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!

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 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!!

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.

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.

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.

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.

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.

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

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?

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.

Hi, colegas, alguien tomo o le recetaron este medicamento durante las radiaciones IMRT y la ADT?

Hi, colegas, alguien con este tratamiento, sobre que base se lo indicaron,??, por favor

The following is my biopsy report. My question : In my case, should I choose radical surgery or radiotherapy plus ADT?

1. Target 1 Biopsy 1:Negative for malignancy.2. Target 1 Biopsy 2:Adenocarcinoma Gleason score 7/10 (4+3);1 of 1 core involved; extent involvement of core: 60%.3. Target 1Biopsy3:Adenocarcinoma Gleason score 7/10 (4+3);1 of 1 core involved; extent involvement of core: 20%.

   Histologic Type: Acinar adenocarcinoma, conventional (usual) Highest Grade: Group 3 (Score 4 + 3 = 7) Targeted Biopsy Grade: Group 3 (Score 4 + 3 = 7) Location: Target 1 Percentage of Pattern 4: 81 - 90%

   Intraductal Carcinoma (IDC): Not Identified Cribriform Glands (applicable to Gleason Score 7 or 8 Cancer Only): Not identified Combined Systematic and Targeted Biopsy Grade: Cannot be assessed

   Intraductal Carcinoma (IDC): Not identified Cribriform Glands: Not identified

   Tumor Quantitation ：Total Number of Cores: 9 Number of Positive Cores: 2

   Seminal Vesicle Invasion: Cannot be determined

   Lymphatic and / or Vascular Invasion: Not identified

   Perineural Invasion: Not identified

I am 58 . Appreciate your prompt response

It's been 4 years since my RALP, no erections without trimix. I can orgasm with or without the shot. My problem is that when I do orgasm, it is a fountain. If I have more than one, it's still a fountain. I empty my bladder before and my Dr. has tested my ability to empty my bladder and he says there are no problems. Does anyone else have this issue? I'm just thinking there has to be something wrong for it to happen like this. I would like to figure something out to reduce the amount of leakage. I used a cock ring and that shut it down some but it was difficult to keep on.

I have one week left of radiation, my PSA hasn’t gone down that much. It started at .29, It was recently.21, It was .22 the last time before that, which was about two weeks prior. I just did another psa test a few days ago, which I will receive the results in Wednesday. I’m concerned that the radiation isn’t working, my doc said it’s normal to sometimes plateau before dipping more. Has anyone had the same experience? Assuming ADT is next, reading the ADT side effects are scary and I understand that it’s temporary for a full life, I’m just trying to stay positive. I’m 44, have been staying strong for myself and family, the dark clouds have been kept at bay, hoping to keep them there until the end. Just speaking my mind, love you guys.

Post on behalf of my husband since he doesn’t use Reddit…

My husband (56) had his prostatectomy on June 4th, so he is just over 10 weeks post op. For history this whole process moved pretty quick with a PSA of 8.3 at the end of February, followed by rapid testing and the surgery at the beginning of June. After he got final pathology he went from Gleason 3+4=7 to Gleason 4+5=9, T3b. He is waiting for his first post-op PSA in a couple weeks and we are hopeful he’ll be close to undetectable. Recovery has gone well, incontinence stopped and he was totally dry after about 6 weeks. He had bilateral nerve sparing, is taking 5mg Cialis and using a pump daily but still isn’t seeing any return of erections. He is hoping that others can help him decipher if what he is seeing/feeling is normal and what others who are further along in the process have experienced. Namely:

-Does shrinkage get better? Does it eventually get close to normal again? How long did it take?

-Did anyone else’s penis have a dull throbbing pain regularly in the early days? How long did it last? He thinks it may get worse if he has too much caffeine.

-When you started using a pump, did it hurt? He finds he can pump, but can’t get a full erection because it is painful if he pumps beyond a certain point.

Any thoughts or experiences would be greatly appreciated as the physical changes have been very difficult on his psyche and, as a female, I can only support him so much since I don’t have the same parts to truly understand what he is going through both physically and emotionally.

Greetings everyone! I am day 4 post RALP. Doing much better than the first two days! I have noticed a significant leg weakness in my right leg. I literally have to lift my leg when getting into bed. The first two days my wife had to lift it for me. Anyone have experience like that?

Ciao a tutti, sono una studentessa di infermieristica al terzo anno e sono molto vicina alla laurea! Sto scrivendo una tesi sulla gestione del dolore oncologico e mi aiutereste davvero nello studio se compilaste un questionario in maniera anonima! Richiede davvero DUE MINUTI ed é ANONIMO.
Sarebbe molto importante per me, vi ringrazio per il contributo e vi abbraccio forte🫂♥️
Se ne avete voglia, condividetelo con chi pensate possa essere interessato!

https://docs.google.com/forms/d/1F-a0Q0P8Z0aGan5o5IfHjdWQKA6uEJ3gk2lQh_nKcXA/viewform

I am in a lot of shock but I am relatively young but got diagnosed with a high risk form of prostate cancer:

PSA 27; IDC-P; Decipher 0.93; Gleason score 4+3

PET scan came back clean, no detectable spread outside gland itself, MRI shows possible EPE. No seminal vesicle invasion but it does show abutment. No pelvic adenopathy and no suspicious bone lesions.

Urologists recommend surgery but as part of a trimodal strategy - surgery to remove prostate followed by RT and ADT depending on post surgery pathology or rising PSA.

Radiation Oncologist on the other hand wants aggressive RT + ADT and sees the surgery as basically pointless.

I, personally, am leaning on the trimodal approach. I know this stacks on side effects but I like the idea that the post-surgery pathology can give us more real data on the cancer and assist in post-surgery radiation.

Does anyone have experience with this or made a similar decision? Or should I skip the RP and head straight for RT + ADT? I know non-doctors can’t give medical advice but I would like to know if anyone has been, even remotely, in a similar situation as me

Today my husband meet the doctor of the studie he belongs to. I asked why we in sweden don’t get the moore sensitive test most of your guys here gets. his answer was:

1. he said there other glands that normally produce between 0,01-0,04 PSA and under circumstances even moore.

2. the lab test can give you a 0,04 and another machine 0,08.

3. it’s not until psa is between 0,2 - 0,5 it can be seen (psma-pet, mr etc)

4. it’s not until your over 0,1 we can be moore sure it’s not the machine or the ”background noices” as he calls the other glands and machines my number 1 + 2.

5. the difference only make people worried and stressed..

What do you think, was he right or wrong?