I have grade 5+3 PCa, biopsy showed 3 cores cancerous, one indeterminate, one 4+3, one 5+3, all on right side. A recent MRI showed 'something' on the other side too, not caught by biopsy. I am strongly leaning toward removal because I do not want to deal with 1-2 years of recommended hormone therapy with radiation. I have talked to 3 different robotic surgeons. One, seemingly highly praised, strongly recommends 2 months of ADT, one shot of Firmagon, then 1 month of Orgovyx before removing it. This is currently NOT recommended by NCCN guidelines because it has not been shown to make a long-term difference, although this MD says it potentially will. Other surgeons do not recommend this, one quite strongly - claiming it amounts to malpractice, given NCCN guidelines. I'm also a little nervous about even 2 months of ADT, given I also have diabetes and rely partly on exercise for control. Any words of wisdom or experience here?
Also...another of the surgeons, highly experienced, is telling me that nerve-sparing surgery probably won't make a difference in my case and that they do not tend to spare the nerves on the side which is cancerous. Again, any thoughts?
Many thanks for any help...very tough to pick the right guy to do the work!
Written by
rbiker
To view profiles and participate in discussions please or .
They do a Decipher test on your biopsy cores and your therapy depends on your genomic risk score. ADT can last only 12 months if you have low genomic risk.
Brachy boost therapy has the highest cure rate, much better than surgery. If you have surgery first, you will probably have to have salvage radiation. Salvage radiation has much worse side effects compared to primary radiation.
You may want to fill out the following nomogram to see the odds that surgery will be successful:
Thank you for the thoughts and links! I failed to mention that I have had both a bone scan and CT scan, which both showed no spread. As I mentioned, I've also had a no contrast / with contrast MRI which showed a suspicious area on the other side. A genetic test showed no problems with the prostate cancer related genes (e.g. BRCA1) or any others. No one has suggested a PSMA/PET scan, but I see that it is likely the best way to map the cancer. Thank you again!
Those links TA gave you are excellent sources for you in consideration of treatment.But at this moment before you can seriously weigh options the bone scan/CT and a PSMA PET scan are what you need to do now.
The scans are absolutely critical in your situation to determine treatment.
I am mimicking what TA said but it is important.
Hoping all goes well that you have a good response to treatment.
I was diagnosed with G3+4 over four years ago at your age, 67. I had a very enlarged prostate and decided radiation was not the best option for me and I was pretty certain the cancer was entirely within the prostate. I visited numerous doctors; radiation oncologists, MO's and five urologists (all experienced surgeons). Once I decided on surgery, choosing the best surgeon was challenging. I chose one who I felt comfortable with and who had performed thousands of robotic prostatectomies. Now, I am 99.5% continent, urinary symptoms are hugely improved compared to pre-surgery, erections are OK but not as good as before surgery (but hey, I'm in my 70's) and all of my PSA's have been undetectible. I was back to full strength about four months after surgery. No second thoughts about my treatment decision given my situation.
It's great that you have had your MRI, biopsy, CT and bone scans. You want to learn everything possible about your cancer before making a treatment decision. Hence, a PSMA Pet scan is something you should strongly consider. You should extensively investigate all of your treatment options. Radiation treatment procedures have increased and improved hugely in the past ten years. I've never heard much about ADT prior to RP and I think you should be suspicious about that proposal. If you decide on surgery, you have to choose the most skilled and experienced surgeon you can find, even if it means you have to travel. Please try not to be in too big a hurry and explore all of your options with the best docs you can find, hang tough.
Yours sounds more advanced than mine (Gleason 3/4 preop, 4/3 postop pathology). I had a total robotic prostatectomy. My recommendation (leaving out all the mumbo-jumbo details that others offer, sounding sciency) or at least experience is that the full excision eliminates the cause of the cancer: the prostate itself. Just be rid of it and follow up. I had mine done 5 years ago, and thus far am cancer-free (no detectable PSA).
Hi. My situation was similar. 2 years ago diagnosed with Gleason 9 (5+4) but only in a small area of the prostate (9 of 12 cores were benign). I wanted to avoid the significant radiation and long term adt that comes with treating high risk prostate cancer. But was counseled that just a prostatectomy was not enough. I needed something systemic as high risk Gleason means there are likely microscopic cancer cells out there that are too small to get picked up on a scan
After much research decided to join an NIH trial of 6 months intensive adt (goserelin + enzelutimide + abiraterone) to deal with systemic cells followed by prostatectomy (by a top surgeon). I am very happy with the results. I had what they call “a complete response”. No cancer found in the prostate after surgery, nothing in the margins or lymph nodes. 18 months after surgery, psa undetectable, T fully recovered, no problems on urinary. Some ED but it seems to be improving. It was a hard 9 months but life is now fully back to normal!! If you live in the dc area I would strongly recommend the NIH trial. I think there are similar trials in California,ny and Boston.
On a side note, I would not go with 2 or even 6 months of regular adt followed by surgery. There were many trials of this 10 or 20 years ago and they all showed no benefit. These new trials are with adt plus newer drugs that are more effective. So adt plus abiraterone and enzelutimide. Or I think in some of the other trials instead of the enzelutimide they use daralutimide.
Sorry. One more advice. I am less enthusiastic than others on this forum about the usefulness of a psma pet scan at the start. I did a psma pet scan early on and it was less than helpful. I got a false positive which caused me anxiety for no reason. Also, it won’t pick up micro cancer cells so even if you get a negative, with high risk Gleason you should probably assume there is some micro cells out there and do something systemic. Don’t get me wrong. I fully support doing a psma pet scan if you are further along and are likely metastatic and want to find out where the Mets are. I am just skeptical of the usefulness at the beginning of the journey.
Thanks Tony666 for sharing your experience. None of the urologists I talked to suggested a PSMA/PET scan. They generally seem to think it's likely that with high-risk PCa that you DO have some 'escapes'. They all agree that after surgery it's around 50-50 that I would need additional radiation (but no ADT). That's pushing me towards the RT approach over surgery. If I could just convince myself that the Orgovyx for 1 year (my radiation guy thought that would be enough) is not going to be too debilitating. To control diabetes effectively, I really need to be exercising also.
I have a slim chance of no metastases, but high hopes that I might be among the lucky few who don't and for whom prostatectomy could leave me cancer-free and without side effects of radiation.
My interest in ADT prior to prostatectomy was 1) it seemed logical if the ADT could slow the growth and reduce the likelihood metastasis of the cancer within the lead time of the surgery (Some time in October, 6 to 8 weeks away) 2) some studies suggest it is possible despite not being within NCCN guidelines.
I figure with a lead time of 6-8 weeks before surgery, I would need a short-term course of ADT, but it would perforce need to be fast-acting. Bicalutamide, Flutamide and Nilutamide appear to be the fastest-acting with the least objectionable side effects.
FWIW, my urologist/surgeon recommended two months of ADT before surgery OR radiation, in my case, to shrink the prostate. I ended up getting radiation, and am almost done with the ADT finally (18 months). The side effects of the radiation itself are/were minimal (I had 20 treatments with a Varian TrueBeam machine). The ADT side effects are annoying but not really life-changing if you keep active.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Leaning towards radical prostatectomy
Experiences with combination therapy? (ADT/Brachy/SBRT)
Intermittent ADT
ADT duration for high risk with Cribriform
Go through with radical prostatectomy or explore Hifu?
