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Active Surveillance - Posting Again

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Posted 7/30/2009 4:55 PM (GMT 0)
I am posting this again so it appears as the first entry. I posted it also as a reply to an old thread so it got buried at the end. I am still new to this.

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Just got the results of my first PSA test since being diagnosed and going on active surveillance. My PSA has actually dropped a little - down to 3.16 from 3.48 back in January. So I am continuing on with AS with the next follow up PSA test in 6 months - likely to have a follow up biopsy shortly after this. For anyone considering AS I would like to share my initial experience. The wait time to the first follow up PSA test was very stressfull to me in that I was worried daily that I had made a bad decision and that the next PSA test would prove it so. Now that I have made it to my first milestone the relief is tremendous and I now feel much more confident in my decision. So anyone considering AS should factor in the wait time to that first milestone - it can be very stressfull.

Posted 7/30/2009 5:19 PM (GMT 0)

Hi Optimist,

Happy to read about your latest PSA test result. Congratulations! Hopefully, it will stay low for a long, long time. The stress of waiting for the next test result is a cross that we all have to bare, regardless whether it is while on AS or a more aggressive attack on the cancer.

Stay well and all the best to you in the years to come.

Magaboo

Posted 7/30/2009 5:27 PM (GMT 0)

Good luck to you.

I couldn't do it. Knowing it's not going to go away by itself would bother me too much. And there's the part about that "fine line" between it staying contained in the prostate and getting out.

Posted 7/30/2009 5:54 PM (GMT 0)
Hi Optimist,

Congrats on the PSA test going down slightly since the last test. It sure can cause some anxiety going through the process though. But at least for the time being you are pushing the treatment phase back for awhile. I know that at some point you will need to move forward with treatment, and maybe by that time better treatment protocols will be available.

Not many folks here take this route, so your journey is of interest for all the newly diagnosed men. So very few men actually qualify for AS in the first place and those that do are so very concerned about waiting, end up seeking treatment right away anyhow. Your story would help those folks I believe to slow down and make that important decision only when the time is right.

Good job....keep us posted.
Posted 7/30/2009 8:25 PM (GMT 0)
Dear Optimist:

Thanks for sharing your AS journey with us and congratulations on meeting your first milestone.  I hope you will meet many more including your biopsy in 6 months.  I'm sure there is stress involved, but I can tell you from reading the many posts on this forum that men have plenty of stress even if they have had treatment as they sweat out the regular PSA tests.

Les said earlier in his post that ..."I know at some point you will need to move forward with treatment...".  On a more positive note, that is not necessarily true.  In the ongoing Johns Hopkins AS program, only 30% of the AS patients have found further treatment necessary.  Now, they have only been at this for ten years so the numbers may rise but, the point is that you may NEVER have to have treatment as your cancer may be so slow growing that something else will kill you first.

Anyway, I would have chosen your route if my numbers would have allowed and I think it's a great choice for men who qualify.  Please stay with us and let us know how you progress because we don't have many posters who have chosen this route. It would be great to have someone who could speak knowledgeably and firsthand on the subject and who could advise/support others who may be considering it.

Best of success,

Tudpock

Posted 7/30/2009 9:08 PM (GMT 0)
Optimist
Let me add my support to your decision. You need only scan this site to see that treating prostate cancer can have serious quality of life issues. The current medical literature strongly supports your decision because our modern tests can detect cancer which will never be life threatening. Thanks for being here.
Posted 7/30/2009 9:24 PM (GMT 0)
You don't mention the Gleason score, or number of cores etc. in your signature. I assume your URO has determined it is fairly low grade. If it is higher than a Gleason 6, then probably 3 months would be a better interval.

Meanwhile, enjoy your sex life as often as you can. It's one of those things older guys take for granted, but when it's gone, man do we miss it !
Posted 7/30/2009 10:10 PM (GMT 0)
Optimist, I'm with you in the AS club. It's a decision not everyone can live with. I know I was really upset following my Dx. But after I read about PC & followed the forums here, I made my decision. The potential for loss of quality of life just isn't worth the risk to me at this point in time. If things change, then I'm prepared to make another decision to be rid of this devil. Feel free to contact me any time to discuss further our somewhat unique situations.
Posted 7/31/2009 1:09 AM (GMT 0)
Optimist and Uncle Harley: I too applaud your decisions to go with AS. It's one that I would have taken myself had my numbers been different. There has been a lot of publicity about over-treatment for PCa, and let's hope you join the ranks of those who never need extra treatment.

I hope you both stick around and keep us posted.
Posted 7/31/2009 1:52 AM (GMT 0)
Optimist,

The more I research the more I support AS. Like Tud said there is a lot of new information indicating that this is a very safe approach with minimal risks if you have the right stats and have a good doctor that is following it closely.
PC is the only cancer that is run by surgeons rather than oncologists: I find this really strange. The recommendation to treat every case of PC is someday going to go the way of radical masectamies in Breast Cancer as doctors and patients get more informed.
JT
Posted 7/31/2009 2:43 AM (GMT 0)
If I had been a low grade Gleason 6, with slow to normal psa velocity, I would have loved to have had the chance of AS. My hats off to you men who meet the criteria for AS.
Posted 7/31/2009 3:35 AM (GMT 0)
I also joined the AS club this year after researching every treatment option and meeting with numerous doctors. My numbers were low enough to fall into the AS criteria and I go for my six month PSA in August. Hope my numbers are as good as yours. :-) Hang in there, buddy.
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