I need advice to help make a decision.......

Posted by chipe @chipe, Nov 18 3:25pm

Just to set the background: RARP on September 16. Cancer was intraductal and they found at least 1 lymph node with PC in it. My 6 week PSA was undetectable.

Went to the radiation oncologist this morning. He gave me the choice to start ADT/Radiation (2 years ADT, 7 1/2 weeks of M-F radiation treatments) in January or wait until my PSA starts to go up. His data shows that either option is acceptable with outcomes the same. He also said there is a very slight chance I am cancer-free, but he really is not convinced and is leaning heavily toward PC lurking in me somewhere. He said it is 6 to one, half-dozen to the other.

My thoughts:
1. Both the surgeon and the oncologist are pretty sure that I am NOT cancer-free but right now the PSA is good. The oncologist said that could change with my 12-week blood test.
2. I am leaning heavily toward starting in January. Why wait for the PSA to go up? That means we are allowing the cancer to get large enough to impact PSA levels. To me, that is not acceptable. I don't want the cancer to get a foothold or grow at all.
3. I am a proactive person, not a reactive person. Having the ADT/Radiation therapy sooner rather than later is proactive, IMHO.
4. I am 71 now. As many of us here know, getting older takes its toll on our bodies. I am in good shape, very active, and not overweight. Today, I just cut down three trees, so I'm doing okay. Why would I wait a few years to start when my body is weaker due to the natural impact of aging? I know I can handle it now, but in five years, who knows?
5. He talked about the side effects: fatigue, loss of muscle mass, hot flashes. He said the radiation can also impact bowel movements and urinary frequency. Again, these are also, unfortunately, symptoms of the natural aging process (maybe not the hot flashes).
6. Is the ADT/Radiation regimen that bad that I should avoid it as long as I can?

Yes, I am leaning toward the "do it now" choice, but I want to make an informed decision. I have until mid-December to make the call.

So, if it were YOU, what direction might you take?

Thank you all!!! 🙂

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@jeffmarc

The recent seminar I went to shows that intraductal is aggressive and usually means you have cribriform. Because of that doing something makes more sense.

I wish you had mentioned what your Gleason score is. And also a decipher score if you have one. The Gleason score tells you how aggressive it is. If it’s above seven then you are aggressive along with the intraductal aggressiveness is even a little higher. This disclosure about intraductal being so aggressive is sort of new news. I will be posting a link to the video of that meeting when it becomes available.

Yes, you could wait until your PSA hits .2 to do the salvage radiation. As they said the results are the same. With other issues, metastasis could appear while you’re waiting, but at .2 there won’t be a lot.

I’ve been on ADT for eight years. In my case, I don’t get the fatigue. I do get the hot flashes and brain fog and loss of muscle. Going to the gym three days a week now to try and rebuild my muscles. If you start weight training when you begin ADT, you may not lose too much muscle. I am 77 and not overweight, I keep a very tight lid on my weight. Some people gain weight with ADT, you don’t have to.

I would avoid ADT as long as you can. In my case, I had radiation3.5 years after surgery and was not put on ADT until my PSA started rising again 2 1/2 years later. They didn’t know I have BRCA2 15 years ago when I was diagnosed, just found out two years ago,. My PSA was 4+3 so not too aggressive, that didn’t stop PC from coming back four times.

Wish you luck.

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If results are the same I would wait.

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@chipe If you decide to do radiation and a real time built in mri machine is available (Mridian, Elekta...) you might want to consider that. If 5 hypo fractional treatments are available, maybe that can apply to you. How much healthy tissue is exposed to radiation, matters.

With the PSA being about 57% accurate, you may want to consider the PSE blood test which raises accuracy to 94%. They do the test for new and biological re-occurrence. You can email the VP of clinical diagnostics at oxford biodynamics. They make the test and he welcomes questions: joe.abdo@oxfordbiodynamics.com.

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@bens1

@chipe If you decide to do radiation and a real time built in mri machine is available (Mridian, Elekta...) you might want to consider that. If 5 hypo fractional treatments are available, maybe that can apply to you. How much healthy tissue is exposed to radiation, matters.

With the PSA being about 57% accurate, you may want to consider the PSE blood test which raises accuracy to 94%. They do the test for new and biological re-occurrence. You can email the VP of clinical diagnostics at oxford biodynamics. They make the test and he welcomes questions: joe.abdo@oxfordbiodynamics.com.

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You want to do a PSE test to prove that you actually have prostate cancer if you are on active surveillance? He’s already had a biopsy, which shows he has it. Do you really think a PSE test will be useful in this case?

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@jeffmarc

You want to do a PSE test to prove that you actually have prostate cancer if you are on active surveillance? He’s already had a biopsy, which shows he has it. Do you really think a PSE test will be useful in this case?

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The company rep told someone on the board that this test is useful even after prostate removal. If healthy tissue is left behind (nerve sparing) and PSA starts to rise, this PSE test can accurately (supposedly!) determine if the rise is from cancerous or healthy cells.
Would be a game changer IF that were true!

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@jeffmarc

You want to do a PSE test to prove that you actually have prostate cancer if you are on active surveillance? He’s already had a biopsy, which shows he has it. Do you really think a PSE test will be useful in this case?

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They are still seems to be an open item question as to whether or not he has cancer and maybe that will help lean him in One Direction or another

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@heavyphil

The company rep told someone on the board that this test is useful even after prostate removal. If healthy tissue is left behind (nerve sparing) and PSA starts to rise, this PSE test can accurately (supposedly!) determine if the rise is from cancerous or healthy cells.
Would be a game changer IF that were true!

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Here is the comment made by Joe Abdo, the VP of Clinical Diagnostics for Oxford Biodynamics further r clarifying the PSE test:

"Just to clarify, the EpiSwitch PSE test analyses immune cells in the blood that have been at interplay with prostate cancer (or not). Your PSA value only makes up a small portion of the results of the test. There are other very informative biomarkers assessing the presence or absence of PCa included in this test. So yes, EpiSwitch PSE can still be used with a very low PSA score, and can still detect prostate cancer without PSA shedding. Therefore, the test can be used before, after and during treatment - even after complete prostate resection. In your case, a 'low likelihood' result could potentially help you avoid things like PSMA scans if your PSA indeed rises over time. A 'high likelihood' result could be indicative of recurrence, irrespective of low PSA."

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@bens1

They are still seems to be an open item question as to whether or not he has cancer and maybe that will help lean him in One Direction or another

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All this discussion about Cancer or NO Cancer .
Consider my two Transperineal MRI Fusion biopsy results . And 2nd and 3rd opinions on my 2nd biopsy results .
Biopsy # 1 5 cores in the target area -- ALL NEGATIVE .
Biopsy # 2 16 cores -- 6 in the target area . ALL 6 Cores in the target area Gleason 6 .
2nd Opinion ---------------------------------------- " " " " " " " Gleason 7 (3 + 4 )
3rd Opinion ---------------------------------------- 4 Cores G6 2 Cores G7 3 + 4
Four opinions -- take your pick -- DO I HAVE CANCER ?
I predict that AI will take the interpretation out of the hands of the pathologist . As they say : " Beauty is in the eye of the beholder ". It was suggested I get another 4th opinion -- I suspect I would then have five different interpretatioons .

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@clandeboye1

All this discussion about Cancer or NO Cancer .
Consider my two Transperineal MRI Fusion biopsy results . And 2nd and 3rd opinions on my 2nd biopsy results .
Biopsy # 1 5 cores in the target area -- ALL NEGATIVE .
Biopsy # 2 16 cores -- 6 in the target area . ALL 6 Cores in the target area Gleason 6 .
2nd Opinion ---------------------------------------- " " " " " " " Gleason 7 (3 + 4 )
3rd Opinion ---------------------------------------- 4 Cores G6 2 Cores G7 3 + 4
Four opinions -- take your pick -- DO I HAVE CANCER ?
I predict that AI will take the interpretation out of the hands of the pathologist . As they say : " Beauty is in the eye of the beholder ". It was suggested I get another 4th opinion -- I suspect I would then have five different interpretatioons .

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I'd modify the prediction to say that AI will automate a lot of the pathologist's work. The problem is that AI has no "common sense" — it just matches patterns in ways we can't really audit or explain, and every once in a while the match it chooses is absolutely bizarre. So while AI can uncover new patterns for a pathologist look at, in the end we'll still need the pathologist to decide which are meaningful and which are nonsense.

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@northoftheborder

I'd modify the prediction to say that AI will automate a lot of the pathologist's work. The problem is that AI has no "common sense" — it just matches patterns in ways we can't really audit or explain, and every once in a while the match it chooses is absolutely bizarre. So while AI can uncover new patterns for a pathologist look at, in the end we'll still need the pathologist to decide which are meaningful and which are nonsense.

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To take this even further, the seminar I attended a couple of weeks ago wants to change how Gleason scoring is done. They want to break it down into what is more risky in the biopsy. Here is a look at a picture of the new way they want to do scoring.

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@northoftheborder

I'd modify the prediction to say that AI will automate a lot of the pathologist's work. The problem is that AI has no "common sense" — it just matches patterns in ways we can't really audit or explain, and every once in a while the match it chooses is absolutely bizarre. So while AI can uncover new patterns for a pathologist look at, in the end we'll still need the pathologist to decide which are meaningful and which are nonsense.

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I agree with your analysis of AI , However address my question " 'Do I have cancer " ? I am on active surveillance and "MENTALLY " am working on a Gleason 3 +4 = 7 result .
Also : " What Gleason Score would you pick & what would be your next steps be .
My recent Bone & CT Scans are clear . Additionally my year-over-year MRI indicated NO CHANGE in the size or shape of the leison .
Thanks.
p.s. I attend two of the leading cancer research and treatment centers in the world .
The Princess Margaret Hospital and Sunnybrook Hospital , both in Toronto .

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