Watchful Waiting

Sshmalan · November 2013

PSA is 18, (doubling time around 2 yrs) bone scan negative, no symptoms. Diagnosed July 2011, 2 of 10 cores cancerous one 30%, one 40%, Gleason 3+4=7. I'm 57, fit and treating with active surveillance, diet exercise. Vegetarian for over a decade. Father had prostate cancer and lived until 83. Not sure if cancer was a factor at all.

I can't see treating with surgery or radiation from where I'm at with no symptoms. Been blessed with a good long life and not afraid of what is after life. At 57, still not in a hurry to get there, though.

Don't like the chances of impotency, urinary problems that accompany surgery and radiation.

I'm a Veteran and get primary care with VAMC. They are federal and do not recognize Oregon's Death with Dignity laws, so I will pursue that elsewhere as I am not a fan of pain and/or lingering. I'm an animal lover and always thought we should get to rest when we're done like our best friends (critters).

I feel good today! Vital and positive and just wanted to share my experience so far.

hopeful and optimistic · November 2013

Active Surveillance?

As a man who has been on AS for the last four and one half years I have studied this treatement decision extensively, as you may have as well.

First the criteria for low risk patients that Johns Hopkins uses for AS is PSA under 10, gleason 3=3=6,less than 50 percent involvement in each postive core, psa/prostate size equal or less than 0.15.

At age 57 you with a gleason of 3+4 = 7 you are too young to be in an active surveillance program. since your cancer may be progressing you require active treatment especially since you have some longevity and are eating heart healthy and are fit. The NCCN guidelines do not call for AS with Gleason 3+4=7 at your age and life expectency

As you realize some treatments have the potential of major life changing side effects; however there is difference between treatment choices. If your cancer is localized, that is within the prostate you can be eligible for SBRT. SBRT has minimal side effects when compared with other treatment choices.

There is a diagnostic test, tesla 3.0 MRI, which can determine small definitions, that will give an indication of extracapsular extention, that is, if the cancer is outside the capsule,will show size of tumors within the capsule, one lobe or two. This test is superior to the bone scan...the American Urological Association does not recommend a bone scan for those with gleasons under 8.

Additionally Im reading from your post that you would rather die than pursue another treatment where you may suffer a side effect of say, impotenence or urinary problems. Let me tell you even if you would suffer this consequence life goes on. As you become older you will find that it's important to look at the bagel, not the hole....there are many factors to life, service, etc,etc than you can concentrate on.....it's all good.........focus on enjoying each and every moment. On the other hand you may not suffer any consequence from an active treatment, and you can go onwith your life without worrying about PC. Remember those with untreated PC can suffer very severe consequences.

Of course I wish the best for you.

VascodaGama · November 2013

Active or Inactive approach

SS

Thanks for sharing your experience/believes.

I wonder if the choice on Watchful Waiting is only yours or from your GP. The fact is that the diagnoses you narrate, at your age and with PCa in the family, are high and at “dangerous” levels high enough to get concerned. WW is recommended to verify the progression of a cancer case along one’s life time, taking into account peripheral facts such as age or other unrelated illnesses or concerns of treatment side effects (your case) but it got limits in its inaction. I think that the time for “judgement” has been reached and that you should get assurances that you are not dealing with an aggressive form of PCa. I meant to say that you better “relax” only after been assured of the veracity of your initial diagnosis. Gs7 and a PSA of 17 are for intermediate risk of metastases and that leads patients to get second opinions (on the initial test results) and to advance with additional testing before continuing the WW.

Active Surveillance (AS) as commented by Hopeful above and to which you refer as your choice is different of WW to the extent of their protocols. Practically AS is “active” whether WW is “inactive” (to a certain extent). Surely the choice is yours and no one should interfere with your wishes but you can at least get a second opinion of your diagnosis for peace of mind.
You could send the biopsy slides to JH for a second look by a PCa proficient pathologist and try getting a better image study as that recommended by Hopeful. I would add a recommendation to test the levels of Testosterone and get a DEXA scan and ECG now to serve you in your future treatment if any.

The only good thing you posted is that of a PSADT of 24 months. I like your sentiment for being “an animal lover”.

I would recommend you to read this link for a more in-depth knowledge on prostate cancer;
http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

Best wishes in your journey.

Welcome to the board.

VGama

Sshmalan · November 2013

hopeful and optimistic said:
Active Surveillance?
As a man who has been on AS for the last four and one half years I have studied this treatement decision extensively, as you may have as well.

First the criteria for low risk patients that Johns Hopkins uses for AS is PSA under 10, gleason 3=3=6,less than 50 percent involvement in each postive core, psa/prostate size equal or less than 0.15.

At age 57 you with a gleason of 3+4 = 7 you are too young to be in an active surveillance program. since your cancer may be progressing you require active treatment especially since you have some longevity and are eating heart healthy and are fit. The NCCN guidelines do not call for AS with Gleason 3+4=7 at your age and life expectency

As you realize some treatments have the potential of major life changing side effects; however there is difference between treatment choices. If your cancer is localized, that is within the prostate you can be eligible for SBRT. SBRT has minimal side effects when compared with other treatment choices.

There is a diagnostic test, tesla 3.0 MRI, which can determine small definitions, that will give an indication of extracapsular extention, that is, if the cancer is outside the capsule,will show size of tumors within the capsule, one lobe or two. This test is superior to the bone scan...the American Urological Association does not recommend a bone scan for those with gleasons under 8.

Additionally Im reading from your post that you would rather die than pursue another treatment where you may suffer a side effect of say, impotenence or urinary problems. Let me tell you even if you would suffer this consequence life goes on. As you become older you will find that it's important to look at the bagel, not the hole....there are many factors to life, service, etc,etc than you can concentrate on.....it's all good.........focus on enjoying each and every moment. On the other hand you may not suffer any consequence from an active treatment, and you can go onwith your life without worrying about PC. Remember those with untreated PC can suffer very severe consequences.

Of course I wish the best for you.

Thank you.

Thank you for this valuable information. I will certainly be considering what you've shared here.

Sshmalan · November 2013

VascodaGama said:
Active or Inactive approach
SS

Thanks for sharing your experience/believes.

I wonder if the choice on Watchful Waiting is only yours or from your GP. The fact is that the diagnoses you narrate, at your age and with PCa in the family, are high and at “dangerous” levels high enough to get concerned. WW is recommended to verify the progression of a cancer case along one’s life time, taking into account peripheral facts such as age or other unrelated illnesses or concerns of treatment side effects (your case) but it got limits in its inaction. I think that the time for “judgement” has been reached and that you should get assurances that you are not dealing with an aggressive form of PCa. I meant to say that you better “relax” only after been assured of the veracity of your initial diagnosis. Gs7 and a PSA of 17 are for intermediate risk of metastases and that leads patients to get second opinions (on the initial test results) and to advance with additional testing before continuing the WW.

Active Surveillance (AS) as commented by Hopeful above and to which you refer as your choice is different of WW to the extent of their protocols. Practically AS is “active” whether WW is “inactive” (to a certain extent). Surely the choice is yours and no one should interfere with your wishes but you can at least get a second opinion of your diagnosis for peace of mind.
You could send the biopsy slides to JH for a second look by a PCa proficient pathologist and try getting a better image study as that recommended by Hopeful. I would add a recommendation to test the levels of Testosterone and get a DEXA scan and ECG now to serve you in your future treatment if any.

The only good thing you posted is that of a PSADT of 24 months. I like your sentiment for being “an animal lover”.

I would recommend you to read this link for a more in-depth knowledge on prostate cancer;
http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

Best wishes in your journey.

Welcome to the board.

VGama

Thank you.

Thank you VGama for the good information and ideas.

Watchful Waiting

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