerCare, a New York-based organization that offers counseling, support groups, education, and financial assistance to cancer patients and caregivers. Prostatepedia spoke with him about common issues gay men with prostate cancer face.

Why did you become a social worker?

Mr. William Goeren: I became a social worker in the mid-1980s in response to the AIDS crisis. This was not the direction I was headed, but the AIDS crisis had so shifted my outlook on life and altered my priorities that I needed to figure out a new direction, a new version of myself.

Like many young men in their early twenties, I had come to New York with dreams of a fulfilling acting career. In the midst of that, I had a shift in priorities. It was a rather dramatic shift. I was just trying to come to grips with grief, loss, death, and dying. And that’s when I attended a five-day workshop called “Life, Death, and Transition” presented by Elisabeth Kübler-Ross in upstate New York. Every day we had workshops, presentations, and individual work in her intervention model designed to help people understand death. It was very powerful to be in her presence. I knew who she was prior to going and was rather in awe of her.

After that workshop and others with a number of other high-profile people of that era, a hospice nurse strongly stated I would make a wonderful social worker. I applied to school, and my path very much changed at that point. I felt very passionate about my new direction.

How did you start at CancerCare and what do you do there?

Mr. Goeren: Earlier in my career, a gay male client in his early 30s who had a rare salivary gland cancer came in to where I was working and said that he was scarred after surgery and radiation. He said: “As a gay man with cancer, there are no services for me at all. If I had HIV, I would have services from A to Z.”

That comment stuck with me, so when I got to CancerCare in 2008, I started working on an LGBT cancer program here. In 2011, I collaborated with a New York organization called Services & Advocacy for GLBT Elders (SAGE), which provides psychosocial and concrete services for gay and lesbian elders. We launched a face-to-face support group for older gay men with cancer. That was the first actual service that we were able to launch. Though there’s a wide range of cancers in the group, the majority of the men have prostate cancer.

We’ve made attempts to launch other services; some are more successful than others. We started a group for gay women with cancer here in New York, but it was difficult to populate and maintain. We launched some online support group services, which are very robust and are for our national LGBT clients. There are currently two online groups for the LGBT community, one for LGBT cancer caregivers and the other for LGBT persons with cancer. Eventually, I would like to launch an online support group for the LGBT community who are bereaved because of cancer. We have a few publications, and I’ve done some talks at some of the national oncology social work conferences. In general, CancerCare now has 42 online support groups, which are social worker-facilitated, password-protected posting boards. These are not live groups but very much function like a face-to-face group.

What are the particular concerns or challenges facing gay men with prostate cancer?

Mr. Goeren: There is some research going on that is limited and minimal.

For example, David Latini, Daniela Wittmann, and Thomas Blank are doing research focusing on issues in the LGBT community and cancer and, in certain studies, research specifically related to gay men who have prostate cancer. They are interested in how gay men, differing from their heterosexual counterparts, react to being diagnosed; the impact of the diagnosis and treatment on their sense of self, emotional wellbeing, and quality of life; as well as how the medical community could be more sensitive and better trained in LGBT and cancer issues.

Research has shown that many gay men feel great shame, stigma, and embarrassment triggered by their emotional reactions and the physical changes related to prostate cancer and its treatment. This shame and stigma touches upon, for many, established internalized homophobia, previous experiences of discrimination and harassment, history of coping with, and in some cases, living with HIV disease, and negative experiences coming out.

Many men experience urinary and bowel incontinence, altered sexual function, and penile shortening (an underreported and under-discussed side effect). All of these impact a sense of masculine identity for men in general. For many gay men, prostate cancer can have a compelling and compromising impact on one’s sense of self within an already disenfranchised and diverse community, his self-esteem, and his ability to relate intimately to other gay men. Gay men report losses associated with prostate cancer for both the man with cancer and his partner. These losses include spontaneity, intimacy, and normalcy in sexually relating, which can lead to fears of rejection, emotional withdrawal, depression, and anxiety.

In addition, HIV affects many gay men who have cancer, whether they live with HIV, have survived multiple HIV-related losses, or are coping with issues of safer sex and determining their risk of exposure and infection. Another immense challenge for a gay man with prostate cancer is finding an oncologist who is educated in the complexly sensitive and layered issues that confront any gay man with prostate cancer. It is essential that an oncologist provide a comfortable, secure, and safe atmosphere, in which a gay man can disclose and discuss his sexual orientation, lifestyle, and activities.

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What Comes After MRI?

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Dr. Matthew Cooperberg is an Associate Professor of Urology and the Helen Diller Family Chair in Urology at the University of California, San Francisco. He is keenly interested in risk-stratifying prostate cancer to better match treatments to those most likely to benefit.

Prostatepedia spoke with Dr. Cooperberg recently about the role imaging plays in prostate cancer treatment.

Are there any other imaging techniques on the horizon that may replace the MRI?

Dr. Cooperberg: There is a lot of excitement for what will be the next-generation MR spectroscopy based on hyperpolarized Carbon-13 imaging. This is next-generation MR imaging in which we can essentially watch metabolic pathways unfold in real time at the millimeter level. That’s going to be incredible. This technology was developed by John Kurhanewicz at UCSF and is in late phase testing now. A few of these machines exist so far around the world; this may really be a game changer.

Technologies for next-generation ultrasound may also be able to yield a very high-resolution picture. These technologies have to be studied carefully head-to-head. It may bear out that better ultrasound technology will prove more cost-effective and easier on the patient than MRI, which requires separate visits, separate costs, and multiple physicians. Plus, MR is competing—especially when we talk about active surveillance—with blood, urine, and tissue biomarkers. Should a surveillance candidate who is on the edge get an MRI, a Decipher test, or both?

Would you use multiple tools or just one?

Dr. Cooperberg: Potentially multiple, but if everyone uses multiple tools, the cost increases exponentially. We don’t always know what to do with conflicting information. If you have a reassuring MRI and a concerning Decipher score, what do you do? If you have a high biomarker score and the MRI still doesn’t show anything, what do you do? These are challenging questions.

From a research standpoint, this is what makes it fun. But for the man on the ground, there is a lot of confusion. It’s part of the reason that I’m skeptical about how aggressively a number of these tests are marketed in the prostate cancer community.

You mean how tests like Decipher are marketed in the community?

Dr. Cooperberg: And MRI. It’s all in the same category. When I give a talk on MRI, I consider it to be a novel biomarker. It faces all the same challenges and has to play by all the same rules as Polaris or Decipher. You’ve got to prove that it’s going to give you better information than you can get from the basic clinical assessment. You’ve got to prove it’s going to help you make a better decision. And you’ve got to prove that it gets better outcomes, just like the biomarkers. Just as we’re not quite there with the biomarkers, we’re not quite there with MRI.

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Patients Speak: Getting The Gallium-68 PSMA Scan

Mr. Michael Dietrich had the gallium-68 PSMA scan as part of a clinical trial when his PSA starting rising three years after the completion of radiation therapy. He spoke to Prostatepedia about the scan and how the results altered his treatment path.

How did you find out you had prostate cancer?

Mr. Michael Dietrich: I had a bad case of prostatitis in 2006. A PSA test done at that time read a value of 6 ng/ml. My urologist was concerned and I had a six-core biopsy performed. All six cores came back negative. I was treated with antibiotics for the prostatitis, which alleviated my symptoms. The urologist thought my elevated PSA was related to the infection and did not stress close monitoring of my PSA. I didn’t know any better and I put it out of my mind. I had another bout of prostatitis in 2011. A PSA test then revealed a high value of 65 ng/ml. A 12-core biopsy (a newly established standard) was performed and revealed 80% involvement, 4+3=7 Gleason score, and seminal vesicle involvement. I don’t know if there is a relationship between my prostatitis and my cancer, but the synchronicity is odd. Either way, the prostatitis led me to my urologist and, weirdly enough, I have to say I’m grateful for it. Gratitude for prostatitis. Weird, huh? I also was diagnosed with osteoporosis at that time. I was 50 years old.

Young.

Mr. Dietrich: Yes, pretty young. Though undetected, I probably had prostate cancer at 45 years old when I had that original PSA test and biopsy done. If I had had a 12-core at the time rather than a six-core biopsy, they very well may have found it then. Needless to say, I’m a fan of 12-core biopsies.

What treatments were suggested to you and which did you choose?

Mr. Dietrich: After the tumor board at Hollings Cancer Center here in Charleston, South Carolina, discussed my case and I was presented all my options, I opted for aggressive radiation and hormone therapy. As I had seminal vesicle involvement, I believed I would need radiation anyway, as I understood typical surgical outcomes involving seminal vesicles were often not so great.

What type of radiation did you get?

Mr. Dietrich: I had both intensity modulated radiation therapy (IMRT) and brachytherapy. For about six months before treatment, I had androgen deprivation therapy (ADT). I chose to have it a little longer than normal in hopes that it would further shrink the tumors to narrow the target for radiation and further sensitize the cancer to radiation toxicity. I don’t know if the wait really helped, but in my mind it made sense. After radiation treatment was finished, I received 18 months of ADT3: Lupron (leuprolide), Casodex (bicalutamide), and Avodart (dutasteride). I’ve really been very happy with all the treatments I’ve received.

What kinds of side effects did you have from the radiation and ADT?

Mr. Dietrich: During radiation treatment, I got tired and a little achy. It also constipated me, which surprised me because a more common symptom is diarrhea. I asked for a peristaltic drug as I felt GI motility was an issue, so I was on Reglan (metoclopramide) at the end of treatment and it did help. Currently, I have the extended side effect of having to urinate a couple times a night, but it’s tolerable. I have moderate, not severe, erectile dysfunction (ED). I use Viagra (sildenafil) if necessary.

My very fine radiologist is an advocate for the use of rectal balloons during radiation treatment to help protect the colon from unwanted exposure. They were used during every treatment. Having a rectal balloon inserted in your colon (20 plus times) in conjunction with maintaining a full bladder during treatment to minimize organ movement is not a comfortable combination, but yes, it’s absolutely worth the beads of sweat you may develop on your brow it if helps with outcome and your future health.

The hormone therapy had its challenges for sure (like hot flashes, mood swings, and tender nipples), but like any other experience that a life can be presented with, be it negative or positive, I found it a learning experience.

As I was going through hormone therapy, my wife was going through menopause at the same time. We would trade the ceiling fan remote back and forth all night long dealing with our hot flashes. It was a bonding experience and it was interesting to be a guy understanding menopause.

I tried an experiment: from the day I started my hormone injections, I never shaved. I wondered how a lack of testosterone would impact beard growth and, interestingly enough, I had a 5-inch beard after my two year castrate period. Much of my body hair receded, though.

I lived in a beach town while I was on hormone therapy. If you fully want to understand how testosterone rules an adult male’s perception, remove sex hormones from your body, go to the beach, and monitor your perception and interest. An attractive, half-naked body can be as interesting as a sea gull or a dead horseshoe crab. Interesting, yes. Desirable, not so much.

I was surprised to find, at times, a certain beauty in neutrality and in being in a state of unsexually biased perception. Like the lifting of an obscuring fog to some degree. I was happy when my hormone therapy was over and I got my energy and sexual interest back, but the window of perception was interesting.

I found myself often viewing the world more like when I was a 10-year-old boy. I often experienced lightheartedness and unbiased acceptance of everybody. It was a perception benefit that I’ll never forget for the rest of my life. To this day, because of that insight, I am very aware of how hormones currently skew my perception. Aggression, arousal, competitiveness. It’s all there, but now subject to more acknowledged objectivity than before I attended eunuch university.

I’ve not heard that before.

Mr. Dietrich: Really? I am 50. I went to a liberal arts college in the 1970s where there was quite a bit of experimentation with mind-altering substances, myself included. Controversial, I know, but maybe that early use of hallucinatory drugs in my formative years did set a template for accepting/embracing shifts in perception. Maybe, maybe not. Regardless, I would encourage anybody entering hormone therapy to not be overly wary of it and realize that as your testosterone levels fall, so falls your caring about the fact that your testosterone is going away. Testosterone tends to be very possessive of itself. Be flexible with its passing. Speaking of mind-altering drugs, I was on a low dose of the antidepressant Effexor (venlafaxine) for hot flashes. It cut back hot flashes by 50% and did impact mood as well. It no doubt helped my attitude.

Getting off the Effexor (venlafaxine) definitely requires gradual weaning. I missed a dose or two by accident and felt quite nuts. It requires quite a structured commitment, a commitment not to be deviated from.

What did all this do for the cancer control? Did the radiation and ADT keep your prostate cancer in check?

Mr. Dietrich: My hormone therapy ended in 2013. My testosterone came back to my normal (between

700 and 900) and my PSA stabilized between 0.2 and 0.4. Normal readings for a patient who had received radiation, that is. After three years of stability, my PSA started rising mid-2016.

My mother passed away in January of 2016. Right afterward, my PSA started rising. My father passed on as well in December. My parents lived next door to us and we grew incredibly close. Perhaps it was coincidental, but I can’t help but wonder if the extreme grief and stress I experienced exacerbated my recurrence and contributed to my short three-month doubling time.

Progressively, my PSA rose beyond 2 plus my nadir of 0.15, signaling likely recurrence in a radiated patient. I had a skeletal CAT scan and an MRI. The bone scan was negative. The MRI was largely negative, but it revealed one—and I can quote—area of enhancement involving the right apex and the right posterolateral midgland to base, which could possibly represent residual recurrent disease, and no lymphadenectomy or other metastatic disease to the pelvis. My oncologist here in Hollings, South Carolina, mentioned the gallium-68 PSMA scan. We found a clinical trial at the University of California, San Francisco (UCSF), which I went ahead and joined.

You traveled so far to get the scan?

Mr. Dietrich: Yes. I had options somewhere on the East Coast and in Texas, but I chose UCSF because I have friends and family out there.

What was it like to get the scan?

Mr. Dietrich: I had to wait for about a month for a space to become available on the clinical trial. The scan generally costs $4,000, but my insurance covered it.

It wasn’t much different than an MRI. Very benign. I was worried about side effects, but I can’t say it was any more than with the MRI I had done with a tracer involved. I guess the only thing that really comes to mind is that there was a fairly ominous stainless steel-encased device that shielded the syringe from radiation leakage. I didn’t have any side effects from the solution or the scan. Within days, I communicated with the team performing the scan and they sent me an image and reading. There was one active 3mm node on my right side and a vague, nondescript one on the left, indeterminate but suspicious. No uptake shown on the prostate gland or anywhere else.

What was the plan after imaging?

Mr. Dietrich: That was a process to navigate. Treating oligometastatic disease is controversial with many people feeling that there is no long-term survival benefit in local treatment of local lesions and the correct treatment path is to go on systemic therapy. I was presented with chemotherapy (docetaxel) in conjunction with ADT3. I wasn’t ready for that and my gut instinct (or an extreme sense of denial) kept me looking for an alternative.

Having already had radiation to my pelvis, I was wary of further exposure so I looked into lymph node surgery.

I discovered Dr. Jeffrey Karnes at the Mayo Clinic, who regularly performs lymph node dissections on oligometastatic patients.

He performed a biopsy of my prostate and seminal vesicles, which luckily turned out negative on all cores.

On July 12, 2017, I had the lymph node dissection. Twenty-seven lymph nodes were removed. The pathology revealed two active nodes, the very same two nodes that the gallium-68 PSMA scan revealed. I’m in recovery right now from that surgery.

If you compare the gallium-68 PSMA scan to my MRI, the MRI suggested possible local disease in the prostate and nothing in my lymph nodes. The gallium-68 PSMA scan didn’t show anything in the prostate but did show active lymph glands, which was accurate. It was clear. Very clear.

Had I not had that gallium-68 PSMA scan done, it wouldn’t have been clear to me what to do. The clarity of the scan and the biopsy made me comfortable with the option of lymph node dissection, which in my situation may offer an up to a 20% chance of durable remission/cure or, if nothing else, may extend my time till I have to consider systemic treatment. A gamble perhaps, but one worth taking I feel, especially as I currently have no gross negative side effects.

How is the recovery going?

Mr. Dietrich: So far, I just have regular incision tenderness and soreness. No infection or anything else. The gastrointestinal recovery is a slow process. They have to really move your guts around quite a bit and anesthetize your intestines in order to work. Motility and digestive activity take a while to return even if you’re not feeling pain. I should probably have waited a couple more days for the flight back home, as it was just a week after surgery.

Do you have any advice for men who are considering getting this scan?

Mr. Dietrich: I wouldn’t hesitate. When I compare the results of what my MRI read compared to the clarity of the gallium-68 PSMA scan, it’s a no-brainer.

Do you have any thoughts about participating in a clinical trial?

Mr. Dietrich: Well, the gallium trial was just an investigational scan, not a comparative trial involving placebos or a control group. It just felt like any other scan.

As far as my thoughts of seeking treatment options, it can be a frustrating process as you can be presented contradictory beliefs on what’s your best path. Keeping focused on current data and talking to several educated oncologists is essential.

Collect data from everywhere, remain objective, and don’t stop. Web health message boards can be extremely good sources of both knowledge and support. There are other patients present on boards who are fighting for their lives as well and are very aggressive hounds on collecting and sharing current clinical trial, evidence-based data.

I own a company that services pathology instruments here in the Southeast. I’m always telling my technicians to practice distant objectivity and try to revoke preconceived notions when diagnosing a complicated, failed instrument. Preconceived beliefs can block our subconscious mind from connecting abstract dots into a correct forward path of figuring out a complicated problem.

Beginner’s mind?

Mr. Dietrich: Yes, beginner’s mind. That’s a good way to put it. Be confident. As a patient, you are in a position where you might be more open-minded, motivated, and educated on current data than even some physicians. You are fighting for your life and if you remain open-minded and if you don’t have a preconceived belief or a professional position to defend, you can think your way clearly.

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