r/ProstateCancer

I have a big grade 8/9 lesion 9mm right side near boundary. The scans have shown no metastasis but I don't think they are reliable according to a search so microscopic movement likely. Rest of prostate on biopsy insignificant cores (whatever that means!). They (NHS) have put me on Orgovyx but yet to have first PSA on that. Last PSA was 5.8 but rise was highest couple of years (1.7 in 2022). HIFU not an option here so I'm guessing more ADT and radiation to allow for possible metastasis not detected. I have no symptoms and otherwise healthy at 79yrs with eGFR of 72. Anyone with. similar experience?

Recently joined the club none of us should have to join. No sxs whatsoever. No fmhx. Debated MRI guided SBRT but chose RALP. 3 weeks post RALP (3+4) FIR. I want to thank all who have posted before me. The mental aspect has been worse than the physical aspect. The physical aspect has been rough but making some progress. Nearly 30 year career as a PCP. If I can be of any help in anyway please let me know. We are with you.

My PSA values after RALP have been:
7 weeks: 0.22 ng/mL
11 weeks: 0.20 ng/mL
13 weeks (different lab): 0.18 ng/mL

So far, the PSA has remained around 0.2 without a confirmed upward trend.
My pathology was pT2, Gleason 3+4 (only 6–10% pattern 4), no EPE, no SVI, no LVI, no cribriform or IDC, but I had two positive apical margins (4 mm. & 1 mm) with Gleason pattern 3 at the margin.

My surgeon believes the stable PSA may still represent benign residual prostate tissue (full nerve sparing) especially because it has not shown a clear rise. He has ordered a pelvic MRI and another PSA in September.

His plan is that if the PSA starts to increase, he will arrange a PSMA PET within about a week and expedite a consultation with a radiation oncologist within a few days, so treatment would not be delayed if needed.
I know it is impossible to know at this stage whether the PSA is coming from benign tissue, microscopic local cancer, or a mixture of both. I’m interested in hearing from anyone who had a persistent but initially stable PSA around 0.2 after surgery. How did your case evolve?

My husband is currently meeting with doctors about options and the main difference that’s making him confused is salvage options. We are aware that after surgery, radiation is a salvage option, and more surgery is also possible.

We also know that surgery after radiation is difficult. What are the salvage options after the initial period of radiation? More/different radiation? Especially interested in hearing from folks who’ve needed more treatment after the initial round of radiation and hormone therapy.

My dad is 62 and was just diagnosed with Adenocarcinoma of the prostate. He had been dealing with constipation for a couple of months & then stared bleeding into the toilet bowl resulting in him going to the ER. He had dealt with on & off depression since my mom passed 5 years ago. So he has not been to the doctor in a long time.

His MRI results:

8.8cm

1. low rectal mass invading the prostate. Metastatic mesorectal, right internal iliac, and right inguinal lymph nodes.
2. Metastatic deposit anterior to the prostate.
3. Diffuse osseous metastatic disease.

They thought he had rectal cancer but after the biopsy during his colonoscopy this is the results we got:
Rectal mass, biopsy:
Adenocarcinoma, consistent with prostate primary
NKX3.1: Positive.
CK7: Rare positive staining.
CK20: Negative
CDX2: Negative.

The biopsy let us know it is actually a prostate mass invading into the rectum instead of the other way around like we thought. He has a radiation oncologist consult on the 16th and then medical oncologist on the 22nd. I’m just looking for advice on what I should be asking at his visit in general & what I can do best to help him through this? I’m also 6 months pregnant with my 2nd child & will likely be his main caregiver but I also live 3 hours away. My 25 year old brother still lives with him though.

Hi, new to the site and trying to get information. I am 60, slim, in good physical condition, until recently a healthy sex life. Earlier this year was diagnosed with an elevated PSA and a very enlarged prostate. The MRI scans showed a size of 150cc with areas in the prostate peripheral zone designated PIRADS3, a trans perineal biopsy gave indeterminate results, a repeat the same. The course of treatment decided on was RALP followed by active surveillance. I was told the surgery would be nerve sparing but with surgical side effects and time required for the body and nerves to recover from the trauma. I was told by the surgeon immediately afterwards that the procedure had gone very well. I recovered quite quickly and only had minimal problems with leakage, I would sometimes get a gush of urine shortly after having finished what I thought had emptied by bladder, otherwise fine. I had the RALP in early March 2026, by May I was able to resume sex with my wife. This in when things started to go wrong, I found I was unable to achieve a properly hard erection. I had get moderately hard but am floppy and my penis doesn’t really stand up, it is like it is not anchored at the base. On top of that I am noticeably shorter, I was lucky to have 7” pre-op, I am 5” now, just about enough. I am able to penetrate my wife, just, but because of the floppiness tend to fall out and am not able to satisfy her this way, I use other methods. For me to get an orgasm it has to be done manually, but it doesn’t feel the same. I not not able to ejaculate, I was warned this is inevitable and also do not feel any internal contractions. It is still pleasurable but has an entirely different feel to it, no pelvic contractions, no spurt and more a kind of tingling sensation. I wondered if others here had had any of these experiences and did things change over time. My wife says I should consider myself lucky, I can still perform after a fashion and have a PSA which is just in the acceptable range. I guess she is right after reading about some difficult experiences on here but if I am honest about it I feel less of a man. I feel for the guys on here who’ve had to go through ADT and wish them the best possible outcome.

Love to hear if others dealt with these issues and how were they resolved?

RALP done at high volume center with top doc on west coast. A little good news first. RALP went extremely well. Bilateral nerve sparing and hood sparing reconstruction. Pathology report just came back and all lymph nodes clear, no upgrades (still 3+4), .87 decipher but negative surgical margins, and doc said he is confident i won't need any additional treatment for cancer....gone :-)

Bad news. Day 7 post op cath removed. A few drops of blood but nothing very uncommon per nurse. Void trail left 26 cc inside and weak stream...nothing too concerning...sent home.

Next 24 hours, very weak stream but urinating a little every couple hours...enough to make me feel like I still have to go a little but I'm good. Eventually getting some pain in bladder area and went to urgent care. Bladder scan showed about 28 cc....not that much. No UTI. Given Phenazopyrudine HCL to calm bladder down a bit.

Next morning, woke up with severe pain as I moved to get out of bed and couldn't urinate. Turned into 10 out of 10 pain worst in my life...and I was stabbed in the back 3 times with a collapsed lung and nicked aortic artery...that was nothing compared to this. Took Oxy pill did nothing so called called 911. Sweating profusely and almost went unconscious. Ended up in ER, 2 shots of morphine didn't resolve pain. Bladder scan showed 320 cc retention. Couldn't urinate. Catheter back in (wasn't bad at all probably because NOTHING could compare to pain i was already feeling in entire abdomen and even chest and left arm/shoulder). Within 15 minutes of catheter, I had zero pain. Negative for UTI, abdominal ultrasound didn't show anything of concern.

Surgeon called me while in ER. Said he believes I needed more time to heal and could have used more days with cath in. Said this cath will stay in 7 days, prescribed flomax, and scheduled ct cystigram prior to cath removal.

Chatgpt believes these are the causes:

Postoperative swelling around the bladder-urethra connection ⭐⭐⭐⭐⭐ (most likely)

Bladder spasms/hypersensitivity after catheter removal and reinsertion ⭐⭐⭐⭐

Has anyone experienced this? Advice? Chances second catheter removal will go smoother? 😵‍💫🤢

Unfortunately, tested positive for Prostate Cancer, age 61. Results were: PSA (4.87) and early clinical stage (T1c) Gleason 4+4 grade. Doctor is recommending robotic surgery, which seems to be logical path. Anyone have similar results and path? How was post recovery? Trying to digest all of this news. Thx.

I feel for the men on here that are on ADT because I am not on it and I just finished 9 of 45 IMRT Treatments and I have no energy.

I am close to 72 and been working out and power walking or running (in my younger days) most of my life.

I was on testosterone therapy since 2018 and cut off by Urologist beginning early March.

I stayed in the top limits 800 to a 1000.

Men's range is 300 to 1100 before I here any testosterone abuse comments

I am hypogonasium now at 190 ng

I am pushing to workout, but I get so tired.

I feel quilty complaining when I read these post.

Maybe it is the fast drop that is getting to me

Does it get worse going on ADT to reach 0 or am I close to that now?

My Primary doctor said it will be hard to get my natural testosterone up due to my age on being put on therapy because of low testosterone.

I ask Claude the same question and got the same answer that my doctor was correct

u/Mauser_1 gave good advice about avoiding a cath infection. I want to avoid that at all cost. here is what chatGPT says for guys like me who are wearing one and want to do it right.

My simple Foley infection-prevention rules

1) Wash hands before and after you touch the catheter or bag

That’s the big one.

2) Don’t disconnect the system unless you have to

Try to keep the catheter tubing and drainage bag as a closed system. The more you disconnect/reconnect things, the more opportunity for contamination.

3) Keep the bag below your bladder at all times

Always. Bed, chair, walking.
That helps prevent urine backing up toward the bladder.

4) Don’t let the tubing kink or tug

Good drainage matters. A backed-up catheter is a bigger problem than not cleaning it enough.

5) Empty the bag before it gets too full

Don’t let it overfill. When you empty it:

• don’t let the drain spout touch the toilet or container
• wipe it if instructed, then close it securely

6) Clean the penis/catheter area gently once a day

You do not need to be scrubbing it repeatedly.

What I’d do:

• shower or use warm water and mild soap once daily
• gently clean around the tip of the penis / catheter entry point
• rinse and pat dry
• a little Aquaphor or Vaseline at the meatus is fine if it’s irritated, if your team said that’s okay

7) Don’t use alcohol, peroxide, or aggressive wipes on the catheter site

Too irritating. Plain soap and water is enough.

8) Keep the catheter secured

Less movement = less irritation, less urethral trauma, less chance you’ll be fiddling with it.

What I would not do

• not constant cleaning
• not taking it apart to “sanitize” it
• not wiping the tubing obsessively
• not flushing it unless specifically instructed
• not putting creams/antibiotic ointments everywhere

What would make me worry about infection or catheter trouble

Call if you get:

• fever
• shaking chills
• worsening lower abdominal pain
• cloudy foul-smelling urine plus symptoms (smell alone doesn’t mean UTI)
• catheter stops draining
• new confusion/feeling systemically sick
• significant pus-like drainage around the catheter

My bottom-line answer to your instinct

“I don’t wanna touch it more than I have to.”

That instinct is actually pretty good.

Touch it as little as necessary, but do the basics well:

• clean hands
• once-daily gentle washing
• keep it draining
• keep it secured
• don’t disconnect it unless needed

My father (66M) was diagnosed with metastatic hormone-sensitive prostate cancer 2 months ago and we’re stuck in a situation where every oncologist we consult gives a different opinion on chemotherapy. Looking for real experiences from patients or caregivers who faced this same decision.

His diagnosis:
Gleason 4+5 = 9 (Grade Group 5), de novo presentation (metastatic at first diagnosis)

PSA at diagnosis: 251

PSMA PET-CT: PSMA avid left common iliac and external iliac lymph nodes. PSMA avid sclerotic and marrow-based lesions involving lower lumbar vertebrae, sacrum, and left iliac bone.
No visceral involvement (lungs, liver, brain all clear)

By CHAARTED criteria — this is LOW VOLUME disease (3 bone lesions, no visceral mets)

Current treatment (started June 2026):
ADT(degarelix) + ARPI(abirateron)

4 doctors have said no chemo required in Low Volume cases, 3 Doctors are very keen on chemo saying to strike hard as early as possible

In a huge dilemma of whether to proceed with chemo or not. Please guide!

Hi Everyone, we want to donate all the medicines which are left and can be used since expiry is not soon. Olaparib, Tibsovo, Enzalatumide, Fenta Patches etc. Any NGO which supports donation of medicines to needy patients? I am in Bangalore.

I was reading a study that claims less than 1% of patients experience any type of cancer cell escape during biopsy. Just wondering what the community thinks? We are obviously patients and not the doctors or pathologists, however, my own personal view is that I think it’s higher. That’s not to say that those cells survive and bring the cancer outside of the gland or do something else nefarious. But I’m sorry-I had twelve needles shot into my prostate whereas some of them snatched some dirty little cancer cells and were drawn right back out through my prostate wall and out of my a*s and off to pathology. You’re telling me that doctors, pathologists or whoever, KNOW that they generally don’t escape 😳 I don’t buy it for a second. I say the percentage is way higher - but those little trouble makers just don’t have enough gang members to form a gang and even more importantly they don’t have a hangout I.e tumor to flop out in. Just my own humble opinion. Seriously, unless they had a micro camera with a cancer cell detectable filter parked on the outside of your prostate when that needle comes a draggin’ out … I can’t be a believer. Oh and I didn’t even broach the topic of the myriad of escape holes left in your prostate when the biopsy is done.

Had the spaceoar fitted this morning and found it so much more bearable compared to the biopsy.

Done and dusted in under 20 mins. Local anesthetic with mild sedation.

Thoughts please, 91 year old father (was great for 91, driving, working around house before the can metastatic bone cancer, cervical spine and 5.3cm tumor on a scapula. 70 yro daughter is caretaker and stressed and worried. Psa 163, then 93 after lupron and 1 month on xtandi , xgeeva. 2.5 months in now ,2 weeks post radiation on bone mets. He's in alot of pain, on long lasting morphine, doesn't eat much, lost 20 pounds in the 2.5 months. Some mental decline. I can't get him to drink much, even though he knows he's got to. He lives with 95 year brother, they cook some, don't want housekeeper, and don't want much help in house, including from me.

He's on palliative care now, and they had short conversation with them about hospice. No dr has said he's in final stages. Awaiting a full body pet scan. But Dad still thinks he's going to get to how he was before, driving, etc. Palliative care has said where he's at physically and mentally is the new normal.

Don't even really know what my question is, just thoughts from those that have gone through this on how to cope.

Gleason 7 (3+4, pre- and post-op), cribriform, SVI, PI-RADS 3 (but upgraded to 5 four days pre-op after the scan was re-reviewed). Happy to be here and that I’m not any closer to radiation than I was 3 months ago.

Prostatectomy 2.5 years ago. Undetectable PSA for 2 years, then went from 0.017 to 0.032 in the past six months.

Originally Gleason 3+4. 7mm positive margin after the surgery.

So on the one hand there is a pretty good indication of an early cancer recurrence and a "strong clue" as to where it is (the positive margin).

But my UCSF surgical team wants to wait and do more diagnostics. They want to wait until 0.1 for an ultrasound and at 0.2 they want PSMA PET. They feel any PSA under 0.5 is still likely to be confined to the pelvic area and it’s better to wait and see, because maybe it's actually somewhere else like a lymph node.

But I’m only 50. I need to eradicate this. I honestly think their program of offering me active surveillance for four years with a 3+4 was a bad call. We missed one chance to wipe this out already.

And what if the PSMA PET doesn’t show anything at 0.2? Do we wait for 0.3? 0.5? Wouldn’t that increase the chance of it spreading?

For context, my dad died from this because his team was too nonchalant (at Mayo, also a center of excellence). They let him go years without a follow up biopsy even though he was high risk. My trust in "confident and experienced" teams is running thin.

Feel like I have been very supportive of my partner who had prostate removal surgery at the end of May. From buying him most of the post surgery care needs and avocating for him in the hospital to attending PT appointments to take notes.

This relationship that is less than a year old and he was already found out about his condition when we met.

There was a post in here from a women who partner had ED from prostate removal surgery and did not take any medications to possible help it. I discussed the post with him and said I would want you to do everything possible so we could have sex again. He agreed he would.

I understand that it takes time to heal but part of the issue is he is not doing his exercises. I have to remind him and even then he doesn't do them.

He has the summer off from work so he can not use that as an excuse.

Just told him he has month to fix this and that's it then I am leaving him.

Am I being too harsh?

Please help me understand why someone would not take 10 to 20 minutes to do some kegels to heal themselves after surgery?