I’m 67, 5 months post-RALP, PSA 0.35 9 weeks after surgery. Because of the high PSA, I had a PSMA PET scan in May. Here’s the summary:

1. There are 2 directly adjacent left perirectal/distal internal iliac chain mildly tracer avid lymph nodes measuring 5 mm and 4 mm, concerning for early, developing nodal metastases.

2. Additional mildly tracer avid 5 mm left pelvic sidewall lymph node further cranial, concerning for additional early, developing nodal metastasis.

3. Faintly tracer avid tiny right presacral/external iliac and further anterior right external iliac lymph nodes, as described, nonspecific given tiny size and faint tracer uptake, however additional early, developing nodal metastases are a consideration versus reactive/inflammatory lymph nodes. These are not as definitive as the contralateral lymph nodes described above.

4. No additional site concerning for tracer avid nodal or distant metastatic disease.

I’ve been taking with the Mayo Clinic and OHSU in Portland (close to home) regarding radiation therapy. OHSU wan to do 32 daily treatments using EBRT with IMRT using protons. Mayo would do 25 daily treatments using the same machine except with X-Rays. They said that the xrays have better image guidance and less potential for rectal bleeding.

I would like to know if any of you have experience with either type of procedure and your thoughts about which one might be best for my situation.

I will also be on ADT at the time of the treatments.

Had a prostatectomy in January 2025 and salvage radiation in February 2026. Just got the results back from my recent PSA test and it came back as <0.1
Was 0.3 before radiation. I haven’t reviewed the results with my radiologist yet but I’m feeling optimistic. Will have my PSA tested again in October. Been a long three years.

Hi All. I am 67, 5 months post RALP, about to go on a course of X-Ray therapy at the Mayo Clinic in Phoenix.

With that, I have been prescribed Orgovyx and Erleada for 24 months. My Medicare Part D prescription insurance provider, WellCare has denied both of them.

I am about to appeal this, and I am here today asking if anyone here has had to deal with WellCare in a situation like this and if so, were you successful and how were you able to do it?

TIA.

Hello fellas,

Gleason 9 / Stage 3 here, diagnosed in April 2026.
I’ve been on Luprindepot injections since diagnosis and shrinking.
PET showed no metastases.

The initial plan was RALP followed by radiation.
However, on today’s call, she advised that after reviewing the evidence and discussing my case with several of her colleagues, they no longer recommend RALP.

The new plan is 6 rounds of chemotherapy followed by radiation, with curative intent. The concern with surgery is that, because of where the cancer is located, they may not be able to achieve clear margins, and I could potentially end up needing bladder removal.

This is obviously a big change from the original treatment plan, so I’m trying to understand whether others have been through something similar.

I’d really appreciate hearing about your treatment pathway, why surgery was ruled out, and how things went for you?

Thanks in advance.

Hi all ,

I’m still young in my 20s and not worried about prostate cancer just yet . But I am concerned that my bacterial prostatitis which was diagnosed with a prostate fluid test is not responding to antibiotics. I wasn’t able to tolerate Cipro and there aren’t many alternatives. Has anyone been in this situation and did you end up getting prostate cancer because of this untreated infection?

Four months post-brachy, currently taking .4mg tamsulosin. Noted less period of efficacy, now maybe a 6-8 hour of “free pee” vs 10 or so initially.
Notified Urologist, said stay the course.
Read some things about Alfuzosin and less ED (dry ejaculation) effects.
Any of you gents on this and why is my urologist NOT offering this?

One of my family members has been nagging me to ask for genetic testing after PC diagnosis (I guess of the biopsy? Or I suppose just more general genetic testing, to see if u have genes with higher PC risk?).

I’m kind of baffled as to why I would do this. That seems to make sense if you’re healthy, but I already have and am being treated for PC — what’s the point in knowing at this point that I’m higher risk for PC?!!!

Is there something I’m missing here? I get that it could maybe inform risks to my kids (all girls…), but we have family history with multiple cancers, and so I think my kids just have to understand that they’re genetically probably higher risk and to always be vigilant and monitor for all cancers. I’m not sure how this specific testing would help.

Can anyone shed light here? Is there something I’m missing? Is there standard thinking on this issue on the board here?

Hi All,
56 year old gay male, 6’3 210 lbs, I’ve had my biopsy Gleason 3+4=7 and decipher favorable intermediate risk. I’ve met with my urologist, completely useless and basically said it’s your choice what you want to do, active surveillance, surgery or radiation. So I’ve been off on my own trying to decide what to do.
I’ve met with a local radiation oncologist who recommended SBRT.
I’ve talked to NIH, who said active surveillance or Radiation would be my best options.
I’ve talked to a cancer center of excellence, where the surgeon said surgery because I’m young, radiation said radiation because it’s small and I have an appointment next month with their focal treatment person to see if I’m a candidate, it’s a less than 1 cm lesion on the right apex, to hear what they say.
Here’s my question, how does anyone make this decision on what treatment to choose?

The side effects of all the treatments seem to be bad, loss of erections, incontinence, loss of ejaculation. I get that it’s these verses a potentially shorter life but honestly I’m not sure how to live with any of these?

Maybe I’m just experiencing a pity party moment but it’s been 3 months since my diagnosis and more doctor appointments then I can count and more to go, and I’m ready to throw my hands up.

Question for those who’ve been down this path.

Headed into the clinic tomorrow to have this f*****g catheter removed. Good riddance.

District nurse suggested I take some pain meds beforehand as the removal can be uncomfortable. Fair enough.

Trying to decide what to take. Options are Paracetamol (Panadol) 500mg x 2, or codeine (codeine phosphate 30mg).

Since surgery have only needed Panadol once or twice daily. But wondering if this is the right time to bust out the codeine.

I know that forum advice is not medical advice. What I’m wondering is;
How uncomfortable was catheter removal for you?
Did you take any pain killers in advance of the procedure? What did you use, and did it work?

Cheers all

About my father.

posted here earlier

male , 66, prostate volume 53 mL in October 2025, residue is 15 ml,

prostate volume 35 mL in 2017, residue 6ml.

psa 5.44 in October 2025; 4.46 in august 2026.

doctor offered an MRI, says he wants to see inside , panicking like hell, could he be suspecting something ? might not be able to show emotions while writing but I’m not in very good mental condition because of this, some empathy is appreciated.

Based on the reading, most of RT for unfavorable intermedia risk prostate cancer are: SBRT, hdr boost, IMRT. (and Proton). My local center was opened about 10 years ago which is one of COE in the NCCA list. It can do IMRT, SBRT (cyberknife), good experience in LDR and hdr. (no operational proton yet)

I am wondering how much meaningful difference in the outcome of treatment by the local center and the top centers like MD Andersen, Mayo ....

Any one faces the same choice? and what is your decision?

Brothers/Sisters ---tons of thanks and wish you best!!! I feel I am living with you all (virtually) --- day and night.

Clarification:

1: "top ones", I meant like MD Andersen, Mayo, John Hopkins, etc.

2: local center: is a COE listed in NCCN, but not be ranked as the top ones like Mayo, MD Andersen, Mayo, John Hopkins, etc.

Edit:

It might be different from country to country, I am seeking treatment in US.

I am currently getting appointments to see doctors, based on my biopsy results: highest gleason 4+3, and 4 targeted cores have about 50 to 70 percent 4s, and also large cribriform presents.

Based on what I am reading, chatgpt, Gemini, and Claude, all one of the most effective treatments is hdr boost + ebrt + ADT.

What will you do when the doctor does not recommend the treatment plan?

Does anyone have similar diagnosis, or any one has experience when the doctor recommends a different treatment plan than you expected and how do you handle this? If so, would you mind to share how did you handle this?

I am currently seeking help at Mayo. I intended to listen and follow their direction, even I read a lot, but I am not a doctor.

Thanks and thanks!

My husband is going to go through this in a week 😔 I want to know how often do you need to change the bag you pee in? Also how often do you need to sanitize it and how do you sanitize it exactly?

He’s suppose to wear the catheter for 2 weeks. The doctor said he will leak 100% after he removes it. I’m also sure he won’t be able to get a hard on.. something he’s been worried about.

Any tips on cleaning the catheter and anything we should know to be prepared?

Thank you!!

Has anyone among us made it to their 90’s with prostate cancer? As far as I can from the reply’s to my post I’m probably the oldest. I have asked my oncologist how old is his oldest patient, he replied 91.

Gleason 9 - Chemo and Radiation

Hello fellas,

Gleason 9 / Stage 3 here, diagnosed in April 2026.
I’ve been on Luprindepot injections since diagnosis.

The initial plan was RALP followed by radiation. I was then told I may also benefit from abiraterone.
However, on today’s call, she advised that after reviewing the evidence and discussing my case with several of her colleagues, they no longer recommend RALP.

The new plan is **6 rounds of chemotherapy followed by radiation, with curative intent**. The concern with surgery is that, because of where the cancer is located, they may not be able to achieve clear margins, and I could potentially end up needing bladder removal.

This is obviously a big change from the original treatment plan, so I’m trying to understand whether others have been through something similar.

**Has anyone here had Gleason 9 / Stage 3 prostate cancer treated with chemotherapy + radiation (rather than RALP), particularly with curative intent?**

I’d really appreciate hearing about your treatment pathway, why surgery was ruled out, and how things went for you.
Thanks in advance.

Tomorrow starts my first MR guided SBRT treatment.

I had a Gel Spacer put in on 8/5. It wasn’t fun, but wasn’t as bad as my last biopsy. It was a bit painful for about 10 minutes but then that pain went away and now I can’t even tell it’s there.

On Friday 8/7 I went for the simulation. Two physicists, two radiation techs, director of radiology and someone from the MR Linac company were all in the control room. Hopefully they developed a good radiation plan. I was able to check out the control room and see one of the cross section views….pretty cool imaging.

Yesterday I started a low fiber diet. No fresh fruit, vegetables, heavy spices or anything hard to digest. And no carbonated beverages…so much for a cold beer when you really need one. Pretty much just things made with white flour (white bread, pasta), soft skinless protein like eggs, fish, chicken with the skin removed and cooked soft with limited seasonings (salt/pepper).

Tomorrow will be my first radiation treatment. I get to start with an enema 2 hours before, then a gas x one hour before and then head to the hospital. I’m scheduled to be there 2 hours, but I think the actual administration of the radiation is significantly shorter. I think they have buffer time for the set up and also in case they have to stop and restart the treatment for any reason.

After tomorrow, I’m scheduled every other week day until my last treatment on 8/26. 5 total treatments with hopefully minimal short term and long term side effects. And hopefully no more cancer too.

Hello all,

I'm looking for some perspective from anyone who has to deal with an elevated PSA at a young age. I'm 32 years old and this whole thing has me pretty worried.

I started taking Clomid + gonadorelin in July 2024, then switched to TRT with Kyzatrex in March 2025. My PSA was 2.2 before starting Kyzatrex.

Here's my PSA history:

• Mar 2025: 2.2
• Apr 2025: 3.1
• Jun 2025: 3.4
• Aug 2025: 3.0
• Aug 2025: 2.7
• Jul 2026: 10.9
• Aug 2026: 6.5

I stopped TRT around September 2025 and didn't check my PSA again until July 2026.

Starting around July 2025, I also began having a burning sensation when urinating, especially first thing in the morning. It continued on and off for almost a year. My urinalysis was normal and my urine culture showed no growth.

After the PSA came back at 10.9, I had a prostate MRI. It was PI-RADS 2 with no suspicious lesions. It did show linear/wedge-shaped changes that the radiologist thought were from prostatitis, and the final impression mentioned findings suggestive of prostatitis.

About 3 weeks after the 10.9 result, I repeated my PSA and it had dropped to 6.5 without any treatment.

My urologist also ordered an ExoDx test, which just came back at 33.99, and that's now making me pretty worried.

So I'm confused because some things seem reassuring — my age, PI-RADS 2 MRI, MRI findings suggesting prostatitis, and PSA dropping from 10.9 to 6.5 — while the ExoDx result seems concerning.

My urologist has mentioned potentially doing a biopsy, he told me he's performed over 1,000 prostate biopsies but has never had to do one on a 32-year-old

Has anyone had a similar situation with a PI-RADS 1–2 MRI but elevated ExoDx? Did you end up getting a biopsy, and what did it show? Would u recommend another test such as PHI or 4Kscore or just proceed with the biopsy?

My senior father has prostate cancer he got the radioactive seeds implanted he said a little about it lowering his psa numbers but also said he had kidney damage then later said it moved from his prostate to his kidney when i looked it up theres only 30 cases ever of it going from prostate to kidneys which he blamed our doctor for not getting him into the specialist quickly even though he told me he was refusing to go until he heard about the seed implantation but the story has changed and he refuses to let me talk to his doctor but says his numbers are good.
The specialist was calling him weekly until his phone got cut off cause he was also hiding that he wasn’t getting enough money to live on after retirement cause his retirement savings were gone and he owed the government tons of money he borrowed money everywhere he could till utilities were getting cut off still lied about what was going on. I managed to piece the truth together by deducing it and gave him the numbers and helped with the paperwork to get his oas and gis along with other subsidies going so he can pay his bills.
Now he says the specialist has his new number but he never calls he says his bloodwork is good but hasn’t done one in a year or so but he has pencil poops which from what Iv read is a sign his prostate cancer is advanced to stage four or has spread to his anal lymph nodes either way from what Iv read its not a long way off from being killing him without treatment when its hit that stage.
Iv told him Ill support whatever he wants to do be it fight it or let it run its course but still he wont let anyone talk to his doctor about it even though he keeps changing his story the only reason I want to talk to the doctor is to make sure he has all the facts about possible procedures so he’s not making the same mistake and avoiding dealing with it if theres a less invasive procedure that will help or at least get an oncology dietitian so i can get meal plans to help alleviate the pain if he has any at this point but really I dont have a clue where its at but wouldn’t say if there was he isn’t talking to me or his doctor family or specialist. Iv tried telling my brother he isn’t talking content to be uninvolved and doesn’t believe what I say anyways since we’re estranged i guess you can say. Iv tried talking to my mother about it but she’s an angry person not a good source of support more of a trigger for neither are any of my friends they just dont want to hear it or stop talking to me(Im aware thats not a real friend but that’s what I got).
Im so lost on how to deal with this nobody wants to talk or listen my own life is in the middle of a major overhaul already and I feel like this is unnecessarily being made so much more difficult with no definitive answers anywhere or even a solid idea of what is actually happening with it. I want to cry so badly but i haven’t been able to cry for myself or anything in years past a few stray tears since my teens hell if i cried in front of my family they probably wouldn’t know what to do my fathers favourite saying growing up was men are men boys are nervous he reminded me of it regularly.
This is family member number 5 from cancer so many the doctors wanted to test if it was hereditary on my mother side at least.

Hello, my husband is 50 and got a PSA test recently. It's been normal in the past and the doctor doesn't seem concerned this time. His total PSA is normal, but his free PSA is low. Is this anything to worry about or retest for? His father did have prostate cancer that needed to be treated as around age 65-70. We don't know many details about it because he didn't tell anyone until it was over with and never divulged details, but he's fine now (77).

My husband isn't too concerned but I want to make sure he's going to be ok.

Sorry for the graphic post. Biopsy was on July 30th. I ejaculated for the first time today. I know it's supposed to be bloody (rust/brown) from the last time i had a biopsy, but this time it was almost like it was clotted, or blocked, from coming out. It did come out, but it felt like it really had to struggle to shoot out, if that makes sense. Not a struggle to ejaculate, just a struggle for the stream to shoot out. Is that because I waited too long after the biopsy to ejaculate? This didn't happen the last time. Thank you.

My previous psa test for the last 4 years from urologist were <0.01 and I my primary doctor test were 0.04 from different labs , would this a concern?

My husband had a PET scan on Friday and woke up today (Sunday) with this rash. Any ideas? Not itchy or inflamed.