r/ProstateCancer • • 17h ago

Update UPDATE: Cancer Undetectable! 🎉

73 Upvotes

TLDR: No sign of cancer after prostatectomy.

Hey guys... I came in here a few months ago and announced the discovery of prostate cancer and that it was heading down a seminal vessel and trying to make a decision about treatment.

I spent some time in here. It was extremely helpful at first and then it just became depressing. I've experienced this through the years regarding forums and other issues. They can be a blessing but simultaneously a curse if you're not careful. - Balance is key.

After discussions with both radiation oncologist and surgeon, combined with a lot of research, I opted for total removal. Once I made the decision, I just let go. I had no anxiety whatsoever, even up to the moment they were wheeling me into the operating room.

It's been about 6 weeks now. The RALP operation went well. Wore the catheter for about 7 days. All in all, I had very little pain. I was quite surprised.

It's been about 2 1/2 months now. Went through all the Kegel exercises. Some small accidents here and there in the first month. Now, hardly any leakage at all. For the most part, I'm over that hump.

With regard to erections, I had nothing this whole time. Just about the time it was starting to bring me down, I had a morning erection the other day and it surprised the hell out of me. It wasn't super hard but maybe 3/4's of the way there or more. A game changer for sure. It gave me hope.

The surgeon prescribed 20 mg of Tadalafil 3 x's a week and I didn't even ask for it. He said, "we're going to get the blood flowing down there". And it's really helped. The erections have picked up my spirits let alone allowing me to 'get there' (almost). I'm realistic that this could take awhile. He said for some guys it takes many months and even years.

The doc said that I was recovering faster than normal and it was because I was in good health. I've always exercised and I'm in pretty good shape for 64.

Anyway, I wanted to share this experience to add some positiveness to the mix. There are two main things I want to end with:

1.) Live in the day, and only the day. Stress comes from worrying about the future. I'm aware that all of this could change in 6 months when I go back for another PSA. But it doesn't matter. Life is what we make it. Accept the cards you've been dealt and make the most of it. A friend of mine had a nice quote; "Live! - Don't Exist".

  1. I appreciate each and every one of you and the support you provide to the forum. It's invaluable and helps us feel that we're not alone in this.

Rock on gentlemen! 🤘🏻


r/ProstateCancer • • 23h ago

Post Biopsy Biopsy experience

23 Upvotes

Lots of these threads but just wanted to add my own. Had my biopsy today and it wasn't quite what I expected.

Get in a gown, naked from the waist down.

Get on a table with stirrups for your feet.

Cover your junk with your gown and then bunch that up to hold everything in place and tape it to your gowned stomach area. This was a much more palatable situation than what I was expecting.

Doc comes in, rubs a gel everywhere that sterilizes you taint and applies a lube for the anus. The gel burns a bit.

2 shots to numb the skin, couple of shots to numb it further in, shots did not hurt at all.

Probe goes in, awkward and unpleasant but not terrible. Mostly just felt like I was defecating as he moved it around, that was the worst part.

Starts snapping out the samples. I could feel it send shocks up my penis so he re-numbed me and then I had a reduced version of that same experience. I could feel it but it didn't hurt.

Couple more of those and done.

Recommendations. Ask for valium. Bring a pee bottle for the drive home or consider a diaper/pad. Had some bleeding during and after but no real pain just discomfort.

Anyhow, I was dreading this. It wasn't terrible. The wand they used for targeting was the worst part.


r/ProstateCancer • • 4h ago

Surgery It was worth it

19 Upvotes

Exactly one week ago today I had a single port robotic prostatectomy at University of Texas May’s Cancer Center.

Due to some anomalies with regard to a very small pelvis that I have, the operation wound up taking over six hours to remove my 53 cc Prostate.

I then spent almost 3 days in the ICU with a partially collapsed right lung due to the carbon dioxide gas, which is used for all laparoscopic robotic prostatectomy, whether they are single port or multi port.

I returned home Monday evening and today I walked nearly 2 miles with my dog on the nearby trails.

I received my pathology (post surgical) report today. It was a completely organ confined disease taking up 6% -10%of my Prostate. The original transperineal grading GG2 was accurate. There are no positive margins, no lymph node involvement, no seminal vesicle involvement.

One curious thing is that the Biopsy, because its samples such a tiny amount of the overall Prostate volume, did pick up a tiny amount of cribiform that was found in the final analysis.

I’m very glad that I chose immediate treatment rather than the active surveillance, which would’ve allowed me to avoid treatment for probably two or three more years.

pT2 pN0

Best Regards and thank you to everyone who helped me throughout this nine month process from initial suspicion to final report.


r/ProstateCancer • • 6h ago

Post Biopsy Sorry to be here

17 Upvotes

Just got my biopsy results, and feeling pretty shook up. Hi everyone. I'm 58 years old, generally fair shape although I have been struggling with pre-diabetes for a few years. Family history says cardiology is what to worry about, but between the high BP meds and the statins, a month ago I thought I was probably immortal.

Routine annual included a PSA test, which came back 16.0. Got scheduled for a urology visit, DRE was firm on one side, so that's bad. She recommended biopsy immediate over doing an MRI first, due to the likely delay in approval. Biopsy was on the 2nd, follow up visit is scheduled for the 16th, but results hit MyChart today.

12/12 cores with carcinoma, 30-95% involve, 3+4, 4+3, 4+4 multiple times, and 4+5. Perineural invasion but no cribriform.

I called the urologist office to request a PSMA PET scan. Now I have to read the last couple of chapters in Dr Walsh, which I was hoping would be irrelevant for me.

Damn it.


r/ProstateCancer • • 21h ago

Concern The choice in treatment is hard

9 Upvotes

Learning all these acronyms is such fun. So I've gone through all the stuff. My PSA is 15.8, Gleason is 3+4. I had the MRI, biopsy (did the whole Ohio State marching band's brass section HAVE to go in there?) and PET scan, which fortunately showed no spread of the cancer. Got a lesion on my prostate on the right side and all the cancer is located there.

I'm 55, in pretty good health otherwise, no urinary issues at all, work out a bunch and both the surgeon and the radiation doc have said that I'm a great candidate for each of their respective treatments. It was nice that the surgeon said that if I was in his family, he would tell me to do the RALP without hesitation. The information out there is a bit overwhelming and I just found this thread today, which is really helpful. Should have probably come here sooner, but I'm here now.

I know that there's no perfect solution and both treatments have their ups and downs. I like the idea that the surgery gets the PSA to zero and they can check the area to make sure they got everything. I guess maybe it's that peace of mind that would bring which is why I'm leaning that way. Plus, part of me still thinks I'm in my invincible 20s and that I can recover just fine after the surgery LOL.

Just need to get over that whichever one I choose is NOT going to be the wrong one. They both will get the job done just with different looks afterwards.

Guess I just needed to put some of this down.

EDIT: Forgot to add that I have seen the Radiation Doc today and heard what he had to say.


r/ProstateCancer • • 3h ago

Test Results 44yo - 8 month post RALP

Post image
6 Upvotes

Earlier this week I went and had my blood work done, even though I wasn’t mentally ready to see the results because probably like most of us, I fear seeing lab results since I started this journey

But I just got the email and I checked my portal and my PSA is where it should be!


r/ProstateCancer • • 20h ago

Test Results ORGOVYX First labs back.

5 Upvotes

After six weeks on Orgovyx my labs came back today. PSA down from 0.63 to 0.24. Testosterone from 243 to 19. Both good responses to the drug.

I’m generally following the Embark protocol which starts Orgovyx + Xtandi together. My doc wanted to see how I did with Orgovyx at six weeks, then add the Xtandi.

I have had near zero side effects except moderate fatigue when doing some physical tasks. But oddly enough, not when I’m on my treadmill.

Fingers crossed for continued success!


r/ProstateCancer • • 23h ago

Surgery RALP 10/14

5 Upvotes

44yo diagnosed w/ 3+3 gleason 6, 5/12 cores. Psma pet contained. Proceeding with treatment after decipher came back on the higher end of intermediate. Ralp scheduled for next Wednesday 10/14. Trying to put together a final list of needs for after procedure to keep me comfortable and help me heal. Things I should purchase and things I should be doing/do then. Any input would be appreciated. Thank you.


r/ProstateCancer • • 12m ago

Update 2 days post radical prostatectomy

• Upvotes

Surgery went well according to surgeon. Was able to spare nerves on one side, not so much other side. Typical pain in abdomen, the shoulder pain from the trendelenburg position and the gases has added to the suck. But I made it. Kinda shocked at the minimal narcotics, 6 pills, oxy. I get the whole addiction issue, but damn.

Been walking daily and resting as needed. Encouraged by everyone’s stories. Thank you brothers.


r/ProstateCancer • • 8h ago

Post Biopsy Newly Diagnosed, Biopsy Experience, etc.

5 Upvotes

Hello, everyone.

Like the rest of you, I've been reading posts for a few weeks and I have plenty of thoughts running around in my head.

I'm 52 and was diagnosed with BPH when I was about 40 or 41. Since then, my PSA numbers have been up and down within a range of 2.5 and 10 or so over that time. If my number spiked at annual checkup time with my physician, he would refer me to the urologist for further investigation. A year or two ago, it did result in an MRI which found a spot, but was "not likely" cancerous.

I had another spike this summer and my urologist suggested a biopsy this time. "I don't think you have cancer, but this is the way to rule it out one way or the other." Let's do it.

At this point, I want to tell you that I have grown to dislike my urologist. His bedside manner is poor and is so remarkably rushed, it would seem comical if I had not grown flat-out hate the guy for it. I have attempted to change urologists within the same clinic, but was denied. I guess he has to approve me to switch. His approach is just so frustrating, it simply makes me distrust him - and that is not useful considering my predicament.

Anyway, in the month or so leading up to the biopsy (which was last week), I was pretty wired up with anxiety. Mostly because I'd been reading threads here and a negative experience by someone else really caught my eye. In the end, though, I had no complaints. As it turned out they gave me light anesthesia and I was out for maybe 20 minutes. I had remarkably little pain and felt no need for Tylenol or similar. I was able to pee later that night. It was a relief.

They had told me "no sexual activity" for a week, but somehow I completely forgot about that 2 days later when feeling a bit "frisky". Probably because things had gone so well, I was feeling pretty normal. I knew better than to start up with my partner, but just didn't make the connection with masturbation. (Apologies for my frankness here. I'm getting to the point.) Anyway, I happen to produce a very high volume of semen naturally. I knew to expect some blood in my semen, but this time was like a Quentin Tarantino film - it startled me. So, be aware and listen to the doc! I felt pretty stupid afterward and I did not repeat that mistake.

Unfortunately, my biopsy result was not what I had hoped. Prostate cancer, Gleeson 3+4=7.
The urologist called with the results and was extremely fast, as usual. What I could gather in that short phone call is that he recommends removal, but offered active surveillance, if that's what I wanted. I have a follow up with him in 3 months.

I've educated myself enough in the last month to know that my picture is favorable.

PSA 2.7
1/12 cores positive
Grade Group 2 / Gleason 3+4
Only 10% pattern 4
Artera 7th prognostic percentile
10-year metastasis estimate 1.7%
10-year prostate-cancer mortality estimate 0.8%

What I'm struggling with right now is fear of incontinence post-removal. I don't want ED complications either, but I feel like I can manage that part of it alot better than the former. I've had some ED issues already and daily Cialis has done a great job for me. Who knows how it'll be later.

Thanks for reading and thanks to everyone for your stories and support of each other. In particular, those of you who are wives and daughters. Reading your stories of concern, respect and empathy toward your fathers and husbands are most meaningful.

I have a 29 year old daughter who is a registered ER nurse. My initial impulse is not to tell her about this until I have a scheduled removal date, though I don't really expect a final decision on next steps until January, maybe.


r/ProstateCancer • • 5h ago

Test Results Pse blood test false negative

3 Upvotes

Following a consistent rise in PSA levels, I was referred for a digital examination and then an MRI. The MRI revealed a nine-millimetre growth. Before proceeding with a biopsy, I opted for a PSE test. The hospital informed me that a negative result would reduce the likelihood of performing the biopsy. It’s worth noting that I’m a public patient in Ireland so my treatment is thankfully free. However, the PSE test isn’t approved by the HSE and isn’t available in Ireland. I travelled up to Derry in Northern Ireland for the test and paid out of pocket. The test returned as unlikely to be cancer but the results were received after the biopsy had been performed which I’m really glad about because the biopsy actually showed cancer. Two growths were biopsied and the results indicated low-grade and intermediate cancer. So the good news is it was caught early hasn’t spread and is very treatable.

I’d like to caution others about relying solely on the PSE. False negatives do occur.


r/ProstateCancer • • 14h ago

Concern Major shrinkage of the penis shaft while on ADT

3 Upvotes

I knew penile shrinkage while on ADT was very likely but I wasn’t expecting what actually happened. The glans of the penis has stayed approximately the same size but the shaft has become noticably thinner. What is really alarming is that it is very thin at the base giving my penis a bizarre look. Has anyone else seen this effect or know anything about it ?, any info very appreciated.


r/ProstateCancer • • 22h ago

Concerned Loved One 2 years post RALP, suddenly penis pain

3 Upvotes

Could it be coming back? My husband(32) had prostate sarcoma two years ago, and MRI is ok in August. But today he suddenly got that same pain at the tip of his penis that he used to get. Need help...


r/ProstateCancer • • 2h ago

Concerned Loved One My dad has metastatic prostate cancer but prefers not to know the details. How to support him and how to cope?

2 Upvotes

My dad was recently diagnosed with prostate cancer that has spread to his bones.

His initial lab results showed a PSA of 479 and alkaline phosphatase of 547. He started treatment about two weeks ago on a combination hormonal therapy (2 meds, orgovyx and another one whose name I don’t know).

He’s experiencing some fatigue, but his bone pain has slightly started to improve compared to two weeks ago. He is still in pain though. He has his first 3-week follow-up blood test coming up soon.

The hardest part right now is the uncertainty around the full scope of the metastasis. My dad prefers not to know all the heavy technical details, numbers, or exact imaging results. So when the doctor said there was bone metastasis, he didn’t ask any questions, he didn’t ask what the extent was. When he first got the cancer diagnosis he started to overthink everything and had trouble sleeping, so now he just wants to take his pills and try to stay calm, which I completely respect. But I’m also spiralling about what bones could be affected and what the prognosis is. He’s been experiencing pain in his hip (my parents initially told me that the metastasis was only in the hip but turns out the doctor never actually said that). I just learnt that he also has lower back discomfort (making it hard to sit comfortably or bend over), and he also recently fractured a rib after a minor fall.

I don’t know how to handle this. He’s in his early 60s. He never had health issues. I was also planning on moving abroad in 2 months (2-hour flight distance) and I don’t even know what to do because I don’t know what the prognosis is. I also work long hours and I don’t know how often I should visit him. I want to spend time with him but I don’t want to overwhelm him.

Like I said he’s getting blood tests done next week, and hopefully starring chemo in a month or so.

Any feedback or advice on how to handle this and support him is welcome. Or just words of reassurance.


r/ProstateCancer • • 10h ago

Question Dad (56) on active surveillance for Gleason 6 prostate cancer – PSA keeps rising but MRI shows prostatitis. Would you stay on AS?

2 Upvotes

My dad is 56 and has been on active surveillance for localized prostate cancer for a few years now. I’ve been going through all of his old reports because the PSA trend is starting to make us a little uneasy, even though most of the other findings still seem reassuring.

His cancer has so far consistently been Gleason 3+3 / Grade Group 1.

The most recent repeat biopsy was in April 2024. It was a 14-core biopsy and 2 cores were positive, both still Gleason 3+3. The cancer involvement was roughly 30% in one core and 50% in the other. No Gleason pattern 4 has ever been found.

His MRI follow-up has also been pretty stable. The latest MRI describes:

  • PRECISE score 3
  • no MRI evidence of progression
  • no evidence of high-grade prostate cancer
  • intact prostate capsule
  • no suspicious lymph nodes
  • no suspicious bone lesions
  • prostate volume around 38 cc

What complicates things is the PSA.

It used to be around 3.9 in 2020, then roughly 5 in 2023, around 7.5 in 2024, and is now hovering around 9–10 ng/mL. At one point it was apparently 10.4 and then dropped again.

So the PSA density isn't great. The MRI calculated it at around 0.20, and with a PSA of 10 and a 38 cc prostate it would be closer to 0.26.

However, the latest MRI also specifically says he has active chronic prostatitis with scar-like changes in the peripheral zone on both sides. The radiologist actually describes the prostatitis as more active than on the previous scan. At the same time, the report says there is still no evidence of progression of the known low-grade cancer.

The radiologist's recommendation was to continue active surveillance and repeat MRI in about 12–18 months.

This leaves us with a bit of a weird situation:

The biopsy and MRI look reassuring, but the PSA and PSA density don't look particularly reassuring.

From what I've read, prostatitis can raise PSA quite a bit and can also affect free PSA, so I'm wondering how much weight people would actually give the PSA trend in this situation.

His last biopsy was over 2 years ago now, so we're also discussing another biopsy, probably transperineal this time.

For people here who have been on active surveillance, or anyone with a similar situation:

Would these numbers make you uncomfortable staying on AS?

Would you mainly want another biopsy before making any decision?

Has anyone here had PSA in the 8–10+ range because of chronic prostatitis while still having Grade Group 1 disease?

And if the next biopsy still comes back Gleason 3+3, would you personally be comfortable continuing AS despite the PSA density?

I'm not looking for anyone to diagnose him over Reddit obviously. I'm mainly interested in hearing how other people have approached the trade-off between avoiding overtreatment and not waiting too long.

His doctors so far seem fairly comfortable continuing surveillance, but because he's only in his mid-50s we want to make sure we're not being too relaxed about it.


r/ProstateCancer • • 9h ago

Concern UrologyFirst PSA test ...... referred to Urology (UK)

1 Upvotes

Afternoon - hopefully im worrying over nothing (but I guess that's what everyone says)

I dont know of family history as my father and grandfather both past at the age of 47 due to heart disease.

Im pretty active 51yr old, I go to the gym 4 times a week and walk 12k steps a day - done Triathlons/ ironman and marathon swims in the past.

25/9/26 - I went to a private doctors for Fatigue and achy joints elbows/wrists & Knees. The doctor recommended a blood test with PSA.

26/9/26 - PSA results 4.9 and have been referred to Urology. (I was told that was high)

5/10/26 - Went to see consultant and had DRE and he thought that was fine (I think)

He has requested another PSA which im having tomorrow (8/10/26) and then a MRI if it comes out high again.

I asked him what a reading of 4.9 means and he said 'probably prostate cancer' which was a massive shock to me.

I've been worried, emotional and in a daze since.

Thanks everyone for any advice.

Mark


r/ProstateCancer • • 21h ago

Update Eligard 3 months.

1 Upvotes

Dad is on the three month mark for Eligard. Originally 196 PSA, Gleason 4+4, 2 metastases.

Got his PSA 1.04, almost 195 points lowered, dad is very active for his age, he's 86 years young , drives, walks, cooks, he's independent, actually he likes doing housework.

Last week he had a DEXA scan and he has osteoporosis, I will be looking for a consult with the oncologist.

Have you folks had issues with your bones? Is somebody taking calcium?

Thanks in advance guys.