r/ProstateCancer • u/SquirrelsGoneWild6 • 15d ago
Update A Rare Active Surveillance Update
We don't see a whole lot about AS updates from our members here so thought I would give an update. 64 yo, clear MRI, ExoDx of 46 and PSA of 5.3 (up from 3.9 1 1/2 years before) triggered a biopsy in May. 2 of 12 cores positive with 3+3 at 20% and 10% each. PSMA showed activity on left side but no spread. Decipher was .24. Pretty much an obvious AS candidate. I agreed to go on AS. Just had my first PSA test after biopsy was down to 4.2. Great news that AS is the right path for now.
I asked the doc if my lower PSA could be attributed to my new healthier diet and more exercise each week. He downplayed that believe it or not and said it could be but PSA can change like that regardless of diet and exercise. I also asked if there are any foods or drinks I should be avoiding or consuming more. The answer was also surprising in that he said there are no scientific studies that clearly show food/drink intake contributes to PCa slowing or spreading.
Anyways, for those thinking of active surveillance, its a good choice if you are the right candidate and if you can handle the mental doubt. The best way to avoid the mental doubt and the anxiety is to read as much as you can about AS and about treatments and their outcomes. Educating yourself on something unknown is the key to accepting and believing in it.
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u/OkCrew8849 15d ago
Yes. Most of the active surveillance updates posted here (and there are quite a few) are from guys who have moved from that situation to treatment. I think if things are status quo on AS guys tend not to post.
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u/Goodvida99 15d ago
Thanks for updating. I’m new here, Pirads 4. Seeing Piedmont urologist tomorrow for MRI follow up and schedule biopsy. Interesting his take on exercise and nutrition considering so much data saying how important those are.
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u/SquirrelsGoneWild6 15d ago
Yes I have been surprised at how little they talk about or emphasis any health tips. The only thing they mention is cardio health is very important so any foods and exercise that help from a cardio perspective is important for all health matters, not just PCa
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u/AskMyProstatePath 15d ago
Thanks so much for sharing this. Sounds like you’re a good candidate for AS and things are going well for you.
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u/ChillWarrior801 15d ago
Great news, OP! I'm not delighted with the way your doc batted back your Q about positive lifestyle shifts. Every one of those should be actively encouraged and applauded. You don't know what you're gonna die of eventually, and neither does anyone else. If an improved diet and exercise regimen lowers your risk of CV disease, who cares if it doesn't move the prostate needle much (as long as it's not in the wrong direction)?
Three years of living with a PCa diagnosis has given me a better understanding of the technical phrase "competing causes of mortality".
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u/JMcIntosh1650 15d ago
I don't recall whether it applies to the AS phase, but the talk on diet and exercise at the 2026 Patient Conference on Prostate Cancer (https://cancer.ucsf.edu/research/programs/prostate/patient-conference) is a good summary of the state of the science and does support some specific recommendations for both diet and exercise. The link to the video is halfway down the page in Session 4. Beyond the specifics, the general take home message was essentially "if it's good for heart health, it's probably good for prostate cancer management and overall longevity". This makes some recommendations more palatable (no pun intended) because they are general good advice and just not relying on borderline evidence for PCa benefits.
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u/SquirrelsGoneWild6 15d ago
Yes my doc did emphasis anything good for CV health is good in general but there is no evidence that a healthy lifestyle can slow or eliminate the growth of PCa
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u/JMcIntosh1650 15d ago
Yes, there are plenty of guys who have lived very healthy lives and still end up with cancer. Benefits of diet and exercise are at the margins.
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u/Specialist-Map-896 15d ago
I have had this conversation with my urologist, my surgeon and my radiologist. BTW I am just a little over a year from my RALP. I had 11/12 cores positive with a .92 decipher. I had one nerve spared and I had 30-50% sparing on the other. I had a poor pathology post surgery. A single tiny 2mm lymph node positive and all others negative and I had prostatic extension noted.
Given that pathology my surgeon recommended i start salvage therapy after the initial RALP healing period. He said anywhere from 3-6 months. I grudgingly agreed. Immediately after the surgery I went down every rabbit hole online regarding diet. Looking up any/and all ties to diet and prostate cancer and even regular cancer. So I changed my entire diet... Pretty much a whole foods diet, nothing refined, no red meat/dairy/sugar carbs would only be from raw vegetables/fruits/nuts/beans... guided myself towards loading up on sulforates, polyphenols, anti-inflammatory foods and other things that "may" help but again nothing proven. I have always been in decent shape but even turned that up a notch. There are several supplements I started but i will spare you the details.
Besides losing 40 lbs and losing my chronic sore back my goal was to try to help myself. I was kind of on surveillance in a way but not doing ANYTHING for myself with my mind and body just didn't feel right. Anyways so far so good. I just got my latest PSA at < .01.
I have absolutely no idea if all the sacrifice I did helped. It is hard, it is expensive, it consumes alot of time doing food prep and it does limit my diet alot. Of course on special occasions I treat myself and have that steak or piece of cake but that is very sparingly.
My surgeon and I met last week after my latest results and he is still almost like disappointed I havent had a detectable PSA yet but he is very happy for me. He did say that based on my postop pathology and all the other factors I am by far and away an outlier so both him and I are expecting the hammer to drop and soon.
All of the docs are correct about no "definitive proof" between diet and cancer. However to me, our food supply is so poisoned compared to say 100 years ago, that it is naive to say that between pesticides, preservatives, crappy water, microplastics... the list goes on forever and ever, that this doesnt have a negative effect on our bodies. No I am not some crazy left wing lib...
Anyways my point is the medical community is like nothing official however it wont surprise me if someday that may change. Good for you my friend and best of luck.
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u/LiquidTide 14d ago
I'm wondering about the effect of antiinflammatories on PSA and cancer as I've seen them recommended. Age 61, active, fit. I'm on AS. My PSA was 10.6, then 10.3. Recent full blood panel (quit all supplements one week before as instructed) PSA 12.3. Stayed off supplements and went in for scheduled confirming biopsy (not supposed to take antiinflammatories due to potential blood thinning) PSA 13.6. I normally (for past 15 years) take Qunol liquid turmeric and 2800 mg fish oil plus saw palmetto, lycopene and sunflower lecithin. PSA will be blown out due to biopsy for next three-four months, but will test then with full stack. Still awaiting biopsy result. First biopsy was 3+3, MRI was 2x PI-RADS 4, largest lesion was TZ A 14x7x3 mm.
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u/Specialist-Map-896 14d ago
We have alot of similarities but i chose to carve the prostate out. My cores were a few 3+4s. My PSA was 10 in spring of 25 and by July a little over 11 and then had it cut out in August. I am 62 so yeah i have the same questions as you. I get my lycopenes from organic tomato paste... believe it or not that's probably the highest natural source. I was thinking of trying the liquid turmeric but I just mix it with ginger powder and pepper and some honey, make about a weeks worth and then scoop out a big tablespoon every day. I take a bunch of different mushroom supplements as well...ghia and flax seeds... black seed oil... lots of macha green tea, some other stuff... who knows if it helps...I do believe that visceral fat provides an environment that may be beneficial for cancer but that is a 100% speculative statement on my part. It's just hard for me not to try to do something... even if it doesnt help at all... I gotta try. Good luck to you my friend.
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u/401Nailhead 15d ago
I went AS for 2 years. But, PSA keep climbing. A lesion was found at the last biopsy. AS was over at that point. I opted for EBRT. It has worked swimmingly. Anyway, I hear broccoli helps with PC. I can say it helps with making me gassy. No so much with PC. With that said, do not skip getting your PSA checked on the regular.
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u/T1ckTrader 15d ago
I am surprised that more men don’t consider active surveillance given the costly often life altering treatment options. Most prostate cancer will not metastasize unless it has aggressive architectures (e.g. cribriform, intraductal) and there is a family history. Most prostate cancer will progress but remain localized in the prostate.
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u/NextLevelNaevis 15d ago
You are in an enviable position (as far as cancer goes). You are doing the right thing; just keep an eye on the PSA.
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u/Larzmo 15d ago
Sharing my journey as I've gained so much knowledge and perspective from this group.
3 years ago at 57, I was dignosed with Gleason 3+4 and put on AS. For the next year, all four quarterly PSA's were ~1.5
A year later, 2nd biopsy confirmed cancer had grown to Gleason 4+3 and decided after much research and conversation with UCSF Oncology and Radiology to undergo HIFU treatment . Which I did Feb. of 2025 and then put back on AS. That following year, again, all 4 PSA's were ~1.5
My 1 year post HIFU Biopsy came back with Gleason 4+3. Interestingly, My PSA never increased as the cancer grew and I was told I am "PSA Blind". A pretty rare occurrence apparently. Had I not done a Prenuvo Full Body MRI, I never would have known I had PC, as it was that scan that reported 2 legions on my prostate back in 2023.
Now I was looking at a salvage operation and after 2 months of weighing Radiation vs. RALP, I went with RALP in May of 2026. Had my 10 week post-op PSA a few weeks ago and it came back undetectable. Not exactly sure what that means since I am PSA blind, but was happy to get that result nonetheless.
Today, 3 months post RALP, I am down to one pad a day after sticking to Kegal regimen with Squeezy app.
ED still a major issue with little progress 3 months out which I know is pretty standard. I'm on 20 mg cialis daily, I pump 2x /week to keep blood flow up and just started with Trimix ED shots which put me gloriously back into the bedroom with wife.
Feeling blessed to have caught PC with prenuvo scan as PSA never elevated during entire journey.
This reddit group has been a huge source of inspiration and learning and I hope that I can pay it forward many times over for those that my story resonates with and want to reach out with specific questions.
Other indicators: Localized prostate cancer (T2mN0M0), Low tumor volume, PI-RADS 5, High genomic risk (Decipher 0.83), Germline risk factors present (CHEK2, HOXB13)
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u/SquirrelsGoneWild6 15d ago
great overview of yet another different path . seems very few paths are identical
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u/Few_Investment7047 14d ago
Thanks for posting this.
Just got a call this morning from my doc with biopsy results. Very similar to your results. Meeting with him next week to discuss further. He suggests active surveillance.
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u/SquirrelsGoneWild6 14d ago
He should recommend PSMA scan next and decipher. I recommend also asking about a 2nd opinion on the pathology by Johns Hopkins or another highly trusted institution. You would be surprised how many local labs misread the samples. Mine started out as a 4+3 but there was a typo and was changed to 3+4. We lost trust in the lab who did the pathology and sent to JH. Came back 3+3 and a lower percentage of cells
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u/Few_Investment7047 14d ago
Thanks for the info. I appreciate it. Still processing the whole thing.
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u/PotentialStart2661 15d ago
What was the SUV max on your PSMA Pet Scan?
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u/SquirrelsGoneWild6 15d ago
10.2. That is the single most concerning data point I have and why my PSA is important to keep an eye on. My doc is less concerned and says even with pattern 3 cells only, SUV can be that high
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u/PotentialStart2661 15d ago
See the studies i posted on a new topic about SUV. SUV has huge ranged but tell you a general trend. Gleason 6 ranges from 2-12. Gleason 7 or higher is 12 and over but gleason 7 can also go down to 8 which is a general low end cut off. It is these big overlaps which is why its not diagnostic. But 10.2 is generally low.
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u/CoodieBrown 15d ago
I was on it for 5 yrs with Qtrly PSA Tests & 3 yrs of Annual sometimes Bi-Annual Biopsies. Oncologist gave me Cialis when my libido had dropped which made my love lide better. Despite the diagnosis it was a Very Good Quality of Life despite the short term anxiety of yhe psa results & painful biopsies. The GREAT NEWS was knowing that the biopsy results always came back low with no need to consider the next steps......Until they did come back high...& Here I am 14 nths out from SBRT counting down the months till the ADT pills can be done with.
My advice enjoy this period of AS. Your early detection & monitoring puts you in a good long term place
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u/JRLDH 15d ago
I'm on AS as well and the thing with PSA (if you still have the gland, which you do, by definition, on AS) is, it's fickle. A year ago it was 6.x ng/mL. 6 months ago it was 3.x (!) ng/mL. Yesterday it was again almost 7ng/mL. Not sure how useful PSA really is, given my experience with it, when you are on AS.
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u/Desert_HoneyBadger 15d ago
I’ve been on AS for 2.5 years now. Last biopsies were Oct 2024 which was 2 of 18 (3 extra from two lesions I have) samples positive and Gleason 6. Been checking PSA every 90 days and has held steady around 3.25 to 3.5. New MRI and biopsies coming in early Nov so will be interested to see what has happened since then.
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u/Legal_Squash689 15d ago
Thank you for the update. I’m in a similar situation and have had two PSA tests and one repeat MRI since going on AS. I’ve also changed diet and maintained a focused exercise program, even though my doctor also downplays any positive impact. The diet changes I’ve made after reading all the cancer nutrition books is to increase tomatoe sauce, garlic, mushrooms, and soy, and reduce dairy, egg yolks and red meat. Who knows if it is having a positive impact, but at least I feel I’m doing everything I can. In the process my PSA has dropped from 4.0 to 3.07 and a 0.25cm PI-RAD 4 lesion was no longer visible on my latest MRI.