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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@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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@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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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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@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

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@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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@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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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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@anosmic1

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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It’s amazing what surgery finds, even though I was totally against it at first.
My surgeon found bladder cancer during my procedure and told me that radiation might have pushed it into a more aggressive grade.
It was treated with BCG infusions and was said to be in remission before my recent 25 salvage sessions.
Hoping that the radiation doesn’t wake that sleeping dog!
Phil

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JC76, if you contact PCRI the are located in Culver City California, they also have lots information online that you may find beneficial. Your PSMA pet scan will give you a better sense of treatment direction, My Gleason is 9 and I’m waiting for the Pet scan next week also to decide, one thing I know finding the best surgeon or radiologist it’s half the battle.

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@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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Yeah, get you. A friend, who is an Internist and helps people with this very question, had RP. He wanted it out. He is my age. 1+ year later he feels great. Recovered nicely all functionality.
I’m betting a bit on the technology. If I can do something precise enough and kick it down the road, I might be able to do something similar later. Anyway, I appreciate the reminder. My best to you!

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