AnCan Active Surveillance Prostate Cancer - 4/23/2025

4/23/2025 - Active Surveillance Prostate Cancer - YouTube

Active Surveillance Prostate Cancer - 4/23/2025

AnCan is grateful to the following sponsors for making this recording possible: Bayer, Novartis, Johnson and Johnson, Myriad Genetics, Telix, and Blue Earth Diagnostics. Active Surveillance (AS) for low-risk prostate cancer involves unique challenges compared to other treatments. This online support group is designed for men and their caregivers who are currently on or considering AS. We hold four meetings monthly, recording only the second and fourth sessions. Our discussions cover a wide range of topics, including anxiety management, biopsy experiences, and the decision-making process around continuing or discontinuing AS. Newcomers are given priority to share their experiences, so we encourage you to join us.

You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/. Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/.

Summary

This is a video from an online prostate cancer support group meeting specifically for men on active surveillance. The meeting was recorded and involved about 15 participants discussing their experiences, test results, and treatment options.

I'll expand on the key topics discussed in the support group meeting:

Genomic Tests for Prostate Cancer

• Multiple test types discussed: Decipher, Artera, Promise, and Anatype - each analyzing different genetic aspects
• Differentiation between tests: A participant (Alan) clarified that Promise looks for genetic predisposition mutations, while Decipher examines different genetic factors
• Artera test: Described as an AI-based analysis similar to Gleason scoring but more systematic
• Decision-making: Discussion about whether additional testing would be "overkill" if someone already had multiple tests showing low risk
• Clinical significance: Multiple participants shared how their genomic test results (mostly favorable) contrasted with concerning biopsy or MRI findings

MRI Results and PIRADS Scores

• PIRADS scoring concerns: Significant anxiety expressed about PIRADS 4-5 scores (highest risk categories)
• Lesion tracking: Several members shared how lesions changed size between MRI scans (some shrinking)
• Interpretation challenges: Discussion about how PIRADS scores are subjective visual interpretations
• 3 Tesla vs 1.5 Tesla machines: One member switched to a 3 Tesla MRI machine based on group recommendations
• MRI procedure improvements: A member noted that rectal probes are no longer needed with newer 3 Tesla machines
• Interpretation of "ill-defined" areas: Group discussed what it means when radiologists note unclear areas

Biopsy Approaches

• Strong advocacy for transperineal: Group leaders emphasized transperineal biopsies over transrectal due to lower infection risk
• Infection experiences: One member (Andre) shared complications after a transrectal biopsy
• Antibiotics protocol: Discussion about different antibiotic regimens used (or not used) with different biopsy approaches
• Single-entry techniques: Description of "precision point" technique where only one needle puncture is made
• Access considerations: Brief discussion about whether certain approaches can better reach specific areas of the prostate
• Needle shedding concerns: Brief mention of theoretical risk of cancer cells being spread during biopsies

Nutrition and Lifestyle Changes

• Vegan diet experiences: Several members shared significant PSA decreases after adopting vegan diets
• Weight loss benefits: Multiple participants reported substantial weight loss following diagnosis
• Fish consumption debate: Discussion about methionine levels in fish and potential impact on prostate cancer
• Intermittent fasting: One member practices 18:6 fasting (eating only between 3-9pm) and reported benefits
• Mental health aspects: Group leader emphasized moderation and finding sustainable approaches that don't create stress
• Scientific evidence: Group debated the strength of evidence for dietary interventions, with some citing studies supporting specific approaches while others noting limited definitive research

BPH Treatments

• HoLEP (Holmium Laser Enucleation of the Prostate): Detailed description of this procedure for large prostates
• Alternative treatments: Brief mentions of UroLift, Rezum, PAE (Prostate Artery Embolization), and Aquablation
• Success stories: One member shared his father-in-law's successful HoLEP at age 90 with a 300cc prostate
• Recovery process: Discussion of catheter removal timing and hospital stay requirements
• Side effect risks: Very low rates of ED and incontinence (1%) reported as advantages
• Presenter guidelines: Group leaders stressed the importance of balanced information about treatment options rather than promoting specific brands/approaches

The meeting demonstrated how experienced members provide context and nuance about test results, procedures, and lifestyle interventions while emphasizing the importance of personalized approaches to monitoring and managing prostate cancer.

The group dynamic showed experienced members providing support and information to newer members, with several references to second opinions and consulting doctors at "centers of excellence." Members shared personal experiences with test results, biopsies, and lifestyle modifications, particularly emphasizing the importance of transperineal biopsies to reduce infection risk.

Active Participants:

Here's a list of the participants and their main inputs from the transcript:

Group Leaders

·         Gary (moderator): Facilitated the meeting, took roll call, emphasized transperineal biopsies, discussed moderation in diet and lifestyle approaches.

·         Rick: Contributed information about methionine in foods and prostate cancer, mentioned upcoming travel to Australia and Japan.

·         Phil: Provided context on PIRADS scores, advocated for moderation in dietary approaches.

Active Participants

·         Ignacio: Asked about whether to do an Artera test before his upcoming MRI, shared his history of PIRADS 4-5 lesions, 3+4 Gleason score with low percentage of pattern 4, and stable PSA.

·         Andre: Reported on urinary/groin discomfort after a transrectal biopsy and his urologist's diagnosis of prostatitis rather than infection.

·         Chris (from California): Shared recent MRI results showing shrinking lesions after lifestyle changes, discussed the benefits of a 3 Tesla MRI without rectal probe, and advocated strongly for plant-based diet.

·         Jay (from Van Eyes): Updated on his second opinion consultation at UCLA with Dr. Siegel who confirmed he's a candidate for active surveillance, awaiting Johns Hopkins pathology review.

·         Allan: Reported "accidental" PSA test at 3 months post-biopsy showing 2.6 (normally 1.3), discussed IBS complications after biopsy.

·         Ray: Shared his experience with a vegan diet during "dry January" and seeing PSA drop from 3.6 to 2.3, practices intermittent fasting (eating only 3-9pm).

·         Joe Mingrown: Discussed his consultation about HoLEP (Holium laser) treatment for his severe BPH symptoms with 100cc+ prostate.

·         Derek: Mentioned his experience with PIRADS 4 lesions over three years with negative biopsies, asked about needle shedding during biopsies.

·         Eric: Shared experience with both Decipher and Artera tests, provided technical insights on several topics.

·         Jose: Discussed a family member who works with Aquablation (BPH treatment) and possibility of future presentation.

The transcript showed a supportive community dynamic where experienced members shared their knowledge and personal experiences to help others navigate their prostate cancer journeys, with special emphasis on active surveillance strategies.

Cleaned up Transcript

Prostate Cancer Support Group Meeting - Active Surveillance Group

Moderator (Gary): This conference will now be recorded. We're recording the second and fourth sessions of the month. So you can either choose to attend the non-recorded sessions and watch the others at your leisure, or change your name and turn off your camera if you prefer. First, we would like to thank our sponsors that helped make this organization run: Bayer, Novartis, Johnson and Johnson, Myriad, Telix, and Blue Earth Diagnostics. As you know, everyone on this call should not have received or be receiving any treatment for prostate cancer. If you have been treated or are in the process of getting treated, we have other groups that may fit your needs better. You can certainly stay and listen, but again, this is for the active surveillance group.

Gary: Let me take roll call and ask if each individual needs any time tonight, especially if you're new to this meeting.

Ignacio: I have a super quick question, but only if time allows. It's not important.

Tom from Virginia: [No questions]

Allan: Not really. I got some accidental test results which are positive, I guess, but nothing really important.

Andre: Just a report of my last week follow-up.

Chris from California: I could use a couple minutes if time allows.

Mike Williams: I'll be mostly listening, but I might have some comments somewhere.

Jay from Van Eyes: Maybe a minute just to update on my visit with my second opinion with the urologic oncologist at UCLA today.

Derek: [No questions]

Bill Wood: No thanks, I'm okay.

BJ/John: I'm going to be in and out of this, but I did have something to talk about my situation, so if there's time.

Paul: [No questions]

Ray: Bjian asked me if I would talk about what I was doing nutritionally. So, if the group wants to hear, I can talk about that. Otherwise, I'm just going to listen. Last week was my first week.

Mike Wyn: No, thank you.

Gary: We don't have any first-timers, so we've got plenty of time for everybody to talk about results, good news, and maybe some nutrition from Ray. Ignacio, you go first.

Ignacio: I'll be super quick. I have an MRI scheduled for June 23rd. In California, the Artera test is now approved and has been for about 4-6 months. I have done the Oncotype test and also the Cipher test. Both came out low. My question is: would you recommend that I also do the Artera, or is it going to be overkill? And if I should do it, should I do it prior to the MRI or after? Does it even matter?

Eric: I can talk to that a little because I've had both Decipher and Artera, and they both look at different genetics of your biopsy slides. If you want a new data point to consider, it doesn't hurt. If you're the kind of person that thinks "too much information, I don't need to know that much," then don't do it. If you like more data points, do the opposite.

Ignacio: I want as many data points as possible, especially since I'm trying to safely avoid having any kind of treatment.

Eric: The doctor will order it and coordinate with whatever lab has your slides. If they're digital, they'll just send the file. If it hasn't been scanned yet, then I think Artera will scan them in Jacksonville and then send them back to the appropriate lab for storage.

Gary: We're talking two different things though, right? We're talking an upcoming MRI and Artura needs your slides from your last biopsy, correct?

Ignacio: I mentioned the MRI just to paint the whole picture. That MRI is going to be with Dr. Carroll at UCSF. He suggested that I do that, and I have full confidence and trust in him.

Gary: Tell me what your latest Gleason is. Do you have some 3+4? Do you have 3+3?

Ignacio: I've had a couple of biopsies. The last one was last May, and that turned out with seven cores positive out of 14. Two of those cores had a 3+4 but not much, like 5% or so. I also had an MRI prior to the biopsy, so the biopsy was targeted. The MRI showed a PIRADS 4 and a PIRADS 5, and that freaked me out. However, when they targeted the lesions, the PIRADS 4 actually came out good, and the PIRADS 5 came back with a 3+4, but the 4 was only like 5%. My urologist recommended treatment, so I actually had it scheduled for the end of September.

Gary: Now I remember - you went out to the conference and they changed their position.

Ignacio: Yes, that's amazing.

Gary: Since you're going with Dr. Carroll, one of our centers of excellence good guys, and if you're the kind of guy that really wants to know, I think you answered your own question about what you might do at this juncture in your journey. And as Eric said, if you're a data guy who wants more data points, that's the way to go.

Ignacio: It's basically just to ensure that it's not overkill, because I have the Promise results, the Decipher results, and the Anatype results - all those are low, which is great. That offers me hope. However, there's something going on because the biopsies come back positive. The MRI shows a PIRADS 4 and a PIRADS 5. So, it's kind of a dichotomy - the genomics show up good but the actual samples from the prostate are not so good.

Phil: The only thing I have to say is that PIRADS 4 and 5 are indicators of concern, but because the numbers are high, they scare you. You captured what I went through perfectly - it scared the crap out of me too. I'm going to try and speak to Howard. We really ought to have better data on PIRADS 4 and 5 so that people know that it shouldn't put the fear of god into you. You're not the first person who's had those kind of high readings that upon examination have not proved out. Everyone says "don't worry until you get the results," but it's easier to say don't worry than it is to not worry.

Ignacio: I appreciate the comment. The MRI also showed no ECE (extracapsular extension), and I also had a PSMA PET scan that came back clean. So overall, I'm optimistic and hopeful that I can remain in this group.

Gary: It would certainly appear that you hopefully will be in this group for a long time. That's a good point, Phil. I wonder what's the determining factor to make it from a PIRADS 3 to a 5. Is it like one centimeter on a lesion? Is it two centimeters?

Phil: I'm going to write Howard. He's got so many contacts - it'll give him an excuse to write something, and we'll find out some good information.

Gary: Howard never needs an excuse to write, but that's a good idea. I wonder what's the difference between a 3 and a 4? Like if somebody's diagnosed with a 3+4 and it's 7% versus 5%.

Allan: Just quick - you may be aware, but Decipher and Promise are two completely different things. Promise is looking at if you're predisposed because of a genetic mutation. I don't know the tests you're talking about doing now, but for the group in general, they're two very different tests.

Ignacio: My understanding is that Artera is basically similar to when you get a Gleason score, but it's done with AI, so it's more systematic and programmatic. But just so you understand, it is not an overlap of Promise because Promise is only looking at if you had a gene mutation. All the tests I've done - Decipher, Promise, Anatype - they all came back low. My PSA has stayed steady now for almost three years between a low of 3.4 and a high of 5.1. The latest was 4.8 about three months ago.

Gary: You're right where you want to be. Everything that you've had, everything that's going on - you're doing all the right things and getting a whole lot of information. I have never done half of what you've done because I'm not one of them data guys. A PIRADS 2 with no lesions is good for me. Everybody is different and handles everything differently.

Derek: I just want to mention that I've been with PIRADS 4 with lesions for the last three years. Did two biopsies, and now I'm kind of saying maybe I shouldn't have done that second one. The biopsies came back negative both times. Is the PIRADS score not a visual interpretation of somebody's eyeball? So everybody's eyeball is a little different in their interpretation. Bear that in mind as well. I watched Dr. Scholz's videos from PCRI, and the claim is that 80% or so of PIRADS 5 is not good. So as Phil said earlier, it scared the crap out of me at the time. Last year my PSA was 5.3, and then this year at the same time, the PSA came down to 4.1.

Eric: The PIRADS 5 just means there's probably cancer there, but you already know that because you've had a biopsy. If you look at the chart I put in the chat, there's a very high chance there's probably cancer there. What grade is it? They don't know until they biopsy it. And the key word is "clinically significant."

Ignacio: In my case, it was a 3+4, and I actually showed it in person to Dr. Scholz at the PCRI conference, and he basically said I'm fine.

Eric: Once you have a PIRADS 5 that's been targeted and given a Gleason score, that's what you hang your hat on.

Gary: Let's hear from Andre next.

Andre: Just quickly, last week I reported that I was having problems in my groin area after the biopsy, and it had been about a month. The next day I had a visit to the urologist, and he said that if it was sepsis or an infection, I would have died by now. It's probably a combination of stress and prostatitis from the biopsy. He prescribed some medicine for prostatitis, which I forgot to buy. By the time two days went by, all the discomfort kind of went away. So that's the end of the story.

Gary: That's a good thing. I take it you had a transrectal biopsy?

Andre: Yes.

Gary: This is one of the reasons why we really try to stress that people have transperineal biopsies, because the chance of getting sepsis - which you didn't have - is a concern. Did they give you antibiotics before your biopsy?

Andre: They gave one injection of penicillin right at the end of the biopsy. That was it.

Gary: Normally, they prescribe an oral antibiotic the day before, the day of, and the day after. And it's pretty heavy-duty stuff because they're trying to head off sepsis. There's a very slim amount of people that die from sepsis from a biopsy, but you don't want to be that guy. Transperineal takes that risk completely away. It's much easier for doctors to make money doing a transrectal in an office than in an operating space. You most probably just had a little bout with prostatitis. Luckily, no big deal. And right now, you're feeling well?

Andre: Yes, very good.

Gary: That's good news. But we'll definitely keep you in the archives as far as transrectal having a minor difficulty. Have you gotten your results back yet from the biopsy?

Andre: My biopsy was in March. That's why I was concerned because it had been a month, month and a half, and I was still having discomfort. I'm still finding some blood, but people say it may last for two months. The discomfort was bothering me - I couldn't sleep. The PSA was 3.5, and the biopsy Gleason was 3+3 in 3 out of 10 cores.

Jose: Andre, you had a urine test at the same time, and that was negative, correct?

Andre: Yes, it was negative.

Unknown Participant: I was just going to ask if before they did the biopsy, did they test your stools for E. coli or any type of bacteria like that? They did that with me, and there were bacteria that showed up. So there are other bacterial infections besides sepsis that you could have had too.

Gary: I've never heard of testing of stool before a biopsy.

Unknown Participant: They either tested my stool or they swabbed my rectum. I remember it did come back as E. coli and one other bacteria. They gave me a fluoroquinolone antibiotic (Levaquin) and they didn't give me the black box warning. I developed tendinitis almost immediately and took the full course. I couldn't walk for about a month and had to redo my whole workout routine because I had to worry about snapping a tendon. But I didn't have any infection. I don't want to do a transrectal biopsy because I can't have a fluoroquinolone antibiotic, and the risk of infection doesn't thrill me.

Gary: Another good plug for the transperineal approach.

Unknown Participant: Does it matter where the tumor is as far as being able to reach it for a transperineal biopsy? Can they reach anywhere in the prostate just as they can through a transrectal?

Gary: That's another big area of discussion, with one side saying they can do so much with the transrectal versus the transperineal, and on the other side, transperineal versus transrectal. I believe perhaps there's one approach that's favorable for certain areas, but they're going to poke wherever they want whether they go with transperineal or transrectal. I had what they called the precision point transparent needle, which they only poke you once, and then they can move the needle all around where they want to go. That's been refined now.

Eric: I seem to remember transperineal had better reach of the apex.

Gary: That sounds right. We here at this organization preach nothing but transperineal. If somebody's headed for a transrectal, we try to do everything possible to discourage it. Of course, we're not doctors - we're not making medical decisions for you. You have to be your own advocate and feel good about what you're doing. Certainly, we believe in second and third opinions unequivocally. The minute somebody comes on here as a new member, we ask if they got their pathology and MRI second opinions. If someone needs to know where to go to get a second opinion for one of the diagnostic processes, we can set you up or find you a doctor or a center of excellence.

Gary: Chris from California, what do you have?

Chris: Thanks, guys. Last night I had an MRI, and surprisingly I got my results already. It was my second MRI. First, I'll say thanks to you guys - I ended up getting the MRI on a 3 Tesla machine. I had to drive about an hour and a half. I had an appointment scheduled a couple weeks ago for a 1.5 Tesla, and I asked my doctor to change it. So I went down to Oakland and got the MRI last night. I was pleased to find out that unlike two years ago, they don't use the rectal probe anymore with the 3 Tesla, which was quite a relief.

My question: In my first MRI, I had two lesions - one was 1.4 cm and one was 1.2 cm. I haven't talked to my doctor yet, but lesion number one has gone down in size to 1.1 cm from 1.4, and the second lesion went down from 1.2 cm to 0.5 cm. I'm a diet and lifestyle guy as well. When I was diagnosed three years ago, I went super hardcore. I believe that diet, lifestyle, and also my spiritual practice could actually help with regression. I feel pretty good about that, and I'm going to be having another biopsy in June.

This time there was a third lesion. The first two lesions were PIRADS 4 in both MRIs. This lesion number three says "ill-defined area of markedly hypointense T2 signal along the left transition zone near the prostate base measuring approximately 9mm, PIRADS 3." I'm not sure what that means.

Eric: It's like a fuzzy area on the MRI and they're saying, "There's something there, but we're not quite sure." They're putting it in their notes just to have to reference on the next scan.

Bill: I think that's exactly what Eric said - imprecision.

Eric: It's like a shadow or fuzzy area, or the density of the prostate is just slightly off, and they're like, "Let's put that in the notes to keep an eye on, but it might be benign if they targeted it." They just don't know. It's all guesswork on imagery. They didn't see it before, but they see it now, so they note it.

Gary: What's your PSA?

Chris: My PSA has been really steady around 4.0.

Eric: Perfect. Keep doing what you're doing.

Derek: I wanted to mention that I had lesions show up one year, and then the next year that lesion was gone, and then a new one showed up somewhere else. So they can come and go apparently.

Gary: We've had people who had Gleason scores, and then they went away because whatever was there was gone.

Unknown Participant: I was just going to add that my one and only lesion was a PIRADS 3, same thing - ill-defined border. Just because my PSA had jumped so much in a year, my urologist said we should do a biopsy, and that's what I did. Mine was PIRADS 3, same description - "ill-defined" and "equivocal."

Eric: Chris, how long has it been since your last biopsy?

Chris: Three years. That was a random biopsy. They did my MRI after, which is interesting.

Eric: Do you feel like you need a biopsy?

Chris: I kind of feel like I waited three years, and just the fact that it was random, I'd love to see them target these areas and find out. If I'm still a 3+3, I probably wouldn't do another one for quite some time as long as the PSA stays low.

Derek: Have we ever talked about needle shedding during biopsies?

Eric: It's a possibility, but it's super low - less than 1%. It's hard to prove. Most doctors say it doesn't happen, but common sense or logic says otherwise. It's always a question of: do we want to poke the bear or not? But it's hard to prove, and statistically, it doesn't look like it's an issue.

Gary: Next is Jay.

Jay: I don't mean to cut in line, but I have to go if the group doesn't mind. I did see a UCLA urologic oncologist today, Dr. Siegel in Westwood, for a second opinion. I'm waiting for second analysis of the biopsy that Johns Hopkins is doing. My primary urologist was in private practice. I also turned in the Promise test, so I'm waiting for that. Today I mentioned the Decipher test, so Dr. Siegel is going to send out for that. His opinion was that I'm still a candidate for active surveillance. If I want to still look at radiation options, I can see Dr. Kishan, which has been recommended by Rick and Mark and several people, just to discuss it, but I'm not making any decisions yet.

Gary: What is your Gleason score and PSA?

Jay: 3+4, grade 2. One of the sizes was 7.8mm.

Gary: How much pattern 4 did you have? What percentage?

Jay: I don't have that right in front of me, and I'm not good at memorizing all that.

Gary: You're still waiting for a second opinion from Hopkins on your slides, correct?

Jay: Yes, sir.

Gary: That'll be critical in the decision-making process, to see if everybody's on the same page. What does the PSA number look like in the past year?

Jay: I made the mistake a lot of us do. In December, I had sex the day before testing, and it was 6.9, but then we tested again in March, and I was 4.2. We did the MRI prior to the biopsy in March.

Gary: If your PSA is down to 4.2, and the 3+4 is low volume that Hopkins agrees to, and you get the results of Decipher, you should be able to join us for a long time, I hope. You still have more information to get back, so be sure to join us every Wednesday and keep us posted. Wait till you get all the information, and then see where you're at, but I think you're right there with us unless something comes up in the second opinion of the slide.

Jay: Thank you. Great support from you guys. Really appreciate it. And my friend Derek supports me, too.

Gary: That's what it's all about. We're all on the same journey here.

Jay: I'm glad to share my information, not only for myself, but it helps others.

Gary: Sharing is really important, and we certainly appreciate it.

[Jay exits]

Gary: I would like to welcome Joe Mingrown. Do you have something to share?

Joe: I don't think anything new. I saw a BPH doctor that does HoLEP last week, but I don't know if I reported that already. If anybody's interested, I can share the experience.

Gary: What I've been reading is that for us guys as we age, BPH is going to be a problem. Let's go through our list before we discuss that. We've got time. We're going to talk to BJ/John first, but he may be away.

[No response from BJ/John]

Gary: That's it for people that actually wanted time. Ray wanted to talk a little about nutrition, and now Joe might talk a little about HoLEP. Allan, did you need time, too?

Allan: I could ask a quick question. I saw my gastroenterologist because I'm having a separate set of issues. They did my PSA prematurely. What I was told by Dr. Eastham and Dr. McClure is not to do PSA for six months after your biopsy. It was done at three months. It's twice my normal level - it came in at 2.6, but I've had two peaks of prostatitis which have driven it to 4 and 5 when they've tested. I emailed Eastham immediately saying I know you said not to do it, but it got done anyway. What do you think? His answer was basically, "See me in July. Don't worry about it." I don't know if anybody else has had an experience of how soon after your biopsy they do your PSA.

Unknown Participant: Usually it's a couple months to let it heal because it's been perforated with a biopsy. The answer I got from somebody was that 2.6 at three months actually means you're in really good shape - your prostate is healing nicely. Are you on any medication?

Allan: No.

Unknown Participant: That's a good number for having been perforated by a biopsy, in my opinion.

Allan: They had warned me that the biopsy could cause some prostatitis, which it did. They also think that the biopsy - and I did have transperineal and was put on a strong antibiotic even with transperineal - caused some IBS, which I'm prone to. That's why I was at my gastroenterologist, and he also warned that they use some type of probe even in a transperineal, and he said that may have also caused some of the IBS. So I'm busy trying to heal the IBS right now.

Unknown Participant: Was it a guided biopsy with an ultrasonic probe?

Allan: It must have been. It was guided because they had done the MRI, and they were going after the PIRADS score. The ultrasound is the probe that goes in your rectum so they can target the lesion. They think that may have helped trigger more IBS. Plus, he was also afraid that the Bactrim - I think that's the name of the antibiotic - is a very strong surgical antibiotic that created what they call SIBO, which is a small intestinal bacterial overgrowth. They're putting me on medicine to reverse that if necessary. Right now, they just have me on something to soothe the intestinal tract, and that seems to have worked.

Unknown Participant: It's unusual they even gave you an antibiotic for transperineal.

Allan: They did. They put me on it before and for a week after, and a shot during.

Unknown Participant: I think my guy was just playing very safe.

Gary: The whole idea with the transperineal is that you don't need antibiotics. There's a lot of discussion about antibiotic overuse, and the more you take, the more prone you are to certain antibiotics not being effective. That's why they generally don't use antibiotics with the transperineal. But as you say, he was being overcautious.

Allan: I'm now a Dr. Eastham patient at MSK, so I'm with one of the top guys now.

Gary: You might have some other health issues that kind of predetermine how they're going to treat you. What we know as common for us may be uncommon for you, or vice versa. So maybe that's why he did prescribe an antibiotic.

Allan: They've warned me - even Dr. Eastham said part of the reason they want to keep me on active surveillance as long as possible is if they treat it, it will kick up the IBS really bad. If they can keep me on AS, they definitely want me on AS.

Gary: I'm sure he'll guide you in the right direction as long as you agree.

Allan: McClure said the exact same thing. It was just odd when my blood test came back - I was not expecting to see a PSA there. I think either Eastham or McClure had already put it on the chart, and when they did the other blood work, nobody stopped to say the gastroenterologist didn't order a PSA - they just went ahead and ran it.

Gary: Were you properly prepped for a PSA in your mind?

Allan: Most probably. I had been at the gym earlier in the week, but I wasn't riding a bike or anything like that.

Gary: So 2.6 is really good then. Good job there.

Allan: Normally when I'm in my best condition, last October I was 1.3.

Gary: That's amazing. I want those numbers.

Allan: I'm always one-something except for the two times of the prostatitis, and then I went to 4 and 5. I freaked out when they got the 5, and they retested me in two weeks, and I was down to 2.6 already or 2.8 in a matter of weeks.

Gary: I was just curious on how quickly they normally do a PSA after a biopsy. I think I had mentioned last time that there was a document that Jim Marshall had written on how to fail a PSA test. Did we ever find that in the archives?

Phil: I did find a Prostate Cancer Foundation thing about PSA, but not specifically Jim Marshall's.

Gary: There are actually some supplements that you're supposed to stay away from. I know the basic things you're supposed to not do, but I guess there's more than what I know.

Phil: There's medications. There's all kinds of things.

Unknown Participant: I just have a question on this. How to fail a PSA - do the medications make your number rise or lower your number?

Gary: It depends on the medication.

Unknown Participant: Got it.

Gary: Masturbation itself will cause it to rise.

Gary: We'll have to try to get that information and send it out in the newsletter or post it in the chat. Eric is going to post the PCF thing about PSA for reference.

Gary: Ray, you wanted to talk a little about nutrition.

Ray: Bjian had asked me to discuss it. I don't know if he's on or if people are just interested. He was interested in what I was doing because I decided to do dry January, and as long as I was doing that, I decided to go full vegan. I get my PSA every three months, but my general practitioner was doing a whole battery of blood tests and offered to include PSA. My PSA went down from 3.6 to 2.3. I have no idea if that's just lucky or if it was the full vegan diet. I kind of took an approach that food is medicine and made sure I had about 10 foods and things that were shown to be tumor suppressing or there was some evidence of it. So I don't know if it was diet or some aspect of the diet or just coincidental, but whatever it was, my PSA did go way down.

Gary: Whatever it is, it works for you, and that's what counts. Whether all of those things played a factor or didn't play a factor, perhaps one or two of them, perhaps none of them - because there's no way scientifically to say "I did this and this is the result" since there are so many other things going on in your life each day. But if it works for you and your PSA went down, that's definitely good for you. There's more and more scientific data - there was always data about exercise and cancer. Any kind of exercise is good when you have cancer, no matter what kind of cancer. The biggest consensus right now is the Mediterranean type diet, because more of us are going to die from heart disease than prostate cancer. That's a fact. So everybody's trying to get everyone on a more heart-healthy diet, which in turn would be good for somebody battling any type of cancer. Going to different ends of the spectrum like raw vegan - there really isn't a whole lot of hardcore scientific data other than the Mediterranean diet being proven to be heart-healthy through various clinical trials. But if it works for you, that's the way to go, no doubt.

Allan: I also continued to lose weight, which is important. When I was first diagnosed, I needed to lose weight because I was 5'7" at a high of 195, and I was carrying a fair amount of muscle, but still, I was carrying a belly - and as they said, cancer likes a belly. I'm now down to 171 and trying to get to 168. The vegan diet actually helped with losing weight. I was kind of stuck at around 178 to 180. As the famous retailer John Wanamaker said, "I know that 50% of my advertising is absolutely useless. I just don't know which 50%." So I don't know if it's the soy, the sulforaphanes in the broccoli sprouts, or whatever, but I'm just making sure I have it every day, and it seems to be working. Maybe it's total placebo - I don't know.

Gary: But it's backed up by lowering your PSA number too. Something you're doing - the weight loss, the diet, things that you may not even have control over - at this point, it's working. Can't ask for better than that. We have a lot of guys that are in some form of vegan diet. I don't know how many full vegans we've got, but I think everybody after a diagnosis gets a little bit more concerned about their diet, and rightfully so. Speaking for myself, my diet was not so good. It does make you think, because when you hear the C-word and the way these doctors present it, it's almost that "crap in your pants" moment we talked about earlier. What am I going to do? Hopefully, as I said, you have a far better chance of dying from heart disease than you do from this disease at this stage. If we had metastatic disease, that's a whole different situation.

Ray: Does anybody have an opinion on fish? I've read a lot of literature, some saying fish is somewhat beneficial as far as an anti-cancer food (not just for heart health), and then others suggesting protein may not be so good or at least not that helpful. Any opinion on fish as far as prostate cancer?

Unknown Participant: I eat fish at least once or twice a week, or tuna, because it's high in omega-3s. The omega-3s are very important.

Ray: I have flax seed every day, so I get the omega-3 ALA from that, but I was eating a fair amount of fish before. I also heard there was a glutamine pathway to cancer progression, and fish tends to have a fair amount of glutamine in its protein profile. So that's why I was wondering if there were any thoughts on fish once or twice a week.

Gary: I think that's kind of a personal thing that everybody comes up with. I don't eat fish - never liked fish other than tuna. Now I read that every fish has got microplastics in them. Mercury was the first concern, and now it's all about microscopic bits of plastic in the oceans that the fish are eating that you're digesting when you eat fish. They don't get you one way, they get you another. When you think you're doing something right, they ruin it.

Phil: Everything in moderation.

Gary: Exactly. Moderation. Don't eat the whole Coke bottle at one time, just a little bit. Any other opinions about diet?

Chris: As I mentioned earlier, I'm a pretty hardcore diet guy. I'm like you, Ray. I eat one piece of fish a week just to kind of splurge. I think fish is fine. I'm with you, Gary - whatever anybody wants to do. But fish is extremely high in methionine. If you do a little research on methionine and prostate cancer, that's one of the things that I've really tried to stay away from - trying to keep as low a methionine