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The next "Step" after robotic prostatectomy
Good Day. I'm 64, and had a robotic Prostatectomy in Oct 2022. The Dr was confident all cancer was encased in the gland, but the 3 month PSA check was .29. Next PSA check 3 months later was up to .65 so a PETScan was scheduled. A tiny hotspot was on the Prostate bed, and Dr. is recommending radiation treatment. I am looking for feedback from others who've been through this process already, and what I can expect for long term issues. I'm not worried about the side effects that occur during the treatment and for the brief time after the treatment is completed. I'm wondering what "falls apart" 5, 10, 15 years down the road. I'm also wondering about alternatives. From family experience, I'm not overly excited about radiation being presented as the "best" option, so I am doing research on the best course of action for me.
My Gleason score was 4-3.
On a side note... I'm suspicious the cancer cells from the prostate were transferred to the bed during the biopsy procedure...
Comments
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Hi,
I had RP in October, 2017. By August, 2018, my PSA was climbing, and in the spring of 2019, I had salvage radiation and six months of hormone therapy. I am now four years out. In terms of long term side effects, the radiation has had the least long term consequences. My RP had lasting side effects, and I never totally recovered from the hormone therapy. Don’t get me wrong, I am thrilled to be cancer free, but compared the the others, radiation is a walk in the park
Eric
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The proposed treatment is Standard of Care, AFAIK.
The radiation sessions are very short, but there's a pretty strict protocol about having a full bladder prior to each radiation session. I personally wouldn't worry about things that may (or may not) happen way down the road. In that context, Eric gave you good advice (see the post above).
Carpe Diem!
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Hi,
In my humble non medical opinion the radiation treatment is a good treatment path. Cyberknife or Proton radiation would be my choice. A PET scan is good for finding small metastases, your doctor made a wise choice. None of us know once treated via radiation or surgery if the cancer will return. With that being said the only pro active thing to do is follow up with your doctor and get your PSA checked on a regular basis. Cancer returns, look to zap it with radiation or some other form of treatment and keep on living. All of us survivors live one PSA test to the next. No long term treatment paths that I am aware of that will guarantee cancer free 10-15 yrs. down the road. I had my Prostate removed via robotic surgery in 2014, so far PSA has been below .1 🙏🤞
Good luck
Dave 3+4
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Hello NDFarmboy,
Your situation is very similar to mine. My first PSA test a few months after surgery in 2015 was 0.53 and my next was 0.75. I began radiation shortly after, 33 sessions, but did not have hormone therapy with it. My Gleason was 3+4. My urological surgeon, before handing me over to a radio-oncologist, described post-surgery radiation as a mop-up procedure. Pretty good description, I think, and standard practice.
I wasn't completely continent before I started radiation, but I was well on the way. I was told that whatever level of continence I was at, it would never improve beyond that, and that's true, I never became completely dry, but until a couple of years ago I was down to just one flimsy shield a day and I was dry overnight. I'm much worse now but I can't and won't blame that on the radiation itself; it was too long ago. I also had a certain level of ED before surgery and radiation did not worsen it.
The reason that they say to front up with a full bladder is that it pushes your bowel out of the way a little bit, preventing some irritation to it and reducing the severity of loose motions which persist for a few months after. Or so I was told.
If anything has 'fallen apart' for me, and it is now 7 years after my radiation, is that I have what's known as a biochemical recurrence; my PSA is now 0.51 after reaching its nadir of 0.04 five years ago. Happens to 30% of those after surgery, apparently.
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It is common to have a course of androgen deprivation therapy (in this case Orgovyx) prior to radiation therapy. There is synergy between the two:
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NDFarmboy,
I hesitate to post this because it sounds a bit dire, but my radiation after RP included 45 Gy in 25 fractions to the entire pelvis, including lymph nodes followed by a 25.2 Gy in 14 fractions boost. Hormone therapy before, during, and after. Few complications during treatment but It was soon made clear that I suffered radiation cystitis to the bladder wall resulting in urine leakage, burning, blood in urine, and clotting. Prostate bed pain developed two months after treatment and lasted for about 6-8 weeks. Almost four years later, scar tissue blocked flow through the urethra and had to be cut away. This scar tissue was from the burning caused by the radiation. This left a hole in the urethra and complete incontinence to prevail.
Another 3 years later and I am struggling with peripheral neuropathy and loss of balance due to tiggling and numbness in the feet and lower legs. Suspect scar tissue impinging on nerve bundles or actual nerve damage from the radiation.
My post RP PSA stubbornly sat at about 1.5 which resulted in radiation/hormone therapy recommendations. And while my current PSA remains at <0.01, knowing what I know now, I might have waited a little longer before making the decision to have the radiation accomplished.
It's a tough choice to make. I would be interested to know how much radiation to the pelvis is too much radiation...
Brevp
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Omg thats so terrible .
So sorry and sad for you sir. How old are you if I may ask? What were your symptoms before radiation? I’m 66 years old robotic surgery September 2024 now 2026 my PSA is 0.13 and they want to radiate me. I’m scared to death. I thought if they removed the prostate, everything will be fine. The PSA scan prior to robotic was negative and showed no spread or no cancer leaving the tumor - just in the prostate. My Gleason score was 7.
I’m still dealing with some minor incontinence that has become part of my life. It seems but it’s tolerable. That’s what I’m afraid of it. Getting radiation and having them damage other parts of my body and things are getting worse, but they assured me that they wouldn’t. What should I believe?
No two persons are the same and no two cases are the same but your story scares me to death. I’m so sorry my friend God bless you. I hope you are well today. Please respond if you can.Knowing what you know now , any regrets on radiation?
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Hello all my thoughts and prayers for all. I had robotic prostrate removal sept. 2024 my current psa is at 0.13 had an oncology consultation yesterday, they want to radiate me for like two months and some type of hormone therapy. Most of this is like another language to me. What are long or short term side effects to hormone therapy?
my oncologist says most likely I’ll return to my health where I’m at now after radiation which is some dribbles and squirts with coughing . Some ED that is returning but not near the norm .I suppose I’ll have to wait for the pet scan and go from there .
I was diagnosed with prostrate cancer in 2013 I opted for active surveillance .
The psa went to 7 Gleason from 6 during those years. I’m 66 years old in few weeksI’m wondering and worrying on the pros and cons of what they want to do to me -anybody? God bless you all.
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+Good Day Rick2026,
Just a follow-up to the radiation procedure I underwent. It's been a few years ago, so I've got more of a "story" to tell.
First of all, get a doctor who cares about you and doesn't treat you like you're "OLD". The first doctor I went to was young, and when my wife and I left his office, we both felt he thought I was old and useless, so quality of life wasn't a factor. I went to another Dr/ different facility for a second opinion, and was given the same treatment recommendation, but the Dr's attitude was totally different. He was older and understood life doesn't end in your 60's.
I first received a PET Scan to determine where the "hotspot" was that was preventing my PSA levels from disappearing. (note: they may never drop to zero, PSA can be generated by other organs in your body). Once the spot was found, a radiation program was devised, consisting of 39 daily treatments, 25 broad treatments involving the entire pelvic region, and 14 pinpoint treatments focusing on the "hotspot". I did no hormone therapy.
These treatments were performed during the summer of 2023. I experienced some fatigue, and a little weight loss (it all came back, DANG!! HAHA) but it was minimal. My wife used to joke I was still able to accomplish more than the unemployed 40 year neighbor, so it wasn't bad. The facility was a 200 mile round trip, so maybe the 8000 mile "journey" was part of the fatigue. I rented a car that wasn't nearly as comfortable as mine and I was worn out by the time I got home.
Since completing the radiation treatment, I've had follow-up appointments, beginning every 3 months, and for the past 12-15 months the PSA level have been undetectable. My appointments are now yearly.
How am I feeling??? Better than before. I also have some diverticulosis issues, and since the radiation treatments the issue is not as severe. Why??? ALDARR777 summed it up the best, "an Excellent Oncologist and team and GOD". Medically I believe the treatment I received was the absolute best, but I have witnessed miracles (anything unexplainable by modern science) and believe God was totally in control during the entire process, from the surgery through the radiation treatment, and still continuing today.
You're probably asking that if God was in control, why did I get cancer?? (that question went through my mind too). The only answer I have is what occurs in our lives isn't only for our benefit, but also for those around us. Maybe me being open about my experiences/results is something you (or anyone else reading this) needs to hear. There is definitely a "higher power" that not only oversees our lives, but CARES about us in a way we can't comprehend.
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Good Day All,
Below is a copy of the note I sent to Rick777, hopefully it's encouraging. I believe a person's attitude is just as important as all the medical treatments you can receive.
Just a follow-up to the radiation procedure I underwent. It's been a few years ago, so I've got more of a "story" to tell.
First of all, get a doctor who cares about you and doesn't treat you like you're "OLD". The first doctor I went to was young, and when my wife and I left his office, we both felt he thought I was old and useless, so quality of life wasn't a factor. I went to another Dr/ different facility for a second opinion, and was given the same treatment recommendation, but the Dr's attitude was totally different. He was older and understood life doesn't end in your 60's.
I first received a PET Scan to determine where the "hotspot" was that was preventing my PSA levels from disappearing. (note: they may never drop to zero, PSA can be generated by other organs in your body). Once the spot was found, a radiation program was devised, consisting of 39 daily treatments, 25 broad treatments involving the entire pelvic region, and 14 pinpoint treatments focusing on the "hotspot". I did no hormone therapy.
These treatments were performed during the summer of 2023. I experienced some fatigue, and a little weight loss (it all came back, DANG!! HAHA) but it was minimal. My wife used to joke I was still able to accomplish more than the unemployed 40 year neighbor, so it wasn't bad. The facility was a 200 mile round trip, so maybe the 8000 mile "journey" was part of the fatigue. I rented a car that wasn't nearly as comfortable as mine and I was worn out by the time I got home.
Since completing the radiation treatment, I've had follow-up appointments, beginning every 3 months, and for the past 12-15 months the PSA level have been undetectable. My appointments are now yearly.
How am I feeling??? Better than before. I also have some diverticulosis issues, and since the radiation treatments the issue is not as severe. Why??? ALDARR777 summed it up the best, "an Excellent Oncologist and team and GOD". Medically I believe the treatment I received was the absolute best, but I have witnessed miracles (anything unexplainable by modern science) and believe God was totally in control during the entire process, from the surgery through the radiation treatment, and still continuing today.
You're probably asking that if God was in control, why did I get cancer?? (that question went through my mind too). The only answer I have is what occurs in our lives isn't only for our benefit, but also for those around us. Maybe me being open about my experiences/results is something you (or anyone else reading this) needs to hear. There is definitely a "higher power" that not only oversees our lives, but CARES about us in a way we can't comprehend.
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hi my friend(s) all in all that makes a lot of sense and I’m so happy you’re alive to talk about it too. I have a lot of faith. I’m also suffering from horrible depression and anxiety so I have to get through this too.
I actually feel encouraged by your story and you taking the time to talk to me is worth its weight in gold. I have a really bad feeling going to the radiation because I went all the way to Loma Linda, which is about a 40 minute drive from my house not too bad but the oncologist was not even there . His assistant was , I asked all the questions I wrote down. Shortly after that, I was talking to the oncologist on the phone like a phone meeting. He stated that he had a really bad cold and didn’t want to get anybody sick.
But they could’ve told me that before I drove all the way down there. I was a little bit late, even though I left extra early. There was no parking anywhere and I had to walk more than I had planned to. So anyways, I agree with you about getting a second opinion I have Medicare. I don’t know how to do that just quite yet, but I think I should. I agree with you. I’ve been with my Urologist at Loma Linda for 13 years when I was first diagnosed with a really low-grade cancer. I wouldn’t say he treats me like I’m old but I do get the feeling he thinks I am, but that could be just me. I have a good report with him. But he’s all business not much social. They’re very busy there people from all over the world come to get treatments. So here’s where I’m at right now. I have a PSA test coming up February 20 and then a PET scan on February 23.
I have follow up urology meeting on March 2.we shall see what transpired and I will post the findings and I appreciate everybody who’s reading this with your concerns and your well wishes. God bless you all. Please stay healthy and keep in touch with me. It’s very therapeutic to hear from others who visited us and care enough to write me back. Oh, and by the way, this system is quite tricky to me. I’m trying to figure out how to get these messages and read them. I have so many pages open every time I read a post I’ll figure it out eventually. So if I don’t get back to you right away, I’m definitely trying too.
thank you again, sir for your letter and taking the time I do feel more encouraged.
I’m still 17 months post robotic surgery having some dribbles and leaks, especially when coughing when I’m able to do things and function and I’ve adapted. I just don’t want it to get worse. That would be the end of me. I’m 66 years old and a couple weeks. My mind thinks I’m 40 my body feels like it’s 86 people tell me I look like I’m in my 50’s.
I love God and I know he’s watching over me. He’s performing miracles in my life that would take me forever to write and tell you about, but I can’t escape some of the mental anguish. Ihave to fight this. And with all these folks chiming in and giving me advice and stories, it does help , so thank you so much and God bless you all. Rick
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