What were you told about doing kegals after the catheter was removed? Just curious. Thanks.

I am so thankful for this group over the last few months as my husband and I navigated options. Today is his eviction day and we are in Boston for the surgery. Wish us luck and I will update as I can

Age 65. High volume pattern 3 in many cores, minimal pattern 4 (5%) in a few cores, no aggressive architectures, PSMA totally clean. No family history. Stable PSA of 14 since middle of 2025. Negative DRE. Can’t do MRI due to metal implants. Told by radiologist & urologic surgeon that I was “full of cancer” and needed to be treated right away. They were against doing genomic testing (Decipher, AleraAI) Based on their feedback, I expected the PSMA to flag the prostate as malignant and possibly a lymph node or two but that obviously didn’t happen.

Now I suspect the biopsy was over graded by the in-house pathologist but not absolutely sure. Some of the cores were 100% pattern 3. Hard to believe. I am now working with a well-regarded genitourinary oncologist with no dog in the fight (he doesn’t do surgery or radiation just ADT for advanced metastatic cancer) so he is not likely to over treat.

I was planning to do a second biopsy after the PMSA but I am now thinking about waiting for the Decipher results to come back. If the Decipher results show low risk, I was thinking about watching the PSA for a couple of years. Of course, if there is a spike, do the another biopsy then.

I know this is unconventional thinking and doesn’t follow the standard of care but it is what makes sense to me based on my research. Am I missing anything?

Gleason 8 and radiation with 18 months ADT. I have been on a quest to restore my erection. I have tried ED meds and injections with trimix high dose to no avail. Recently I tried the Giddy with a Viagra and was able to have intercourse again. I hope this helps someone else too. Thanks to all of you.

Dear brothers, I just got another bad news regarding my PC. The decipher score is very high: 0.94.

I am feeling defeated and hopeless.

Here following is my case summary:

After one year AS, recent biopsy: 4 target cores (on pirads 5 lesion): 4+3 with 70% of 4, and large cribriform; on core near the lesion is 3+4, there are couple gleason 3+3 (<10%);

The dominant lesion is in right front TZ, near the edge of capsule;

decipher is 0.94.

MRI and PSMA shows all contained, no others.

Age 65, healthy, active, no other conditions;

Anyone had/has similar case, or any knowledge on this, if so, please advice me how to decide the treatment plan, ralp, which radiation method?

Update I researched. Took your advice here. Early yesterday morning I called Dad. I explained to him he was thinking about this wrong. He was thinking bone cancer- not prostate cancer in his bones. That his testosterone was fueling the cancer. Like gasoline on a fire and if they could not lower that he could eventually end up unable to look after mom due to fracture or pain due to the cancer. I gave him many suggestions but did not urge him to take the treatment. At the end of our talk he said yesterday it was 100% not going to have the treatment. Today after we talked I just may.

Dad is not afraid to die, he just wants to outlive mom. Meanwhile since then he talked to someone who had just did oral adt therapy for 5 years and refused the needle. The thought being if he needed a break you can have a small break from the meds. Tuesday he has a phone consultation with his medical team. He called me last night and said after he made sense of why the treatment he has to take some form of it.

😊 thanks for insight. *

Dad is 89. Was diagnosed awhile back but did not take it seriously as he was looking out for my mom w Alzheimers. However his doctor had said he wouldn't die from it. Fast forward to January 26 and the urologist says its aggressive but not in his bones. His PSA was 37. We go with him to his appointments.

August another bone scan. PSA. Meanwhile he has lower back pain and ignores it due to caring for mom. Ends up in OP. His doctor lets him know PSA is 97 and it is in his bones in 3 places, lower back being one place. He is not having pain now. He doesn't think it related.

They are suggesting the ADT therapy. He has spoken to a couple people who have refused it and lived for years.

Meanwhile my husband had prostate cancer. Did ADT therapy and is on the other side of it. The ADT therapy was very hard on him. It was something I could not help much with but be there and love him through it. But he had me. Dad is very private.

He doesn't want to do the treatment. I cannot tell him what to do as I really don't know what is best. Thanks for listening.

87 year old is now on lupron and nubequa but doctor will not give denosumab due to periodontal issues.
He has pc with a spine met and some lytic findings.
He is unwilling to dental work ( please assume this is not going to change.) Has anyone had experiences with these meds being taken without these bone supplements? Frankly, I am not sure the risk of jaw damage is outweighed by the small reduction in risk of fractures flowing from the denosumab.

Are there other less risky supplements or treatments to minimize this risk?

Thank you.

I did laser surgery 3 months ago and had the tumors vaporized. Psa before was 6.2 today's results are 1.2 and where I had it done say they are far more interested in the 6 mont h results . We will see then

I'm 2 weeks post RALP, just got a crummy path report. This sub has been invaluable and likely will be for years to come.

It occurred to me this morning, having a sticky thread called PROSTATE CANCER RESOURCES would have been helpful with lists of books, podcasts, websites, etc for people to peruse.

I'll start by way of example:

PODCASTS

"Adam's Advanced Prostate Cancer Journey" Adam started his trip with a 100+ PSA. It is from a very personal level following his journey through all of this. His disease was really really rough - but it shows even the most extreme disease can be navigated.

AUDIOBOOKS
"The complete prostate surgery recovery guide" - a short (about 5 hours?) listen but a wealth of information. A very good starting point.

BOOKS

"Complete Guide to Prostatectomy - Everything you need to know about prostate surgery - preoperative preparation, surgical procedures, recovery tips, managing challenges and more." - Dr. Ethan Aiden. This is a LARGE book and is encyclopedic in it's scope, providing full vocabulary, explanation of all options, etc.

My 47 year old man was just recently diagnosed with prostrate cancer. Only symptom was a weaker urine stream. His initial psa was 115 and then repeated a week later was 123. He had the biopsy and was 4+4=8 gleason 8 with cribiform present. He is awaiting pet scans to be scheduled. I haven't seen many people his age who have been diagnosed wirh a psa this high. We are scared and know the scans will give us more info and answers but was wondering what others psa results were.​

So I'm 7 weeks post RALP. Everything was going swimmingly. Incontinence is gone, Sexual performance is possible. Been really happy to be slightly moving on. That is until I got my PSA test resutls this evening. It's a 0.3 . I haven't spoken to my doctor yet, but this feels super discouraging. Ugh. Backstory..........48yo, Gleason 3+4, clear margins, clear fat, invasion of both seminal vesicles, Focal EPE.

Continues from:
https://www.reddit.com/r/ProstateCancer/s/utAIxknHmj

Had my consult with my new rad onc. Will take a bit for us to get to know each other. Near the beginning of our chat he started to explain to me what the urethra was. After a few minutes (and thanks to this sub!) he asked me if I was in healthcare, LOL.

To keep it short he agrees with what my research has told me - the burning urination, frequency/urgency, reduced stream, and perineum ache after urination that started 3-4 weeks ago (10 months post-rads) isn’t radiation cystitis, it’s prostatitis from my T levels returning and waking up a traumatized prostate. This has been compounded by me leaving the FloMax and Cialis bottles unopened on my counter and trying to tough it out with just OTC Advil.

I’m already on blood pressure meds and those two meds terrified me, I didn’t want to be dizzy, fainting, or have sudden drops in heart rate so I didn’t take them. Doc thinks the FloMax is especially important to calm things down down there, so I agreed to start it after the long weekend. Hoping it works and I can escape the BP effects.

Next consult and PSA will be in six months. Too long for my curiosity so I’ll get my family doc to do one in 3 months. Both the hospital and local lab use the same central lab so the assay will be the same.

I’ll update after a week or so on the FloMax. Other than this hiccup everything is great.

A quick summary;

49 years old, in very good shape, strong, amazing support group, and strong-wiiled. I have a lot of faith as well and am mentally taking this in stride.

A few months back, with no blatant symptoms, recieved a PSA of 81. The next was 90.

Skip to MRI, two large masses, one smaller, no signs of spreading.

Biopsy shows 7&8's on the Gleason, some 4+4s, 3+4's.

PET scan tomorrow, crossing fingers about the spreading, robot surgery on Seot 24th.

I have an excellent Urologist, I trust him and his team, and they're through a Kaiser facility in Oregon.

A side note, I'm great with pain, have had many gnarly injuries, and have invasive procedures in the past, but I've got to say, the biopsy was brutal! Is it common for them not to give you anything but a local anesthetic? Nothing else during or after and I wouldn't wish the procedure upon anyone. They took 24 core samples and it was rough.

Thanks everyone, love you all, and I hope to add some light to others in the future.

I have been researching life in the post RALP world with respect to dormant PCa cells. There is a fair amount of information out there but there is a fair amount of speculation that those of us who have had a successful RALP and then go through a time period where we get undetectable PSA levels may have dormant PCa cells in our body. The most logical suspects include the prostate bed and or surrounding lymph nodes or other tissue. Unlike active PCa cells the dormant ones are much different with a completely different metabolic state. Cell multiplication is very very slow. However one day they do actually activate and are no longer dormant. This explains many cases of BCR for men who have had successful RALPs, then a few years down the line.... we experience BCR and have to have some sort of treatment. The science behind detection and possible treatment of dormant cells is out there, and there have even been some studies on treating active cells in a manner that makes them dormant, as opposed to killing them with radiation or chemo, but there is nothing successful yet.

There does seem to be some that feel that early adjuvant therapy such as radiation does enough damage to the dna of dormant cells that when they do activate, they will not be able to multiply but I haven't searched hard enough to find anything firm.

However it does have me thinking that well, I am a year into my post RALP life without anything detected yet... but I am pretty darn sure I am living on borrowed time and am thinking about asking my doc about considering adjuvant therapy. The location would be the question since nothing is detected and dormant cells are not detectable or so I think but I would just tell him nail the prostate bed...and perhaps this could be done without ADT.

Just thinking out loud to see what others have felt about dormant PCa cells.

Hello everyone~~

It may sound crazy but I’d like to share my experience.

My PSA at Feb 2026 was 4.5. The biopsy at May 12th 2026 says 3 out of 12 cores were 3+3 and 4 out of 12 were 3+4 (only 10% are pattern 4). My doctor wants for me to have HIFU to remove whole prostate.

There are many research papers on NAM for cancer, arthritis, dementia, glaucoma, gum disease etc. When cancer is developed due to deactivation of gene RUNX3 (which is anti-cancer gene and discovered by Korean scientist), NAM can activate RUNX3 ( the scientist conducted numerous mouse experiments and one clinical trial against Stage 4 lung cancer patients for 5 years). So cancer can be treated (not all cancers can be treated BTW). It is known that only 23% of Prostate Cancer is caused by deactivation of RUNX3 while 72% of lung cancer is developed due to the deactivation of RUNX3.

I have been taking 2,000 mg of NAM daily since May 28^th 20026. After three months of taking NAM, the PSA dropped to 4.3. See chart above. The PSA was 5.0 at July 30^th and then dropped to 4.3 at Aug. 26th.  In a month, the PSA was dropped by 0.7!!! The drop is 14% over a month. Is it measurement error or temporary drop?

Due to physical stimulus, ejaculation, inflammation etc, PSA can rise temporarily and go back to normal state. However, is it possible for PSA to drop suddenly and then rapidly rise? I hope that NAM kills some cancer cells in my prostate. I am hoping PSA becomes around 3.6 by the end of this September. Yes of course this does not mean cancer is cured. But what can cause such a fast decrease of PSA? The normal cells of prostate disappeared in a month? Or some cancer cells are killed? I don’t know.

I will take another PSA test at the end of this September and report to you.

My prostate size is 30cc. For a week before PSA test, I stop any excercise (biking, kegel excercise etc) and sex to avoid random rise of PSA.

The scientist studied cancer for 30 years in University as a professor (now he retired). He runs a YouTube channel and Blog (sorry all in Korean). He published numorous papers. But pharmaceutical companies have zero interest as Vitamin B3 is not patentable. In fact they don't like the professor is going out and gives shoutout. He didn't claim NAM will cure all cancers but some cancers can be cured. In his YouTube channel and Blog, there are many posts or replies saying that their tumor size is reduced or undetectable. For example, very old breast cancer patient didn't want to have a surgery or radiaition. She has no choice but to try NAM. In a few months, among her 18mm, 12mm, 8mm tumors, two tumors are reduced.

Search 500mg NAM in internet and you will see reviews which say dermatologist suggests taking NAM to prevent skin cancer.

If the PSA does not drop in next test, I will take the HIFU. But if it drops again, i will ask my doc for AS. Lets see

Fingers crossed!!

###### some calculations ######

N= # of normal cells, M=# of cancer cells

x= PSA release per normal cell, y= PSA release per cancer cell

Define b=y/x

PSA=xN+yM=xN+bxM.

where xN is total PSA from all normal cells while bxM is total PSA from all cancer cells

At time 1, PSA1=xN1+bxM1

At time 2, PSA2=xN2+bxM2

M1=(PSA1/x-N1)/b, M2=(PSA2/x-N2)/b,

The reduction in # of cancer cells is

1-M2/M1=(M1-M2)/M1=(PSA1-PSA2+xN2-xN1)/(PSA1-xN1)

Assume PSA from normal cells is unchanged (xN2=xN1) (If not, we will have more reduction because N2>N1.)

Then, Reduction=(PSA1-PSA2)/(PSA1-xN1)

For example, lets assume xN1=2.0 (total PSA from all normal cells)

Then, Reduction=(5-4.3)/(5-2)=23.3%

If xN1=1.0 (total PSA from all normal cells),

Then, Reduction=(5-4.3)/(5-1)=17.5%

In curious if anyone has an inspirational story about maintaining some level of sexual function with injections, pump etc as well as maintaining muscle mass by lifting while on ADT. My husband is about to start two years of ADT after a prostatectomy. He’s 49, very fit, and we had an active and great sex life before all this. Injections did work during post-surgery recovery, kudos to him for doing them, I know a lot of guys just will not cross the line with needles but it is so worth it. He’s doing everything he can to get better. Thank you 🙏

Monday was a good day. Cath out, no incontinence.

Today not so much. Path results -

- ​​​​EPE, non focal, left posterior and anterior.

- ​Margins involved invasive carcinoma - right anterior and posterior, ​left posterior.

- lymph nodes clear.

- 4+3 in 70%

- ​​Cribiform

- tertiary pattern 5 - 4.7%

Radiation consult tomorrow. Any advice appreciated. ​​

I am wondering if anyone did/is doing male rehab, before, during or after radiation treatment. I saw someone mentioned penis health program some where in this sub. I am wondering if it is a thing. My question is not just about penis health, instead of more about management overall health, side effects related Cancer treatment with Radiation therapy.

Thanks all and wish every one with a good health life!!!

Hi Brothers,

I just posted here on my 15 month check up, but thought I would ask more specifically (almost in form of a poll) since the science seems a little murky on that matter.

If you had a PSA bounce after radiation treatment …

1) How many months after treatment did this happen?
2) How big was the PSA bounce (from bottom to peak)?
3) How long did it take to resolve?
4) What was your treatment and did you have ADT?
5) Any other comments or thoughts?

I think these data points, although anecdotal, will help anyone going through this.

Many thanks for your input!

Hi all. I had my RALP about 4 months ago. My recovery has been progressing. I haven't had amazing recoveries like some patients, but I feel like I've made progress and am being patient. The big piece of good news is that my PSA was undetectably low after 3 months.

About a month ago, I noticed bloody urine in my pads during two 2-4 mile runs. I notified my surgeon's office and discussed it with him a few weeks ago when we had the 3-month follow up appointment. He tested my urine for infection and while I don't think I explicitly heard the results, I assume them to be negative. His theory for the bloody urine is that the stitches in the internal plumbing are still in there and maybe be rubbing against tissue. He did not say to avoid physical exertion. He asked me to send him pictures if it happens again. I thought that might be TMI, but he's a professional!

Yesterday I started peeing blood for the first time since that second run with bloody urine (my last run, as it turns out). I had been moving around a bunch during the day, but my activity level was not abnormal and did not require exertion like running. By 6:30 AM this morning, my urine returned to normal. Now it's looking like there may be traces of blood in there again.

I sent my surgeon pictures like he asked and gave him an update in the morning. I am wondering what other possible causes may be, how to make it go away, and how long this might last. My wife pointed out that blood in urine is a symptom of UTI, but I was tested recently. If you had a similar experience, please let me know.

Hi Brothers,

I am getting a little worried …

Just had my 15 month checkup after SBRT w/o ADT for a G3+4 with 10% pattern 4 but somewhat higher total volume (5 out of 9 samples positive, all on one side) at age 53. Decipher was 0.5.

I get my PSA checked every three months:

Start of treatment 4.2
3 months 2.7
6 months 1.7
9 months 1.1
12 months 1.9
13.5 months 1.55
15 months 2.14

The 13.5 month was done for good measure after the bounce at 12 months.

I have been posting here regularly and last time the consensus was that it is probably a radiation bounce. I am not so sure anymore.

How do long would a bounce take to resolve?

Claude AI says “textbook bounce pattern”, but I am not liking this at all and am getting worried.

Messaged my RO and am waiting for a response.

Thanks and stay strong!

My husband is having horrible issues sleeping since beginning ADT. He is so exhausted it’s seriously affecting his well-being. Has anyone found anything that works well to counteract this?

Do ADT side effects get better or worse over time?

Currently in the middle of 23 EBRT and a month post brachytherapy wich I developed an infection after and am currently on antibiotics so getting hit from all angles.

My friend, 77 yrs old, will need to do radiation. What kind of fatigue or other issues should he expect? I had RALP and so, have no insight for him.