Living with Prostate Cancer: Meet others & introduce yourself

I'm new to this group. I was diagnosed in Jan 2022. I was a Gleason 8 (4+4) with a PSA of 5.6 at that time. A radical prostatectomy was performed on March 8, 2022. Final pathology report showed that the prostate margins, seminal vesicles and lymph glands were clear but my Gleason score was raised to 9 (4+5). Had my first post-surgery PSA in June, which was undetectable. I am now 4 months post-surgery. Incontinence has improved but still dealing with drips and dribbles. Hope that will resolve itself with continued pelvic floor therapy. ED is an issue (taking a daily 20mg Viagra) but progress is being made. Looking forward to that resolving itself too. Any advice on the incontinence and ED would be welcome.

hey @edo I'm not doc or expert but I can relate my experience...My diagnosis and surgery / lab outcome was very similar to yours. At 4.5 mos my experience was also very similar to yours. I'd say keep up the good work with the therapy. Likely, the incontinence will continue to improve, I know mine did. At your point I had very good control unless I coughed, sneezed, ran or tried to release flatulence, now at 10 mos I have it very much under control, one of my docs tells me it continues to improve for up to 12 months as you build up the muscles via kegels and other therapy while your nerves heal, which they tell me is a lengthy process. I felt noticeable improvement through 6- 8 mos. I recall I was unable to run (which I've done for 40 years) until about the 6 mos mark, that was my big milestone!

I can "contain" at 110% of bladder volume according to a recent radiation treatment, (that's another story...hopefully you won't get to tell it)

The ED, again, they tell me it's mostly a nerve thing, I don't think I'll ever be the same but it has certainly improved over time, docs say not likely to improve much more at this point, but, with a little pharmacological assistance....
Best of Luck to you!

Thank you very much web265 for sharing your experience. It's reassuring to know that I'm on the right track. My takeaway from your response is that I have to be patient and continue to let the body heal.

Hello Everyone,
After being dignosed with prostate cancer at the age of 57, gleason 4+5 pT3a I had RP in april 2019 ,shortly after my psa dropped to 0.02 where it remained for 1 year,then slowly started to rise at approx 0.01 every 3 months,i have become very concerned because the rate of psa rising has recently greatly increased.as you can see from the data below my psa rose by 0.06 in just 1 month and has more than doubled in 5 months ,i have an appointment with urologist tomorrow but i believe i need a PET/PSMA Scan which is not available in my public health as i live on a small island in the canary islands, i will have to pay privately at a cost of 3000 euros.
I would really appreciate any information or advice on my situation.
date PSA
09/05/2019 0.04 ng/ml
10/06/2019 0.02 ng/ml
11/09/2019 0.02 ng/ml
16/04/2020 0.03 ng/ml
28/01/2021 0.06 ng/ml
21/10/2021 0.09 ng/ml
15/12/2021 0.11 ng/ml
19/01/2022 0.10 ng/ml
15/02/2022 0.10 ng/ml
16/03/2022 0.12ng/ml
04/04/2022 0.13ng/ml
29/06/2022 0.16ng/ml
27/07/2022 0.22ng/ml

Welcome @rad62, I know it has to cause some concern to see the PSA number rising. Hopefully other members with experience can share their thoughts. I did find this information on the topic you might find helpful.

"Does rising PSA mean cancer is growing?
Understandably, many men being treated for prostate cancer are very concerned about even very small changes in their PSA levels. The PSA level is an important tool to monitor the cancer, but not every rise in PSA means that the cancer is growing and requires treatment right away."
-- Following PSA Levels During and After Prostate Cancer Treatment:
https://www.cancer.org/cancer/prostate-cancer/treating/psa-levels-after-treatment.html
Can you discuss the PSA levels and possibilities with your urologist tomorrow?

Hi,
Yes I will go over the possibilities, I will try to access a pet psma scan which I was advised by a private clinic when PSA reached 0.2.
Thanks

Hey @rad62

For comparison, my PSMA scan was ordered by my team when I reached .091 (after more than doubling in 3 mos)

The ins company here wouldn't pay for it as the PSA was too low in their estimation and it seems that the consensus here is to wait as well, you are well in the range where it is suggested to get the scan. I did get it, nothing was found. At that point we started orgovyx and radiation treatments. (40). I did the scan in the hopes of getting a definitive answer as to where the cancer was, that didn't happen. If I were in your shoes and had the resources, I'd do it to find the cancer and be able to formulate a better plan of attack.

My "plan" is the radiation and ADT, it seems that the consensus is also to do both as opposed to one or the other. My team recommended it and you'll see several articles in these forums suggesting a two pronged approach for the standard of care.

Best of Luck to you!

A couple links with articles for consideration.

With USPSA, we can be focused on the PSA vice the standard PSA tests, measuring only to a single decimal. Your labs do show a continuous rise though there is debate about calculating doubling and velocity times with USPSA. Still, valid concerns with those increases.

The sensitivity of the newer scans below .5 does not mean it can't locate the PCA, just that as PSA hits .5 or higher, that sensitivity increases. Your decision, does waiting for PSA to hit .5 or higher and increase the sensitivity in locating the PCa change the outcome, i.e, does the treatment plan change if you wait and increase your chance of locating the recurrence. Perhaps not. If you have the financial wherewithal, that enters the equation too. If you're battling with insurance companies, well, that's a factor we know all too well.

When dealing with insurance companies, I find it useful to cite the NCCN guidelines https://www.urologytimes.com/view/psma-pet-imaging-modalities-added-to-nccn-guidelines-for-prostate-cancer. Medicare follows these are they are the "standard of care."

To sum up:

Your sustained increase in PSA as evidenced by your USPA results may clinically indicate recurrence.
The decision to image may want to take into account the tradeoff off between sensitivity, the impact on the treatment plan and any risk associated with a higher PSA, thus greater sensitivity to locating the recurrence and informing the treatment plan, particularly if you are considering radiation to any sites located by the scan. If radiation were not in play, just systemic treatment, that may change your decision process.
https://www.prostatecancer.news/2016/12/pet-scans-for-prostate-cancer.html
https://www.prostatecancer.news/2020/07/the-perils-and-pitfalls-of-treating-psa.html

hi kujhawk1978,
Thanks for the information and the asscociated links.
One of the links on the subject of supplemements has me a little worried as i have been taking curcumin supplement for around 3 months now , i had actually stopped with it a few days ago when i saw the larger psa increase in my last blood test. Im now hoping that this has not suppresed the true psa reading and that my cancer could be more advanced than the psa 0.22 suggests.

I did RP, radiation, and hormone treatments. The good news is that they have worked to keep my cancer from spreading so far. The bad news is that the chemical castration does not seem reversible.