Scheduled for a Radical Prostatectomy and having Second Thoughts
Am I doing the right thing? I am 69 years old, in good overall health and was recently, to my utter surprise,diagnosed with prostate cancer. My PSA in 9/21 was 1.46; 11/22 was 1.64;12/23 was 1.33 and increased to 2.46 in 8/23. This led to an MR of the prostate in 10/24 that revealed a PI-RAD 5. with no evidence of extracapsular extension and no evidence of enlarged pelvic lymph nodes. 11/24 my Prostate Biopsy showed a Gleason score of 4+3=7 Grade Group 3 of the left lateral apex; a Gleason score of 4+4=8 Grade Group 4 of the right medial apex; a Gleason score of 3+4=7 Grade Group 2 of the left medial apex. My PSMA Pet Scan showed no evidence of metastatic disease.
I have met with surgery and radiation oncology and have reviewed the advantages and disadvantages of both and have elected to have a radical prostatectomy the end of this month.
I am scared and wondering whether I am making the right decision for surgery vs. radiation vs. doing nothing. After all my PSA was still within normal limits even though it was increasing.
I would love any and all thoughts on my scenario. I am worried about my quality of life after surgery. I appreciate any and all thoughts from this group on my concerns.
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Mine was similar. I had a PI-RADS4 & Gleeson of 4+3.
I'm 60.
I researched the effectiveness & side effects of radiation vs surgery before getting anything done.
Radiation may cause both bladder & bowel incontinence.
Surgery generally avoids the bowel incontinence problems. Mine did.
Both can cause erectile issues, but with radiation, the effect is delayed for several months - though does eventually happen.
For surgery, bladder incontinence & erectile disfunction are pretty much immediate (in my case, anyway) but should get better over time.
For me, the prospect of bowel incontinence was an immediate no.
I had the prostatectomy about 3 months ago & still have incontinence - although I don't regret the surgery.
Just one opinion/experience from one guy.
You'll get others.
Talk to Jeff Marc- he’s the expert on this forum
Some people with prostate cancer do not produce a lot of PSA, Sounds like you’re one of them. They suspect that those people also don’t produce PSMA so the PSMA PET scan finds nothing. That may be true in your case, The scan does seem to show that it has not gotten out of the prostate, if you do produce PSMA.. An FDG pet scan can give more information if you don’t produce PSMA.
You have a Gleason 8. The other numbers are irrelevant they only go by the highest number. It would make sense for you to get a second opinion on those slides. I’ve heard people go both ways having the slides show lower Gleeson scores or higher. A Gleason 8 is aggressive you want to do something soon to prevent spread.
Doing nothing would be a very bad move. Get a Decipher test, it will tell you how aggressive the cancer is about returning, after treatment. Ask your doctor about it.
The long-term results after surgery or radiation are about the same. If you have surgery, you want to make sure they spare the nerves. That would probably allow you to get an erection eventually after surgery. That’s one of the big problems with surgery you lose the ability to get an erection, There are things you can do none of them Real easy. After radiation, most people are able to get an erection still, though it may go away after a while.
Are you working with a center of excellence to get the best opinion on what you should do? There are also a number of other treatments that would probably work for you, Immunotherapy , HIFU , Cryoabalation , NanoKnife , TULSA PRO. They don’t involve radiation and usually allow you to have surgery or radiation if they are not successful.
After surgery, I didn’t have any noticeable problem with incontinence, After radiation, I didn’t have a problem with incontinence for about five years, then it started to become a problem. Your results will vary, Everybody reacts differently.
I believe it boils down to personal preference. It is cancer after all and the research I have done, your life will be different and be careful getting your hopes up that things will get back to normal. I went the 45 radiation treatment and Lupron procedure and have done rather well. Surgery. My Oncologist told me this in so many words. The problem with prostate surgery is twofold. Because there is so much "connected" to your prostate, getting all of the prostate is problematic. If too much is left the cancer may return. If the surgery is too aggressive, it will most likely result in other issues. When I made my choice, my oncologist told me this, the choice I made was the one he would have recommended to his father. If the radiation and hormone does not work, you can always do the surgery. He did say this. The quality of the surgery obviously depends on the skill of the surgeon. I have been happy with my choice, but all of this is just an opinion.
I'm not a medical professional nor do I have extensive experience with PCa, and I totally understand your fear. But from the information you gave, I'd strongly advise against the "doing nothing" option you mentioned as your numbers are way to high to ignore. I was 70 last year when I was diagnosed 3 + 4 = 7 PI-RAD 4. I have a bad family history as I have 3 siblings (2 sisters dead from breast cancer and 1 brother who had aggressive prostate cancer about 30 years ago and bladder cancer from the radiation about 7 years ago). I should have gotten the decipher test to measure the aggressiveness, but I was pretty biased to just getting surgery to get it out due to my sisters experience and particularly my brothers experience 30 years ago (which wasn't particularly smart on my part). I went with NS RARP at Mayo Phoenix 06/2024. The prostate pathology report after surgery confirmed 3+4=7 and found cribriform and IDC. My recovery after surgery exceeded my expectations. At this point, I'm fully continent and my urination is actually better than before surgery since I had untreated BHP. Other than ED my life is back to normal. The ED is a problem, but I am slowly recovering. Time will tell how far I recover. At this point, when I saw cribriform and IDC on the pathology report I was actually pretty happy with my decision to have the surgery. The smartest thing I did was go a recognized cancer center of excellence. The dumbest thing I did was decide to get the surgery without getting the decipher test and fully considering all the options available to me. There's a lot of expertise out there and I didn't do the best job exploiting the expertise available at a cancer center of excellence before making my decision. All that said, the surgery has (mostly) worked out for me so far. Best wishes on whatever treatment you choose.
I am at Mayo In Phoenix. Thank you for your thoughts. I recognize that there are no easy answers but I appreciate your thoughts. I will ask my surgeon about a FDG pet scan.
Sorry to welcome you to our club. I was diagnosed at 68 with 4+3, Decipher of .86 (read "aggressive"). PSMA PET showed it to be contained to the prostate and on one side.
I chose SBRT with a Barrigel rectal placer, and received 36.25 Gy and a focal boost to 40 Gy at the lesion over 5 sessions. Also did ADT with Orgovyx for 6 months. I chose radiation over surgery as I was willing to forgo likely short term ( and perhaps lingering) side effects instead of possible long term side effects ,knowing the "cure" rates are essentially the same.
I competed SBRT Dec 28, 2023 and ADT 6 months later. I have very mild short term GI and GU side effects that resolved within 10 days. The Orgovyx was entirely tolerable. At this point, no ED, no GI or GU side effects. My PSA was 7.8 pre-treatment, and three months ago it was 0.55. I go for another PSA day after tomorrow.
My urologist told me at my age it was up to me as to what treatment to follow.
Stay Strong Brother, we got this.
My thought was cure rates were essentially the same. Dr told me that radiation made the prostate less likely to be removed nerve sparring. With an 85% success rate on incontinence and ED I decided on robotic nerve sparring surgery. I felt I could always go to radiation next. I am 5 years out. PSMA scan was clean. Post surgery results showed nothing in the margins. I caught mine very early. I have had no medications or cancer since. However I ended up with incontinence issues and ED. I was 68. I would do it again. I might chose a center of excellence this time.
I did SBRT radiation and six months of ADT for Gleason 7, 4+3. ADT was not fun. My effects were more mental than physical. As for radiation, had no bowel issues and some mild burning when urinating that lasted about two months. Maintained erections throughout treatment using Viagra, but lost the ability to reach orgasm after four months of ADT. Am told that is pretty normal. Just over two months after stopping ADT (Orgovyx) my testosterone is at ~260, almost low normal, and orgasms are back. PSA is .1, which is good if you still have a prostate.
Am taking 20 mg Viagra every night for two years per a sexual health doctor who said it has a decent chance of reducing radiation damage to blood flow. We'll see. Considered surgery too but the wait was almost nine months and I wanted to do something sooner rather than later. If I had chosen surgery I'd just be getting it now vs. getting back to mostly normal.
Re: Immunotherapy , HIFU , Cryoabalation , NanoKnife , TULSA PRO.
Apparently, these treatments really only work properly with somebody who has a Gleason of 3+4 or less. I have been recommending looking into them for people that have higher Gleason scores, It appears I was wrong about that and they should not need to investigate those techniques because they aren’t going to work well with those higher Gleason cases.
A 3+4 with intraductal or cribriform would also not be looking for those treatments.
I would love to hear from somebody in here that has had one of those treatments with a high Gleason score, and how successful it was.