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Conversations With Prostate Cancer Experts


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Dr. John Gore: Why Medicine?

Dr. John Gore is a clinician, surgeon, researcher, and educator specializing in urologic oncology and general urology at the University of Washington.

Prostatepedia spoke with him about how Decipher changes the way doctors treat men with prostate cancer.

Why did you become a doctor?

Dr. John Gore: My initial vision for my life was that I was going to be a lawyer. Then I found that I really enjoyed my experiences while interning at the hospital. That brought about an application to medical school. I think being a doctor offers a chance to have a daily meaningful impact, which is a unique part of the job.

How did you end up working in urology?

Dr. Gore: Urology is a specialty that very few people enter medical school thinking that they want to do. In part, most people are like I was and don’t even know about the specialty. I don’t have any doctors in my family. The only doctor I knew was my own pediatrician. I just assumed I was going to be a pediatrician.

But I really enjoyed surgery. I enjoyed being in the operating room. I just really enjoy the generic construct that someone has a problem and I have the tools to fix it.

Urology is an interesting hybrid. Most surgeries have a homolog in internal medicine. For example, there’s cardiothoracic surgery and cardiology. There’s colorectal surgery and gastroenterology. We don’t really have that in urology. We do a lot of chronic disease management. We do a lot of long-term follow-up of our own patients. It is, in many ways, a hybrid of internal medicine and surgery, which is really cool.

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Dr. Felix Feng: Why I Became A Doctor

Dr. Felix Feng is a physician-scientist at University of California, San Francisco (UCSF) keenly interested in improving outcomes for patients with prostate cancer. His research centers on discovering prognostic/predictive biomarkers in prostate cancer and developing rational approaches to targeted treatment for therapy-resistant prostate cancer. He also sees patients through his prostate cancer clinic at UCSF.

Prostatepedia spoke with him about why he became a doctor who cares for men with prostate cancer.

Why did you become a doctor?

Dr. Felix Feng: I became a doctor because my family has a strong history of cancer. Unfortunately, I learned the repercussions of cancer at an early age. All four of my grandparents passed away from some form of cancer. My father has successfully overcome three different cancers. Just last year, my sister, unfortunately, passed away in her 40s from cancer.

Before ever becoming a doctor, I was part of many patients’ families. I saw it strongly from the patient side and decided that if I was going to commit my life to studying something, it was going to be cancer.

So then your journey is really personal.

Dr. Feng: Very personal.

Join us to read Dr. Feng’s thoughts on genomics + prostate cancer.

 


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The Making of A Cancer Activist

Joel Nowak is a prostate cancer patient and well-known cancer activist.

Tell us about your own prostate cancer journey and how you came to cancer activism.

Mr. Joel Nowak: Part of my journey to being an advocate pertains not only to having prostate cancer and recurrence but also to the fact that I had multiple primary cancers. I currently have five different primary cancer diagnoses.

I was treated initially for prostate cancer at the end of 2001. I had a Gleason 3 + 4 with a PSA of only 4. I had surgery. I went back in five years and my PSA went crazy, up into the 80s.

At that point, it was a recurrence. We did a bunch of scans. We identified a couple of lymph nodes in the prostate bed, as well as a very significant and large tumor in my kidney. At that moment, the assumption was that I had a prostate cancer tumor in the kidney and that the kidney had stopped functioning and was basically dead. I had a nephrectomy, which is the removal of the kidney. We found out that it was a different diagnosis: clear cell renal cancer.

Looking back, I see that prostate cancer recurrence saved my life because that’s how I found out that I had renal cancer. If it weren’t for my prostate cancer recurring, I would not be here today.

I was in my early 50s, so I was fairly young at the time. I knew I was metastatic with prostate cancer and had been diagnosed with another primary cancer. Knowing that I was metastatic weighed very heavily on me. There was no way to use that C-word—cure—which I don’t like to use. I looked desperately for people in a similar situation. I refer to it as looking like me, but I don’t mean physically. I mean people in their 50s, with a kid in high school, a kid in college, and metastatic prostate cancer that was incurable and possibly terminal.

I found myself becoming angrier and angrier.

Not only did I have metastatic cancer, but also I felt very alone in the sense that I couldn’t find anybody in a similar situation. I went from one cancer support group to another. Though I lived in metropolitan New York where there are options, I still could never find anybody I could relate to directly, someone with a similar experience. I found plenty of older men who were worried about whether or not they would make it to their grandchild’s wedding and things like that, but for me, that had no relevance. I became more isolated, lonelier, and angry.

One night, I was inappropriate with the group leader of one support group. I was overly aggressive and blamed that person for what I perceived as my situation. Instead of reacting to my aggression, the person just sat back in their chair, looked at me, and said, “Why don’t you do something about it?” I went home and discussed it with my wife who tried to stabilize me. “Why don’t you,” she said. I got angrier at first and just stewed for a while.

It has been 10 years, but when I went to bed that night I thought I was going to die within a few years. It’s common for many men with recurrence or metastatic cancer to wonder if they’re going to die in a year or two. I felt terrible and angry. I’m not really an angry person, but I had become a very hostile person.

When I woke up the next morning, I decided that I didn’t want to live my life feeling that way. I was going to find a way to let go of that anger and do something about it. That’s how I got involved with activism.

You decided to channel all the fear, anger, and anxiety into something positive.

Mr. Nowak: Yes. I think that’s what it was. I’m not saying that I still don’t have moments; I do. And since then, I’ve had two additional primary cancer diagnoses. One of them was a rare cancer. But the prostate cancer was the only one that caused that kind of emotional response, probably because that is the only one, so far, that is metastatic.

I spend a lot of time with prostate cancer, but I also work with other cancers—metastatic, advanced, and progressed prostate cancer.

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The Metastatic Prostate Cancer Project

Dr. Eliezer Van Allen, Assistant Professor of Medicine at Harvard Medical School, a clinician at Dana-Farber/Partners Cancer Care, and an Associate Member at the Broad Institute of MIT and Harvard, focuses on computational cancer genomics, using new technology in precision medicine, and resistance to targeted prostate cancer therapies.

Prostatepedia spoke with him about the Metastatic Prostate Cancer Project, a nationwide genomic research study for men with advanced or metastatic prostate cancer.

What is the Metastatic Prostate Cancer Project?

Dr. Van Allen: The Metastatic Prostate Cancer Project is a patient-driven research initiative whereby we researchers partner directly with patients to dramatically expand the scope of our understanding prostate cancer genetics. We try to fill in all of the missing gaps that are currently a challenge in our field. Hopefully, we’ll learn what drives advanced prostate cancer, how to treat it more effectively, come up with new drugs, and understand the differences between more indolent cancers and those that progress in the metastatic setting. Essentially, I want to answer the questions I had during my initial clinical observations way back when.

You say you want to partner directly with the patients. How does that disrupt the normal clinical trial process? Normally, patients would access trials through their doctors?

Dr. Van Allen: Exactly. That’s what I’ve done during my postdoctoral training and in my junior faculty stage. That’s what we all do: we devise the research project, write a bunch of protocols and consent forms, and get them approved in our hospitals. Then we rely on the doctors and research teams to approach patients. They consent their patients to the studies that are already defined and set in stone. We use that to research. That’s obviously been a driving force for many modern discoveries. It’s a remarkable thing.

And that’s how we have to lay the first genetic maps of prostate cancer and cancers in general. This project flips genomics on its head. We’ve been working with prostate cancer patients to build a project with, by, and for men with advanced prostate cancer, their families, caregivers, and loved ones in order to resonate with patients. We are creating a mechanism such that patients can consent without leaving their home and participate without necessarily living near an academic medical center. This helps expand the scope of what we were able to learn in new ways.

A couple of years ago, while trying to define the genetic maps of local and advanced prostate cancer, we launched the first of these patient-driven projects at the Broad Institute in metastatic breast cancer. Using social media, patient outreach, advocacy partners, and patients themselves describing what it means to participate in these projects, that study enrolled over 4,000 women and men with metastatic breast cancer. Given that we’re thrilled when the average study to define the genetic maps of prostate cancer enrolls 100 patients over the course of years, if not decades, that number in such short time is remarkable. As we developed that project, I immediately thought of prostate cancer.

Rather than doing a top-down research project whereby we start with an idea in a researcher’s head, we go through the hospital and the doctors, and eventually, the patients, we’re starting with the patients. They’re talking directly to the researchers and building up. That is the ethos of this project.

This is not a traditional, academic project whereby we generate all the data, sit on it in our own little groups while we try to make sense of it, and eventually make it available to the larger community. Rather, as soon as we have a nominal amount of data, we make it immediately available to any researcher around the world who wants to use it. We’re trying to create a resource that anyone could use. The first 100 patients with genetic and clinical data have been made available for researchers pre-competitively. We don’t wait and publish these results in an academic journal or any other medium first.

Publishing in a traditional academic journal can restrict access for patients. If they want to read to read the results, they have to pay $30 to download the article.

Dr. Van Allen: Exactly.

If someone reading this wants to participate, what do they do?

Dr. Van Allen: If you have advanced prostate cancer, simply go to mpcproject.org. There, the homepage describes what’s involved. When you click the “count me in” button, it sends you on what we hope is a very quick journey through a few basic questions. Then, it asks for your permission or consent to participate in this project. There are a few more simple questions after that.

Soon after you register, you’ll receive a box that contains a saliva kit that the patient will spit in and return to get their inherited DNA information. Additionally, there’s a liquid biopsy kit, which is a vial that you bring to your doctor’s appointment to collect a liquid biopsy of your tumor. Then you return the sample to us.

When we receive those materials, we perform genetic profiling and access the medical record data. We de-identify everything to make sure it’s private, so nothing is exposed. We build a cohort and learn as we go.

Each step of the process has been vetted, scrutinized, criticized, and modified based on patient feedback such that we hope it resonates with this group. Part of this is actually iterating as we go. This is a research project. We’re not a clinical lab, so at the moment at least, we do not return results to individuals. But we do regularly engage with patients to share aggregate results of anything we learn in real time.

Patients won’t have access to the results of their tests?

Dr. Van Allen: Right. Unfortunately, we can’t provide individualized results, at the moment at least, because it’s beyond the scope of this project. It’s something we’re very interested in trying to explore. It creates many additional complexities. There is a holy patient/doctor relationship that we want to respect. That being said, often men will ask what’s in it for them and ask why would I want to do this?

We try to share aggregate results as regularly as possible. Patients can take those aggregate results, or any sort of interesting findings, to their doctor to consider if it’s relevant to them. Also, it’s a beautiful thing to see how patients themselves get when it comes to helping others: This is for the brothers, the sons, the patients that come after me, and I want to contribute. I want to help solve this puzzle, even if I may not see it in my lifetime. That altruistic aspect is genuinely great.

They do get to participate.

Dr. Van Allen: Yes. They’re just surprised that folks like myself, or anyone in the research world, is even talking to them. But patients are the most powerful people in this world. They have the power to really make these kinds of change

I think most people would want to participate if it’s easy to do. Are you providing detailed information about the kinds of tests you’re running so that if patients wanted to repeat them with their own doctor they could?

Dr. Van Allen: We’re doing whole exome sequencing, which looks at all the coding region of the genome on the tumor and the inherited DNA.

We are also piloting sending in liquid biopsies. One emerging technology that’s arrived over the last couple of years is the ability to detect circulating DNA that has shed from the tumor into the blood. That is an important advance for this project because most men with metastatic prostate cancer will not have had a biopsy of their tumor at the time of metastatic disease. They may have had a prostate biopsy years, if not decades, before but that tumor from way back when isn’t an accurate snapshot of what the tumor is like in the metastatic setting. Detecting a tumor in relative real time using blood is something we’re pretty excited to explore as part of this project.

For the men we sequence, we do our best effort to track down their tumor block. We go through every precaution to ensure that we don’t exhaust the tumor biopsy and that clinical care comes first. If there’s ever a need for it down the road, that’s the number one priority. We’re exploring how to use these liquid biopsies to help us in this project.

Do you handle the liquid biopsies?

Dr. Van Allen: Yes, it’s the Broad Institute.

Can anyone participate? Can non-Americans participate?

Dr. Van Allen: At the moment, we are approved so that anyone from the United States and Canada can participate. Anyone in other parts of the world can complete the survey and provide some of the patient-reported data, but we don’t currently have permission to do the subsequent genomic profiling for them. In our soft launch, we’ve scanned through self-reported information from almost 200 patients. That has already initiated some ideas for research projects we never would have imagined.

This patient-reported data is quite valuable. Anyone who, at the moment, may not be eligible by virtue of not qualifying from a regulatory perspective for our institutional review board can still contribute to this project in a meaningful way.

A fair number of people travel for medical procedures. If someone travels to the United States for radiation, for example, could they have the samples collected at a United States institution and therefore participate in that way?

Dr. Van Allen: For now, the study can only collect samples and medical records from residents of the United States and Canada. We are actively investigating methods for including international patients.

Is there a fee to participate, or is this free for men?

Dr. Van Allen: Free.

Is there anything else you think men should know about the project?

Dr. Van Allen: We’ve been concerned about patient interest and openness. In our first project for breast cancer, the social media footprint was quite high. The social media chatter is noticeable and folks feel pretty comfortable expressing their thoughts, feelings, and opinions about their disease. Even though incidents of disease is roughly the same in the United States for breast and prostate cancer, the social media footprint for prostate cancer is the complete opposite.

As we geared up for our soft launch, we were curious to see if we’d end up with the same number of participants, even if we weren’t seeing any social media chatter. People don’t talk about this disease. Indeed, on the first version of the saliva kit that we mail out to the patients, metastatic prostate cancer project was printed on the box. Men asked us to take that off the box. We didn’t understand why. One guy explained: “I don’t want the mailman to know I have prostate cancer.”

It’s that kind of challenge we’d like to help overcome. We want to make men feel more comfortable talking about this disease amongst friends, families, and coworkers. We hope this project can be the mechanism to help men open up about it. It’s encouraging that in the first ten days we’ve accrued an almost identical number of patients as we did with the breast cancer soft launch a couple of years ago. Nobody talks about prostate cancer on Twitter and Facebook, at least in open settings. We’re very curious to learn how patients become comfortable talking about this disease and about this project.

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Imaging Metastatic Prostate Cancer

Dr. Eric Rohren is the chair of the department of radiology at Baylor College of Medicine.

Prostatepedia spoke with him about imaging metastatic prostate cancer.

Subscribe to read Dr. Rohren’s comments on radium therapy + imaging. Members can read the interview in their March 2018 issue of Prostatepedia.

In terms of imaging, what kinds of scans can determine if a man has metastases (mets) anywhere in his body?

Dr. Eric Rohren: X-ray has been around for a long time and still has a role to play. It’s easy to obtain, it’s cheap, and it has low radiation exposure. We still rely on a good old-fashioned chest or bone X-ray, depending on the patient’s symptoms.

These days, most patients with any type of malignancy, and specifically prostate cancer, are managed in a couple of ways.

One way is a CAT scan. CAT scan is a 3-D imaging technique that uses X-rays that can take images of the body, chest, abdomen, and pelvis. Most patients with newly diagnosed prostate cancer or treated prostate carcinoma have undergone a CAT scan at some point in the course of their disease. CAT scans can show us the prostate gland, lymph nodes, liver, and many of the different organs where cancer may be hidden.

To supplement that, patients with prostate cancer often get a bone scan, which is a nuclear medicine technique. In a bone scan, we inject radioactive material that goes to the skeleton, and most strongly so in areas where there’s increased skeletal turnover, where something in the bone is inciting a reaction. It may go to benign things like healing fractures, arthritis, and various areas of injury. But the radioactive material also goes to areas of metastatic disease in the skeleton, and it localizes most particularly in those areas, lighting up on these bone scans.

Rather than just a particular region of the body, a bone scan shows us from the top of the head all the way down to the feet, which is nice. We get a look at the entire skeleton, and we can look for the little spots that are lighting up that may indicate the presence of metastatic disease in the skeleton.

CAT scans and bone scans are very widely used. A bone scan is a little bit better than a CAT scan in looking for these bone metastases, so the two really augment each other in detection of the disease.

Beyond these, we do have some newer imaging techniques coming into play. There’s a way of doing a bone scan with PET scanner. A PET scanner is another nuclear medicine technique that is more sensitive than a standard nuclear medicine camera, and it acquires a CAT scan at the same time. You can look at the images on the nuclear medicine technique overlaid on the CT scan to see where exactly the activity is and what it’s due to.

We can also use some agents with PET scanning to look at the skeleton. A so-called fluoride PET/CT bone scan seems to have many advantages over a conventional bone scan in terms of detecting smaller disease, more sites of disease, and things like that. MRI is also used in some cases.

Traditionally, MRI is used to evaluate specific areas, so if there’s pain in a particular area such as the skeleton,

MRI is a great way to do that. MRI is also used to look directly at the prostate gland and at the prostate bed after prostate surgery or after other therapy in the pelvis. It can be very good at detecting small volumes of disease. The problem with PET scanning and MRI scanning is that they are less accessible, although MRI is in most places now, and most major areas have access to a PET scanner.

Then there’s the issue of cost. Both techniques are costly. We need to determine if the added cost is justified by the additional information that those scans provide.

Beyond these techniques, the exciting thing for nuclear medicine is the new developments on the horizon. As we discover more about the molecular nature of disease, why cancer forms, and what makes and defines a cancer cell, those molecular discoveries can be translated into imaging studies that we can then use with PET scanning to be even more sensitive for detection of disease.

For example, there are several new molecular tracers in the United States that are approved for imaging of prostate cancer. Choline and Axumin (FACBC) are both agents approved in the United States for use with PET/CT.

Internationally, people are moving to a compound called prostate surface membrane antigen (PSMA) that can image prostate carcinoma. It seems to be even better than Choline or Axumin. The data is still a little bit undetermined at this point, but there’s a lot of excitement around these newer agents being able to seek out cancer in very small volumes anywhere it occurs in the body.

Then I guess the question becomes: when do you treat?

Dr. Rohren: Yes. That is very much the question. As we discover more and more sites of disease and smaller sites of disease, the question becomes: do we need to treat those aggressively or conservatively? We’re discovering new things about tumor biology, and we need to understand how that gets translated into the best appropriate therapy for patients.

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Patients Speak: Anxiety, Depression + Prostate Cancer

Roger G. is an Australian man with prostate cancer.

He spoke with Prostatepedia about how he dealt with anxiety and depression during his prostate cancer journey.

How did you find out that you had prostate cancer?

Roger: My general practitioner had been checking my PSA since 1999. I’d had some issues with urination. He wasn’t too concerned because my PSA hadn’t changed much. In 2003 it had risen to 3.8. In 2004, he said I should get another PSA test but said to leave it until early December, which I did. By that time it was up to 5.6. He referred me to a urologist who said, “We’ll do a biopsy. No hurry. Come back after Christmas.”

I went back to see him in January. The cancer looked pretty well contained. My Gleason score was 3+4=7. He said we’d have to operate, but there was no rush. At that stage, I was a little bit anxious about it all. I thought: Here we go. Just my luck to have cancer, but let’s get on with it. The urologist said, “If it has spread, which I don’t think it has, you can go on hormone treatments. Lots of people get 12 more years with that. Don’t worry.”

I had the bone scan to check if it had spread. Nothing was found in my bones. I had them book me for surgery as soon as they could. The surgery went well. Three months later, I went back to see him. My PSA was 4. He said, “Surgery failed.”

A week later I had another PSA test. It was 5. I started to feel a little bit anxious, but he told me not to worry. He sent me off for a PET scan, which took a little bit of organizing. This was back in 2005 when the PET scan machines were new. They didn’t even know which PET scan to give me. I now know that the PET scans I had were part of a study to determine which was best for prostate cancer. I had one scan and then another. It lit me up like a Christmas tree. There were three big red dots well apart and away from where my prostate was. I was pretty anxious about it all.

How did you deal with that feeling of anxiety?

Roger: I asked, “How long have I got?” They estimated two to five years. I asked about surgery? “No,” they said, “That’s like weeding a garden.” What about radiation? They said they’d have to burn my guts out. I asked what to do. They just told me to “Keep fit and come back in three months.” I was 59. My experience with cancer in my family was pretty grim. My dad was diagnosed with cancer and died three weeks later. It wasn’t prostate cancer, though. My aunt died from lung cancer.

One of my sisters said it was breast cancer, but I didn’t know that at the time. She died pretty soon after her diagnosis. My dad’s brother was 72 when he told us he had lung cancer on Boxing Day in 1995. He was dead by Easter. I was a mess. I would see healthy people and say to myself, “How come you are okay and I have only a few years?” The black dog was giving me a hard time.

But that’s when I organized myself to see the psychologist at the hospital. I had a breakdown. I saw her every week and just talked about how things were going.

She suggested I obtain the Guided Mindfulness Meditation CDs by Jon Kabat-Zinn and start with body scan meditations. I bought the discs. These helped a quite a lot, and I felt as though I was doing something to cure the cancer.

Then, by chance, I went to a support group meeting in one of the Melbourne suburbs—pure chance. I couldn’t find anybody at the meeting who was in the same boat as me. Everybody I met had either had surgery and was all clear, or they were just waiting and watching. But also at that meeting was a motivational speaker. He was fantastic. He talked about how it was mind over matter and about self-talk. He mentioned Lance Armstrong’s book: It’s Not About The Bike.

It’s about turning things around with this self-talk stuff. It all gets to you. I’ve only got a few years to live. I want to really enjoy the rest of my life. Now, I say to myself, “You’re going to be okay.”

Anxiety had me looking at the dark side. Everything on the TV was death. It wouldn’t matter what it was. It was all death to me. It was all why me? A good friend invited me around to his place for a drink and we enjoyed a bottle of red wine. For the first time in two months my nerves settled, and I knew that I could put the black dog in his kennel. Things took a dramatic turn. My boss, who was very understanding, told me of his brush with cancer and how he was given the all clear.

A work colleague told me about his 80-year-old father who had been told he only had a year to live when he was 40. When I took my first PSA test in 3 months, my general practitioner said it might be down. And it was: 3.4!

Cancer is tough. I’m sure most people wonder why me at some point.

Roger: I went through a period when I had a tough time. I was on a hormone-suppressing drug when my PSA went back up to about 20. I got a little bit depressed once

I started on that. I went back to the meditation tapes. There were other issues, too, with loss of libido and putting on a bit of weight. I use the meditation CDs and selftalk. I keep myself fit. I do a good bit of resistance training and stretching.

In June 2016 I had another serious mental breakdown. My general practitioner put me on a mood enhancing drug. Now I’m feeling terrific and energized.

And you lead a support group, don’t you?

Roger: I’m the secretary there. That keeps me busy. I play golf three days a week. I walk around the golf course, dragging my clubs around behind me. Even though I was depressed, I still played golf and worked out at the gym.

Do you have any advice for other men facing similar circumstances?

Roger: Prostate cancer is a chronic disease. If you get a black mood, use self-talk. Talk to yourself inside your ear: “You won’t have any symptoms. They don’t happen. If you do get a bit of pain, well, you can just let them do a bit of radiation.”

You’ve got to keep in touch with your oncologist, just to see if you are eligible for one of the new effective treatments. Work out because your bones degrade when you’re on hormone treatments. Exercise is medicine. Get your heart beating and get your muscles working. This will give you a sense of control over your destiny.

If you are anxious or depressed, see your general practitioner. The medication my general practitioner prescribed sorted that out (and decreased the intensity of the hot flushes).

I enjoy my grandkids. Two of my daughters are married. I’ve got four grandkids. It makes me see the joy. I am really looking forward to all the joys of old age. I had a friend who is about 12 years older than me and he has dementia. I think prostate cancer is a better route.

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Meditation + Active Surveillance

Dr. David E. Victorson is a clinical psychologist and Associate Professor at Northwestern University’s Feinberg School of Medicine in Chicago, Illinois.

Prostatepedia spoke with him about a trial he’s running on mindfulness meditation and active surveillance for prostate cancer.

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Why did you become a clinical psychologist? How did you end up working with cancer patients?

Dr. David E. Victorson: My training was in clinical health psychology and behavioral medicine. A lot of my early training experiences were in cancer, and in some of those, I had the opportunity to work with men with prostate cancer and their spouses in a clinical capacity.

The reasons why I went into this area are multifaceted, but I would say one of the primary reasons is that there is so much that we can do with our own behaviors and lifestyle practices. There is so much good that we can do for our own health by ourselves without needing any heavy equipment or extreme intervention. A lot of times, it just takes a little nudge in a different direction to get people going on a path that will be incrementally better for them.

How do you usually work with patients?

Dr. Victorson: I don’t work with patients in a clinical therapeutic capacity today. I do 100% research. In 85-95% of our research studies, however, we deliver psychosocial and behavioral clinical interventions. Sometimes you might call them self-management interventions. A lot of them are prostate cancer-focused.

Usually, we involve spouses. We help men and their spouses learn skills that can support their health and well-being in different ways.

Most of those studies are group-based, bringing groups of men and their spouses together for classroom skills.

I’m sure that the skills you teach are useful beyond a cancer diagnosis.

Dr. Victorson: They are. A lot of the things we do are applicable across a whole range of different diseases and conditions. People who don’t have a disease can still benefit. But when you get a prostate cancer diagnosis, modifiable health behavior comes into the picture quickly in terms of diet and exercise.

What we’re trying to do with our meditation study is along the lines of mood management, which can be really important in the context of cancer. There’s nothing like a cancer diagnosis to motivate a person to make that kind of lifestyle change. I’ve heard that before, especially when it comes to exercise and prostate cancer.

Dr. Rob Newton told me that cancer patients tend to be more motivated than cardiovascular disease patients, for example. (See Prostatepedia December 2017.)

Dr. Victorson: Right.

What will you be doing in this particular trial? Why mindfulness education in an active surveillance population?

Dr. Victorson: We are comparing our eight-week mindfulness intervention with a matched attention control program. We anticipate that the attention control program is also going to lead to positive health changes, but we hypothesize it will be different than the mindfulness program.

This is a blinded trial, and men and their partners won’t know what group they’ll be put into outside of the fact that it’s a health promotion intervention. This can be challenging for recruitment when you don’t know what you’re signing up for.

All the men will know is that we are testing two different health promotion and wellness interventions that have been shown to be good for men with prostate cancer. That’s about as far as we go.

Most people who sign up really like it, but they don’t even know that they’re signing up for a mindfulness intervention. We’re not trying to deceive anyone, but we need it to be blinded like this to increase the rigor of our results.

Why mindfulness? As we’re doing a better job of prostate cancer screening, we’re finding more indolent or lower grade prostate cancers. Many of these cancers don’t need to be surgically removed or radiated. Active surveillance is becoming a more possible management paradigm. We know that trend is only going to continue.

Many patients are happy with active surveillance. But there are others who, because of how they grew up or because of what cancer means to them, equate cancer with death. When they’re told they have a tumor, they just want it out.

We’re dealing a specific demographic. Older men might be used to the idea of just wanting to get the situation fixed. That’s how they may cope. We’re also dealing with a treatment culture in which active surveillance hasn’t totally caught on. There are still quite a few urologists who recommend what they were trained to recommend: surgery or radiation even for a very low-grade tumor.

There is a certain type of man who will leave active surveillance after one to three years for definitive therapy even when it may not be medically warranted. This shift may be more connected to them wanting peace of mind and just wanting the cancer out.

I always try to say to patients, “If that’s what it’s going to take for you to get peace of mind, more power to you. You know better than me. I don’t have prostate cancer.” But at the same time, as a health psychologist involved in behavioral medicine, I know that there are other ways to help men manage their anxiety than through surgery.

Therefore, we’re exploring which behavioral approaches can be delivered to keep men on active surveillance longer when it is medically warranted. If their physicians say that they can stay on active surveillance longer, we try to support that. You’re hoping that with mindfulness meditation you’ll be able to help men stay on active surveillance longer.

Could mindfulness ultimately be a routine part of active surveillance programs?

Dr. Victorson: Yes. That is the 30-year career goal. We’re not going to be able to answer that question from this five-year trial, though. One of the biggest indicators of peace-of-mind-related departure from active surveillance is uncertainty intolerance and fear of progression. Those two things can form a powerful cocktail that might drive a man to leave active surveillance prematurely. Some men are able to tolerate uncertainty and fear of progression more than others.

We know that mindfulness training can be very useful in helping someone learn to tolerate uncertainty to a greater extent. We can help build that muscle, if you will, in tolerating uncertainties and with sitting with the discomfort of not having your tumor taken out. We are looking at mindfulness training to help reduce fear of progression and increase tolerance to uncertainty. We think those are two important mechanisms toward this goal.

The psycho-educational health promotion group of men and their partners will learn how to integrate positive health behaviors into their lifestyles—things like eating more vegetables, getting more physical activity, and being more aware of their patterns and behaviors. The program doesn’t have anything to do with mindfulness, regulating emotion, or tolerating uncertainty.

Learn more about Dr. Victorson’s clinical trial.