Prostatectomy Question? Side effects outweigh benefits?

Hello to all of my fellow PC patients and friends. About the most insightful comment I’ve read so far is “that there is NO, RIGHT, answer)! However, there are the answer(s) that are RIGHT & CORRECT for you! Having chosen and completed the RALP myself on 10/25/22, I feel confident it was the best choice for me. Given the fact, (one of the facts) that regardless of whether you utilize the surgical or radiation route there’s a 30%-40% chance that our cancer will reappear within the first 5 years after surgery. Secondly, radiation and surgery enjoy about the identical rate of efficacy so there’s no perceptive advantage regarding your choice and option based on l recovery rates. I continue to study Prostate Cancer and subscribe to various patient sites and discussion forums like this one. I find them all to be of value and informative. It’s not my intention to be the authority or represent the authoritative voice on anything. However, to be clear, nobody is ever “completely cured” of cancer! More succinctly, you are either in “REMISSION” or you are not!
Of course, I hope that all of us remain in remission the rest of our lives. I’ve also come to understand that one’s recovery from Incontinence and or ED are varied and come with different time tables and levels of success or not. I am turning 69 years of age this August. I was told and had researched that most men after their initial recovery from the surgery will return to their pre surgical levels and sexual abilities with the the functionality of their erect penis for sexual inter course with just the use of ED Medication. Assuming you had a successful “NERVE SPARING” surgery and outcome! Well, that certainly has not been the facts in my case. I was very sexually active with strong elections enjoying sexual intercourse with my wife 2-3 times a week prior to surgery. I’ve been taking 20mg of CIALIS daily without any measurable results. I recently started using a Penile Pump to assist with the rehabilitation of my Penis and it is helping me. It literally forces newer and higher levels of blood into my Penis which all of us need to help keep our Penile tissue healthy. It also provides the option of maintaining an erection for sexual intercourse as well. (With the addition of the Penile Ring placed at the base of your Penis before deflating the Penile Pump)! It’s not the favorite choice for my wife and I but it works and provides a workable solution for obtaining and maintaining an erection suitable enough for sexual penetration. Even better, I consulted with my Urologist who is assisting me with my Penile Rehabilitation and we tried my first injection of TRIMIX. You can read more about this on your own but it contains 3 different VASSIODIALATORS, which provides me a greater erection without the use and some uncomfortableness which accompanies the Penile Ring with the Penile Pump. As the “pills” were ineffective for establishing erections, the TRIMIX injection worked perfectly. The needle is similar to that of which a diabetic uses to inject insulin. Very little pain or uncomfortableness which dissipates in minutes. You are ready to go between 5-15 minutes after the injection depending upon whether you and your partner participate in any foreplay or not. For me…….I like having options, the “pills” are still supposed to play a part in my overall penile rehabilitation. The Penile Pump plays a crucial role in my penile rehabilitation and Option 2 for getting an erection for sex. The TRIMIX injection, Option 1 is great for getting an erection for sex almost on call……..So, I provide the above information and options as possible considerations for you to try concerning your overall recovery journey.
Like everything else that we’ve discussed above, the more successful, viable options you have, the more choices you can enjoy. Wishing you all a successful recovery outcome and adventure ahead.
GODSPEED

Surgery seems a ballsy move imo given the totality of the side effects of both options.

My dad had radiation in the mid 90s and he had massive regrets. I took that into account but still chose radiation in 2023 and couldn’t be happier. Times have changed. It is that simple.

There may indeed be a case for surgery but I don't think that "I just want the cancer out of me" is a good reason to go down that route.

Typically, in well over 90% of cases, there is no need to rush into any decision regarding treatment. Take your time. We are talking months here , not days!

My best friend (a total hypochondriac) went the surgery route and i felt after hearing his process at a later date, got totally scammed. Doc never sat him down and said that your Gleason score is 6 (one single core) and PSA under 4. He said his PSA went from 2.6 to 3.5 and that was what initiated the original concern.

It was only a year or so later than an article in the Sydney Morning Herald came out calling docs out on the abuse of power with dudes with elevated PSA. It has seemed to be deleted but maybe someone can smoke it out.

It is my opinion that a decision to go with surgery or radiation/hormone-therapy/active surveillance is a very personal decision. My local doctor did not even tell me that my PSA was rapidly moving through the 2/3/4/5/6/7's over the course of several years. Fortunately, I retired a bit early at 55 and was investigating ways to control my cholesterol with diet. The nurse practitioner (a friend of our family) that I was working with reviewed my medical records and found that my PSA had been increasing for quite a few years. In the end, I was a Gleason 7 (4/3) and opted for a radical prostatectomy. I did a significant amount of online research, referencing friends/acquaintances that had dealt with PC in the past, etc... In the end, the clear choice for me was a radical prostatectomy. I am one of those individuals that can't image leaving a known cancer to grow in my body. FYI - I am about as far from a hypochondriac as you can get :). Scanning tools and biopsies have advanced significantly over the years, but are not perfect. To rely on these tools to direct the radiation is somewhat of a risk in my opinion (no medical training, just my opinion). If I had found my PC at Gleason Score 6, I would have definitely had a radical prostatectomy, leaving me with a significantly lower biochemical reoccurrence percentage. However, it is what it is, and I am moving forward with the hand that I was dealt and the treatment plan that best aligns with my unique circumstances.

In the end, I feel that PC treatment relies on so many personal attributes (age, health, personal opinion, etc.) that it is only possible to give others their personal experience and factors they took into account when making a final treatment decision. There are good & bad doctors, their opinions are just one input to a final decision.

Best of luck to all those battling PC and God bless you all.

Jim

Yes, unfortunately your friend did not seek additional opinions from other physicians. Additionally, he would have learned quite a bit more from doing his own research. There is a plethora of information available. The best option for any PC Patient is the one that’s best for him. Obviously, the amount of cancer you have, where it’s located, your GLEASON SCORE, in addition to a number of competitive PSA’s taken over time, plus Digital Exam results in addition to a Prostate MRI are all beneficial to have before you make any kind of decision for surgery or radiology to treat your cancer. From what you’ve explained above, it sounds like your friend was probably still in a safe window for “Wait & See” or “Careful, Consistent Observation” before he needed to do anything!
Reputation of surgeons and radiologists are also important! Unfortunately, based on the numbers of PC Patients and physicians I’ve spoken and consulted with, your friend had surgery far too soon and probably didn’t need it at that point in time. I hope he is recovering well and doing fine. GODSPEED

Yes, he recovered and got back his wood too! Quite spontaneous as he describes it. Took about 18 months but he was young, fit and slim. Other players may not fare that well.

Totally a personal decision but one that can be life changing. My problem lies in the fact that a cursory scan of comments on many prostate cancer treatment forums could lead one to believe that the side effects of surgery are not that life-changing. They probably are for a majority of participants.

I just had proton therapy and it was not without its own set of issues but glad I chose that route.

Nobody likes to be here but we want the truth. Not a curated version of it.

Is that too much to ask?

You write that “ If I had found my PC at Gleason Score 6, I would have definitely had a radical prostatectomy” but the research clearly says that this would be a mistake. True Gleason 6 never metastasizes or at least close to never….99%.

I am always skeptical of broad statements around medical procedures/advice. Each person is an individual, with the freedom to make the decision that meets his goals and life expectations.
As I always state, I believe the medical tools available today are fantastic and provide doctors with a lot of data to make their recommendations. However, they are not perfect and limited in their efficacy. For example - A quick search will show several studies around Gleason Score accuracy when compared to final radical prostatectomy pathology outcomes. Overall, correlation studies look to show that Gleason Score is approximately 55% - 60%, depending on Gleason Score. Same thing with biopsies, excellent tool/process, but not perfect. The biopsy does a great job confirming if there is cancer, but many studies show that biopsy-based Gleason Score rankings are not that accurate. Below are a few statements from the US NIH:
The most common Gleason score by needle biopsy and prostatectomy was five. 37.2% of all patients had no change in score assignment, while 12.7% were 'over-graded' and 50.1% 'under-graded' by needle biopsy.

Of 241 cases 45 (18.7%) showed a significant change in grade from Gleason score 6 or less to Gleason score 7 or greater (Gleason score 7 in 41 cases, Gleason score 8 in 4 cases). Of 45 (53.5%) cases 24 that showed progression did so within 24 months of diagnosis.
Within the first 3 years, our data suggest that in most cases tumor grade did not evolve but rather that the higher grade component was not initially sampled.

Overall lay-man's recommendation - Take all the available information into account and make the best decision that aligns with your life expectations. Try to ignore the "this is the best option" and "why would you ever do that procedure" comments.

Best of luck and have a great weekend,

Jim

Good info. What were the issues with proton therapy?

I’m weighing in to share my own path. My PSA number trended up last year from previous tests but remained under 10. My urologist, after a DRE, suggested a biopsy which showed one “hot spot” graded at 3+3. At this point I’m leaning to active surveillance. Before deciding however, doc suggested an MRI which subsequently showed a “shadow that shouldn’t be there w 3+3.” This led to a second biopsy which showed a total of 5 hot spots; three 3+3s, one 3+4, and one 4+3. Game changer.

I’ve read that this path is not unusual at all giving the “hit and miss” of a biopsy. This all led to a bone scan which, thankfully, came back clean.

I’m 66 and have chosen a radical prostatectomy for Sept 14 (allowing my prostate to calm after the biopsy). I’d be lying to say I’m 100% confident this is the way to go. There are clearly side effects to any chosen path forward that each of us must evaluate for our own situation.

My point? Read all you can. Ask every question you can think of asking. Talk to friends and friends of friends who’ve walked the PCa path before you. Then, along with your wife, make the best decision for you. It’s not the same for everyone.

I wish you all the best of luck. May you each have the comfort of loving friends and family to support you and the benefit of a talented medical team to work with you.