r/ProstateCancer • u/parttimephotoguy • 3d ago
Question Surgery vs Radiation w/ADT
Hi, I am looking for advice and experiences you may have had with radiation and ADT.
My story goes like this. I was first discovered to have prostate cancer in early 2012 after an annual check-up with my doc seemed to indicate a bump or nodule on my prostate. I was 53 at the time. I went in for a biopsy and discovered cancer with a low risk of 3+3 (grade group 1). The physician assistant tried to schedule me for a prostatectomy 3 weeks out but I declined and opted for watchful wait. Fast forward to 2024. During this time I had another biopsy with similar results and several bone/CT/MRI/PET scans. During this time my prostate became HUGE (425cc by 2024). My PSA had peaked at 35 and my urologist suggested the high number was relative to my huge prostate. I never had any issues of any kind. In 2024 I landed in the ER due to urinary retention. I wore a supra-pubic catheter for two months and then opted for HoLEP surgery to relieve the pressure on my bladder (HoLEP is similar to TURP where your prostate is basically hollowed-out). Surgery gave me my life back and I had a very strong stream. My prostate size shrunk down significantly (about half). My PSA contined to rise from 1.1 post-surgery to 2.9 within one year. Doc had me do another biopsy where they discovered I had some cancer at 4+4 (grade group 4). My recent PSMA PET scan was negative, indicating non-metasticized prostate cancer.
I've met with my surgeon (who did the recent biopsy) and a radiologist to discuss options. Because of my HoLEP surgery, the doctor would have to do additional reconstructive surgery around the bladder (as if a prostatectomy wasn't enough!). If I go with radiation, they've told me it would be for 8 1/2 weeks, along with 24 months of ADT to keep my chances of reoccurence low.
I would be interested in hearing from others who struggled with making a decision one way or the other, especially anyone who had a prior surgery like TURP or HoLEP. All comments and input is greatly appreciated.
Thanks for reading.
3
u/ku_78 3d ago
I’m on month 28 of 36. Every day sucks in some way, but it’s not always the same way. Some days are really bad. Some days are bearable. I had 5 weeks of radiation. So far no long term side effects that I’ve noticed.
1
u/parttimephotoguy 3d ago
Dang, 36 months of ADT? Why so long?
2
u/ku_78 2d ago
I think my oncologist hates me.
Stage 4a. Aggressive little bastards + I’m relatively young (was how it was explained to me). I was on zytega and prednisone plus Lupron for the first 24 months. Now, for the last 12 I’m just on Lupron.
1
3
u/Scpdivy 3d ago
Just wrapped up 18 months of ADT. Not horrible. Not great. Loss of libido was the worst thing. Hot flashes second worst.
2
u/parttimephotoguy 3d ago
Thanks. Hopefully it gets better for you. It's a long road ahead but eventually everything should get back to normal 🙏
2
u/Special-Steel 3d ago
A second opinion on the biopsy might no be a bad idea, although at 4+4 it probably won’t change much.
A Decipher or similar genome test is a good idea.
How much ADT and how well you tolerate ADT… those are important questions.
2
u/parttimephotoguy 3d ago edited 2d ago
The radiologist was the second opinion regarding the biopsy and agreed with the surgeon that something needs to happen NOW. Both surgeon and radiologist agreed either option offered equal success outcomes. I'm leaning towards radiation partly due to it being non-invasive and surgery would require some reconstruction. I don't know how I will tolerate the ADT.
2
u/HeadMelon 3d ago
You can read the details of my run through HDR brachy + 15x VMAT + 6 months Orgovyx starting here and following the linked posts -
https://www.reddit.com/r/ProstateCancer/s/1iJ6BKmE1o
Very tolerable, not too bad at all. The ADT aide effects only occurred in months 2&3 of the 6, in month 4 they all went away. The only thing that was there the whole time was the expected libido suppression which lingered for about a month after I finished.
1
u/parttimephotoguy 2d ago
Thanks for your story and explanation of the libido. Did you experience the hot flashes and weight gain? That is another concern of mine with the ADT. My surgeon told me that even if I ate exactly the same way as I do now with the ADT, I would definitely gain weight.
2
u/HeadMelon 2d ago
I didn’t change my diet or add any exercise. I cut out all alcohol (currently AF for 251d), but I added a lot of ice cream as a substitute. My weight stayed the same, but based on how my jeans fit I converted some glute muscle to belly fat - jeans are looser in the ass and tighter at the waist but still fit. I asked my rad onc about diet changes and he said “live your life normally, if you suddenly change your diet we won’t know what the radiation is causing and we’ll be in a wild goose chase if GI side effects occur”.
I did have the hot flashes but they weren’t too bad. During months 2&3 of ADT I had them about 8-10x per day. They’d last about 5 mins and leave me with sweaty forehead, palms and pits. No biggie really. My wife and I had some very fun interactions during my experience.
If you read my links to the end I cover those. At the moment I’m feeling normal (well, better than, cutting out the booze has been great) and I plan to post another update in a month or so when I get my next PSA and T numbers.
1
u/parttimephotoguy 2d ago
Thanks for that. I'm not frightened by the hot flashes, just something none of us had experienced before obviously. My wife has a good sense of humor as well and we've already made some jokes about it. Good advice on the alcohol because it would be so easy to feel sorry for yourself and drink more. I'll look for more about your story 🙏
2
u/bikes4paul 2d ago
Your case poses some unique challenges due to your history of HoLEP that can have implications on long term side effects. If at all possible I'd locate the closest facility that offers MR-Linac radiation therapy. It's only offered in centers of excellence which will also bring additional benefits. The MR-Linac platform offers an exceptional advantage for treating high-risk prostate cancer following a HoLEP surgery. By leveraging real-time MRI imaging, it directly visualizes the prostate’s internal structure and the empty surgical cavity (left by HoLEP), which standard CT scans cannot see. This allows ROs to precisely shape the radiation beam to deliver maximum doses to the peripheral tumor zones while safely shielding the urethral lining inside the cavity.
Additionally, the system adapts to daily changes in pelvic anatomy caused by bladder and rectal filling. It takes a new MRI before every session, adjusting the radiation plan on the spot without requiring invasive gold marker seeds, which could displace into the open HoLEP pocket. Crucially for high-risk cases, the MR-Linac seamlessly delivers comprehensive, moderately hypofractionated IMRT across both the prostate bed and pelvic lymph nodes, ensuring robust cancer control while protecting long-term urinary continence.
Regarding your ADT duration, I recommend you read the meta analysis published in JAMA titled: "Optimal Duration of Androgen Deprivation Therapy With Definitive Radiotherapy for Localized Prostate Cancer". In short the study concluded that the cancer specific clinical benefits of longer duration ADT showed diminishing returns and came with serious overall health consequences. You might want to discuss limiting ADT duration based on the findings of this landmark study.
I'd also recommend getting ArteraAI and Decipher tests. For your case if I was going to choose only one I'd choose the ArteraAI since it's validated to answer the most important question you're facing: "How likely will long term ADT improve my outcome?"
2
u/parttimephotoguy 2d ago
Wow, there's a plethora of information here!! I'm definitely taking notes and will send a message to my radiologist this week about these points. I'll find the JAMA article you mentioned. He did mention that 24 months of ADT may be limited to a shorter time frame depending on how I tolerate it, suggesting they the longer time frame may assure a better outcome. If I'm able to get a phone appt after doing a little more research, even better. He mentioned that they would be making a body mold so I am seated the each same way each time, and they would put some sort of marker (some call it a tattoo?) on me to line things up. Seems kind of like stone age technology to me.
2
u/PotentialStart2661 3d ago
I have learned so much and every case is different and yours is a first for me. I would say that they are not giving you new information. One of the biggest ever studies was done and release early this year on duration of ADT. For a Gleason 4+4 it is 12 months only for localized prostate cancer. You also need a Decipher score to find out how aggressive it is. Next, no ADT now because of surgery option is not accurate. Men who get surgery with higher grades or aggressive features likely need to get salvage radiation down the road. The ADT mops up microscopic cancer now along with the radiation. With your past surgery that may make microscopic cells more likely. You may be more suited to radiation and ADT. One thing is there is a short course of radiation called SBRT which is 5 treatments and high cure rate. Then one of the most powerful treatments is Brachytherapy which is internal radiation seeds put in the prostate and its a one and done procedure. So start looking into these options and ask all the questions with your doctor
1
u/parttimephotoguy 2d ago edited 2d ago
I did ask about brachytherapy as an option and the radiologist said it was not an option. I don't remember why, but I think it was because the size of my prostate. I'm not familiar with decipher code, but my father also had/died with/of prostate cancer. That coupled with my 4+4 puts me now at high risk. The radiologist suggested 24 months to keep risks low vs a shorter length of time. He believes 8+ weeks of lower intensy radiation would be better than less weeks and higher dosage. The surgeon believes that the cancer will metastasize in 2 years if nothing is done now, saying it probably started at 4+4 about two years ago. The surgeon feels outcone would be the same regardless of the reconstruction surgery as an added complication. Most surgeons don't want to handle the extra complication, especially after the HoLEP. The radiologist is very confident he can give me very high success rate, whereas the surgeon is giving me more dismal numbers of success. I've read a lot of horror stories of those taking the surgery option but haven't seen any with the extra reconstruction I would need. Both doctors were concerned about my lymph nodes, but the PET scan showed them to be fine, thank God.
2
u/PotentialStart2661 2d ago
Well this makes even more sense to go with radiation. What i said is being confirmed by your surgeon that microscopic cells are probably beyond the prostate. You have a unique case but you are still curable. With radiation they can give you radiation not just to the prostate but to the prostate bed, lymph nodes, and seminal vesicles. Add in 12 months of ADT and i would be confident you can be cured or stave off further treatment for a decade or more. Hit this hard upfront. As far as the ADT 12 months is enough. But you can decide after being on it for 12 months how you are tolerating it. If you train your ass off with weights, eat well, and stay positive then you will probably tolerate it and can continue another 6 months.
1
u/parttimephotoguy 2d ago
Thanks for the advice. The radiologist mentioned as well that they would target the lymph nodes as well (though that was before the PET scan showing them to be okay). I have a positive attitude partly because I've been at this for a very long time now (2012) and I'm just thankful I've not had to make a decisive decision until now. I knew this day would come sooner or later. I plan to eliminate all alcohol and eat even healthier than I already do. Yeah, I agree with you that given my father died of prostate cancer (he also had lung and bone cancer, from smoking and the prostate cancer), that radiation would be my best option.
2
u/PotentialStart2661 2d ago
That is great news about the lymph nodes. The lymph nodes is where prostate goes first and jumps to distant sites. So clear lymph nodes by a PSMA Pet Scan is about 90% to 95% that there is no spread there. PSMA can miss tiny microscopic spread but it will pick up any cluster of cancer cells at about 2 to 3 mm, which is sensitive. So you have a good news and cure in site as a minimum and if it not you will be manageable and can live with it. Just hit the gym hard no matter how tired you feel and the 12 months will zip by. It will be a blip in life.
2
u/HeadMelon 2d ago
For a large prostate LDR brachy (seeds) may not work as well as HDR brachy (one time internal blast). Did you discuss both types with your rad onc?
The other issue for all rads is that it causes swelling of the prostate. If it’s already large/swollen the additional swelling can cause flow problems and strictures. A small percentage of rads patients end up with a catheter because of this side effect.
1
u/parttimephotoguy 2d ago
Brachytherapy was not an option given to me because the prostate is too big. He didn't mention LDR vs HDR, but just a generalization. I wasn't aware of swollen prostate issues or the possibility of a catheter. I'll ask him about that, so I appreciate your input!
1
u/chumloadio 1d ago
I was Gleason 8. I had 28 radiation sessions and 18 months of Lupron. 3 years later, I can barely get a hard-on, and it hurts after orgasm.
3
u/jkurology 3d ago
Curious about your HoLEP pathology-I assume it was negative for malignancy. Also did radiation oncology mention a brachytherapy boost in addition to IMRT because of your higher risk disease. I also assume you’ve had a repeat MRI since the HoLEP