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.

@ovstampco My apologies .
In my previous reply I incorrectly referred you to a Prostate Cancer U - Tube site :
It should be Dr. Mark Scholz U -Tube Videos . NOT Dr. Klotz who is a Urologist at Sunnybrook Hospital in Toronto ( Dr. Laurence Klotz ) who was on the original research team , under Dr Gupta the inventor the TULSA - PRO Procedure . Dr. Gupta took a patent on the invention , formed a company and now practices in the USA .

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@clandeboye1

@ovstampco My apologies .
In my previous reply I incorrectly referred you to a Prostate Cancer U - Tube site :
It should be Dr. Mark Scholz U -Tube Videos . NOT Dr. Klotz who is a Urologist at Sunnybrook Hospital in Toronto ( Dr. Laurence Klotz ) who was on the original research team , under Dr Gupta the inventor the TULSA - PRO Procedure . Dr. Gupta took a patent on the invention , formed a company and now practices in the USA .

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Dr, Scholz’s videos are under PCRI the organization he created to get out information on prostate cancer. Yesterday they had a 9 hour conference, with him and Dr. Mark Moyad discussing issues and answering questions at the end..

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You did your homework on a very interesting breakdown of the pros and cons , I wish I saw more info like this , at 78 I would have not gone thru surgery and radiation. Pre surgery I still didn’t need Viagra very often , now it’s useless and the size of a 10 yr old . I look forward to soon based on various comments to get on to Trimex before I go blind or become an alcoholic 🙏

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@jeffmarc

Dr, Scholz’s videos are under PCRI the organization he created to get out information on prostate cancer. Yesterday they had a 9 hour conference, with him and Dr. Mark Moyad discussing issues and answering questions at the end..

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@jeffmarc Thanks - Much appreciated .

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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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@northoftheborder

The other piece I'd recommend is genetic testing. It's simple and non-invasive, and the presence or absence of mutations to (e.g.) BRCA1 and BRCA2 can give an early warning that the cancer's likely to become aggressive.

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That's extremely good advice in fact everybody should have those tests I wish I had earlier 😕

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@heavyphil

Are these YOUR Gleason scores? Don’t see a biopsy in your history. Without a biopsy you can’t compare these scenarios to your particular situation.

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Agreed. Also number of cores positive and % of 4 equally important. two people with Gleason 7 but one having 9 out of 12 positive cores has a very different risk profile to the other having just 1 out of 12 positive.
And then there is the risk tolerance of the individual. Huge variation here too.

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@ovstampco

I'm a little confused ..... my report said my free PSA numbers were .68 ng/ml is that bad ? The number doesn't seem to correspond to the numbers on the listed charts ... like 0-10% and over 25% - so .68 is very unfavorable ?

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It is very important that you follow up with your urologist about your free PSA level.

Free PSA is the portion of PSA that circulates unbound in the blood and is usually expressed as a percentage of total PSA (free PSA ÷ total PSA × 100).

A lower percentage increases the likelihood of prostate cancer, while a higher percentage suggests a benign condition.

If your total PSA is 10.3 ng/mL and your free PSA is actually 0.68 ng/mL, as you indicate, then your Free PSA % = (0.68 ÷ 10.3) × 100 ≈ 6.6%.

A free PSA percentage of 6.6% is quite low and suggests a higher likelihood of prostate cancer.

I’m low volume 3+4, with low risk Decipher score and a PSA averaging 6.6….also on AS. I will only reluctantly consider a follow up biopsy, if/when a follow-up mpMRI shows lesion progression…so I understand your concerns about biopsy.

That said, IMHO if I had PSA numbers and a MRI as you report; I would not hesitate to get a targeted MRI biopsy and a Decipher score….it may come back “low risk” and you can continue AS….but at least you know what you’re dealing with.

All the best,

Alan

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@jsh327

It is the reason why forums such as this are critical. The adoption of better tests and treatments are slow annd especially through insurance provider approvals, unless you are being treated by the best at the leading PCa centers. It is now easy to find PSE test centers.

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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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@handera

It is very important that you follow up with your urologist about your free PSA level.

Free PSA is the portion of PSA that circulates unbound in the blood and is usually expressed as a percentage of total PSA (free PSA ÷ total PSA × 100).

A lower percentage increases the likelihood of prostate cancer, while a higher percentage suggests a benign condition.

If your total PSA is 10.3 ng/mL and your free PSA is actually 0.68 ng/mL, as you indicate, then your Free PSA % = (0.68 ÷ 10.3) × 100 ≈ 6.6%.

A free PSA percentage of 6.6% is quite low and suggests a higher likelihood of prostate cancer.

I’m low volume 3+4, with low risk Decipher score and a PSA averaging 6.6….also on AS. I will only reluctantly consider a follow up biopsy, if/when a follow-up mpMRI shows lesion progression…so I understand your concerns about biopsy.

That said, IMHO if I had PSA numbers and a MRI as you report; I would not hesitate to get a targeted MRI biopsy and a Decipher score….it may come back “low risk” and you can continue AS….but at least you know what you’re dealing with.

All the best,

Alan

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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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