I am currently at the point of deciding on treatment for my high risk prostate cancer.
Here is where things stand thus far:
October 2023: PSA of 22 discovered at routine physical
November 2023: PSA score of 25.6 upon retest by urologist
December 2023: TRUS Biopsy. Cancer in all 12 cores. Gleason 8 & 9.
December 2023: PSMA Scan. Cancer currently contained within the prostate, no metastasis detected. Retest for PSA was 24.8 so no major changes in PSA since October.
January 2024: Visit with a medical oncologist. Essentially said I have a high risk prostate cancer but good that it hasn't spread beyond the gland. "House is not on fire, but don't wait 6 months". Said surgery or radiation are my options and the outcome of both will be similar. Retest for PSA was 24.8 so no major changes in PSA since October.
Currently I am trying to decide between surgery or radiation. I was leaning toward radiation but the 2 years of ADT and those side effects are really a deterrent now that I know more. I have spoken to two friends of friends who have had RALP surgery in the last 2-3 years with very positive outcomes (said they would do the same again).
I hear over and over again I should be seeking second (third or fourth) opinions but right now nothing seems controversial. Should I seek multiple opinions once I have had consultations about treatment? I will be speaking to a radiation oncologist this week. I also have MSK Direct as a benefit through work and I will give them a call tomorrow to get a consultation there.
I'm curious if anyone reading this with a high risk situation has gone the route of radiation and how that worked out.
I have also read that a combination of brachytherapy, EBRT and a short course of ADT could work in the case of high risk PC.
Now that I am really digging in I find the massive amount of available information somewhat overwhelming, but I am much more open to RALP than I was initially. I appreciate any insights you may have. Thanks!
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CavScout
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Between surgery and radiation- we have retrospective studies showing that radiation - brachy boost therapy - is twice as effective in controlling the cancer:
If you opt for brachy boost therapy, a strongly encourage you to pursue high dose rate brachy boost rather than low dose rate brachy boost because the urinary side effects are milder. You can get the brachy boost done in 1 day and the external beam part done in another place in about 25 sessions.
Consider the following clinical trial that includes apalutamide for men with high Decipher scores and only 1 year of ADT for men with low Decipher scores:
I see Brachytherapy boost referenced often, what is your opinion on LDR seed Brachytherapy first followed by a LINAC boost? This is what was offered to me along with ADT 4 months prior, during, and present 8 months total duration, was planning to stop soon but had read some adjuvant could be beneficial. PSA 18 at start, .01 now, Gleason 4+3, apparently contained. Thanks for any input. Appreciate your knowledgeable contributions here TA.
The boost is from brachytherapy to the prostate, the external beam is a lower dose over a wider area, so it is called brachy boost therapy. It doesn't matter which they do first. The right amount of ADT for unfavorable intermediate risk is somewhere between 4 months and 1 year.
Thanks TA. I figure I’ll stop after 9 or 10 months. Since the testosterone takes a while to recover I figure my testosterone will be super low or non existent for at least 3-5 months possibly being beneficial as well from an adjuvant perspective. It seems my ADT was front loaded more prior to treatment.
Statistics are ok. But to keep in mind : the younger the patient are, the longer they could live after a treatment. Would be intersting to know about side effects from RT after 20 years if there are some survivals, with surgery the side effects are instantly. The mortality difference statistically with treating or not treating a PC is not so big after 10 years, there is always a way to treat PC. The only risk of treatment and also the goal of treatment is the QoL, thats what makes this pathology so delicate to handle. Thank you to this forum and chats and Malecare.
There are no new side effects of RT that occur after 20 years. All side effects that happen occur within a couple of years, in spite of myths you have heard:
If you have localized PCa, it may take 20 years to kill you if untreated. However, if left to metastasize, you will have to be on permanent ADT, as well as chemo, advanced hormonals and radiation for the pain, eventually opiates and losing mobility.
It s not a myth that i have heard, it was from 2 urologist over 70 yo that where practicing there entire life as urologist. Of course the technology is getting better. Problem : it is getting better faster than a statistic from 10 or 20 years. That is the myth
It is a myth perpetrated by urologists (who don't have a clue about radiation) to dupe patients like you. I have shown you the actual data. I agree that radiation has improved vastly since that data. The ProtecT trial used 3D-CRT - a kind of radiation that hasn't been used for prostate cancer in the US for over 20 years. So the data would be far better now.
To tell you the details these 2 urologists had to deal with urinary problems, baldder urethra etcc, on men (in there 80s may be) who have had radiation many years before. I m not sure that they would try to dupe me (in my "young" age). On the other hand of course a surgeon can do well and if there is recurence time after the RP, he will tell me : "sorry" and send me to a radio-oncologist for salvation.
I will say my urologist sent me to his radiation oncologist, which took 5 weeks, even though I was stage IV. When I went to MD Anderson I had chemo, within 3 weeks and then radiation. My urologist is very well respected in urology, not so much in prostate cancer, high risk.
All treatments carry risks. It was ungenerous of me to say that they were simply trying to dupe you. They were duped too because they don't understand statististics. Here's why: For example, let's take bladder neck contracture requiring surgical intervention. It occurs in less than 1 in a hundred men getting primary radiation for PCa. But hundreds of thousand of men have had RT. So your urologists may have been kept quite busy over their careers performing surgery on such men. They can't be blamed for thinking that radiation usually results in bladder neck contracture because that's all they see. It is a cognitive error called the "availability heuristic."
My urologist told me after my 1st biopsy that he performed that I had a very small tumor that was the slow growing type. He said "I can think of 10 other things that will kill you before this becomes a problem." Two years later my PSA was in the 900s, my next biopsy showed 12 cores at Gleason 8 and 9, and the initial scans showed metastasis in my skeleton and a couple lymph nodes. I was referred to a medical oncologist who started me on ADT and chemo. That was in June of 2020. That got things under control for now. IMO, Urologists are not the right specialist to deal with prostate cancer.
Sorry to hear that you not treated effectively. Did he even follow up with PSA testing every three months and DRE exams twice a year? How/why did he guess that it 'was slow growing type'?
Please see my Bio. We are similar but I had a suspect pelvic lymph node, perineal invasion, seminal vessical invasion and suspected epe. I am 30 months out from HDR Brachytherapy, EBRT and two years of ADT plus Abiraterone and prednisone. My PSA is stable between 0.06 and <.05. I’m in the watch and wait mode to see if my treatments were curative or if I will need additional treatment. Given your high risk disease I would suggest Genetic testing. I wish you the best. Feel free to PM me.
You are in the right place to get support and advice.
A lot of information to process for sure.
My husband was diagnosed with high risk cancer this past August… PSA 46.6, Gleason 9 , cancer localized to the prostate, per PSMA PET/CT scan…at 73 , and with other health issues, surgery was not an option… with such a high PSA and Gleason score it was assumed that the cancer was advanced … he chose to hit it hard with ADT ( Orgovyx) and abiraterone with prednisone for two years, as well as proton radiation.( 28 treatments)
You mentioned knowing two people with successful outcomes with RALP… was the success in regards to manageable side effects or cure?
Did they have very high PSA and Gleason scores?
Best to make decisions on treatment based on your medical team’s recommendations and the standard of care protocols based on research, for your specific level of risk.
My husband had mild side effects with radiation, which appear to have mostly resolved .
ADT and abiraterone have caused his libido to tank and fatigue… some mild hot flashes… he is working on increasing exercise… still early days
It sounds like you are doing good research , best of luck with choosing your treatment plan!
CavScout - Gleason 10 here, but lowish PSA (never went above 3.5), started ADT about 6 weeks before radiation treatments started. 45 IG/IMRT/ARC treatments, 83 Gray. Continued ADT until a total of 18 months.
PSA during ADT was undetectable. After ADT it was around 0.1 to 0.13, until I stopped finesteride (which halves PSA reads) when it did what I expected and went to an average of 0.22 +/- 0.03 for 2 years now, except this last quarters PSA has dropped to 0.15 - that may be due to Repatha, no evidence but it seems like a coincidence otherwise.
That's it. No semen. Sometimes mild erections (not really a lot different than before treatment, hey - I'm creeping up on 78, what'da expect? I'm not 15 anymore..) No rectal problems, had pre-existing urinary issues - had a green-laser treatment (think TURPS done with light) - and then had an issue with too much pee. That's very slowly resolved itself (about 2 years).
I'm now considered in remission - no evidence of disease. Will I stay there? My PSA being that low that early says there's a really good chance I will.
I avoided surgery (for various reasons), and if you really want to be cautious take Tall_Allen's advice, although some of the more modern treatments with just ebeam radiation appear to be not inferior to the brachy boost + ebeam. Numbers aren't in since this is a rapidly changing field, and any study you see is based on 10 or more year old treatments. Things have changed a lot in 10 years. I believe Allen is basing his statements on studies he's reviewed. I'm just passing along what some educated MD's have passed along to me.
Good luck with whatever you choose. It's not a death sentence.. took a while to get over that for me.
what has changed in just past 10 years that would result in RT + ADT being just as effective as brachy boost + ADT for high risk? Using some form of SBRT + focal boost +ADT?
Much more accurate targeting allowing for higher doses to the tumor, plus much better defined beam shaping capabilities allowing for higher doses to the tumor.
And the rise of photon if you believe what they're saying, again allowing for higher doses with less damage to the organs at risk (IMHO, not superior but not inferior.. I had the choice of photon at no additional cost to me, I passed on it.)
I had 83 Gray of radiation. 10 years ago - it was thought that anything over 50-60 something was really risky. The improvements in the machines, the techniques, the planning software and things like "space-oar" and active targeting combining an MRI with a Liniac have allowed getting doses to the disease that would only have been possible 10 years ago by doing brachy.
SBRT isn't necessarily a superior treatment for high-risk (high Gleason) patients, it's more commonly used for low risk or moderate risk disease. It's the new "hot setup" and a lot of places spent a lot of money for the machines to do it (cost driving treatment, but in this case cost of the machine..) so they're applying it more widely.
My radiation onc said he didn't think SBRT applicable in my case, he wanted the ability to really target the tumor down to the very last millimeter without overdosing the nearby organs, and that was best done by multiple smaller doses of radiation. Any misalignment on a particular day was a much smaller part of the overall treatment if done by SBRT.
The machine I was treated on was capable of SBRT, but my oncologist thought it not the best treatment for me. So far I can't argue that he was wrong, the results have been good (low initial PSA, and consistently low PSA over some time.. which is thought an indication of good long term results.)
That treatment simply wouldn't have been possible 10 years ago. Tall Allen is correct that reports (based on older treatments) show superiority to EBRT + Brachy, but the results aren't in on newer treatments yet.
It is a game of chasing your own tail, as treatments improve - there is always the chance a newer treatment is going to be not inferior (careful wording there..), equal, or better than an older tested treatment. Typically that's the reason for the newer treatment. In my case I went with the opinion of a medical professional who seemed unusually bright, seemed to have my interests at heart (due to a mutual connection we both had) and had a new machine to treat me with.
Your choice may be different, and I have no argument with TA - @CavScout asked for men's experiences, I passed along mine and the rational in choosing this treatment. With the exception of his higher PSA and my higher Gleason - our diagnoses could be seen as identical.
maley2711 - I see by your bio that you were offered similar treatment to what I had: "Age 73 1/2. Have been offered 28 session hypofractionation at Kaiser using VMAT and cone beam CT imaging.....no fiducials and no SpaceOar. 18 months of ADT before, during, and post radiation."
It appears you were high-risk (G9) at diagnosis. I also had no fiducials or SpaceOar - my rad-onc said those make the techs a bit less careful (his words "made them lazy relying only on the software"), they are really careful on the treatments done without those. He wanted them paying very close attention on my treatment (and I'm sure they were - a good friend was one of the techs doing the treatments..)
If you think you can manage the side effects of a surgery, i would go for this. Choose a godd surgeon with experience. At least you will have only one procedure, and if the work is done properly you should be cancerfree after. May be check before with a Pet Scan if there are cancer cells producing PSA outside the prostate before. That s what i did and i m ok with the side effects. I was lucky i had 2 surgeons and one assistant. My Gleason was not so high so my risk was also not high so i wasnt in a hurry. I hope now that my PSA will stay 0.0something until the end of my life, otherwise i will have to do salvage radiation. I cant answer about ADT therapy, or any RT and there side effects. Age is also to consider, i m 57 yo. The advantage from surgery : Non toxic, plus it will save you from any urinary prostate problems if you manage the side effects.
Gleason 9 ten years ago. It was explained to me that the chance of metastasis in spite of results from the scans that were available then was high with gleason 9 and a fairly high (maybe 20) PSA at diagnosis Had " a combination of brachytherapy, EBRT and a short course of ADT" Was Ok for about 7 years then PSA started to rise rapidly so on ADT full time and then orchiectomy. Most recently PC became largely castrate resistant. Chemo for 6 cycles held PSA during treatment but no miracles. Now doing Pluvicto and it seems to be preventing rapid rise of PSA and controlling pain. Lots of annoying side effects like recurrent painful UTIs major hot flashes etc but life is still worth living.
Hi, I was diagnosed in March 2023 with: acinar adenocarcinoma with Gleason 4+5=9. PSA as high as 3.7 and it is otherwise a T2 tumor radiologically. PSA was never as high as yours and 6 of 11 cores taken cancer was found. You had 12 of 12 so likely why your PSA much higher than mine. I decided quickly after diagnosis my treatment path after meeting an onchologist and surgeon. They told me both would likely have the same treatment result noting with a prostate removal highly likelihood of impotence and incontinence. I said no thanks and chose 25 visits of EBRT + HDR Brachytherapy. Of course having the radiation markers placed in my prostate was uncomfortable but had local pain killer. Started hormone therapy in May with a Pamorelin shot + Bicalutamide. Radiation was from August-Sept. HDR Brachtherapy i was out and intubated for 4 hours where they did HDR Brachytherapy. I stopped taking Bicalutamide since it was impacting my liver values. Ok now after being off it and I will take Pamorelin shot every 6 months for another year to of course kill the testosterone. In december before Xmas oncology center declared me cured after reviewing blood test. PSA not measureable anymore at .1. Testosterone killed as well. Now monitoring. I have had little side effects. Cant complain reading the experiences of others. Ok testosterone is down, sex libido is gone but it still works. dry orgasms but who cares. I live in Lund, Sweden and right by a University hospital where the oncology center is. So going in every day was not an inconvenience. Did it on way into work. Took 5 minutes. Note I am a runner so had good health going in. No other health issues. Take high blood pressure medicine but other than that healthy. Ok like i said they say i am cured but i dont know if you ever are mentally at least. Who knows what the future holds but my choice came down to what was the least evasive and that was radiation. Good luck.
I just went through a similar decision recently and decided to go the surgery route. It was performed on 01/09/24. I’m presently at home recovering after being released the following day. I do have the follow up appointments scheduled and will keep you posted as to results. So far, minimal pain- - feels like I’ve performed a lot of sit-ups. Catheter is not comfortable and won’t be removed for a few more days and the bags are a pain. But, all & all much milder than I was expecting.
My husband had/has (it never leaves, really) high risk and he was told for him, radiation. Reason one: the way his prostate is, there was involvement with too many other parts, can't recall the term, but not as easy an operation as some. Reason two, age: at 76, too old to strap to a table, turn upside-down for extended amount of time, too much risk.
My PSA was 25 when diagnosed and 30 at 3 months later when firmagon started. You need to get on firmagon fast, then ponder your options. You also need to start resistance and aerobic/cardio exercise now, the more the better, regardless of APCa treatment type.
Getting a daily series of 20-30 slots for IMRT or SBRT takes time -- schedules are full at any time for 1-2 months ahead. I had IMRT and ADT (Lupron + Abiraterone) per CHAARTED and STAMPEDE trials.
Get familiar with those trials and your MO/RO conversations will improve. You might be a candidate for triple therapy. That was not yet SOC when I went through RT + ADT.
In addition to getting familiar with relevant trials, get familiar with the NCCN guidelines relevant to your particular case. Trial data and NCCN changes come out frequently.
Set aside any fears of side effects when it comes to RT and ADT.
For many of us, facing PCA is the first time in our lives where our life itself is at stake and every decision path is fraught with unknowns and dangers. Very stressful. A lot of us have found music to help a lot. Much more about that elsewhere on this web site.
i was diagnosed at age fifty. Gleason seven with perineurial invasion. Studied all the research then and chose the then novel and controversial brachy-boost. Had complete biochemical remisdion for 18 years without ADT. Decision to not have surgery was based on dr walsh published data at that time for progession free survival after surgery. Surgery for patients with gleason greater than seven had high probability of disease reoccurrence within first three years post op.
If you talk to a hundred people you will hear a hundred different experiences with any given treatment. Allen is very knowledgeable and has my respect. I had RARP in early 2018 and I still regret it. I had to get radiation less than 2 years later for a recurrence. Radiation was a bump in the road for me compared to that RARP surgery.
I had to go to a large city over 200 miles away to get the damage repaired from what my surgeon did to me during my RARP. It took me 3 years to get the 2nd surgery and it truly made me wonder if I wanted to live. I am not trying to advise you on which treatment to have, but just to make sure you vet your surgeon EXTREMELY well if you decide to get surgery! My experience is an outlier, but feel free to PM me if you want to know more.
I am 73. Diagnosed with Gleason 3+4 November 2011 and scheduled for RALP January 2012 but developed blood clots [DVT and PE] so RALP canceled. I had ten years of Active Surveillance during which I rigorously studied every treatment for prostate cancer including comparison of side effects. I was involved regularly on multiple listservs. When the time came [January 2021 PSA jumped to 11.2 and DRE painfully disclosed a large tumor in the southern hemisphere] and my bone scan confirmed metastases to sternum, ribs, and tailbone, I chose SBRT [cyberknife] with Dr. Robert Meier at Swedish Hospital in Seattle. This treatment was followed with two years of ADT [Eligard].
I am very pleased with the treatment and follow-up. I discontinued ADT in November 2022 and the hot flashes are finally decreasing in frequency and intensity.
Every day is a gift.
Good luck and Godspeed in making your treatment decision.
I had Gleason 9 and ECE and had open RRP and have had no recurrence in the prostate bed. Some distant metastases (that were outside of the field that would have been radiated back then) have created a game of whack-a-mole but one of the reasons I had surgery and would do it again is that ANY PSA we measure is cancer, there is no wondering how much is the remains of the prostate gland and how much is metastases. That was nine years ago, surgery at MSK.
Yes, I had a nonzero PSA after surgery so we knew there was something somewhere, and I had an early PSMA scan in an NIH clinical trial. Did intermittent ADT until castrate resistance, treated until no evidence of disease and then had vacations until PSA=5. I've been on continuous ADT for I think four years now. I'm 9 years in, and the MSK nomogram for my stats back at the time gave a 2% chance of living 10 years, so crossing my fingers!
I'm about 3m ahead of you. I have Gl 9, PSA 12.7. I have elected for Radiotherapy rather than surgery. My reasons are set out on the Prostate Cancer community, rather than advanced PC: healthunlocked.com/prostate...
My PSMA PET scan showed no spread. However, my oncologist has calculated that I have 70% chance of some spread to the lymph nodes which would be too small to show up on the PSMA PET scan (i.e. below about 5mm in size). My urologist had said previously that there was no need to do anything to the lymph nodes as no spread had showed up on a bone scan or an ordinary CT scan. I know of people who have had surgery, got a really low PSA and then 2-3 years later got a rising PSA with spread to the bones.
So far, the ADT has been manageable. RT due to start at the beginning of March.
Thank you all very much for your kind and thoughtful replies. I appreciate you taking time from you busy schedules to help inform my decision making process. I am going to work through all of the replies and may come back with additional questions. Thanks again!
Information is King on deciding on your next step! The Crazy part of this journey we are on is that there is not a one size fits all approach to any of the PC!!! I highly recommend Dr Walsh's book, Guide to surviving Prostate Cancer. There is a lot of great information in there to help you decide. One think I didn't see mentioned is your age. That was a big factor in all that I talked with when deciding whether I go with a RALP or Radiation. I chose RALP at age 63 with Gleason 8 on Biopsy that came back as Gleason 9 on Pathology of the Prostate with an unfortunate positive margin on the Bladder neck... Next PSA in 2 weeks to see what is next.... We are in A Marathon and not a sprint with many side roads. Wishing you well with your decision and Journey!! Here for any and all questions.
Check out the podcasts on pcri.org. They are a wealth of information for treatment and recovery. Especially the recent one on Brachytherapy. For your risk I believe it says brachytherapy plus EBRT plus some ADT. It describes how you can be treated with brachytherapy in 45 minutes. Worth flying to CA for Dr.Kurtzman or Dr. Sylvester in Florida. I was Gleason 10 with PSA 180 - going on 5 years with above plus Zytiga. Finished treatment over a year ago. PSA neglible now. You should be able to consult with Mark Scholz at PCRI via phone to get treatment plan for your local doc to follow.
Thank you Orange13. I have been digging into the PCRI videos and have found them to be very helpful and informative. Yesterday I had a 30 minute consultation with on of PCRI's counselors which was also extremely helpful. We discussed exactly the treatment plan you outlined above and I'm beginning to think I'd like to pursue that course of treatment myself. Glad to hear you have had a positive result!
I am no expert and have no opinion on which treatment you should select. But- having been on ADT for more than 11 years, all I can say is that the side effects from ADT are: annoying, unpleasant, and of course, the loss of sex drive is very disappointing. Having said that- to have to be on it for 24 months or less, sounds like a gift to me.
At 60 I was diagnosed as a Gleason 9, 5 +4. My urologist wanted to operate immediately. I got a second opinion at the time from Johns Hopkins in 2003. (Yes, 20 years ago). They said they would not recommend an operation as the cancer had probably already metastasized. I elected to do 49 sessions of IMRT radiation...it was tough side effects but I know now that it is better. Then I went to Dr. Myers in Charleson, VA. who put me on a mix of hormone treatment and supplements including Avodart. Obviously it worked for me. I now go once a year to the University of Colorado where I see a research oncologist and am doing well. I did have a relapse with metastasis to the bones in 2015 but that was treated and I seem to be cancer free so far.
Not speaking from experience but I view radical prostatectomy as the most invasive and potentially quality of life impairing treatment. I suggest that you consider reading Dr Scholz book "Invasion of the Prostate Snatchers". I chose full gland HIFU surgery myself but my situation was not as high risk as yours.
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How to Starve Cancer - the book 
My journey started March 2016
Prostate removal after radiation??
Rising PSA 1 year after radiation and 6 months after Lupron
New Developments in My Husband's PCA Journey
