Diet + Lifestyle

In December, Prostatepedia is talking about diet, lifestyle, and prostate cancer.

Dr. Charles E. Myers, Jr. talks about the conversations we’re featuring this month.

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Well-designed randomized controlled clinical trials are the best tool we have for determining these optimal treatment for diseases. Unfortunately, we don’t yet have trials like for the impact of diet and exercise on prostate cancer, but we do have them for exercise and diet’s impact on general health and cardiovascular disease.

In the famous PREDIMED trial, 7,447 subjects who were at high risk for cardiovascular disease but who did not have it were randomized into three groups. One group went on a low fat diet. The other two groups went on a Mediterranean diet: one with olive oil and one with nuts. The trial was supposed to run for 6 years, but stopped at 4.8 years because the two Mediterranean diet groups already showed such a significant reduction in myocardial infarction, stroke, and cardiovascular death.

The Mediterranean diet also reduced the risk of peripheral artery disease, atrial fibrillation, and invasive breast cancer. There was no information about prostate cancer incidence in any of the three groups.

This month, Rob Newton discusses his Movember-funded GAP4 trial testing exercise’s impact on progression-free survival in advanced prostate cancer patients. This randomized controlled trial looks at 890 patients. This trial is exciting: it breaks important new ground in adequately testing lifestyle changes’ impact on key endpoints in prostate cancer treatment. Randomized controlled trial design requires an assessment of the likely impact of the experimental treatment on the outcome of the trial. If the likely benefit is 10%, many more subjects are required than if the benefit is 50%.

This month, Drs. David Levy and Stephen Freedland outline trials that are so designed that they might allow for subsequent randomized trials. Note that the nonprofit Movember financially supports the GAP4 trial. Currently, government funding for such trials is painfully inadequate. The United States was for many years a major source of funding for cancer clinical trials through the National Institute of Health (NIH). But the current political climate in the United States has become definitely anti-science. As a result, an increasing proportion of clinical trials are funded by the pharmaceutical industry as a path to FDA-approval. This has had a positive impact in that we now have a growing list of drugs approved for prostate cancer.

However, pharmaceutical companies have a responsibility to their shareholders to maximize profit. There is no reason for these firms to spend the large sums needed to test the impact of something like diet and exercise. This leaves philanthropy as the only source of support for these large randomized trials. We all need to keep this in mind.

We do now know that your general health and survival benefit from exercise, a prudent diet, maintaining a healthy weight, not smoking, and stress reduction. Existing data support the importance of diet and lifestyle changes in prostate cancer management, but we lack proof provided by high quality randomized trials.

The bottom line is that altering your diet and lifestyle can definitely improve your general health, but may or may not help control your prostate cancer.

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Movember: Social Media + Fundraising

Dr. L. Michael Glodé, recently retired as the Robert Rifkin Chair for Prostate Cancer Research and is Professor Emeritus of Medical Oncology at the University of Colorado in Denver, and has been a pioneer in prostate cancer medical oncology. He is also the author of the popular Prost8blog.

Prostatepedia spoke with him about his approach to the Movember Foundation’s annual moustache-growing campaign.

How did you become involved with Movember?

Dr. Glode: I first found out about Movember at one of the Prostate Cancer Foundation (PCF) meetings several years ago. I met one of their leaders, Paul Villanti. Over the years, I met up with Paul at various prostate cancer meetings. Eventually, we had him come out to Colorado to talk about some of Movember’s initiatives and how we could be involved.

What has been your fundraising strategy? What has worked? What hasn’t?

Dr. Glode: The first time I noticed that prostate cancer was beginning to see some public visibility was back in the 1990s when Michael Milken began PCF. I had Komen-envy, because the breast cancer population had done so well in terms of raising visibility and money. There was just nothing like that in prostate cancer until Milken started his work. With his leadership, a lot more people became interested in medical oncology and prostate cancer.

The Movember movement struck me when I heard about it. They started about 10 years ago and were ahead of the curve. They were raising way more money from the general public than had ever been done before, and along with that, raising visibility. I eventually watched one of the TED talks that had to do with them. I thought this is definitely the organization to get behind if you want to do what women have done for breast cancer through the Komen Foundation.

I didn’t do much fundraising at the time. I started growing a mustache every November and talking to my patients about it. Then I started my own blog, which has about 600 followers by now. Facebook and social media came along after that and I reached out to my followers.

Most of the time, friends, family, and a few patients have donated, but occasionally, somebody feels motivated and donates a large sum. In one case, a patient saw my mustache, was interested, and gave a very substantial donation to Movember, which was certainly gratifying.

In the academic world, we have some ambivalence about national organizations versus local initiatives. Over the years, I’ve been the beneficiary of wonderful support from patients who’ve donated lots of money to the University of Colorado. That kind of fundraising is a part of what you do in academics.

But it’s been fun to get involved with a global movement that more closely resembled the Komen Foundation and to be able to watch the fun of growing a moustache and seeing how much money we raise globally. I was very attracted to their combination of raising awareness of prostate cancer and men’s health in a fun way.

What has been your strategy for activating people in your community?

Dr. Glode: I’m growing a moustache, and I usually print up little business cards saying “Please support my moustache,” with a link so they can make a contribution to Movember. I give them to the patients I see during the month of November.

The University of Colorado has a Movember team. We’ve reached out with an email blast to encourage people to join our fundraising team. A lot of the guys are running around the med school with moustaches on. All that works to the good.

One strategy that’s a nascent idea this year is a collaboration with the owner of this hipster barbershop here in Denver called Crisp. It’s a combined barbershop-tattoo parlor. The guys in there had a sign display for Movember a couple years ago. I met with the owner of that shop who’s a very entrepreneurial guy. We’ve been discussing ways we could join doctors and barbers, that ancient path of how barbers were the first surgeons. Everybody in his shop is covered with tattoos and piercings while my colleagues at the university are straight arrow, white coat types. We thought it would be sort of fun.

We’re going to have a combined event at the end of November to get people together and celebrate. Eventually, it would be fun to have the barbers and doctors together on the local TV station to raise awareness. We’re working some of those angles to do what we can to raise awareness.

It’s terrific to try and find ways to get men talking about something other than the miserable quarterback performance on Sunday afternoon.

This particular barbershop is a younger group of people. They have a fairly large Hispanic clientele as well. That’s going to be kind of a fun way to reach some new people with information and awareness. The fact that it’s not just about prostate cancer, but also testicular cancer, suicide prevention, and all that is also wonderful.

Movember takes very serious issues like suicide prevention and prostate cancer and raises awareness with lighthearted and fun things like growing a mustache.

Dr. Glode: Absolutely. That was the spirit in which they started things. When you read about how they all got started, it was just a couple guys in Australia deciding to grow a mustache. It wasn’t until the following year that they said, “This was a fun thing to do. Maybe we could make it into something that would be meaningful in terms of raising money.” It is very organic. It grew from a few guys in a bar to an international movement, which is remarkable.

They started by encouraging guys to take a picture of their mustaches and sharing it through social media.

Dr. Glode: I have to admit that the social media wave just passed me by when I wasn’t looking.

You have a blog. That’s social media.

Dr. Glode: That’s about as far as I got. I was very involved with helping the American Society of Clinical Oncology (ASCO) get started with their first internet presence. I thought up the ASCO online project when I was chairman of the Education Committee about 25 years ago. Back then people said, “My kid could set up a web page in his garage. Why are you asking us for money to get this started?” Now, of course, it’s grown. As with every other organization, your web presence and what you do on the internet is essentially who you are.

Right. It’s your brand presence.

Dr. Glode: I’ve got a Twitter account, but I never use it. I have a Facebook account primarily to keep up with my grandchildren’s pictures and that sort of stuff. I’m 70 this year, and I keep track of some of my high school friends through that. There are people in my high school cohort who must spend hours every day on Facebook. It’s amazing.

I guess if you’re socially or physically isolated it might be a way to connect with people.

Dr. Glode: Yes. It’s very meaningful. Its power is phenomenal.

You mentioned the association between Movember and the Prostate Cancer Foundation early on. Originally, Movember donated all the money to nonprofits in each country. As a fundraiser, are you familiar with where the money goes or how it’s spent?

Dr. Glode: I’m not so familiar how the money is spent. I do know that as an example, the Prostate Cancer Foundation (PCF) has become international. Movember and PCF have aligned goals when it comes to prostate cancer. PCF is instrumental in sponsoring and underwriting some of the best researchers in the world, getting them together at meetings every year.

Movember tends to sponsor projects and spend the money in the same country as the money was raised.

In terms of project management, one of our faculty members has a grant from Movember for TrueNTH, a Movember initiative, and I’ve been asked to be an advisor.

TrueNTH has 10 or 12 pilot projects that they’re working on to see what works and what doesn’t work in terms of using internet capabilities to reach out to people who might be more isolated. They’re looking to provide online counseling in the same way that people talk about couples counseling. They also want to ensure support group-type functions via the internet for people in more isolated communities. It’s a work-in-progress. We have to see how well these various projects pan out in terms of actually reaching the target population.

My experience has been that it’s a pretty small fraction of men who take advantage of support groups. There are usually one or two guys who are the sparkplugs who will start a support group, organize a place to get together once a month with an outside speaker. For example, in Denver there are usually about 10 to 20 men who come. They’re very interested in the latest research findings. My blog goes a long way to help them feel like they’re keeping up.

There is also some advantage in just being able to get together. I don’t think that men generally have the sense of openness that women do in talking about their experiences. That’s just a gender difference. I’m not sure that the internet, or other means of trying to break through that silence, is going to be terribly successful.

If people activate themselves and grow a mustache and talk to their families about it, that’s a great starting point.

A lot of men have first-degree relatives—their sons, their fathers, their uncles, or their brothers—with prostate cancer, but they don’t talk about it at the Thanksgiving table. Getting over that barrier is a great place to start for growing a mustache. You can say, I’m a prostate cancer survivor and prostate cancer is something I really care about. I’m supporting Movember. I encourage you to support my mustache.

It is a way of bringing the topic out into the public discourse.

Dr. Glode: And it’s fun. The fact that Movember has expanded their bucket of interest to include suicide prevention and testicular cancer makes it that much more meaningful.

While we each may only know one or two people who have committed suicide, I’m pretty sure we all know many more who have considered it or who have been depressed in a quiet way.

Dr. Glode: Yes. Men’s overall health is important. Prostate cancer may be the initial discussion, but everybody should know their blood pressure and their cholesterol. Everybody should get off the couch and do more exercise.

I have a terrible moustache myself. My beard is even worse. My experience proves that growing a moustache initiates conversation all the time. Now people are connecting that with Movember.

It gives me the chance to say you should grow your own moustache and try to raise money like me because this is a really great organization and a really great way to contribute to men’s health. I encourage you to grow your own moustache and get your friends and neighbors to support it. It’s a nice conversation starter. It really works pretty well.

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Women + Movember

Heather Mott is one of the Movember Foundation’s top fundraisers.

Prostatepedia spoke with her about raising money for men’s health.

How did you become involved with Movember?

Ms. Mott: This is my sixth year participating as a Mo Sista and raising funds for the cause. I don’t remember exactly how I heard about it, but I think it was through social media. It sounded interesting and fun and it benefits men’s health, so I started doing it.

When I started, Movember was more focused on prostate and testicular cancers, but now they’ve branched out into mental health awareness and healthy lifestyle activities.

How can a woman participate?

Ms. Mott: It is easy to get involved – all you have to do is sign up on their website. I try to do a different photo every day of the month. Since I am genetically-challenged to grow my own mustache, I usually order fake moustaches and take some selfies. Sometimes friends help me.

I’ve tried doing themes with some common factor across the different photos. For example, my theme for this year’s Movember campaign is photos of individuals in a role that serves the community. Today, I posted a photo with a Navy backdrop, thanking all those who serve or have served in the Navy. I’ve posted backgrounds with other public servants like teachers, those in the justice system, or first responders.

What kind of themes have you used in the past?

Ms. Mott: One year I had the different individuals from the Village People who sing the YMCA song. I had a cop, a construction worker, and all that. There hasn’t been a real rhyme or reason to the themes, just whatever strikes me that year.

How do you get people to join your team?

Ms. Mott: When I started, I didn’t join a team. Then the next year my company, Johnson & Johnson (I’m at the Los Angeles Neutrogena facility) started a team. I joined them and this is our fifth year. We have new people each year and some reoccurring partners. We do a lot of recruiting onsite and there is some friendly competition. We have all kinds of events over the course of the month.

Has your involvement in Movember had an impact on your community?

I started with Movember because I thought it was an interesting way to raise awareness and help fund research. Then, about three years ago, my father was diagnosed with prostate cancer. Thanks in part to Movember awareness, he caught it so early that he was able to do active monitoring for a year. There wasn’t enough cancer to treat.

Last year, he went through treatment. Because he caught it so early, he went through a program called CyberKnife. He has had hardly any side effects, no pain, nausea, nothing that people tend to associate with cancer treatment.

My involvement in Movember impacted me personally and made a big difference in my father’s life.

Would he have waited to be screened if you hadn’t been involved with Movember?

Ms. Mott: He’s been a pretty healthy and health-conscious individual throughout his life, so he is pretty diligent about getting his annual checkups. Once he got to a certain age and was a little bit more aware, it definitely helped him. It helped him network, understand treatment options, and talk to others about it. I know that that’s something Movember is big on, raising awareness. There are networks out there to help you when you find out you have cancer. He was nervous at first, so it definitely helped him get through all of it. It helped him be conscious that it’s important to get these checkups, especially at a certain age.

Does he participate in Movember along with you?

Ms. Mott: He is a very active supporter, but he doesn’t have his own Mo Space or anything like that.

You should set him up.

Ms. Mott: [laughs] I know. He’s always had facial hair.

He was already growing the moustache?

Ms. Mott: Yes. He was growing long before.

Do you have any thoughts for men or women who want to fundraise for Movember?

Ms. Mott: I would love to see even more Mo Sistas, because we all have men we love in our lives. I became aware of Movember through social media, so I’m always posting through my social media platforms.

But I’ve also done some bake sales at a community brewery and I worked with local businesses to get the word out.

Is it worth trying to get your company or place of work to organize a team?

Ms. Mott: Yes. I work at a large company, so a lot of individuals here care about health. That has made it easier for us to have a team each year.

Last year, our goal was to raise $10,000; we raised about $13,750. It does help partially that I work with a large company, but this is something anybody can get behind.

We all know at least one man who’s at least had a scare, right?

Ms. Mott: Yes.

Does your team have events throughout the month, or is it mainly just about getting together and raising as much money as you can?

Ms. Mott: We have events. I’m co-leading our team here onsite this year. We have a Shave Off kick-off each year where all of the guys signed up come, and since we make men’s care products, they do a shave off together.

We then host different fundraising activities. This year we have a lot of healthy activity initiatives at Johnson & Johnson. We’re doing some yoga and a Ping-Pong competition. People can buy-in to donate to the team; there will be some prizes at the end of the tournament.

We do different activities each year to keep it fun, engaging, and to generate funds. Johnson & Johnson has a culture of supporting these types activities and there are other ways for companies to help. Companies often match donations.

Any last thoughts for men who might want to participate?

Ms. Mott: It’s so easy to sign up and get involved. It’s such a fun activity. Movember is a very engaging group. Their United States headquarters is in Culver City, CA—right next to us.

It’s a great way for men to touch base in a less formal environment, and it definitely builds a network, so that should you get diagnosed, you have others who understand, can offer support, and who have maybe been through it themselves.

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Facebook + Movember

 

Andrew Hahn is one of the Movember Foundation’s top fundraisers.

Prostatepedia spoke to him about how he uses Facebook in the annual moustache-growing campaign that is raising funds for men’s health .

How did you become involved with Movember?

Andrew Hahn: I knew a few people nine years ago who were growing moustaches. They looked silly, but it started a conversation about something that, at the age of 32, I wasn’t used to talking about: prostate and testicular cancer. I wanted to learn more about the movement and why they were doing it. My father, unfortunately, passed away from cancer when I was 24.

I’m so sorry. That’s so young.

Mr. Hahn: Thank you. He had a moustache his entire life. Even though he passed away from brain cancer, here was an amazing opportunity for me to connect with my dad and raise some important funds and to help people not go through what I went through.

I’ve been very fortunate: I’ve built teams and have raised over $150,000 in the last seven or eight years.

What is your fundraising strategy?

Mr. Hahn: Any charity or fundraising is important and phenomenal. Three out of four of us have someone who has been affected by cancer. You have friends who walk a 5K for breast cancer. That’s amazing. But you really get some empathy for growing a moustache for 30 days. It’s not just a Sunday morning.

I’ve never asked anyone for donations. I’m very proud of that. I’ve backhandedly guilted them into it.

Traditionally, I send out an email in late October. Sometimes I make a video, tell people what I’m doing, and talk about the mission to benefit all men and stop them dying too young.

I do a ton of social media posting. Anytime someone donates, I thank them, hyperlink them on Facebook, and say, “Thank you, Erin. Your contribution is amazing. If anyone wants to be as cool as Erin…” I do cool pictures.

Even though I haven’t asked them directly, everyone on social media just sees it going on. They see how long a month actually is. I take pictures of my moustache, and my family, and the people who donate. I wouldn’t say it’s easy. It’s actually a lot of work. It usually takes about 80-100 hours per Movember campaign.

Just in terms of the social media posting and curating?

Mr. Hahn: The social media is one part. I put a huge team together within a company and we advertise and market together. We got approval from the company to design T-shirts so anytime someone donated $50 or more, they got a T-shirt. Then all of a sudden, people were wearing T-shirts around the office and others were asking, “What did you get that t-shirt for?” It’s a lot of work.

You must work closely with your company then?

Mr. Hahn: Yes, with my former company. It was great press for them because one year we raised over $50,000. Being a large tech company, it was just a great thing for them to brag about.

Most large companies have some kind of philanthropy branch, don’t they?

Mr. Hahn: Exactly. My buddy justdonated yesterday. He works with Google and they matched his contribution dollar for dollar, which is pretty awesome.

Do you have any thoughts for men who want to participate?

Mr. Hahn: I’m going on 41 this year. I see huge stigmas about men going to the doctor, being proactive, and—let’s be candid—guys don’t want a finger up their ass. There’s this saying: if you think a finger up your butt once a year is painful, God forbid you have to get that done every day while dealing with prostate cancer.

Early detection, prevention, and awareness are the only fights we have. The money that we’re raising and the cause we’re helping isn’t for a cure; it’s for early prevention, awareness, discussion, and those type of things.

Screening.

Mr. Hahn: Exactly.

What about the mental health piece? Because that has come into play in the last few years for Movember.

Mr. Hahn: As you know, three out of four suicides are men. My wife’s dad, unfortunately, committed suicide. She’s Asian, and in her culture, they’re even quieter about talking about mental health.

I had a buddy who I wouldn’t say was suicidal, but he was really down from being out of work and being a dad. My awareness was not only to have conversations with him, but to also ask how he was doing and to take it deeper. “How are you feeling? What’s your plan?” Saying “You can come to me for anything,” is something I probably wouldn’t have been as comfortable doing without Movember. It challenges your manhood. You don’t have a job. Your wife’s on you. It’s a great campaign to have in parallel for that reason.

What you’re saying is the awareness campaigns encourage men to reach out to those who are suffering, and not just for men who are suffering to reach out to others?

Mr. Hahn: Yeah. This is one of my best friends, but guys are bros. We golf, we drink, we talk about fantasy sports. We don’t really talk about our feelings. Traditionally, I would’ve said, “Hey man, how are you doing?” He’d say, “Oh, I’m okay. It’s okay.” I’d think, “You’ll be fine. You’re strong.” Then we’d talk about beer again.

The elevated comfort zone and awareness enabled and empowered me to be more aware, to have a larger conversation about his overall health, his well-being, and his plan. He knew that if it was two in the morning, he could call me and I’d be there for him. It’s just a verbal hug.

The Movember movement seems to be a cultural phenomenon, at least from the outside.

Mr. Hahn: It is. There are so many guys who grow moustaches, some for Movember, and some because it’s a hipster thing to do in November.

Are we upset when someone grows a mustache and doesn’t raise money? As long as it starts a conversation, it’s okay.

I’m in sales and I’m client-facing all the time. I used to be afraid that if I had a moustache, people would look at me funny. Now, I walk into a room and I point out, “Hey, I know I look silly. I’m doing this for Movember to raise money for awareness.” It changes the entire dynamic of the conversation. I go from being a salesperson to a human starting a conversation.

It really is a phenomenon. Two-thirds of the people who donate to me are not good friends. They’re people that I went to high school with, or people that I worked with 10 years ago. The common theme is they’ve been affected by cancer. The average donation I get is probably about $80. I am blown away by that.

I would have thought $20 or $30.

Hahn: No. I got $180 donation yesterday from someone I haven’t seen or spoke to in years. I get a $1,000 donation each year from someone who I see less than once a year. These are people who have been affected and want to do something. They know Movember is a great organization.

You said you spend a lot of time on social media. Are there certain channels that you favor over others, say Facebook versus Instagram?

Mr. Hahn: I do Facebook to thank people more than Instagram. I was a little late to Instagram. On Facebook I have 1,000 friends while on Instagram I have about 200. I just have a greater reach and impact on Facebook.

I use the Movember filter where it says, “Thank you for your donation.” The great thing about those posts is not only am I thanking them and creating awareness, it also makes them feel good, and all their friends know that they give. It’s a win-win-win.

Positive reinforcement?

Mr. Hahn: Well, it is. And it candidly pokes at your other friends who haven’t donated. Of my 20 best friends, I think only three of them donate to Movember. The people who tend to donate are those who have been impacted and affected.

Most of us have at least one man in our family who has experienced depression if not prostate cancer itself. If you combine both of those things together, that’s quite a lot of men impacted.

Mr. Hahn: Exactly. Movember is still known for prostate and testicular cancer awareness. The suicide prevention is a new initiative that most people don’t associate with Movemeber.

I wonder if people view Movember as a prostate cancer nonprofit or just a men’s health group.

Mr. Hahn: I think they view Movember as men’s health and something related to cancer at this point, but like I said, men don’t go to the doctor and men don’t talk about their feelings.

That may be changing as men come of age in the social media era.

Mr. Hahn: It will change. If 20% of guys are comfortable talking now, maybe it’ll rise to 30% or 40%. I see my friends so infrequently because I have a family and a job, so when I see them, I really just want to talk about sports, beer, and golf, even if something’s really weighing on me.

In my experience, when I tell someone what’s going wrong, they’re apathetic. They’ll ask a question, but I don’t think the dialogue continues with men. They ask if you’re okay, and then they take it one level deeper, but your friends aren’t trying to be your therapist. Part of the mental awareness is making men feel okay to talk to someone professional.

Any last thoughts for men who want to participate or who are already participating but want to increase their reach?

Mr. Hahn: When people are on the fence, unsure of whether or not they want to participate, I have one great tool to encourage people to participate. I tell them: Just start growing out your beard for a week. Bring it down to a mustache, and I promise you, a week into it, you’re going to be so into it and love it. I would say 10 out of 10 people that start on the fence end up actually growing out the Mo.

Money is great, but conversations can be great, too. If they have one conversation a day about why they have a mustache, they’re raising awareness and education and a level of comfort. Like I said, almost equally important to raising money is raising awareness and starting those conversations.

What about getting women to participate?

Mr, Hahn: I’m so glad you brought that up because at my former company, over 40% of the donations were brought in by Mo Sistas. Obviously, they can’t grow a mustache, but it impacts their husbands, brothers, boyfriends, sons and dads, so it’s equally important to them. They can take pictures with funny, fake mustaches. Sometimes we would combine a Mo Bro and a Mo Sis and they would rally together.

The joke I make to my single friends is that 9 out of 10 girls do not like mustaches, but that one girl really likes mustaches. When I was single and had a mustache, I had a little fun.

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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.

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.

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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Robotic Prostate Cancer Surgery After Focal Therapy

Dr. Paul Cathcart is a consultant urological surgeon at Guy’s Hospital and St. Thomas’ Hospital in London.

Prostatepedia spoke with him about a clinical trial he’s running that looks at robotic surgery in men whose prostate cancers have come back after focal therapy.

Why did you become a doctor?

Dr. Paul Cathcart: I always liked science; that was my favorite subject. I was thinking about whether to become a vet or a doctor and did lots of school visits. During one of those visits, I met an inspirational character, a surgeon. I spent some time with him, following him around hospital wards and clinics. I thought that he was the sort of person I would like to be: he does the job I’d like to do. I think that’s often the case in life: you meet some inspirational figure who pushes you along one line.

Later on, another inspirational figure who came into my life was a urologist. I was originally going to be a colorectal surgeon. Everything was set for that. Then I met this urologist who showed me the different mix there is in urology, which I found interesting. Then I met Dr. Mark Emberton; I was his research fellow for many years. He’s quite an inspirational person as well. I’ve been working with him for 17 years now on various things.

What is the thinking behind your trial on robotic surgery after focal ablation?

Dr. Cathcart: Focal therapy is a new concept, which Dr. Emberton and one or two other people have pioneered to reduce the side effects and morbidity of prostate cancer treatment. Unfortunately, a proportion of these patients will experience recurrent disease after focal therapy. No cancer treatment is 100% effective. A couple of these focal therapy patients were recurring three or four years after starting the focal therapy program.

No urologist wanted to operate on these patients because they felt that it would be an extremely difficult surgery. In fact, urologists were only offering exenterations to remove the patients’ prostate, bladder, etc.

I got to know quite a few of these patients. (I do a lot of post-radiotherapy surgery, as well.) I decided that this procedure called salvage surgery interested me. We thought that we could do this salvage surgery and maintain good outcomes for our patients because only part of their prostate had been treated during focal therapy. We thought that the side effects of the surgery after focal therapy would actually be a lot less than after radiation, but we needed evidence to prove it. That is why we set up the trial.

We’re also interested in learning why some patients may fail focal therapy. What is it about their disease that leads it to recur? If we can understand why some patients may fail focal therapy, this can help us select up front which patients should have focal therapy and which should not.

What can patients expect to happen during the trial?

Dr. Cathcart: We are halfway through the study at the moment.

Of course, patients undergo a salvage prostatectomy. We take the tissue to be analyzed and look for various genetic markers to see why their cancer may have returned.

This is also a toxicity and side effect study. We have patient-reported outcome measures at baseline and sequentially thereafter. There are a number of blood tests looking at hormone profiles before and after the surgery.

We follow patients for about 12 months after those sequential patient-reported outcome measures; we’re looking to chart that toxicity.

I’ve taken out more prostates after focal therapy than most because of my link with Dr. Emberton. We’re now demonstrating the feasibility and toxicity of salvage focal surgery and trying to understand why these tumors have recurred.

Are you still recruiting patients?

Dr. Cathcart: About 20 patients have undergone the surgery. We’re recruiting 20 more. We haven’t had any adverse events. We were worried about things like rectal injuries, because the rectum can stick to the prostate after focal therapy. We haven’t had any of those.

We’ve actually had a fantastic continence outcome. The prostate cancer community said everyone would be incontinent and impotent, but all our patients so far have been continent.

We’ve got the patient-reported outcome measures to demonstrate it.

The potency rates are taking a little bit longer to return to baseline. The outcomes from potency won’t be as good as the continence outcomes. We haven’t had any side effects at the time of surgery. No complications or anything, so we’re delighted with the way things have gone.

Does the fact that the man has had focal therapy make the potency issues worse?

Dr. Cathcart: It depends on the location of their focal treatment. In those with anterior tumors (tumors away from the neurovascular bundles), we’ve noticed potency returns faster. If they’ve had an ablation on the peripheral zone, near where one of the nerve bundles is located, potency returns more slowly.

We’re also noticing a difference between different treatments. You can give focal therapy with high-intensity focused ultrasound (HIFU), cryotherapy, or something called electroporation. The different energy sources have different effects on the structures surrounding the prostate and a different impact on the chance of potency returning. Electroporation seems to be very precise and leaves the least amount of collateral damage. In those patients, potency returns faster. Cryotherapy creates more periprostatic fibrosis and scarring; potency takes slightly longer for those patients to return. Potency return for HIFU patients falls somewhere in the middle of the modalities.

I’ve also taken out prostates after photodynamic therapy. Photodynamic therapy is better relative to preserving the tissue planes, but it does depend on which part of the prostate has been ablated in the first place.

Is there anything else you think patients should know about your trial?

Dr. Cathcart: We’re going to get a great understanding of why these patients in particular failed focal therapy. The genetic markers and the locations of the tumors will inform which patients are suitable for focal therapy from the beginning. There may be parts of the prostate, or particular types of tumors or genetic markers, which will identify patients best suited to a whole-gland approach such as a radical prostatectomy up front.

It’s not just about the location and grade of the tumor, but also about the tumor’s genetic signature, which may predispose a particular tumor to being better suited for focal therapy.

It’s interesting, in some patients you knock out one tumor say on the right-hand side and that’s it, the tumor never comes back. Other patients’ prostates seem somewhat unstable and have multiple tumors that keep appearing throughout the prostate. I’m sure there is a genetic basis to it.

Because we’re taking out these patients’ prostates, we can analyze all the different tumors. Some people even think that by treating part of the prostate we may be changing the genetics of that tumor—i.e., it gets angrier. I don’t think that’s the case. This study will help prove that point. We’re also going to open up a comparative arm of the study very soon for patients who have had whole-gland radiation or ablation techniques—open to anyone who has had the whole of their prostate treated with brachytherapy, radiotherapy, HIFU, or cryotherapy. We’ve been finding that patients who have had surgery following focal therapy have better outcomes than those who have had whole-gland therapy up front. We’re going to recruit into that second arm to demonstrate that surgery after focal therapy has a better outcome.

Can non-UK residents come to you for surgery?

I’ve got a clinic called the Recurrent Prostate Cancer Clinic. I have a reasonable number of patients who come from the United States. They normally come to Dr. Emberton for focal therapy, then if they develop recurrent disease, I operate on them. A lot of urologists wouldn’t operate on these patients. Certainly, in the United States, hardly anyone operates on post HIFU patients simply because HIFU has not been available until very recently.

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Imaging + Salvage Focal Therapy

Dr. R. Jeffrey Karnes is an Associate Professor and Vice Chair of the Urology Department at the Mayo Clinic in Rochester, Minnesota.

Prostatepedia spoke with him about how imaging impacts salvage focal therapy.

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How does newer imaging like gallium-68 PSMA PET/CT impact salvage focal therapy?

Dr. Karnes: PET imaging has been good at detecting metastases, but in terms of imaging the primary tumor, the resolution hasn’t been the best. Now, we and others are moving into a PET/MRI scan.

That is a fusion scan?

Dr. Karnes: A fusion scan with MRI rather than the PET/CT. Obviously, an MRI provides more resolution of the prostate. To me, MRI is obviously the gold standard when it comes to imaging the primary prostate. We’re certainly using the technology. Others are using it. We don’t really know what the exact accuracy is of the MRI/PET fusion scan in those who have had radiation failure.

And, as I mentioned, I don’t think we have really much in the way of a clue regarding the biology of this index lesion in radiation-recurrent cancer in the prostate. I think that in the glands of men who recur after radiation, there is probably higher tumor burden compared to the newly diagnosed patient.

A third problem we have when it comes to focal salvage therapy is that I don’t think we even have a great definition of what constitutes a potential local recurrence after primary radiation. The Phoenix definition used by the American Society for Radiation Oncology is the nadir (or lowest) PSA plus 2. This definition predicts recurrence, but what it really predicts is progression, not necessarily local recurrent disease.

In this country, for many men who fail radiation, the next treatment is hormonal therapy. Hormonal therapy really has only a palliative intent and won’t cure anyone of localized radiation-recurrent disease.

We need to do a better job of appropriately diagnosing radiation failure patients in the first place. What that better job would be, I don’t know. I don’t think routine biopsies, which have been looked at in the past, are the answer. But perhaps imaging sooner rather than waiting for the Phoenix definition makes sense. Maybe, as you mentioned appropriately, with the newer PET/MRI fusion scans, we can image men sooner to try to detect a local recurrent disease earlier.

That being said, I do a lot of salvage radical prostatectomies, almost one a week. This is unpublished, but I have not seen a big stage migration (less extraprostatic extension and/or nodal metastasis) in the last decade. I still see a lot of patients with radiation failure; they come to their salvage prostatectomy with seminal vesicle invasion and nodal disease. Up to a third of patients will have seminal vesicle invasion and I see nodal involvement in up to 20% at salvage surgery.

Why is that relevant to salvage focal therapy?

Dr. Karnes: A lot of the seminal vesicle invasion is not always evident on MRI. And a lot of these patients don’t get routine biopsies of their seminal vesicles. If they undergo a salvage focal therapy, their doctors are obviously going to be missing a significant component of their disease because salvage focal therapy, in my opinion, doesn’t work to ablate the seminal vesicles. Obviously, salvage focal therapy can do a job in the gland itself, but in the appendages, such as seminal vesicles, it is hard to get an appropriate ablation of the entire seminal vesicles because of the risk to adjacent structures— the bladder, the ureters, and so forth.

Another thought I have about salvage focal therapy is when we look at other forms of ablation technologies like cryotherapy or HIFU, we’ve morphed them from whole-gland to focal and now to focal salvage therapies. But I don’t think we even know who the ideal candidate is for whole-gland HIFU or whole-gland cryotherapy let alone the focal form of the therapies in a treatment-naïve patient. Obviously, these are alternatives or options for patients who are newly diagnosed, but more troubling for me is this: I don’t think we know exactly what constitutes a success. How do we monitor whole-gland cryotherapy or whole-gland HIFU? We’ve used PSA failure as a definition, but are we really using the right tool to monitor?

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Salvage Focal Therapy

Dr. R. Jeffrey Karnes is an Associate Professor and Vice Chair of the Urology Department at the Mayo Clinic in Rochester, Minnesota.

Prostatepedia spoke with him about salvage focal therapy for recurrent prostate cancer.

Subscribe to read our November issue on focal therapy.

What is focal therapy?

Dr. Karnes: Focal therapy is partial treatment of the prostate gland as opposed to whole-gland treatment (i.e., radical prostatectomy, brachytherapy, and photon or proton radiation therapy).

How did focal therapy even become in vogue? To abate some of the potential side effects of whole-gland treatment. It is exciting and promising, yet remains investigational.

Isn’t a focal approach common in other kinds of cancers?

Dr. Karnes: It can be. The most common is probably breast cancer. I’m far from an expert in breast cancer, but recurrence rates can be higher with focal therapy, meaning a lumpectomy or quadrantectomy, where a quadrant of the breast is removed. But, the survival has been similar between partial- vs. whole-breast treatment.

Why not the prostate? I would say that focal therapy, in general, hasn’t risen to the forefront in the United States or internationally. There are a couple of limitations for focal therapy in general:

1) What do we know about prostate imaging? Prostate cancer is known to be a multifocal cancer within the prostate. The multiparametric MRI is good. It’s not perfect. But even if we can identify a small focus of intermediate-grade prostate cancer, are we certain that is truly the disease to treat, as opposed to some scattered higher-grade cancer that may not be showing up on MRI, but hopefully might get picked up on a whole-gland biopsy done along with a targeted biopsy? I think we’re getting to the point where an MRI is pretty good at imaging the entire prostate.

2) We still have a second unresolved issue of what constitutes the biological index lesion of the cancer. If we do have multifocality, are we sure exactly which focus to treat? Even some of the well-known researchers in focal therapy (focal cryotherapy, high-intensity focused ultrasound [HIFU]) can still have patients with a fairly high recurrence, or persistence of the cancer after the partial or focal therapy about 20% of the time.

What is salvage focal therapy?

Dr. Karnes: Focal salvage therapy is focal therapy done when a man recurs after primary treatment. There is more at risk with focal salvage therapy. What do I mean by more at risk? Obviously, salvage therapy means that there has already been a primary treatment that has failed, so there is even more impetus to get it right the second time around. For that second time around, if we go back to those two items that I mentioned above (imaging and the biology of the index lesion), there has not been, to my mind, enough research into MRI imaging of recurrent prostate cancer. More research needs to be done into the MRI performance accuracy after a radiation.

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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.

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.

Sounds 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.

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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