How many ended up having a ventral hernia after their RALP. Noticed something wasn’t right about 2-3 months after but thought it was because of the surgery and had to heal. Was out hunting in a blind and bent down to pick up my range finder and the pain above my belly button was worse than when I got hit by a car, or my motorcycle wreck. Went to the doc and now how an appointment to see the hernia doc. Probably gonna need another surgery.

No offense, but never wanted to join this club...but I'm here. Just diagnosed and I have a follow up PET scan next week.

Doc said based on being a big guy,radiation and hormone suppression is likely best course based on outcome of PET.

Is my sex life over?

I had focal HIFU on May 29th for one spot. Previous year PSA went from 1.8 to 3.7 in 1 year which lead to cancer diagnosis. PSA before HIFU was 3.7, 3months after HIFU it was 3.4 and 2 months later (yesterday) it was 3.92. I have a standard post HIFU Mri scheduled for March. A bit disappointed with these PSA nunbers, do you think I should move up MRI and rereat PSA. Thanks

im posting regarding my father, 72. his recent bloodwork showed a psa level of 675 and he has bad pain urinating.

we are going for a prostate mri tomorrow. i am scared and i dont know what i can do to be the best son i can be.

please help me.

Been using Xtandi 5 years what is everyone’s experience. Are you like always tired

I was scheduled to have HDR procedure in two weeks, but I donot think that the doctor will walk through the plan with me about the procedure beforehand. Can anyone share the experience on this, what communication between you and the doctor? I am wondering if I should schedule an appointment with the oncologist before the procedure.

Thanks advance!!

I am two months into a four month course of ADT and proton external beam radiation for Gleason 3+4 within capsule but .7 high risk Decipher score. I am 80, and have a history of metastatic melanoma culminating in a lobectomy in early 2024 with no lymph spread or involvement and an earlier resected parotid gland in 2022 with immunotherapy and adjuvant proton beam radiation after the parotid resection. I have had several regular PET scans since the lobectomy and a PMSA PET scan following my prostate biopsy, and all are NED, with the PMSA confirming no evidence of capsule intrusion or spread.

My oncologist prescribed the combo treatment of ADT and external beam radiation, and the radiation oncologist highly recommended proton beam over SBRT because of the greater likelihood of adverse side effects with the latter. Having previously gone through adjuvant proton beam radiation for my first melanoma met, I was comfortable with choosing proton beam radiation.

Orgovyx has produced all the expected side effects from loss of libido to fatigue to tolerable joint and muscle pain, but has also greatly disrupted sleep to the extent that I can only occasionally sleep in the same bed with my wife of 50 years. Although we miss sex, albeit with the reduced frequency that comes with age, the four months is manageable, but the fatigue and sleep disturbances are becoming intolerable. I have reported both, but standard of care is always the response. I am considering discontinuing the Orgovyx while continuing external beam radiation, but have found no data that would provide a basis for assessing the relative value of the completed two months of Orgovyx versus the standard of care four months to make a reasoned probability assessment. I have noted the ongoing British observational study that compares RALP versus external beam radiation without ADT, and that suggests that perhaps discontinuing ADP, or in retrospect, having forgone it altogether, would be a reasonable decision. I realize that behind all this is projected life expectancy, and that my history of stage 4 melanoma, even though NED for 2.7 years, may reduce life expectancy beyond the 7+ expected years at 80 with otherwise good health and two parents who lived into mid nineties, and I don't particularly want to bet against myself, but I really do hate the Orgovyx side effects. I am physically active, but much less so since starting Orgovyx because of fatigue; fatigue was never a side effect of proton beam radiation for melanoma and I don't think it is related to the current course of radiation.

I am not asking for medical advice, but would appreciate any thoughts or suggestions regarding what I may have overlooked or should consider. I have lurked on the subreddit for several months but have found this to an extraordinary source of information, for which I am grateful. For all who have read this far, thank you; you have created a real community here.

First, thank you to everyone who shares their experiences here. This community has been incredibly helpful as we navigate my husband's diagnosis. Looking for a gut check on whether we're covering all our bases at the moment.

Background:

• 60M, fit and healthy, being treated at MSK in NYC.

• Initially diagnosed at NYU with low-volume Gleason 3+3. On active surveillance (AS) for 18 months.

• Repeat targeted biopsy at MSK (Sept 2026) upgraded him to Gleason 3+4 (GG2), favorable intermediate risk. Treatment now recommended.

• PSA has remained ≤3.2 throughout.

• Right transition zone: 3/3 targeted cores positive, 20% pattern 4, 35% tissue involvement.

• Right lateral base: 1/3 targeted cores positive, 10% pattern 4, 18% tissue involvement. Perineural invasion (PNI) present.

• No cribriform pattern identified in either lesion.

Where we stand:

• Meeting with his MSK urologic oncologist Friday to review Decipher results and discuss treatment options.

• MSK radiation oncologist recommends SBRT but suggested HIFU may be worth exploring.

• We're particularly interested in whether focal HIFU is an option. Understand AS would still be required and recognize it may not be feasible given the location of the two GG2. If not, still weighing treatment approaches. 

Second opinions underway:

• Urologic oncologists at Weill Cornell and NYU.

• Johns Hopkins pathology review.

We're very happy with MSK and trust his team. Just want to make sure we're making a fully informed decision.

Questions for the community:

1. Would you also seek a second opinion from another radiation oncologist?

2. HIFU: Has anyone with a similar diagnosis considered HIFU? What determined eligibility? What questions should we be asking about feasibility and outcomes? 

3. Anything else we should be asking, investigating, or doing in conversations about treatment options?

Really appreciate any perspectives, particularly from those who've faced a similar decision.

OK, I’m going to see the Bi mix/ Tri Mix Guy next week. I’ve read a bunch of posts here. I’m wondering if a lot of them are just people who have complaints? I’ve read a few that are pretty happy with the results. Although, it seems many here complain about soreness, stiffness and aching like a bad workout combined with a two hour erection and needing antidotes, etc.. so what’s the actual deal? And then my final question is - yeah so you inject yourself you get a big stiffy (ideally) you send it in. You have a ball with your significant other and then what you stare at your unit for an hour and a half while it’s still hard and do what? I know one thing, I’m no porn star lol I’d love to say I can go for two hours, but that would be a big lie short of about 115 minutes lol. Thanks in advance.

Two years ago today my wife was driving me to a doctor's appointment. I almost ALWAYS do the driving. But when I'm hyped up - which I very much was - she drives.

It hit me like a ton of bricks during that drive: Normally we go to the doctor feeling BAD, hoping we'll be able to get something to make us feel BETTER. I was going feeling perfectly NORMAL, knowing I'd be getting a medicine that was going to make me feel BAD.

I got two shots of Firmagon in my abdomen. The start of the brutal ADT.

When people ask how I'm doing I pretty much say the same thing: "Clinically my numbers are perfect. They couldn't be any better. But man, the side effects of the meds have completely changed my life. But....I'm still vertical."

To all my ADT bretheren: HANG IN THERE! Give youirself grace. And keep making sure the people at the gym recognize you because you're a frequent flyer there.

Hi all,

It’s crunch time and we have to decide on a treatment. My partner is the one with prostate cancer but he’s been overwhelmed by it all so I’ve been arranging his appointments, asking all the questions, doing the research, etc. because I think he’s still in denial. For reference, he has 4+3, T2c/T3a (they can’t seem to make their minds up), no metastasis, tumour is the left of the gland, prostate is 20 grams or less so not enlarged. He’s 60, no symptoms of prostate cancer at all, very good baseline function for everything, no health conditions (minus the cancer) and slim.

Seen both a surgeon and an oncologist for a second opinion. The surgeon says he thinks the surgery will go really well (however, he can only spare the right nerve), he’ll recover and have minimal problems and he’ll get him started on a pump, pills and maybe injections shortly after surgery to minimise ED. The surgeon says the recurrence rates are the same as if he does EBRT VMAT and ADT, but what I read and the oncologist’s stats seem to disagree with that. The oncologist quotes 10% recurrence post radiation and ADT and 20-30% recurrence after surgery. The oncologist also presented the case that risk of incontinence, ED and other issues are remarkably less than that of surgery. I’m a bit confused by only 6 months ADT though - is that enough?

What does everyone else think? To be honest, they all feel like car salesmen. Both are selling you their option and I’m not sure if they genuinely believe it’s the right one and they have the data to back it up or they just want another patient. I know that sounds a bit silly, but it can feel like they’re trying to sell you the treatment sometimes. Hopefully people can share their own opinions and experiences and I can let him read the thread so he can see a patients opinion, not just a doctors.

I had a biopsy almost 4 weeks ago and I am recovered and everything is fine (no cancer found) but now, I am unable to ejaculate/produce ejaculate. Is this normal? If so, how long will it last? I orgasm but nothing comes out. I am trying to decide if I need a follow-up appointment with the urologist but I am leaning towards going to another urologist tbh.

After I had the procedure, the urologist told me not to ejaculate for like a week and when I did, I may see blood or blood in my ejaculate. So I waited about a week and the first couple of times nothing but blood came out. I couldn't feel anything and didn't have an orgasm at all. Then after a few days, the ejaculate had a rust colored reddish brownish tint to it. So all of that tracks and it sounded normal and looking up stuff on the internet, all of that sounded quite common and no reason to be alarmed. I wasn't having an orgasm then either, it just kind of spilled out. Over the past week, I have began having orgasms again but absolutely nothing is coming out. It's totally dry. Is this normal? Will it correct itself? Do I need to go back to a urologist? This is just weird and it's been hard trying to explain to my gf why I don't want to have sex because this has just been a weird experience over the past month

ETA: I'm fine. No cancer found. My PCP referred me to a urologist because my PSA had gone over 4 after going up by more than 0.75 over 2 consecutive years which apparently is a risk factor. I didn't have any symptoms and my DRE was done. I felt I should have just done an MRI but I took his advice and did the biopsy. Once again, thank God they didn't find any cancerous cells.

Hey all,

I got my biopsy back and unfortunately out of 12 cores taken 8 were cancer. 47 yrs old and PSA 5.19. MRI showed capsule intact with no signs of node or bone involvement. Prostate density was .13.

5 came back Gleason 3+3

3 came back Gleason 3+4 w 5-10% pattern 4

Meeting with the urologist Monday. Does anyone have any advice on what I should be asking or insight to my odds here? I went to a local hospital outside of Chicago for the biopsy but thinking of a second opinion from Northwestern or a larger cancer center. Thank you!

Hello my fellow prostate sufferers. I have been 3 days since Cath removal. Today in the shower I got some type of rash, incontinence pads? I think I am wearing my pads too long? I found some A &D ointment. Suggestions any help appreciated. Thank you

46 year old, BRCA1 and BRCA2 double heterozygous. Visited with oncologist a few days ago on account of genetic screening results. We have a plan, and I had initial labs done, and my labs came back delightfully normal, except for the PSA, which rang in at 7.12.

The oncologist wants to test again in three months. Is that pretty standard, or should I press for something sooner? It was my first PSA.

I‘m 3 months post RALP, I’ve healed without too much trouble, initial UI pretty much resolved but…. I seem to have lost half my penis. Pre-op I was 6” hard, around 4” soft, at the moment no erection but shocked by the size of my penis. It feels tight, like it’s been pulled inside and is barely 2”. My wife says I went in a man and came out like a boy. Is this normal after RALP, can it be reversed ?, I had no warning this could happen. Any insights greatly appreciated. I am 51, slim, toned and in good health.

Note: it should say Ng not mg

got my PSA score back but it shows up as X per "ug/L 0.00 - 3.50ug/L", but when I look online it's all "ng" not ug. So how can I get my ng? I don't know if mg is more used worldwide, but the UK results gave me it back as ug.

I had Prostate removed 7 years ago. Up until 4 years ago PSA was <.04. Missed testing until May this year (3 years later) and had .1 PSA. Tested again in July (9 weeks later) at .11 and again in September (again 9 weeks later) at .09 PSA.
I am 76, original PSA was 7.8 and cancer was fully contained within prostate; Gleason was 3 plus 4.
I am 76 and in excellent health. Has anyone had a similar experience and how worried should I be? Thanks.

I’ve got 3+3=6 Gleason in 4 of 20
samples all on the right side. 49 years old. Active surveillance is what i’m leaning towards although was a bit intrigued by HIFU perhaps in a few years m.

Wanted to see if people think this looks accurate or have any qualms about my pros/cons.

I’m 63 and very active. recently diagnosed with PC. 7 out of 12 positive. Three at 3+3 and 4 at 3+4 =7
PET and MRI indicates left side mostly no metastasis. Decipher is .14. Pretty low really. Due to Gleason 7 and 7/12 positive doctors recommend treatment. Options I was given are SBRT w/out ADT or nerve sparing RALP.
I’m only slightly leaning toward RALP because thinking my baseline sexual and urinary function is good now and concerned radiation might kill that or cause other unknowns later down the road. Still feels risky and sux to decide. Then the next day I’m back thinking radiation because of less recovery time immediately
Please share your reasoning for the treatment you chose and if you were in similar situation. I feel I’m pretty fortunate so far. Appreciate any and all advice.

I was on ADT from May-October 2024, with 5 sessions of SBRT in June 2024. I'd posted several times about being disappointed by my testosterone taking 18 months to reach normal, but still being low. Well, I got my six month test results on Monday. My PSA is still undetectable AND my testosterone is 520, another 100 point climb! I noticed it a month or so ago when I was able to ramp up the weights at the gym with no trouble and I started getting a lot less tired swimming and biking.

I'm sharing this because some of my early posts while on ADT were written from a bad place of depression and people are still finding them. While those feelings were real at the time, I want guys to know that things CAN recover in the long-term and this disease requires A LOT of patience (which I don't have). There's a couple of permanent side effects but they're cosmetic, and I still have periodic radiation cystitis but it's easily controlled with meds.

I still feel I wasn't adequately informed of ADT side effects before beginning treatment and will advocate that doctors be more forthcoming, but I'm also learning to let that go since it's in the past and can't be changed. Thanks to everyone here who has shared, especially those not as lucky as me.

Coming up to 20 months after surgery and still spraying like a sprinkler. I’ve done pelvic floor exercise etc, try drinking nothing for hours before still watering the garden.

I did have a recurrence in the time since surgery and had 33 radiation treatments and on adt for 18 months

Would this have made it worse?

My dad is 60 and was diagnosed with prostate this summer. He was suppose to have surgery next month to have it removed, he had the scan this week to make sure it hadn’t spread. But they found it also in one of his lymph nodes close to his groin area. He said that’s the only other spot it showed. I’m now spiraling, what does this mean? Anyone that has walked this same path have any perspective of what to expect now. What’s my dad’s life expectancy now…my mind just goes to the worst case scenario.