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Recently Diagnosed, Intermediate Prostate Cancer

Posted by scj428 @scj428, Dec 8, 2023

Hello, New to this group, new to this subject. I was recently diagnosed with prostate cancer at age 63. Had a 12 core biopsy, five positive, three Gleason 3+3= 6, 5%, two are Gleason 3+4=7, one 5%, one is 10%. Was told I have a very large prostate at 110cc. I'm trying to decide on a treatment. I was told that active surveillance was probably not a good idea with a Gleason 7, even though biopsy says small amount plus favorable. So I'm looking at the same set of circumstances that most of you in this group have been faced with at one time. Surgery, Robotic RP, or Radiation. Possibly the Photon or Proton Beam radiation. I know every ones situation is different. At this point I only have the biopsy results. Need some scans I think before making a decision. Looking for a comment from someone who has been diagnosed with similar numbers who has been or is currently being treated. What type of treatment did you decide on? How has it worked for you? If you had it to do over would you stay with the treatment you chose or try another?

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mikewo | @mikewo | Dec 15, 2023
In reply to @vancouverislandhiker "SCJ , what was your PSA going into the biopsy ? Based on what I know..." + (show)
@vancouverislandhiker

SCJ , what was your PSA going into the biopsy ? Based on what I know you have some 3+4 in there ... so they can be a little tricky . A biopsy itself is a 'stab in the dark' so to speak as well . Was it MRI guided or Ultra sound guided biopsy , or ? At this point, and what I know, I would go for surgery- pedal to the metal approach. You dont want that 3+4 hanging around. PLUS , after having the prostate removed a proper biopsy can be done and analyzed . that cannot be achieved with radiation. Also, while they are in there they can to multiple biopsy's ( Lymphs, Bladder , tissues , etc ...) . this will give you a great idea of where you stand going forward for other treatments if required . Hang in there ! Lots of support here . Join a local Prostate support group. I don know your area, but there are plenty in USA and my country of Canada ( BC )

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A PSMA PET scan can tell you if the prostate cancer has spread anywhere without having surgery first or don't they offer that in Canada?

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1 reply
VancouverIslandHiker | @vancouverislandhiker | Dec 16, 2023
In reply to @mikewo "A PSMA PET scan can tell you if the prostate cancer has spread anywhere without having..." + (show)
@mikewo

A PSMA PET scan can tell you if the prostate cancer has spread anywhere without having surgery first or don't they offer that in Canada?

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Mike , thanks for asking . Before my surgery I had a bone scan and MRI and a CT scan specific to the prostate with contrast . Therefore the Dr concluded that he would go ahead with surgery as the various scans were negative . Here in Canada we generally use the PSMA-PET scan on a reoccurrence basis or persistent PSA . Thats what I have observed anyway . BUT you make a valid point.....why no PSMA PET scan before the surgery ? I didnt even think to ask 3.5 years ago as I was still learning about PC and had very basic knowledge . I asked to be put on a cancellation list . So, right after all me scans I was lucky enough to get the surgery about 1 week after I was put on list for the operation . They removed the prostate , and did 10-14 samples of tissues in bed area . Zero Cancer cells found . 3+4 Gleason and a 3mm breach that looked like it just happened . The biopsy proved it was 3+4 Gleason and all the cells around the small breach was type 3 , so the Dr's were relieved about that . they said the operation was good and that my protate and lesson was very small . They also mentioned zero cancer cells found in all of the various sample. I opened up the lab results this morning . Again I am at 0.11 . So the last four have been ~ 0.09 , 0.14 , 0.11 , then this one yesterday 0.11 . Thanks for your help Mike ! Merry Christmas to you and yours ! James .

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1 reply
mikewo | @mikewo | Dec 16, 2023
In reply to @vancouverislandhiker "Mike , thanks for asking . Before my surgery I had a bone scan and MRI..." + (show)
@vancouverislandhiker

Mike , thanks for asking . Before my surgery I had a bone scan and MRI and a CT scan specific to the prostate with contrast . Therefore the Dr concluded that he would go ahead with surgery as the various scans were negative . Here in Canada we generally use the PSMA-PET scan on a reoccurrence basis or persistent PSA . Thats what I have observed anyway . BUT you make a valid point.....why no PSMA PET scan before the surgery ? I didnt even think to ask 3.5 years ago as I was still learning about PC and had very basic knowledge . I asked to be put on a cancellation list . So, right after all me scans I was lucky enough to get the surgery about 1 week after I was put on list for the operation . They removed the prostate , and did 10-14 samples of tissues in bed area . Zero Cancer cells found . 3+4 Gleason and a 3mm breach that looked like it just happened . The biopsy proved it was 3+4 Gleason and all the cells around the small breach was type 3 , so the Dr's were relieved about that . they said the operation was good and that my protate and lesson was very small . They also mentioned zero cancer cells found in all of the various sample. I opened up the lab results this morning . Again I am at 0.11 . So the last four have been ~ 0.09 , 0.14 , 0.11 , then this one yesterday 0.11 . Thanks for your help Mike ! Merry Christmas to you and yours ! James .

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Happy you keep getting great results. My first was undetectable after 5 proton radiation treatments and they said come back in six months which is in Jan.

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1 reply
VancouverIslandHiker | @vancouverislandhiker | Dec 16, 2023
In reply to @mikewo "Happy you keep getting great results. My first was undetectable after 5 proton radiation treatments and..." + (show)
@mikewo

Happy you keep getting great results. My first was undetectable after 5 proton radiation treatments and they said come back in six months which is in Jan.

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Let me know how you make out Mike . I am in a holding pattern at 0.11 , I am ready for the approach, though to a lower level and a landing. I hope my next one is 0.05. I will talk to the doctors about what I can do to get it there. Thanks for your time and your notes. James

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mikewo | @mikewo | Dec 16, 2023
In reply to @groundhogy "Here is a good website to compare odds of cure for the major treatment paths. You..." + (show)
@groundhogy

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.

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You need to put age in that equation. Big difference between 50 and 75 as to which treatment to follow. Those graphs are just ok but someone like me they were practically worthless. PSA less than 10 or between 10 and 20. No mention if your PSA is 2.9. How many core positive or negative and what Gleason out of how many. Then if you have an MRI fusion guided transperineally biopsy and 3 or 4 taken from the area of the lesion how many do you count? I found that the only thing that made me an unfavorable intermediate risk was one core that was 60% 4 and the rest 3. Problem with that is that studies of samples of 4 Gleason after a RP found that 51% stayed a 4 and 49% were downgraded to a 3. You can get those results flipping a coin, so do you trust the pathologist who is reading the biopsy samples? Too many variables for me and it does not seem that the science is very exact. I went with the 5 proton treatment at Mayo being that I am 74.

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groundhogy | @groundhogy | Dec 16, 2023

You are obviously well read. Lol. I will guess engineer or some type of scientist.
Yes, the charts are a general guideline. They can be further refined by more thinking and strategizing as you have done.
But the thing is, is there is no industry generated info along these lines. The industry does not care to know this data because they could easily commission studies to determine and collect this data.
The charts were generated by an exasperated doctor that wished to know the truth, and collected data for himself for the poor men that need some type of guidance other than the random opinions of random doctors who have random moods on random days.
( im not mad at you, your post was helpful, but the more i type, the madder i get at the industry.. lol)

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1 reply
mikewo | @mikewo | Dec 17, 2023
In reply to @groundhogy "You are obviously well read. Lol. I will guess engineer or some type of scientist. Yes,..." + (show)
@groundhogy

You are obviously well read. Lol. I will guess engineer or some type of scientist.
Yes, the charts are a general guideline. They can be further refined by more thinking and strategizing as you have done.
But the thing is, is there is no industry generated info along these lines. The industry does not care to know this data because they could easily commission studies to determine and collect this data.
The charts were generated by an exasperated doctor that wished to know the truth, and collected data for himself for the poor men that need some type of guidance other than the random opinions of random doctors who have random moods on random days.
( im not mad at you, your post was helpful, but the more i type, the madder i get at the industry.. lol)

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LOL. I hear that a lot from the medical staff with all the articles I bring to appointment about being an engineer. I have an Excell spreadsheet with every bloodwork I have ever had going back to 2008. Like I said my PSA was only 2.9 and had been between 2.9 and 2.3 for over five years yet none of the doctors would even give a guess as to how long I had had it. Just a few weeks after I finished radiation the study saying that life expectancy was 15 years weather you had a proctectomy, radiation, or did nothing for localized prostate cancer was the same.

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gently | @gently | Dec 17, 2023

scj248,
still deciding in a similar situation. The PSMA PET Pylarify the first step and then Decipher--somatic testing of the tumor itself, both to gage the likelyhood of metastasis. The obvious idea is to get rid of the cancer with the least damage to continence and sexual prowess. Personally, I'd take a slight risk of recurrence over damage.
So that rules out surgery. It's down to 1 Five fractionate Proton if the MRI Proton machine is available anywhere 2 Five fractionated Photon with MRI. 3 28 fractions Proton.
MRI guided radiotherapy is said and seems to be far superior to imaging outside of the treatment arena--before treatment.
There are several scheduled consultations with radiation oncologists; their opinions will weigh.
You may also have to decide about anti-testosterone therapy. Orgovyx is thought to be less problematic than Lupron.
I hope we find the best way out of this uncomfortable situation. Best luck.

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