Dr said Good news Bad news

Posted by tallbob @tallbob, Jan 24 10:54pm

Very quick history,

2009 October PSA 9 two biopsy's no cancer.
2009 December PSA 20. Biopsy Gleason 6
2010 January robotic surgery, upgrade to Gleason 4x4. Dr said cured, no further treatment needed??? PSA < .04 until 2021
2022 October PSA going up, 33 radiation treatments to prostate bed.
2024 June PSA .37 PSMA CT scan showed two hot lymph nodes above the bladder.
2024 July 5 radiation treatments to lymph nodes. three month PSA .24 Doubling time about 5 months.
2024 new Dr wanted PSA to be in 2.0 range for best scan results.
2026 January PSA 2.26, scan shows no sign of cancer?

Good news, no cancer in suspected in the very hard to treat area, bad news scan shows no cancer anywhere. Dr thinking cancer is in several locations and too small to show up on a scan. Would have preferred a couple larger spots to hit with radiation.

Dr had several suggestions, main one starting ADT. Had Lupron in the past and was not a happy time.
Any thoughts, suggestions or personal experience's?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

To answer a few questions:
During this several year journey genetic etc. testing not done. Will ask the Dr about it.
Was given a three month shot of Lupron before 33 radiation treatments. Hot flashes and tired but the major thing was the mental fog. Wife was ready to move out and I was having trouble remembering where I was at while driving, could not think straight. Told the Dr no on the second shot.
Since no cancer showed on the scan the Dr suggested six weeks of ORGOVYX to see how I am dealing with the side effects. Will add an second ADT if I can handle the side effects. He also mentioned waiting until the PSA was considerably higher so the cancer might be detected with the scan. I didn't want to wait until the PSA reached the 5 to 10 range. We were hoping the scan would show a tumor that could be radiated, clear scan was unexpected.

Still not clear on what treatment is best. Dr Kwon said don't treat if you do not know where the cancer is. I have watched several of his you tube videos but have not seen him discuss treatments if PSA is rising with clear scan.
I made that mistake with prostate bed radiation. Now if cancer does show up there Dr said can not be radiated again.

Thinking about a second option but not sure who to contact. Does anyone have experience with Dr Scholz in LA?

REPLY
Profile picture for tallbob @tallbob

To answer a few questions:
During this several year journey genetic etc. testing not done. Will ask the Dr about it.
Was given a three month shot of Lupron before 33 radiation treatments. Hot flashes and tired but the major thing was the mental fog. Wife was ready to move out and I was having trouble remembering where I was at while driving, could not think straight. Told the Dr no on the second shot.
Since no cancer showed on the scan the Dr suggested six weeks of ORGOVYX to see how I am dealing with the side effects. Will add an second ADT if I can handle the side effects. He also mentioned waiting until the PSA was considerably higher so the cancer might be detected with the scan. I didn't want to wait until the PSA reached the 5 to 10 range. We were hoping the scan would show a tumor that could be radiated, clear scan was unexpected.

Still not clear on what treatment is best. Dr Kwon said don't treat if you do not know where the cancer is. I have watched several of his you tube videos but have not seen him discuss treatments if PSA is rising with clear scan.
I made that mistake with prostate bed radiation. Now if cancer does show up there Dr said can not be radiated again.

Thinking about a second option but not sure who to contact. Does anyone have experience with Dr Scholz in LA?

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@tallbob
Orgovyx acts almost identical to Lupron. It will reduce your testosterone, which can cause the same side effects. You won’t have a second ADT since Orgovyx Is ADT. You Might have an ARPI like Zytiga or a lutamide. Darolutamide Is the easiest on the body and does not cause additional brain fog since it doesn’t pass the blood brain barrier it also doesn’t cause additional side effects for almost anybody.

The thing is Orgovyx Will also cause the brain fog, Hot flashes and fatigue. Hopefully, you can handle it better with Orgovyx, The problem is the low testosterone is what causes the problems and both drugs do the same thing. Drop your testosterone low.

Must admit your brain fog is the worst I’ve ever heard. I can’t remember words or names at times, but know how to look them up. Never get lost driving, that’s a tough one to put up with.

Dr. Kwon And Doctor Scholz Both follow the same idea when it comes to treating advanced prostate cancer. They both want to wait until they can see something and then zap it. Since you started off with radiation, that may be one option. Taking the two types of drugs, really is a good option, for many. That can stop the Cancer from growing and spreading.

If you really really want a different opinion, you should see a different doctor than Scholz.

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Profile picture for ededed @ededed

@kujhawk1978
I've said this before on other threads.

My urologist is surprised that I am doing as well as I am. I was diagnosed with a PSA of 54.0 and with local metastasis. He refuses to talk to me about supplements other than Calcium, Vitamins D3 and C. But, he does mention that I should keep on doing whatever I am doing.

So, I talk about Turkey tail and its constituents PSP and PSK freely so that others may consider it.

BTW The Turkey tail I consume is from both foraged mushrooms that I collect and products that I purchase when I run out of what I have gathered from the local woods.

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@ededed
I looked at your profile, can't find anything on your clinical history, am I missing something?

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Diagnosed in 2020 with a PSA of 54.0, Gleason of 8, Metastasis within pelvic cavity
(Because it was at the height of covid before vaccinations were available I did not seek a second opinion at a major cancer center. )
I could not get a barrier gel because of the location of one of the suspected metastasis

In 2021 had 42 sessions of IMRT

Radiation proctitis diagnosed in 2021

Last PSA in 2025 was 0.08

Message me if you would like further personal info

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Profile picture for kujhawk1978 @kujhawk1978

@ededed

I got to this point in the article...

"It is worth noting that the administration of PSPs through oral feeding to transgenic mice that naturally develop prostate tumours resulted in the complete suppression of prostate tumour growth. This finding suggests that PSPs may serve as a potent chemopreventive agent against prostate cancer, potentially by targeting..."

I am here 12 years after my diagnosis because I applied the science in making my treatment decisions.

Never has my medical team, a very trained, educated and existences group brought up anything other than science backed treatment.

That's not to say they were against supplements, just not advocating for them as having a role in managing one's PCa.

Sure, exercise plays a role in our health. So does diet, managing stress...
I see no scientific evidence as I suggested be the basis for making decision...

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@kujhawk1978 Kevin, Most of the articles advocating for Turkey Tail mushrooms is for supplementary use ONLY. This is NOT a stand alone treatment and as of right now, I have not seen any studies where it is being used in humans as a sole treatment. They do use it in Japan for breast cancer and women take up to 9 grams/day along with chemotherapy.
As I pointed out on another thread, please do the math on what an equivalent human dose would be as compared to mice in the case of PCa: something like 25 grams/day.
You’d need almost an entire bottle (60 500mg capsules) PER DAY at like anywhere from $25-$45 depending…and needless to say, totally out of pocket. Is this realistic for most men??
Phil

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Profile picture for kujhawk1978 @kujhawk1978

@wwsmith

I've posted about that, others mention it. Guidelines such as NCCN and AUA are he science, because of their rigor It is that rigor which may in some, not all cases, "outdated," lagging behind data emerging from clinical trials.

Then there's statistics, they are historical and population based, egro, may not be applicable because of their historical nature given the pace of advances brought about through medical research finding its way into mainstream clinical practice.

I do think they are a starting point for discussions with one's medical team.

My last two decisions, triplet therapy starting in Jan 17 and doublet therapy in 2023 have been "hybrid decisions." part NCCN and AUA guidelines and part treatments entering mainstream clinical practice from medical research.

My oncologist, a good one, active listener, shared decision making, advocates the next time for 24 months ADT+ARI which is in the guidelines. I counter with well, let's see when the time comes what the clinical data says and then decide, we could do MDT only, MDT +ADT, do the PATCH Trial, ARI mono therapy, heck, bring forward Lutetium 177 and combine it with ADT.

So many choices, good for a heterogenous disease and a heterogenous patient population!

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@kujhawk1978 It's really good to hear that guys with metastatic prostate cancer have many more options these days versus what they had just a few years ago. I like the term "hybrid decision" as that allows consideration of the rigorous NCCN and AUA guidelines as well as the most current clinical reports. For those on the front lines of this battle, the very latest information matters a lot.

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Profile picture for heavyphil @heavyphil

@kujhawk1978 Kevin, Most of the articles advocating for Turkey Tail mushrooms is for supplementary use ONLY. This is NOT a stand alone treatment and as of right now, I have not seen any studies where it is being used in humans as a sole treatment. They do use it in Japan for breast cancer and women take up to 9 grams/day along with chemotherapy.
As I pointed out on another thread, please do the math on what an equivalent human dose would be as compared to mice in the case of PCa: something like 25 grams/day.
You’d need almost an entire bottle (60 500mg capsules) PER DAY at like anywhere from $25-$45 depending…and needless to say, totally out of pocket. Is this realistic for most men??
Phil

Jump to this post

@heavyphil

Phil

Thanx.

I understand supplements though generally, not sure of the value, but, that's me. When I started ADT the first time, my urologist perfunctorily said to take Vitamin D...I said, well are we going to get a baseline bone density scan and labs to determine where I am and when do we assess whether or not the ADT has changed that baseline where I need supplemental Vitamin D3.

I said given my exercise regimen, do I need to take a Vitamin D3 supplement?

He did the bone density scan and labs, repeated at six, 12 and months, no issues.

My concern was with the statement "Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells....). I simply asked for the links to the research backing that statement up,

Kevin

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Profile picture for kujhawk1978 @kujhawk1978

@heavyphil

Phil

Thanx.

I understand supplements though generally, not sure of the value, but, that's me. When I started ADT the first time, my urologist perfunctorily said to take Vitamin D...I said, well are we going to get a baseline bone density scan and labs to determine where I am and when do we assess whether or not the ADT has changed that baseline where I need supplemental Vitamin D3.

I said given my exercise regimen, do I need to take a Vitamin D3 supplement?

He did the bone density scan and labs, repeated at six, 12 and months, no issues.

My concern was with the statement "Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells....). I simply asked for the links to the research backing that statement up,

Kevin

Jump to this post

@kujhawk1978 yeah, I hear you; I took massive doses if D with K3/magnesium AND even bought a UVB sunlamp when my low D levels were diagnosed.
After 6 months of that, my D went up ONE POINT!!
My doctor at the time laughed at me and said that some people just don’t absorb it well; however, my bone density test years later was totally normal…go figure.
The Turkey Tail studies can be found at NIH website and @ededed has posted some links as well. Again, mostly in vitro and mice models.
Phil

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Profile picture for kujhawk1978 @kujhawk1978

@heavyphil

Phil

Thanx.

I understand supplements though generally, not sure of the value, but, that's me. When I started ADT the first time, my urologist perfunctorily said to take Vitamin D...I said, well are we going to get a baseline bone density scan and labs to determine where I am and when do we assess whether or not the ADT has changed that baseline where I need supplemental Vitamin D3.

I said given my exercise regimen, do I need to take a Vitamin D3 supplement?

He did the bone density scan and labs, repeated at six, 12 and months, no issues.

My concern was with the statement "Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells....). I simply asked for the links to the research backing that statement up,

Kevin

Jump to this post

@kujhawk1978
Taking calcium and vitamin D is really critical if on ADT. Overtime it can deteriorate your Bones and those drugs can help keep them strong. I’ve had bone strengtheners for eight years.

REPLY
Profile picture for tallbob @tallbob

To answer a few questions:
During this several year journey genetic etc. testing not done. Will ask the Dr about it.
Was given a three month shot of Lupron before 33 radiation treatments. Hot flashes and tired but the major thing was the mental fog. Wife was ready to move out and I was having trouble remembering where I was at while driving, could not think straight. Told the Dr no on the second shot.
Since no cancer showed on the scan the Dr suggested six weeks of ORGOVYX to see how I am dealing with the side effects. Will add an second ADT if I can handle the side effects. He also mentioned waiting until the PSA was considerably higher so the cancer might be detected with the scan. I didn't want to wait until the PSA reached the 5 to 10 range. We were hoping the scan would show a tumor that could be radiated, clear scan was unexpected.

Still not clear on what treatment is best. Dr Kwon said don't treat if you do not know where the cancer is. I have watched several of his you tube videos but have not seen him discuss treatments if PSA is rising with clear scan.
I made that mistake with prostate bed radiation. Now if cancer does show up there Dr said can not be radiated again.

Thinking about a second option but not sure who to contact. Does anyone have experience with Dr Scholz in LA?

Jump to this post

@tallbob

I saw Scholz for 14 years starting in 2012 with a very small amount of Gleason 3+4. I was on AS the whole time until treating 4+4 at Mayo in December 2025. He is a good doc. Pricy, as he now uses a membership system, and new patient costs seem rather high. If you can afford him a good option. He mostly tips his hand with his videos. My take is that he is likely one of the few docs that think less adt is better than more adt. With psma scans being the backup plan to find recurrence disease on then zap spot(s) with radiation.

I have been on Firmagon for 4 months. Very little side effects other than expected loss of sex. Doc wanted me to go on Lupron and told him no, stick with what works. It dropped psa from 6 to .3 in one month. Hit the fitness club three times a week. Working for me anyway. Good luck, god bless.

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