Newly diagnosed with prostate cancer and still gathering information

Posted by brucemobile @brucemobile, Apr 3 9:59am

I was just diagnosed within the last two weeks. My PSA is 4.1 which I’m thinking isn’t that bad. I was not prepared for the results of the biopsy. Gleason 4+3 intermediate unfavorable. 13 of 15 cores positive. The urologist is favoring surgery. Second opinion also surgery but wants a Pet scan which is in the process of being scheduled. I am in Alabama and expect to be treated here. I am still in the asking questions and doing research stage, at this point I don’t know until after the pet scan if I have any options. The information on the post operative effects ofsurgery goes from mild to wild, I’m concerned. Anyone who can share their experiences would be appreciated.

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I'm 67, diagnosed in July. Gleason originally was 4+3. I had the surgery in November, and they determined my Gleason was 4+5 with some spread to the bladder neck. My first PSA is undetectable but I'm still working on incontinence. I'm happy I did the surgery because my cancer was more aggressive than the biopsy showed. Doctor said it "could have been fatal." Recurrence seems likely in my case,

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Profile picture for heavyphil @heavyphil

@robertov, thanks but it’s a little late for me. I already had surgery at age 64 - Gleason 4+3 Unfavorable. Very High volume.
When PSA climbs after surgery it’s watched carefully and when it accelerates it’s time to act. 5 yrs in my case.
Some docs start at levels lower than 0.2, others a but higher in the hope PSMA might show something (usually doesn’t).
At age 73 your preference for radiation is certainly understandable - I might have opted for it myself but I was too “young” and the chance for recurrence was high. I wanted more than one chance to hit back and I got it. After that, who knows?
Phil

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@heavyphil I am 68-1/2 and I am scheduled for the 3rd of my 5 SBRT treatments tomorrow. My first choice was robotic assisted radical prostatectomy (RARP) but after weighing my family's concerns with surgery, plus more research/readings that I did, I finally decided on radiation. I am hoping I made the right choice, and that it works. I am happy for you that you had two chances . Be safe and well.

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Profile picture for surftohealth88 @surftohealth88

I would just like to add that type of aggressiveness of PC can effect treatment choice.

My husband had one core with intraductal and cribriform present and even though his gleason score is 4+3 he should be treated as high risk case.
Some studies show that patients with intraductal cancer have better survival with initial RP regardless if later RT is needed or not. Also, I read on couple of other forums about cases where RT did not kill cribriform cells in prostate even with high precision radiation. Those cases could be aberrations but it is hard to know since only about 2% of PC have intraductal component. BUT, to be on a safe side, we will probably opt for RP - I say probably since we still did not have a chance to talk to any specialist and are still waiting for PSMA results so we do not even know if cancer left prostate or not.

I am just writing this as info. for new patients who are trying to decide between RP or RT to know that in some cases RP has advantage over radiation.

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This is exactly my concern with the RT option, which I was favoring before. If the cancer is not completely eliminated from the prostate, you are in a difficult situation. Salvage RP is very risky but leaving the prostate is a high risk for spread.

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Profile picture for robertov @robertov

I thought that 0.2 PSA is when they start to get a bit concerned. But then they monitor it to see what direction and the doubling time. Once on Orgovyx, keep researching. You’ll be surprised at the options you have. It is worth it to put in the time. Forget the PSA, look for a treatment that you are satisfied with. For me, surgery could never be that.

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@robertov, thanks but it’s a little late for me. I already had surgery at age 64 - Gleason 4+3 Unfavorable. Very High volume.
When PSA climbs after surgery it’s watched carefully and when it accelerates it’s time to act. 5 yrs in my case.
Some docs start at levels lower than 0.2, others a but higher in the hope PSMA might show something (usually doesn’t).
At age 73 your preference for radiation is certainly understandable - I might have opted for it myself but I was too “young” and the chance for recurrence was high. I wanted more than one chance to hit back and I got it. After that, who knows?
Phil

REPLY

I would just like to add that type of aggressiveness of PC can effect treatment choice.

My husband had one core with intraductal and cribriform present and even though his gleason score is 4+3 he should be treated as high risk case.
Some studies show that patients with intraductal cancer have better survival with initial RP regardless if later RT is needed or not. Also, I read on couple of other forums about cases where RT did not kill cribriform cells in prostate even with high precision radiation. Those cases could be aberrations but it is hard to know since only about 2% of PC have intraductal component. BUT, to be on a safe side, we will probably opt for RP - I say probably since we still did not have a chance to talk to any specialist and are still waiting for PSMA results so we do not even know if cancer left prostate or not.

I am just writing this as info. for new patients who are trying to decide between RP or RT to know that in some cases RP has advantage over radiation.

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Profile picture for neronel @neronel

Jeff,
Yeah, my father lived to 93, almost 94. As far as I know, I’m the only one stuck with PC. I’m not going to make it that far. That I can tell you.
My brother is 76. His PSA is 0.6. Never goes up. So, there’s that.
I did the surgery. Initially there are some side effects but they go away after a few months. Radiation gets worse.
My friend had surgery, external beam, then adjuvant brachytherapy a few months later. I asked him how things are going. He said my stuff doesn’t work. Then I asked him how is girlfriend felt about that. He said, she sticks around as long as I pay the bills.
This is why I chose surgery. If it comes back, there’s plan B, radiation. I guess you could call it Plan R (Dr. Strange love.)
Lou

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I meant to say that my friend had RT, external beam, then adjuvant brachytherapy. Sorry.
Lou

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Profile picture for robertov @robertov

I don’t think so. I can’t recall all the studies but RP seems to have uncomfortably short times before recurrence. Because of the risk of undetected cancer, they tend to radiate around the lymph and pelvic areas. But, if you are going to do that, why not just do radiation. That way you don’t have the prostate removal to deal with. With what I have been researching, all the indications seem to be, we have been over-treating. My current guy has the same philosophy as I do…don’t treat if you can’t see.
I’m 73 btw. As a further thought, less applicable to me, but more for you is: the technology and mindset is changing quickly. There will be better technology latter on if you need it. But some of the RT I’ve seen have incredibly long cancer-free results.

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At the PCRI conference two weeks ago a Doctor made this comment

“Seeds for metastasis were already there when surgery was done, waiting to grow.”

Now that’s a doctor talking, but I don’t see a study attached. Experience?

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Profile picture for heavyphil @heavyphil

0.18….but the routinely scheduled PSA, which occurred during the time for MRI and PET and other appts. Came back 0.15, a couple days before starting Orgovyx.
So all this yo-yo game of up and down PSA’s could go on for quite some time….or put you in a mental hospital suffering from chronic anxiety. Another choice you’ll have to make.
Phil

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I thought that 0.2 PSA is when they start to get a bit concerned. But then they monitor it to see what direction and the doubling time. Once on Orgovyx, keep researching. You’ll be surprised at the options you have. It is worth it to put in the time. Forget the PSA, look for a treatment that you are satisfied with. For me, surgery could never be that.

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Profile picture for topf @topf

How old are you. I was diagnosed with Gleason 8 in late December and just turned 52. The question when it comes to long-term survival is whether RP with possible salvage RT ( plus ADT) has lower up-front risk of a second recurrence compared to that of a first recurrence with primary RT.

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I don’t think so. I can’t recall all the studies but RP seems to have uncomfortably short times before recurrence. Because of the risk of undetected cancer, they tend to radiate around the lymph and pelvic areas. But, if you are going to do that, why not just do radiation. That way you don’t have the prostate removal to deal with. With what I have been researching, all the indications seem to be, we have been over-treating. My current guy has the same philosophy as I do…don’t treat if you can’t see.
I’m 73 btw. As a further thought, less applicable to me, but more for you is: the technology and mindset is changing quickly. There will be better technology latter on if you need it. But some of the RT I’ve seen have incredibly long cancer-free results.

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Profile picture for jeff Marchi @jeffmarc

The problem is whatever treatment you select they’re going to be a side effects for the rest of your life. Radiation has the least side effects after the fact (vs surgery) but at some future date it may cause problems. That’s why using Spacing Technology, as well as SBRT via a MERidian type system can reduce the chance of a future problem.

Unfortunately, there is no easy answer. You may live longer with surgery, Because it allows you to use radiation if it comes back. I wouldn’t base my decision on the mortality tables, better to consider family longevity. My father died at 88 of prostate cancer, The mortality tables would have probably had him dying 10 years earlier.

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Jeff,
Yeah, my father lived to 93, almost 94. As far as I know, I’m the only one stuck with PC. I’m not going to make it that far. That I can tell you.
My brother is 76. His PSA is 0.6. Never goes up. So, there’s that.
I did the surgery. Initially there are some side effects but they go away after a few months. Radiation gets worse.
My friend had surgery, external beam, then adjuvant brachytherapy a few months later. I asked him how things are going. He said my stuff doesn’t work. Then I asked him how is girlfriend felt about that. He said, she sticks around as long as I pay the bills.
This is why I chose surgery. If it comes back, there’s plan B, radiation. I guess you could call it Plan R (Dr. Strange love.)
Lou

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