Prostatectomy or Not

Well said.

@rickwoodvisuals Thanks Rick and everyone for their support and encouragement. My surgery was a nerve-sparing laparoscopic/robotic surgery and it is my understanding that the Cleveland Clinic surgeon who performed my operation is very experienced, so I am hoping for the best. Apparently it is a slow process.
My doctor recommended 10 Kegel's per hour during every waking hour. 10 waking hours is 100 Kegel's. Seems excessive. A book recommended by the Cleveland Clinic "Guide to Surviving Prostate Cancer" by Dr. Patrick Walsh seems to be a very good reference and recommends standing while urinating and stopping stream for 5-10 seconds, repeating as often as possible. I'm curious what kind of exercises other RP patients are doing.

@jeffmarc
With all due, great respect, Jeff, I think your advice here is a little confusing. The penis pump will address ED, not incontinence!
Furthermore, he probably shouldn't mess with one until he is cleared for sexual activity, which was, in my case for example, six weeks following the RARP. I was, however, immediately prescribed the Cialis, as you say.
jmhabo, I'm six weeks past my RARP, and my incontinence just recently seems to be improving some, so be patient! Also, I agree that 100 kegels/day sounds very excessive! Furthermore, stopping the urine flow as Dr. Walsh recommends can have other negative effects. I was told to do sets of ten kegels three times a day, whether lying down or sitting. I generally hold each one about six seconds. As I said, I do seem to be improving, plus I had conducted that regimen starting several weeks before my surgery.
We're in a similar boat, from the sound of things, but do be patient as your body still has some significant healing to do, and it deserves the respect and time to do so.

@jmhabo

Kegels are really important for a move beyond incontinence but that’s sees like a lot of Kegels your doc suggested. Stopping your pee mid stream helped me a lot too. When this recovery is over you’re going to be more aware of and familiar with the most intimate parts of the male anatomy the. you ever
thought possible.

@sandguy

@jmhabo said the following

“ I'm currently 3 weeks post radical prostatectomy and dealing with some incontinence, total impotence, and some minor bowel issues”

I think people should be prepared for what to do if they have ED and incontinence. Asking if he had nerve sparing surgery can help answer whether or not ED is long-term Or more easily solvable.

He was really depressed about these issues and giving him some ideas about how he could get around them was beneficial to him.

I didn’t tell him it was something he had to do immediately I gave him some future ideas about how to resolve the issues he has and at least lift the depression a little.

It's a crap shoot...a roll of the dice. At age 70, I too am glad that I had the RP surgery, but only to a degree, with similar thoughts that I am glad the cancer is out of me. BUT...I am one of the unlucky 10-20% that had "surgical margins", which means I had Extraprostatic Extension (EPE), and my urologist was unable to remove "all" of the cancerous tissue...some remains in my body. My urologist's one hopeful caveat was that "cancer tissue needs blood supply, and I (urologist) removed the blood supply, so 'hopefully' the cells will die. BUT...(he said), these cells can end up in your pelvic floor musculature and adjacent other tissues including lymph nodes." I was angry. I had specifically asked him in my pre surgical conference, if he would be removing my lymph nodes as well? He said "no, there are many studies...one of over 1,800 men...that revealed that just a handful had cancer in the lymph nodes. The conclusion is that we (urologists) don't need to remove the lymph nodes." He NEVER said that no matter what form of prostate cancer you have, it just always seems to eventually "come back." If you are lucky, it comes back after you acquire some other condition that will kill you instead, so you won't die of prostate cancer. It seems that there are a LOT of men who contribute here, who had their surgery and follow up treatments 10-15 years ago, and they are still alive, but...there is a seemingly larger group (at least on this blog), that had their cancer return within 3, 5, or 8 years, and they have had a battle of radiation, ADT therapy, and other interventions all of which have horrific side effects. And then...(flip side)...there are men like my maternal grandfather who lived to 96 years of age "with" prostate cancer, and who died of Alzheimer's, not prostate CA. He had Lupron injections on a scheduled basis for a very long time though. Then there was my father who lived to 99 years 10 months "with" prostate cancer, and died of something else. He was never treated at all for the prostate CA, although he suffered with a very enlarged prostate due to the tumor (PSA "over" 200 ng/ml !!!). And, my maternal uncle who lived to within a month or so of his 87th birthday. He had prostate cancer, AND he had the prostatectomy. He died of a massive cluster stroke. So, the guy who actually had the radical prostatectomy, lived the shortest amount of time, compared to his father and to my father. That is what you call IRONY. I am faced at age 70 with the need to schedule a consult with a Radiation Oncologist who will, OF COURSE, tell me that he feels that I need to have the radiation, despite my first two PSA's (6-months post-op) were < 0.1 ng/ml ("zero") as they should be. The nature of my pT3b cancer is such that my urologist wants to get ahead of the curve knowing that I have a high likelihood of recurrence within the first five years post-op...it could be within this first year, or the second, third, fourth, etc., but it will very likely return. So he feels that the risks and side effects of radiation are worth the risk of their occurrence to get ahead of the cancer returning. And we ALL know that MANY men see their cancer return AFTER radiation. So, those cells have now mutated and likely respond less-well to other follow-up treatments like ADT and drugs. I don't know what to do...roll the dice, wait on radiation until/if my PSA is 0.2 ng/ml or greater, or just do the radiation and hope for the best with negative outcomes and no recurrence for at least 10 years or more. I'd like to see some statistics on the rate and timing of recurrence following radiation therapy.

@rlpostrp

My grandfather died at 98 with a huge prostate, but never had prostate cancer as far as they could find. My father, his son died at 88 from prostate cancer. He had radiation and Lupron, but there was nothing else available at the time. I remember when he told me Lupron stopped working. He died in a considerable amount of pain. I got it at 62 because my mother gave me BRCA2, My brother got it at 75 because he didn’t have BRCA2 just a father that died from it.

Does radiation make sense when you have margins that are not clear. It would be so nice to be able to get a PSMA pet test But with your low PSA, it’s just not going to show anything. You could consider stopping ADT for a little while to get your PSA to rise to .5 and then be tested. I know people that have done that. But that could just mean that you have more spread than you should. A real conundrum.

You’ve probably seen the below information, but I will post it again because maybe you don’t fit this requirement that you have at least two of these issues before it makes sense to do adjunct radiation. While you mention that they took out lymph nodes, you don’t mention whether or not they had metastasis. One of the four criteria below does require lymph node metz.

I personally would be concerned about the EPE and non clear margins. I would be leaning strongly toward getting the radiation. ADT can stop the cancer from growing for a long time, so maybe you could wait, but it also could result in becoming castrate resistance sooner. If you’re also an ARPI that could prevent that from happening. So many decisions. Ask your doctor about this.

Others in this forum have decided not to do adjunct radiation until the PSA actually starts to rise. In those cases, they did have clean margins. Are you taking a chance? Yes, but it’s hard to say how much of a chance.

Adjunct radiation
Dr. Efstathiou concluded as follows:
* Early salvage radiotherapy is favored over adjuvant radiotherapy in most patients
* Consider adjuvant radiotherapy in otherwise fit, motivated, very high-risk patients with ≥2 of the following risk factors:
* pT3b-4
* Gleason score 8-10
* pN+ Lymph node Metz
* Decipher score >0.6
* In high-risk patients, use lower thresholds to initiate ‘ultra-early salvage or adjuvant-plus’ radiotherapy
* If giving adjuvant radiotherapy, it implies high-risk disease. Thus, Dr. Efstathiou would recommend treating the prostate bed and pelvic lymph nodes, in addition to short-term versus long-term ADT, depending on risk factors
* May consider genomic classifiers or artificial intelligence tools to help with informed decision-making
* The goal is to avoid (or delay) radiotherapy in those who we can, without missing a window to cure patients who are guaranteed to recur

Here is a link to the article supplied by @surftohealth88 originally
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html

My husband had RP about 12 weeks ago - incontinence minimal ( 15 -20 ml in 24 hours), ED slowly recovering and we are not obsessing about either of those. Recovery was fast and uneventful, he is full of energy and is back to sports and living normal life with one full time job and 2 startups on a side. Cancer is out and the first PSA 0.014 and we are very happy with our decision - he would choose RP all over again if he could move the clock back .

Can PC return - of course, it always can for ANYBODY no matter the stage, or method of treating it. One has to have in mind that most people that hang in here are those that DO have a problem, a vast majority that had no BCR are not here or on any other forum. It is really unfair to judge the method of treatment by stats from the forum that is visited mostly by people who have contiguous problems. It would be the same as saying that 99% of man actually do have PC since 99% of men here have it and only 1% turns out to be "false alarm".

Wishing everybody fast healing and below 0.1 PSA forever : ))) !!!

@thmssllvn interesting. I will bring this up to my partner’s doc asap. He had RP on 10/17 and other than getting a Viagra scrip, he only briefly mentioned injections for a future date.

Is it already too late?

https://pcri.org/news/2023/2/3/recovering-erectile-function-after-surgery-tkp6n
would be good to watch.