Choosing Active Surveillance over any further treatment at this time

Posted by ovstampco @ovstampco, Mar 23 1:26pm

This is a new comment , not related to the last post I'm not sure how to start a new thread but this is my issue and feel free to reply with any insights . I'm 68 and over the last 2 years I've had my PSA tested 4 times - each test with a lower number than the last . I also had a 3T-MRI which showed a small 5mm lesion contained in my prostate with no sign of migration . My health care provider ( Kaiser - California ) will not approve any other test ( i.e. PSE , PSMA etc. ) I don't know if I can even talk them into a follow up MRI as it took me 2 months to approve of the first one after being rejected over and over ..... here is the reason I'm choosing AS over any further treatment at this time :
When considering the life expectancy and mortality risk between two 68-year-old men, one with untreated prostate cancer (PSA = 8.6, Gleason score of 3+4) and the other with normal PSA and Gleason levels (no prostate cancer), several key factors must be taken into account, including the severity of prostate cancer, overall health, and other potential causes of death. Let's analyze the two scenarios in detail.

1. 68-Year-Old with Prostate Cancer (PSA = 8.6, Gleason Score 3+4)
PSA Level (8.6): A PSA level of 8.6 is elevated and suggests the presence of prostate cancer, though it’s not extremely high. PSA levels can fluctuate and are influenced by several factors, but PSA is a primary marker used to detect prostate issues.

Gleason Score (3+4 = 7): A Gleason score of 7 indicates intermediate-grade prostate cancer. This means the cancer is more aggressive than a low-grade (Gleason 6) cancer, but it is not as aggressive as high-grade cancers (Gleason 8-10). Gleason 7 cancer has a moderate likelihood of spreading beyond the prostate if left untreated, although many men with Gleason 7 prostate cancer live for years without it spreading aggressively.

Life Expectancy & Mortality Risk:

Life Expectancy: For a 68-year-old man with untreated Gleason 7 prostate cancer and PSA of 8.6, life expectancy will be influenced by several factors:

Prostate Cancer Prognosis: Untreated prostate cancer with a Gleason score of 7 (especially 3+4) is typically not immediately life-threatening. However, the cancer may spread over time, affecting the individual’s overall prognosis. While some men with intermediate-grade prostate cancer can live for many years with good quality of life, others may experience progression.

Overall Health: If the person is otherwise healthy with no significant comorbidities, life expectancy could still be in the range of 15-20 years or more, though this could be shortened if the cancer progresses and metastasizes.

Mortality Risk:

Prostate Cancer Mortality: The risk of dying from prostate cancer in this case is moderate but not extremely high. Untreated, Gleason 7 cancer can eventually lead to metastasis, and advanced prostate cancer can become life-threatening.

Death from All Causes: The individual’s risk of dying from other causes (e.g., heart disease, stroke, accidents) is still significant, given age and the fact that prostate cancer is just one factor. The presence of cancer increases mortality risk compared to someone with no cancer, but the risk of death from prostate cancer itself is moderate.

2. 68-Year-Old with Normal PSA and Gleason Score (No Prostate Cancer)
Normal PSA and Gleason Score: In this case, there is no evidence of prostate cancer. The person’s PSA is within normal limits (under 4.0 ng/mL) and their Gleason score is not applicable, as there is no cancer present. This person does not face the risk of prostate cancer, which significantly impacts overall mortality and life expectancy.

Life Expectancy & Mortality Risk:

Life Expectancy: This individual is generally expected to live as long as the average 68-year-old. The life expectancy could be around 15-20 more years, depending on their overall health and lifestyle. Without cancer, they are not facing the additional health risks associated with untreated prostate cancer.

Mortality Risk:

Death from Prostate Cancer: There is no risk of dying from prostate cancer in this case.

Death from All Causes: Mortality risks are similar to the general population, depending on comorbidities and lifestyle factors. Cardiovascular disease, respiratory conditions, or other chronic conditions become more relevant risks with age.

Comparing Life Expectancy and Mortality from All Causes:
68-Year-Old with Prostate Cancer (PSA 8.6, Gleason 3+4)
Life Expectancy: Likely in the range of 15-20 years or possibly more, depending on the progression of the cancer and any other health factors. The cancer could progress, but Gleason 7 prostate cancer is typically not immediately fatal, and many men live for years with untreated or managed prostate cancer.

Mortality Risk:

Prostate Cancer Mortality: Given the Gleason score of 7, the risk of dying specifically from prostate cancer is moderate. Without treatment, there is a higher likelihood of progression to metastatic disease, which can increase mortality risk.

Mortality from All Causes: Increased risk of mortality from other causes (such as heart disease, stroke, etc.) compared to someone without prostate cancer.

68-Year-Old with Normal PSA and Gleason Score
Life Expectancy: Likely to be in the range of 15-20 more years, depending on overall health and lifestyle factors, since there’s no prostate cancer or other significant health issues.

Mortality Risk:

Prostate Cancer Mortality: Zero, since there’s no prostate cancer.

Mortality from All Causes: Similar to the general population for a 68-year-old, with risks increasing as the individual ages, but not specifically elevated due to prostate cancer.

Conclusion:
Life expectancy for both individuals is relatively similar, but the 68-year-old with untreated Gleason 7 prostate cancer (PSA = 8.6) may have a slightly reduced life expectancy due to the cancer’s potential to spread over time. However, many men with Gleason 7 prostate cancer live for many years without significant symptoms.

Mortality risk from prostate cancer is moderate for the person with Gleason 7 cancer, and their overall mortality risk (from all causes) is likely higher than that of the person with no cancer, due to the additional cancer-related health risks.

The individual with normal PSA and Gleason levels, being cancer-free, has a life expectancy similar to the general population, with typical risks associated with aging. Their risk of dying from prostate cancer is zero, but they may face the usual age-related mortality risks.

Overall, the 68-year-old with Gleason 7 prostate cancer has an increased risk of dying from prostate cancer and possibly a slightly higher overall risk of death from other causes, compared to the person with no prostate cancer. However, their life expectancy may still be fairly similar to the average for their age, especially if the cancer remains indolent and untreated.

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

@mgc63

Hi I have been under active surveillance for 6yrs my urologist informed me that I would die with it not because of if all well and good in 5th year after a skeletal and MRI I asked if cyber knife or proton beam therapy would be a good option as every time I had blood tests and scans my anxiety levels escalated and I thought why not deal with it now and get on with life well that didn't go down well with anybody two years down the track I'm now 3+4 Gleason level with some annoying little issues attached the fact is if there is cancer in your family history it could become problematic I strongly believe that it's your body and your right to choose how you wish to deal with what's going on with you .me personally I'm a fixer dont wait around sort it if your cars making a funny noise and not running right and your mechanic went we'll watch and see im certain you'd get a new mechanic I should've got another urologist

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According to doctors at the latest PCRI convention

Grade group, one HIGH volume likely to proceed to treatment. (3+4 is grade group 2)
5-10% of GG1 within 5 years before progression

Within 10 years 51% of Gleason 6 on AS have to be treated.
High volume is >5 cores found with Gleason 6.

You are at the point that progression is very likely. I think you should get involved with another group of doctors to find out what the best choice is. Going to a center of excellence like Mayo would be a good choice. At a minimum, you should find yourself a Genito Urinary Oncologist, the ones who specialize in prostate cancer, To lead your treatment decisions, you need new choices at this point.

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@ovstampco

Hi , thanks for the explanation about the free PSA number . Does the biopsy ( with the gleason score ) automatically come with the Decipher score ? If so what would be considered a " good " decipher score vs. a bad one ? If you don't mind me asking what was your decipher score ?
Thanks in advance !

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A Decipher test has to be specifically requested by your urologist and is a genomic test conducted on a cancerous core taken during your biopsy (assuming they find some).

Obviously, you only request the Decipher test if cancer is found in the biopsy.

The test genomically compares your cancer to that of 200,000+ men, in their database, and assigns a risk level as to the likelihood of your cancer to metastasize.

If you get to this point, you would also want to request the so called “Decipher GRID”, which is provided upon request for every test and gives a lot of other specific information regarding the genomic nature of your cancer cells.

A portion of my Decipher GRID report is attached. Their “Clinical-Genomic Model” rated my PCa as “Low Risk” and recommended AS….my “score” was 0.22.

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@ovstampco

Hi ;
Thanks for the input , you're right about it being easy to find a PSE test center - there is one nearby but the problem is even if I wanted to pay cash to get the test they won't give it to me without my provider issuing an approval . My urologist at Kaiser said he would not approve a PSE test nor any of the other non- standard tests - at this time Kaiser's policy is to only approve the PSA test , an MRI ( with a lot of pressure from the patient .... as it took me 2 months to pressure them into approving one ) and a transrectal biopsy . I will take another PSA in 6 months and if my number rises I'll probably have to go with the transrectal biopsy . though with my little sister passing away last year with a blood infection from a much less invasive procedure I'm still not happy about the prospect .....

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I can undertstand the reluctance to for an invasive procedure. If you later decide to get a PSE test and have any problem such as this with the provider, my understanding is that the PSE test manufacturer can help you. The manufacturer contact name was provided in this forum before and I found him to be very responsive via email.

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@handera

A Decipher test has to be specifically requested by your urologist and is a genomic test conducted on a cancerous core taken during your biopsy (assuming they find some).

Obviously, you only request the Decipher test if cancer is found in the biopsy.

The test genomically compares your cancer to that of 200,000+ men, in their database, and assigns a risk level as to the likelihood of your cancer to metastasize.

If you get to this point, you would also want to request the so called “Decipher GRID”, which is provided upon request for every test and gives a lot of other specific information regarding the genomic nature of your cancer cells.

A portion of my Decipher GRID report is attached. Their “Clinical-Genomic Model” rated my PCa as “Low Risk” and recommended AS….my “score” was 0.22.

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Hi , thanks for the info that was very helpful . One other question for you ..... what did your MRI show ? Mine was borderline Pi-Rad 3-4 and there is a 5mm lesion which is contained in in the prostate with no evidence of migration outside of the prostate. I'm only asking because your situation seems somewhat similar to where I'm at ...

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@ovstampco

Hi , thanks for the info that was very helpful . One other question for you ..... what did your MRI show ? Mine was borderline Pi-Rad 3-4 and there is a 5mm lesion which is contained in in the prostate with no evidence of migration outside of the prostate. I'm only asking because your situation seems somewhat similar to where I'm at ...

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My prebiopsy PSA level was 7.8, taken 4 months before the first mpMRI. I'm currently 68 years old.

My initial (October 2023) mpMRI showed three lesions. Lesion 1 was 2.2 x 1.1 cm and considered a PI-RADS-5 lesion. Lesion 2 was 0.7 cm and considered PI-RADS-4. Lesion 3 was 0.9 cm considered PI-RADS 3.

I had a mpMRI fusion targeted transrectal biopsy in October 2023 indicating 5 cores with adenocarcinoma (Gleason Score 3 + 3 = 6) involving 5%-10% of the specimen and 2 cores with adenocarcinoma (Gleason Score 3 + 4 = 7) involving 20% of the specimen with Gleason Pattern 4 comprising 10 - 20% of the cancer. A total of 21 cores taken. As I indicated, my Decipher Score was 0.22. I started AS and significantly increased my aerobic running regiment and modified my diet.

The odd thing was the PIRADS 4 & 5 lesions were found to be low volume 3+3 and the PIRADS 3 lesion was found to be benign and the low volume 3+4 cores were found in the "random" 12 core portion of the biopsy...apparently too small to be detected by MRI.

As of March 2025, I've had 6 post-biopsy PSA tests, which have averaged ~6.6; below the initial 7.8 prebiopsy PSA.

My 12 month follow-up mpMRI (October 2024) showed that Lesion 1 had slightly shrunk (1.9 x 1.1 cm) and its T2 hypointense focus and DWI/ADC signals had dropped from "moderate" to "mild". The other two lesions (the PIRADS 3 & 4 ones) could not be seen in the 12 month followup MRI.

I've lost ~25 lbs, since I was diagnosed, which I'm sure is due to my aerobic exercise and modified diet.

My urologist indicated that since my 12 month mpMRI did not show lesion progression, I could forgo another biopsy for now.

I continue my AS regiment and I'm glad my numbers are moving in the right direction....my plan is to have another mpMRI in October 2025 to see where I stand.

Dr. Mark Emberton, Professor of Interventional oncology at University College London and Dean of its Faculty of Medical Sciences made a recent presentation about the meaning of low risk prostate cancer that is not seen in a mpMRI. I found it very helpful.

Best,

Alan

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@handera

My prebiopsy PSA level was 7.8, taken 4 months before the first mpMRI. I'm currently 68 years old.

My initial (October 2023) mpMRI showed three lesions. Lesion 1 was 2.2 x 1.1 cm and considered a PI-RADS-5 lesion. Lesion 2 was 0.7 cm and considered PI-RADS-4. Lesion 3 was 0.9 cm considered PI-RADS 3.

I had a mpMRI fusion targeted transrectal biopsy in October 2023 indicating 5 cores with adenocarcinoma (Gleason Score 3 + 3 = 6) involving 5%-10% of the specimen and 2 cores with adenocarcinoma (Gleason Score 3 + 4 = 7) involving 20% of the specimen with Gleason Pattern 4 comprising 10 - 20% of the cancer. A total of 21 cores taken. As I indicated, my Decipher Score was 0.22. I started AS and significantly increased my aerobic running regiment and modified my diet.

The odd thing was the PIRADS 4 & 5 lesions were found to be low volume 3+3 and the PIRADS 3 lesion was found to be benign and the low volume 3+4 cores were found in the "random" 12 core portion of the biopsy...apparently too small to be detected by MRI.

As of March 2025, I've had 6 post-biopsy PSA tests, which have averaged ~6.6; below the initial 7.8 prebiopsy PSA.

My 12 month follow-up mpMRI (October 2024) showed that Lesion 1 had slightly shrunk (1.9 x 1.1 cm) and its T2 hypointense focus and DWI/ADC signals had dropped from "moderate" to "mild". The other two lesions (the PIRADS 3 & 4 ones) could not be seen in the 12 month followup MRI.

I've lost ~25 lbs, since I was diagnosed, which I'm sure is due to my aerobic exercise and modified diet.

My urologist indicated that since my 12 month mpMRI did not show lesion progression, I could forgo another biopsy for now.

I continue my AS regiment and I'm glad my numbers are moving in the right direction....my plan is to have another mpMRI in October 2025 to see where I stand.

Dr. Mark Emberton, Professor of Interventional oncology at University College London and Dean of its Faculty of Medical Sciences made a recent presentation about the meaning of low risk prostate cancer that is not seen in a mpMRI. I found it very helpful.

Best,

Alan

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I have heard that a restrictive diet can have noticeable effects on PC. I’ve heard of one other report of similar results to yours, where the cancer subsided.

The thing is, you had a high number of cores with cancer. That implies you are likely to have something that needs to be treated in the next five years, if you do AS.

Hopefully what you are doing will make it way past that timeframe.

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@jeffmarc

I have heard that a restrictive diet can have noticeable effects on PC. I’ve heard of one other report of similar results to yours, where the cancer subsided.

The thing is, you had a high number of cores with cancer. That implies you are likely to have something that needs to be treated in the next five years, if you do AS.

Hopefully what you are doing will make it way past that timeframe.

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Thanks jeffMar!

You are exactly right!

My urologist indicated the same thing about the probability of potential need for treatment in 5 years, although he said I was conducting what he calls “aggressive AS” and that certainly pushes the odds out in my favor

I been blessed enough to be able to do a lot of aerobic running (20km/week now); without ever enduring injury….however I worked my way up to this level over 2.5 years and I always run on a rubberized track with super cushion Hoka Bondi 8’s….everything to minimize joint issues….also helps that I’m in a runners support group, which I started.

I’ve studied the aerobic exercise vs diet research quite thoroughly, as it relates to slowing PCa, and it’s pretty clear that exercise trumps diet when it comes to scientifically designed trials.

Don’t get me wrong, diet is important; but thinking one is going to make significant progress by simply changing diet and adding supplements, without implementing vigorous exercise, is IMHO scientifically unwarranted.

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@handera

My prebiopsy PSA level was 7.8, taken 4 months before the first mpMRI. I'm currently 68 years old.

My initial (October 2023) mpMRI showed three lesions. Lesion 1 was 2.2 x 1.1 cm and considered a PI-RADS-5 lesion. Lesion 2 was 0.7 cm and considered PI-RADS-4. Lesion 3 was 0.9 cm considered PI-RADS 3.

I had a mpMRI fusion targeted transrectal biopsy in October 2023 indicating 5 cores with adenocarcinoma (Gleason Score 3 + 3 = 6) involving 5%-10% of the specimen and 2 cores with adenocarcinoma (Gleason Score 3 + 4 = 7) involving 20% of the specimen with Gleason Pattern 4 comprising 10 - 20% of the cancer. A total of 21 cores taken. As I indicated, my Decipher Score was 0.22. I started AS and significantly increased my aerobic running regiment and modified my diet.

The odd thing was the PIRADS 4 & 5 lesions were found to be low volume 3+3 and the PIRADS 3 lesion was found to be benign and the low volume 3+4 cores were found in the "random" 12 core portion of the biopsy...apparently too small to be detected by MRI.

As of March 2025, I've had 6 post-biopsy PSA tests, which have averaged ~6.6; below the initial 7.8 prebiopsy PSA.

My 12 month follow-up mpMRI (October 2024) showed that Lesion 1 had slightly shrunk (1.9 x 1.1 cm) and its T2 hypointense focus and DWI/ADC signals had dropped from "moderate" to "mild". The other two lesions (the PIRADS 3 & 4 ones) could not be seen in the 12 month followup MRI.

I've lost ~25 lbs, since I was diagnosed, which I'm sure is due to my aerobic exercise and modified diet.

My urologist indicated that since my 12 month mpMRI did not show lesion progression, I could forgo another biopsy for now.

I continue my AS regiment and I'm glad my numbers are moving in the right direction....my plan is to have another mpMRI in October 2025 to see where I stand.

Dr. Mark Emberton, Professor of Interventional oncology at University College London and Dean of its Faculty of Medical Sciences made a recent presentation about the meaning of low risk prostate cancer that is not seen in a mpMRI. I found it very helpful.

Best,

Alan

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Alan ; Thanks again ! That is really interesting - I'm 68 also .... after my first 2 PSA tests ( Jan 2024 ) came back at 10.9 and 11.0 I did what you did , I started exercising , running about 8 miles a week and going to the gym 3-4 times a week and I stopped eating food that tasted good ( unhealthy ) and switched to 80% meals of avocado toast , broccoli , fruits lower fat & sodium stuff and quit coffee etc. When I took my next PSA test 6 months later it came back at 8.6 . During the holidays I fell off the healthier eating wagon - shortly after that I was involved in a minor skiing tragedy and could barely walk for a few weeks I went about 2 months before I started exercising again - my last PSA test was right before I started exercising ( 2 weeks ago ) and it came back at 10.3 .
After reading your story I'm again inspired to start on a healthier diet again .... it sounds like it could actually make a difference . I guess I'll find out after my next PSA test in 6 months .

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@ovstampco

Alan ; Thanks again ! That is really interesting - I'm 68 also .... after my first 2 PSA tests ( Jan 2024 ) came back at 10.9 and 11.0 I did what you did , I started exercising , running about 8 miles a week and going to the gym 3-4 times a week and I stopped eating food that tasted good ( unhealthy ) and switched to 80% meals of avocado toast , broccoli , fruits lower fat & sodium stuff and quit coffee etc. When I took my next PSA test 6 months later it came back at 8.6 . During the holidays I fell off the healthier eating wagon - shortly after that I was involved in a minor skiing tragedy and could barely walk for a few weeks I went about 2 months before I started exercising again - my last PSA test was right before I started exercising ( 2 weeks ago ) and it came back at 10.3 .
After reading your story I'm again inspired to start on a healthier diet again .... it sounds like it could actually make a difference . I guess I'll find out after my next PSA test in 6 months .

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Sorry to hear of your skiing injury….are you fully recovered from that episode so that you can beginning running ( or maybe an elliptical) again?

Regarding diet, as I mentioned in an earlier post, one must find something that is sustainable as a new lifestyle.

I started a strict vegan diet immediately after being diagnosed….I shed 25 lbs in 3 months and saw some amazing non-PCa related benefits quickly.

However, I had a negative side effect, regarding poor superficial wound healing, that led me to add animal protein back into a sustainable diet routine. I now have been at the same weight (162 lbs 5’11”) for one year.

I have permanently adopted Matcha tea, homemade Ezekiel bread, homemade broccoli sprouts, dark berry smoothies with flaxseed and Amla powder and red pepper and hummus; because I really like the taste of these foods.

However, I drink an 8 oz glass of red wine and various types of cheese and whole wheat crackers every single day and also enjoy the occasional steak.

The Bottom Line is that whatever diet choices you adopt make sure you like the taste of everything; otherwise you’ll stop as soon as you’ve “had enough of this junk”.

All that said, the PCa research is much clearer about the benefits of aerobic exercise in slowing the progression of PCa….IMHO the research into various diet and supplement choices is much more scientifically iffy…

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@handera

Sorry to hear of your skiing injury….are you fully recovered from that episode so that you can beginning running ( or maybe an elliptical) again?

Regarding diet, as I mentioned in an earlier post, one must find something that is sustainable as a new lifestyle.

I started a strict vegan diet immediately after being diagnosed….I shed 25 lbs in 3 months and saw some amazing non-PCa related benefits quickly.

However, I had a negative side effect, regarding poor superficial wound healing, that led me to add animal protein back into a sustainable diet routine. I now have been at the same weight (162 lbs 5’11”) for one year.

I have permanently adopted Matcha tea, homemade Ezekiel bread, homemade broccoli sprouts, dark berry smoothies with flaxseed and Amla powder and red pepper and hummus; because I really like the taste of these foods.

However, I drink an 8 oz glass of red wine and various types of cheese and whole wheat crackers every single day and also enjoy the occasional steak.

The Bottom Line is that whatever diet choices you adopt make sure you like the taste of everything; otherwise you’ll stop as soon as you’ve “had enough of this junk”.

All that said, the PCa research is much clearer about the benefits of aerobic exercise in slowing the progression of PCa….IMHO the research into various diet and supplement choices is much more scientifically iffy…

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Your diet sounds like an excellent one - tasty too! You eat a nice variety of foods as well and don’t punish yourself eating something that belongs more in a feed bag than a dinner plate.
I agree that exercise is key - even moderate is fine if you are already not overweight and needing to lose. Many studies support the idea that a balanced diet and exercise TOGETHER is the best - and easiest - way to go. Good posts, Alan.
Phil

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