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Exercise Programs For Prostate Cancer

Professor Rob Newton is the Associate Dean of Medical and Exercise Sciences and the Co-Director of the Exercise Medicine Research Institute, School of Medical and Health Sciences at Edith Cowan University in Perth, Australia.

Prostatepedia spoke to Dr. Newton about his exercise recommendations for men with prostate cancer.

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What specific exercise plans do you recommend for prostate cancer patients?

Dr. Newton: At the moment, we have a very generic recommendation from the American Cancer Society: complete 75 to 150 minutes per week of moderate to vigorous aerobic exercise and two or more resistance training sessions per week. That’s the same recommendation that the American College of Sports Medicine gives for any healthy adult, whether he or she has cancer or not. That recommendation needs to be more tailored to the stage of prostate cancer and the treatments the patient is undergoing.

I’m writing a letter to the Journal of Clinical Oncology in response to a paper by a group in Perth that they published in the last edition. The paper recommends that the way forward with the management of cancer will be home-based exercise programs prescribed by physicians, and most likely, walking programs. This is a tragic step backward in terms of the management of cancer with exercise medicine. It’s ineffective.

Compliance in home-based programs is woeful. It’s the wrong medicine. Depending on the problem the patient is experiencing, walking may be the wrong medicine. It’s like giving antibiotics as contraception. This is not the direction in which oncology should go.

For men on active surveillance, we have two principal targets. First, we try to reduce the risk of other chronic diseases. At this stage, the prostate cancer is not progressing that fast, so chances are the patients are going to die of something else.

If they’re overweight, obese, or their blood glucose is out of control, for example, metabolic syndrome will kill them long before their prostate cancer will. You’ve got to say, “Why are you worried about your prostate cancer? You won’t live long enough to get it.” If a man is overweight, physically inactive, or has a poor diet, then the focus should be on controlling that, not on the prostate cancer.

The other target for patients on active surveillance is to stimulate the mechanisms that might inhibit the tumor from developing further. We’re starting to get a good understanding of this. The key is to maintain or increase the amount of muscle in the patient’s body.

Muscle produces strong antitumor drugs. It’s natural, internal medicine, but it produces a range of substances that have an antitumor effect. We need to increase the size of the muscle and then activate that muscle regularly to get it to dispense these chemicals.

We’re unsure at the moment of what specific types of exercise drive the greatest quantity and which specific endogenous medicine will suppress tumor growth. At this stage, that’s why we recommend a combination of resistance exercise and aerobic exercise. That should help to slow the tumor progression.

Join us to read the remainder of Dr. Newton’s comments.


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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.

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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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Patients Speak: Choosing Focal Therapy

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

Join us to read our November issue on focal therapy.

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What was your life like before prostate cancer?

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

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

How did you find out that you had prostate cancer?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What was the actual procedure like for you?

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

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

Any side effects after the treatment?

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

How are you monitoring now for potential recurrence after treatment?

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

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

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

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

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

Any other thoughts for other men struggling with prostate cancer?

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

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

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

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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.

Goodman

What is Movember?

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

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

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

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

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

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

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

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

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

How did you get involved with Movember?

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

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

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

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

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

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

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

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

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

There are new ideas every year.

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What has been your own approach to Movember?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Most people with prostate cancer will die of something else.

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

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

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

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

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

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

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

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

Depression and suicide?

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

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

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Gay Men + Prostate Cancer

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

Why did you become a social worker?

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

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

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

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

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

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

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

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

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

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

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

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

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

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Patients Speak: Facing Mortality

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Mr. Spencer Le Gate spoke to Prostatepedia about his prostate cancer journey and his role in his local support group.

How did you find out that you had prostate cancer?

Mr. Spencer Le Gate: My family doctor put me on a small dose of a statin drug for cholesterol back in 2000. He had the good sense to give me a blood test every three or four months to check all my vital organs for any problems. At the end of 2007, he noticed that my PSA had started to rise. He asked if I knew anything about prostate cancer. Just a month prior, a childhood best friend had died from prostate cancer, so that was my introduction.

We watched my PSA for about a year, and then, in early 2009, I had a biopsy. We determined that mine was not the most aggressive form, so given all of the options, brachytherapy seemed like a good choice. I had the procedure in May of 2009. After that, there was a small spike in my PSA, which we all hoped would diminish as often happens after treatment. Almost two years later, my PSA had gone from around 1 up to almost 11, and that meant I had a recurrence of prostate cancer. Around early 2013, I had a biopsy that confirmed that I was recurrent nonmetastatic. I went on Lupron (leuprolide), which brought my PSA count down very nicely, so I asked if I could do it intermittently.

You asked for that rather than the doctor suggesting it to you?

Mr. Le Gate: Yes. I wanted the vacation because, of course, I experienced side effects.

What kinds of side effects did you experience on Lupron (leuprolide)? How did you manage them?

Mr. Le Gate: The side effects for me were, of course, the most common: hot flashes. At one point, I did have a Depo-Provera (medroxyprogesterone) shot, which diminished the hot flashes pretty well. The others were loss of libido and muscle weakness. I have lost muscle mass throughout my body, but particularly, in my legs. My muscles atrophied.

Were any of these side effects severe?

Mr. Le Gate: I would say, for the first round of my treatment, not so much. But since I went back on Lupron (leuprolide) in 2013, they are more pronounced. When I took the vacation, my PSA went up alarmingly. In other words, it was worse than that scary doubling threshold in three months.

Did they put you back on the Lupron (leuprolide) as soon as that started to happen?

Mr. Le Gate: I’ve been on the Lupron (leuprolide) for almost two years. Now, when I get up in the morning, my legs are painful and I’m a little rickety. Despite the fact that I’ll be 75 in a few months, my legs have been good to me, and I’ve led a very active lifestyle. The pain I feel now in the legs is not just the inevitably of age, but the Lupron (leuprolide).

Does exercise help with the side effects?

Mr. Le Gate: Exercise does. I have backslid some, but until about a year ago, I had a trainer. I went several times a week. I took a 12-week course of training sponsored by a local cancer organization during the intermittent period and it was very beneficial. Should I get the motivation to get back to exercise, it would help me a lot. I am still active and hands-on in my profession. I’m a general contractor. It’s a pretty active job, and I’m up and down all the time. But I learned very quickly once I started aerobic exercise, that it’s more effective than getting up every morning and putting on my tool belt.

Is there anything else that you do to manage the side effects?

Mr. Le Gate: Of course, the change in your mental state. When I’m not working, I’m a person who spends a lot of time reading, and before I decided to become a contractor, I had a pretty good education. I have some sense of my cognition, and I think that your overall mental state has an effect on how well you feel.

Did that go away when you went on the intermittent period?

Mr. Le Gate: It did. Most everything went away. I only had a year. During the intermittent period, I took that phenomenal 12-week course. We met twice a week for two hours of rigorous training, weightlifting—everything.

It was really eye opening for me.

Are you saying the exercise and training impacted the cognitive side effects you were feeling as well?

Mr. Le Gate: Oh, yeah. I think it did. I had some sense of that even before I had cancer. If you’re physically active, there is a positive mental effect to that. Again, some of these things are just so blurred. How much of it is due to aging, and how much is just the burden of a disease that— at this point—cannot be cured?

Stress, you mean?

Mr. Le Gate: Yes, stress. Also, I always have been a bit anxious. Now I think I have to be more careful about managing my anxieties. I mean, I think there’s so much of this disease that can be managed. You can manage it. I don’t have a metastasis. So I’m not in a worse position. I attend a monthly prostate cancer support group here in Sacramento, California. It’s one of the best things I’ve done. I’ve gotten involved in it, and I’ve actually had the good fortune to be asked to lead groups, come up with ideas, and answer folk’s questions. I’ve had a very healthy life and getting a major disease like this has been instructive. I started reading and writing more because of it, even just letters to the paper, letters to friends.

About your disease?

Mr. Le Gate: Not necessarily, no. I’m a political person on the progressive side. I have very strong opinions that I don’t mind sharing. Of course, I’m obliged to do more reading and be more thoughtful about my politics. I think having prostate cancer at this stage of my life has pushed me into this, and I take a great deal of satisfaction out of doing it now.

What advice would you have for a man diagnosed with this disease?

Mr. Le Gate: Find out all you can. Get involved in a group. Neither my oncologist nor urologist ever mentioned support groups. I discovered this just by chance when I was well into the recurrent part of my disease. Had I known that there was such a group when I was first diagnosed, I would’ve been better prepared to make decisions. Your doctor is a human being who can make good and bad choices. You need to be proactive.

I was fairly proactive, but when I first was diagnosed with the disease, had I known there was a support group, I would’ve learned about a number of other options. For example, there’s a group in San Francisco called The Second Opinion. Once you get a diagnosis— for no charge at all—you can meet with a group of doctors and discuss your options. I never knew there was such a thing before. Everybody who’s ever discussed the options thoroughly and looked at all sides of the coin can set their mind at ease before they make any decisions.

Are there other ways that the prostate cancer diagnosis might have had a positive impact on you?

Mr. Le Gate: After a lifetime without serious health problems, it’s not a bad thing to realize that you’re mortal. I think it’s made me more responsible about whatever time is left of me. I want to use my time the best way I can and to learn something, even if it’s just to learn something about the disease. There’s so much to learn about healthcare and the science of treating with medicine, but most people, if they’re healthy, simply ignore this. To be more informed in this way, and to have the disease yourself— if you’re smart and if you have a sense of humanity—you’re going to think about other people who have the disease and be more sympathetic to others.

The diagnosis has made you more—

Mr. Le Gate: Empathetic. I want to reach out to the people I see at my support groups because I know something about the disease, especially for those who have just recently been diagnosed. Because I know a bit more, because I’m old hat, if I’m able to do the slightest thing to relieve their anxieties and fears, that’s a good thing. I’m hopeful that I can put together some sessions at my prostate cancer support group where participants can discuss their mental state. At the last meeting, when I was asked to be the facilitator, I came up with the idea to put together a questionnaire, which would be voluntary and anonymous. I want to see what people have done to mitigate, find some distractions, and to discuss anxieties.

I’ve noticed in our group that we’ve discussed the mechanics more than the emotional. You have to be careful that you don’t make this into a weepy, touchy-feely thing. I’m trying to navigate it so that we can discuss our emotional things in a sensible way that’s helpful, that doesn’t make people more fearful.

You want it to be a positive experience?

Mr. Le Gate: Exactly. I was pleasantly surprised when I raised the point, which was so different than the things we usually talk about. We usually talk about where someone is in their treatment. The response was relatively positive from people.

It’s an Us TOO through the University of California Davis Medical Center and Dignity Health. We alternate between those two venues. I’ve been with this group about three years. I’m not a person who joins things, but it’s become an important part of my life. I have the support of my peer navigator, Bill Doss, and our Director, Beverly Nicholson. They are just fabulous people. I’ve really gotten a lot out of it, and I think others have too. It helps to be almost 75 years old and still have your wits about you.

To realize your experiences in life could be useful for a lot of other people. That’s what’s working for me.

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Patients Speak: Getting The Gallium-68 PSMA Scan

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

How did you find out you had prostate cancer?

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

Young.

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

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

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

What type of radiation did you get?

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

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

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

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

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

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

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

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

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

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

I’ve not heard that before.

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

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

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

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

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

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

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

You traveled so far to get the scan?

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

What was it like to get the scan?

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

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

What was the plan after imaging?

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

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

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

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

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

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

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

How is the recovery going?

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

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

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

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

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

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

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

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

Beginner’s mind?

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

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