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.

Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells. I drink daily doses of Turkey tail tea or mushrooms. I took this along with ADT for one year and now I just drink the tea. ADT can be miserable. How long of a course is your doctor recommending?

REPLY
Profile picture for ededed @ededed

Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells. I drink daily doses of Turkey tail tea or mushrooms. I took this along with ADT for one year and now I just drink the tea. ADT can be miserable. How long of a course is your doctor recommending?

Jump to this post

@ededed

ok, you said..."Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells. "

I'll bite, got the science to back that statement...?

Tips to be your own best researcher, https://ancan.org/helpful-tips-to-be-your-own-best-medical-researcher/

Anecdotal Evidence - information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:

Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.

Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.

Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.

Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.

Phases of medical trial studies cited by published medical papers:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice.

Then studies move on to humans…

Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.

Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..

Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.

Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Some terms regarding statistical data cited in medical journals are explained as follows:

N = number of participants: be wary of studies with a very low N.

HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR< 1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.

CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is < =0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested.

REPLY
Profile picture for ededed @ededed

Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells. I drink daily doses of Turkey tail tea or mushrooms. I took this along with ADT for one year and now I just drink the tea. ADT can be miserable. How long of a course is your doctor recommending?

Jump to this post

@ededed There have been some studies indicating that Turkey Tail “may” have a preventive effect on prostate cancer. Here’s one: https://journals.plos.org/plosone/article

(It’s also here: https://pubmed.ncbi.nlm.nih.gov/21603625)

There have been animal studies showing high effectiveness (100% tumor suppression in specific mouse models); research in humans is still ongoing to preventative benefits.

Not every potential remedy regarding prostate cancer will have a long-term, double-blind, controlled, etc., trial. Otherwise, there would be no dietary recommendations as they relate to prostate cancers (or most cancers).

Personally, I haven’t seen enough evidence to persuade me to use Turkey Tail. Then again, I take Modified Citrus Pectin and Lycopene supplements regularly, whereas others wouldn’t.

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My experience with ADT is limited, as I've only been on Orgovyx for 2 months. I haven't experienced side effects I can't live with, but I remain leery of continuing on given what is in the literature and what patients report.

The medical oncologist who is supervising the ADT prescribed by my RO, at my last appointment when the topic of side effects came up, talked about estrogen. He said there is interest among his colleagues at the NCI designated cancer center where I saw him for this appointment, in prescribing estrogen instead of traditional ADT, especially for the case of men who absolutely can't face any more time on the drugs that are more commonly prescribed as ADT.

It seems that normally, men produce a certain amount of estrogen. Drugs aimed at eliminating testosterone in men with prostate cancer also eliminate this estrogen. It appears that eliminating estrogen in men is responsible for many of the side effects of ADT, i.e. osteoporosis, and hot flashes. It turns out that if men take estrogen, in the form of estradiol patches, instead of traditional ADT, the estrogen has the same effect on reducing testosterone as traditional ADT.

There are papers in the literature supporting the adoption of estrogen as a standard of care for ADT.

More info:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00100-8/abstract
https://www.auajournals.org/doi/10.1097/01.JU.0001110200.18879.65.37
https://dailynews.ascopubs.org/do/transdermal-estrogen-may-offer-another-option-adt-men-metastatic-prostate-cancer
https://www.urologytimes.com/special-report/the-estradiol-initiative-rethinking-adt-for-prostate-cancer

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I'm glad you asked.

There is a clinical study in progress by Mayo clinic to reduce the size of breast cancer tumors prior to surgery.

But I have PC and my goal is not to reduce the size of a tumor but to prevent sleeper cells aka cancer stem cells from developing into a tumor at distant locations from my prostate.

Here's the first article I encountered:
Chemopreventive Effect of PSP Through Targeting of Prostate Cancer Stem Cell-Like Population
Sze-Ue Luk ,Terence Kin-Wah Lee ,Ji Liu,Davy Tak-Wing Lee,Yung-Tuen Chiu,Stephanie Ma,Irene Oi-Lin
Ng,Yong-Chuan Wong,Franky Leung Chan,Ming-Tat Ling
Published: May 16, 2011
https://doi.org/10.1371/journal.pone.0019804
Here's a more recent journal article:
Note Turkey tail mushrooms is the common name for Trametes versicolor
https://www.mdpi.com/2072-6651/15/6/360
Mycochemicals against Cancer Stem Cells
by Massimo TacchiniORCID,Gianni Sacchetti *ORCID,Alessandra GuerriniORCID andGuglielmo Paganetto
Department of Life Sciences and Biotechnology, University of Ferrara, 44121 Ferrara, Italy

And lastly a very recent general interest article
https://ideas.repec.org/a/nat/nature/v649y2026i8096d10.1038_d41586-025-04149-3.html
Why cancer can come back years later — and how to stop it

REPLY
Profile picture for kujhawk1978 @kujhawk1978

@ededed

ok, you said..."Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells. "

I'll bite, got the science to back that statement...?

Tips to be your own best researcher, https://ancan.org/helpful-tips-to-be-your-own-best-medical-researcher/

Anecdotal Evidence - information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:

Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.

Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.

Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.

Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.

Phases of medical trial studies cited by published medical papers:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice.

Then studies move on to humans…

Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.

Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..

Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.

Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Some terms regarding statistical data cited in medical journals are explained as follows:

N = number of participants: be wary of studies with a very low N.

HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR< 1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.

CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is < =0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested.

Jump to this post

@kujhawk1978
I replied to your "ask" but accidentally put it as a post to this topic instead of as a reply to you. Please find the reply on this page or private message me.
Ed

REPLY
Profile picture for ededed @ededed

@kujhawk1978
I replied to your "ask" but accidentally put it as a post to this topic instead of as a reply to you. Please find the reply on this page or private message me.
Ed

Jump to this post

@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...

REPLY
Profile picture for kujhawk1978 @kujhawk1978

@ededed

ok, you said..."Turkey tail mushrooms have been shown to suppress or kill prostate cancer stem cells. "

I'll bite, got the science to back that statement...?

Tips to be your own best researcher, https://ancan.org/helpful-tips-to-be-your-own-best-medical-researcher/

Anecdotal Evidence - information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:

Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.

Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.

Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.

Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.

Phases of medical trial studies cited by published medical papers:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice.

Then studies move on to humans…

Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.

Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..

Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.

Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Some terms regarding statistical data cited in medical journals are explained as follows:

N = number of participants: be wary of studies with a very low N.

HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR< 1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.

CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is < =0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested.

Jump to this post

@kujhawk1978 Totally agree with everything you wrote about rumored cures and aids. But an interesting thing that I have learned on my journey with prostate cancer is that a lot of the old studies and statistics have become outdated and yet google searches still promote those as completely valid. Take, for example, the projected remaining life time left for those diagnosed with metastatic prostate cancer. Search engine results will still say 3-5 years expected life time remaining once diagnosed metastatic. And yet, with the latest drugs like Nubeqa, we see guys like @jeffmarc living far beyond that. I also suspect that all the current statistics about the dire chances of ailments in the future from radiation treatments are not correct. As we go forward in time, I think those statistics are going to be revised way down as the current radiation treatments are more precise and done with more protections. In summary, I would say that we certainly want to respect all the well done historical studies, but we also want to be cognizant that advances happen rapidly and that we need to factor in their effect on what the upcoming statistics will likely show.

REPLY
Profile picture for wwsmith @wwsmith

@kujhawk1978 Totally agree with everything you wrote about rumored cures and aids. But an interesting thing that I have learned on my journey with prostate cancer is that a lot of the old studies and statistics have become outdated and yet google searches still promote those as completely valid. Take, for example, the projected remaining life time left for those diagnosed with metastatic prostate cancer. Search engine results will still say 3-5 years expected life time remaining once diagnosed metastatic. And yet, with the latest drugs like Nubeqa, we see guys like @jeffmarc living far beyond that. I also suspect that all the current statistics about the dire chances of ailments in the future from radiation treatments are not correct. As we go forward in time, I think those statistics are going to be revised way down as the current radiation treatments are more precise and done with more protections. In summary, I would say that we certainly want to respect all the well done historical studies, but we also want to be cognizant that advances happen rapidly and that we need to factor in their effect on what the upcoming statistics will likely show.

Jump to this post

@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!

REPLY
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...

Jump to this post

@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.

REPLY
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