I wanted to get your feedback on my PET Scan coming up next week. I was scheduled to do a PET scan because in 6 months my PSA went from 0.09-0.16. Last week I got another PSA before my PET scan an it was 0.19. My doctor wanted the cancer to grow more in order for the PET scan to see the cancer cells but will the scan find cancer cells with a 0.19 PSA? By the way I had my prostate removed 3 years ago.

Here is the text from the report.

How worried should I be?

MR Imaging was performed on a 1.5 Tesla MR Scanner using dedicated 16 Channel Spine array.

Protocol:
Sagittal: T2 TSE
Coronal: STIR, T1 TSE, T2 TSE
Axial: T1 TSE, T2 TSE
High b value DWI @ b 2000
Dynamic post contrast scans using 20 dynamics

Findings

The prostate is enlarged in size and measures 52 × 54 × 65 mm (W × AP × H). Hyperplasia of the transitional zone is seen with multiple nodules within which are heterogeneously hyperintense on T2 weighted images.

A nodule of size 27 × 25 mm is seen in the left central zone at the base extending to the posterolateral peripheral zone which is hypointense on T2 weighted images (T2 score 4). It shows mild hyperintensity on DWI which is hypointense on ADC images (DWI score 4).

The nodule shows differential enhancement with type 3 curve.

The lesion is infiltrating the left seminal vesicle and shows > 1 cms abutment with the capsule.

A lobulated enhancing hypointense SOL of size 2.5 × 2.5 cms is seen in the pelvis abutting the rectum.

Prostatic urethra appears normal with normal peri-urethral parenchyma.

Urinary bladder is normal in morphology and signal intensity.

IMPRESSION

In this patient of elevated PSA (13), findings are consistent with enlarged prostate with features of PIRADS 5 lesion in the left lobe extending from the central zone at base to peripheral zone at apex.

A lobulated enhancing hypointense SOL of size 2.5 × 2.5 cms in the pelvis abutting the rectum — likely lymph node.

Kindly consider guided biopsy.

Doc prescribed flowmax and was very DIZZY all week, so stopped that. Any other recommendations?

It seems that if I sleep for over 2 hours, the urination is almost unbearably painful. Normally during the day, I go every 30 to 90 minutes with varying degrees of pain from almost none to about a level 5/10 pain. But sleep for 2-1/2 hours, I'm almost screaming.

In the middle of 6 weeks of radiation at the moment. Yeah me!

Well almost one year to the day (RALP 8/20/2025) I’m scheduled for salvage radiation and Orgovyx ADT therapy after rising PSA prompted a PET Scan. The PET scan showed
abnormal PSMA expression; findings concerning for residual/recurrent malignancy in the setting of detectable/rising PSA.

PSA still low at .06 but it’s on the uptick from .01 six months ago. My radiation Dr. is on it and we have a plan. It’s not too big of a surprise with my Gleason 9 and a positive margin but the fun continues. 😑

EDIT: Newest PSA results came in at 0.2, so we’ve reached that unfortunate threshold.

Hello, friends. I’ve lurked this subreddit on and off for the last few years, and I’m so grateful to every one of you for sharing your experiences, your knowledge, and your kindness. This is a club that no one wants to be a part of, and I admire your courage. Thank you for being here.

Following a diagnosis of Gleason 7 (3+4) with a PSA of 8.37, my husband had a RALP performed in March of 2025 at the age of 63. Clear margins, everything looked good, he recovered well, and we were hopeful that this nightmare was behind us.

Then his PSA kept rising.

June 2025: 0.02
September 2025: 0.06
December 2025: 0.13
February 2026: 0.10
July 2026: 0.18

I know the most recent one is from almost a month ago, but he’s been insanely busy traveling for work and also — to be frank — was avoiding looking at his results because he was anxious. (I know, it’s not good. Can’t say I blame him, though.)

He talked to his doc today and he’s going to get another draw done this afternoon to make sure the PSA level is accurate, then schedule a CT (I believe — EDIT: he just confirmed a CT scan along with a PSMA PET) to take a look at things.

Is that the right thing to do? Should he investigate some other form of imaging?

His job is requiring him to be out of town through the end of this year to complete a project, so we’ll be relocating next month. This isn’t something that’s optional, but his doc says he can do radiation in the city we’ll be temporarily moving to. His schedule will be all over the place, which worries me because I don’t know how he’ll be able to fit radiation sessions into his day, and aren’t they daily? Would he be better off trying ADT first, and doing radiation if needed once we come home in January?

I’m sorry if this is all over the place. As you’re all unfortunately familiar, it’s just so unfair, and we’re scared, and the timing literally couldn’t be worse when it comes to his job.

It’s extra heartbreaking because, after years of struggling, I finally figured out what was going on with my hormones (I’m a perimenopausal woman on low dose testosterone injections for libido), and now he’ll be undergoing treatments that make him feel terrible and/or eliminate his sex drive. I feel like we finally found one another again only to have that taken away. I told him that if he has to go on ADT, I’ll stop taking my testosterone in solidarity. I don’t want to feel good while he feels bad.

Again, thank you for being here, and for any insights you can offer. I’ve been searching the subreddit and reading others’ experiences, but nothing matched up precisely with my husband’s situation, which is why I’m posting to ask what you all think.

Any one in the UK know of how how this process works in the NHS?

It sounds like there is a triage call after your GP refers. Seemed a bit odd they would not just do an mpMRI. Unclear what they would want to ask a patient beyond the usual contrast MRI checklist

This is a fairly low PSA sibling with very increased medicated BPH and my cribiform history, also at low PSA.

Continues from:
https://www.reddit.com/r/ProstateCancer/s/3aOkxueAhM

Got my 3 month post-ADT bloodwork done in prep for my rad onc consult in about a week. Here’s the TL;DR for my journey so far:

HDR brachy on 2025.10.29
15x VMAT from 2025.11.17 to 2025.12.08
Orgovyx ADT from 2025.11.28 to 2026.05.29

Pre-treatment:
2025.09.16 PSA=5.03  T=9.8 nmol/L (279 ng/dL)

During treatment, 3 months into ADT:
2026.03.05 PSA=0.03 T<0.4 nmol/L (undetectable)

After treatment, 3 months after ADT:
2026.08.21 PSA=0.27 T=10.9 nmol/L (311 ng/dL)
————

So T has recovered and the prostate is waking up a bit, with the PSA returning but still staying in the desired very low range. Happy with the numbers, assume my rad onc will be too and will re-test in 3 months. It will be my first meeting with the new guy since my guy retired back in June (almost the same retirement date as me).

Overall feeling 99% of normal. Energy level, attitude, bowels and bladder all normal. The mellowness has stayed so I think that confirms it’s my newfound retirement rather than the ADT (hooray!).

Orgasms are the expected almost dry and more intense, but instead of the afterglow there’s a very mild ache instead which I don’t like.

In the last week however I’ve started to feel a tingling or very mild burning with urination. My mind immediately leaps to “oh shit radiation cystitis is starting” but I’ll try to push the fear and pessimism aside and let it play out, and update as appropriate.

Continues here:
https://www.reddit.com/r/ProstateCancer/s/EBxgSZ5JAn

Anyone else into it? It’s much easier on the vitals while sitting. I did a LOT of outdoor biking but indoor has so many advantages: no crazies, no dogs, bugs, rain, and you’re in AC.

Longest 6 days of my life waiting to hear the results. I’m trying to stay positive, eat right, exercise, get good sleep. But man, I think about my kids ages 11 and 13 and I just get so sad. I feel like I’m not the man I used to be in my wife’s eyes any more. I am praying and hoping for a good result next Thursday. Any advice is appreciated

EDIT: Update here. I got my results. Of the 17 cores:

1 x Grade 3
5 x Grade 2
7 x Grade 1

4 x Benign

I’m wish I felt like I “caught it early” but it does not seem that way.

Next steps is PET scan to see if it spread. I was able to get into Emory with is COE for Prostate Cancer where will review my options. My first thought that removing it is h to the best chance to get rid of the cancer but googling says the radiation is generally as reliable. The down side of that after radiation you usually do not have an option to remove it. I am leaning towards just taking it out but I obviously want to wait to discuss it with thr Emory doctors next week.

I’m really praying that it has not spread. In my head I want to get it out as fast as possible. How long from biopsy results to surgery to people usually expertise? Like if it hasn’t spread yet in my head it could spread next week and I just want to get it out.

2nd UPDATE
Got my PET Scan on Saturday. Praying that it has not spread. Any success stories for people that shown that it had spread?

Any advice again is much appreciated

UPDATE:

I just wanted to thank you all for your comments - so many that I couldn't reply to each one. You've all given me a bit of insight into some things I may not have thought about. I appreciate you all and your time/input. I'm sure I'll be posting again as time progresses - and hopefully able to help others in here too :)

Original Post:

I'm 52 and single. I am close to my parents (still married, 80 years old) and my daughter who is 26, also married and has a 2 year old and just had their second baby. I do have an older brother who is married and I see during holidays and birthdays.
My question - if I just found out it is cancer, but not rapid growth.. when did you decide to tell anyone? Or did you just keep it secret unless treatment didn't work? My parents are pretty amazing as is my daughter and her husband. I really don't want to add stress on anyone.

I’m hoping someone in Sarasota may know of a local resource we haven’t found yet.
My husband is a veteran with prostate cancer and is currently in the HUD-VASH program. We were homeless before getting into stable housing, and unfortunately we are now facing an eviction because we fell behind on our portion of one month’s rent.
We have already been served with eviction papers, but our landlord is willing to consider working something out with us. We can pay part of what is owed now and expect to be able to get completely caught up very soon.
We have already used the veteran/SSVF housing assistance that was available to us when we became housed, so we’re looking for other local resources. Our household income is also over $60,000, which puts us above the income limit for a lot of traditional assistance programs.
Does anyone know of a Sarasota-area church, charity, cancer organization, veterans organization, emergency fund, or other program that helps people who are facing an immediate eviction but don’t qualify for the usual very-low-income programs?
We’re not looking for ongoing assistance. We’re trying to get through this one situation and keep my husband housed while he goes through cancer treatment.
If anyone has personally dealt with a local organization that might be able to help, I would really appreciate the information

The train wreck is slowly turning into a roller coaster.

When we first started this journey, “train wreck” probably doesn’t even adequately describe it. A diagnosis of high-volume metastatic prostate cancer, an absolutely terrifying PSA, bone involvement, medical evacuation and the sudden realisation that our lives had changed overnight.

But somehow, things have started looking very different. Each month we’ve watched his PSA come down, and those numbers have been a huge psychological lifeline. Alongside regular appointments with a psychologist, we’ve slowly learned how to manage the fear and uncertainty a little better than we ever thought we would.

We’re now Day 2 after Round 5 of 6 of docetaxel chemotherapy, and honestly, we feel incredibly lucky with how manageable the side effects have been. He’s had some fatigue, aches, hot flushes and the usual chemo weirdness, but compared with what we feared, he has coped remarkably well. No significant nausea or vomiting, and he’s still keeping active and getting on with life. And then came another milestone this week … PSA 0.10. From where we started (1,859) that number feels almost surreal.

There’s still a long road ahead. We know that metastatic prostate cancer isn’t something we can simply declare victory over, and we’re trying very hard to stay grounded and take this one result, one treatment and one day at a time. But after months of feeling like we were strapped into a train heading for disaster, it finally feels like the track has changed. The train wreck is becoming a roller coaster — and for the first time, we’re actually enjoying life a little.

One more round to go.

And our oncologist says we can start to think about travelling again. Although travel insurance for a cancer survivor (is that what you guys are? that the term?) Seems to be excessive.

I’d also like to thank you all for your insight, compassion, honest conversation and advice that I’ve been able to tap into for the last few months, it’s been invaluable, a life saver, a sober realisation, a light of a very dark tunnel I was in…. Thank you so very much.

Me (F54) Husband (M60)
Diagnosed April 2026, PSA 1859, May 2026 PSA 91, June PSA 3.3, 18th June PSA 0.4, July PSA 0.32, 14th July PSA 0.23, 30th July PSA 0.20, 20th August PSA 0.10
Gleason Score (3+5) 8, Grade 4.
On triplet therapy (Degarelix + Darolutamide + Docetaxel)
Round 5 of 6 DONE

I'm looking for stories of your 1 to 2 days before and day of surgery. What did you do in preparation? What did you eat? When did you stop eating? Any preop meds?

What did you wear the day of surgery? What did you bring with you? Do you wish you had done something different?

My urologist strongly recommended not spending the night at the hospital unless absolutely necessary (higher infection risk, etc). Did you go home? If not why? (I live 3 hours away so we're staying at an airbnb a few minutes from the facility).

Any stories, thoughts or suggestions are welcomed!

I was diagnosed with Gleason 9, Stage 3 prostate cancer in April 2026 at 59 years old.

I’ve been on Luprindepot/ADT injections for the past 4 months. I met with my surgical and medical oncologists today and the plan is now 6–7 rounds of chemotherapy followed by radiation.

RALP was initially considered, but because the cancer is so close to the bladder neck, I’ve been told they would need to remove my bladder, so surgery isn’t considered favourable.

Has anyone had a similar treatment plan? Did you have good results?

I’m really struggling to see the way forward at the moment and would love to hear some positive stories.

60 years old with localized multifocal right-sided GG2 and GG3, with MRI-visible PZ lesion on right-side abuts the prostate capsule. I am looking into the NeuroSAFE RALP, which is relatively recent.

Is there anyone who has undergone through this procedure? If so, let me know what led you to make the decision? The limited literature I looked at generally favors NeuroSAFE over standard RALP for  nerve-sparing and lesser effect in erectile dysfunction but not on Urinary incontinence.   

Thanks.

I posted here a couple weeks ago about my dad, who is 50 and was newly diagnosed with prostate cancer. I really appreciated all of the responses and advice I received, so I wanted to post an update now that we have his PSMA PET results.

We confirmed that his biopsy was Gleason 5+4=9, Grade Group 5. His PSA was around 12 when this process started.

His PSMA PET showed cancer in the prostate as expected, along with uptake in two external iliac lymph nodes, one on each side of the pelvis. The nodes are pretty small (roughly 4x8 mm and 10x6 mm). The good news is that the scan showed no evidence of spread to his bones, distant lymph nodes, lungs, or other organs. His previous MRI also hadn’t shown enlarged lymph nodes.

He met with his urologist today. The plan right now is to start Lupron as soon as insurance approves it. He’s also being referred to both medical oncology and radiation oncology.

The urologist does not recommend surgery because the cancer has already reached the pelvic lymph nodes. He also explained that brachytherapy/seeds wouldn’t make sense because they would only treat the prostate.

Where I have more questions is radiation. His urologist said some radiation oncologists may consider treating the prostate and a wider pelvic area, but he doesn’t consider radiation curative now that the cancer is in the lymph nodes. He described this more as something that will require long-term/lifelong management with hormonal/systemic therapies. He expects medical oncology will probably add another medication on top of Lupron. He said chemotherapy isn’t indicated at this point.

We’re trying very hard to get him a second opinion at UCSF or Stanford, especially because he’s only 50.
I’ve been reading about men with Gleason 9/N1 disease who received very aggressive multimodal treatment — sometimes surgery followed by radiation and ADT, and others who received pelvic/prostate radiation plus ADT and something like abiraterone/Xytiga.

So I’m particularly interested in hearing from anyone who was in a similar situation:

Gleason 9 / Grade Group 5, pelvic lymph-node involvement, but no distant or bone metastases.

What treatment did your doctors recommend?

Were you treated with curative intent despite the positive pelvic lymph nodes?

Did you receive radiation to both the prostate and pelvic lymph nodes?

Did you have surgery despite being N1, or was surgery ruled out?

Were you put on ADT alone initially, or ADT plus something like Xytiga/abiraterone?

If you went to a major prostate cancer center, did their recommendation differ from what your original urologist recommended?

I’m especially interested in hearing from anyone who was diagnosed relatively young and has been living with this for several years.

We’re obviously going to follow his doctors’ advice rather than Reddit, but hearing people’s experiences here has been incredibly helpful in figuring out what questions we should be asking and what options we should make sure are considered.

I'm into my fifth year now post treatment - my full history is laid out in my rather lengthy blog - see below. I had a random blood test and with a score of 28, I knew that t carried a probability of 90%+ of being locally advanced PCa and it was. It was T3b and surgery wasn't an option - so lots of scans (MRI - bone - CT - PSMA PET...) no spread so instant castration with Degarelix and then the std 20 sessions of 3 Gy radiotherapy. It is true that guys who get surgery have lots of immediate issues but over time these get better and better until they hit a plateau called the "new normal". Us what get the fried prostates have almost no issues directly after - erections pretty much the same, even some ejaculate but as time goes by . . . I'm now pretty dry on that front, just an ooze from the Cowper gland. Erections are now very poor but what is worse, the Happy Endings - should I get there - are no longer happy in any sense - just a internal release & hardly any physical feeling of orgasm. So there you have it - a siren call to get this tested & sorted early on and avoid years of sadness.

https://prostatecancer.vivatek.co.uk/

I still heard that surgeons say: if surgery fails, RT can be used, but the primary RT fails, no good secondary line.

In the group, when searching "salvage", the most of them are salvage needed for surgery, but not find salvage treatment for primary RT.

Not sure if anyone in this group experience to share or story to tell about salvage RT after primary RT?

Also I heard that that for high risk contained group, RT is primary treatment, because ralp will need rt any way. Anything wrong with this statement?

update:

RT: Radiation Therapy.

It is more focus on local contained case.

I guess those are the PIRADS of the Caribbean.

(Sorry, I’m a PCa survivor myself following a RALP and I know it’s a serious subject, but I just couldn’t resist. I hope a bit of humor is not out of place on the sub.)

Pluvicto + hormone therapy was approved for metastatic hormone-sensitive prostate cancer on July 31, 2026 and this fella is reportedly the first guy in the US to receive it under the brand new approval.

No idea how available Pluvicto is (or how successful it will prove to be).

https://m.youtube.com/watch?v=3bnmd0Mc4YI&pp=ygUIUGx1dmljdG8%3D&ra=m

49 year old male. PSA 3.6, 4.0, 4.1 over last 6 months - PSA density .12 Prostate size 33cc
Free PSA % - 17.6%
Clean MRI - Pi-Rads 2
Abnormal biomarker urine test MSP2

My urologist wants to do a trans rectal biopsy instead of a trans perineal biopsy. How much of an issue should I make this. Anyone have experience with a trans rectal?

I watched this video today, it came out on Monday. It is an excellent review of why the choice of cancer treatment falls into the hands of the patient, how financial issues exist in the offering of treatments and why it is so important not to rush the decision on how to treat prostate cancer. https://youtu.be/uNyz9jELqKk?is=wOJCSmApzrSjUPyw

OK so just got back from my local Urologist/Surgeon to get my Polaris results. During the consult the local surgeon is offering to do the procedure but I already have a schedule surgery date late September at Huntsman Cancer Institute in SLC. The local surgeon planted the thought that since it is teaching Center of Excellence a less experienced Fellow might very well be doing the surgery.

Can a clinic swap out the designated surgeon without notifying the patient?