Prostatectomy and salvage radiation--before the age of 45.
Thursday, June 4, 2009
Less than 0.1
I couldn't wait any longer, so I called for my PSA results. Once again, less than 0.1!
2 comments:
Anonymous
said...
Hello - I was 57 when cancer was diagnosed in 2002. I had RP at Sloan-Kettering in May 2002. Gleason was 7 and pathology showed spread to a seminal vesicle but negative margins, lymph nodes. Pre-surgery PSA was 9.86. It dropped below 0.1 after RP and stayed well below 0.1 for about five years, not rising above 0.2 until spring of 2008. By Sept 4 2008 it was 0.5 and I began salvage radiation at Sloan-Kettering about a month later. Total dose was 7200 cGy. This ended in early Dec 2008. PSA was 0.381 on March 3 2009 and 0.33 on May 18 2009 -- the most recent test. It's disappointing that the level is still above 0.1. Your blog is one of the few sources of useful explanation on what to expect after salvage radiation. What's still unclear is how likely it is that I might still achieve non-detectable levels, and whether any level above 0.1 means that PSA is certain to resume rising. I understand that no one has a crystal ball and I must simply wait and see. However, it might help to have more examples of actual or possible outcomes. I assume that the one-year period for the full effects of radiation is measured from the end of treatment, not the start. Thanks again.
Thanks for your kind words about my blog. I've been thinking about taking it down sometime next year, because if my PSA stays where it is, I will probably lose interest in properly maintaining it, and if it is obsolete it might be harmful. There are sites out there will outdated information about prostate cancer--sites that were once very helpful. The Phoenix5 site comes to mind. It was last updated in April 2003. The information it contains on salvage radiation (SRT) is way behind the times. However, if this blog is helpful, maybe I should keep it going a while longer. I should also present a condensed version of what I know (as a layperson) about SRT on one page in bullet format.
I wish I had that crystal ball for you. You're still heading in the right direction. If you were having the same test as me (the non-ultrasensitive PSA) I guess your scores would have been 0.4 in March and 0.3 in May. Hopefully the trend will continue. If it does you will be well below 0.1 by one year from the end of radiation (I believe that is the time mark Stephenson and others use). But everything is a rough guess in SRT, so I wouldn't sweat it if you run a little over the mark. I believe that the mean (average) time to undetectable PSA after salvage is 12 months, but it can take longer.
The anxiety that comes from all this ambiguity is one of the worst things about a recurrence. But the flip side is that you have reason to be optimistic.
I wish I knew of more anecdotal cases. I do look for them, for example, reading the signature files on the prostate board on HealingWell.com.
Even though salvage radiation for prostate cancer is fairly common, it's not nearly common enough to generate a lot of personal accounts on the web. Only about 1/3 of prostatectomy patients see their PSA rise, and not all of them get SRT. Then there's the fact that a lot of men who have SRT are my father's generation, which is not as prolific in terms of web writing.
I'm a moderator on the prostate cancer section of CancerForums.net ( http://www.cancerforums.net/forum-5.html ) and would like to invite you to join the gang there and tell your story.
2 comments:
Hello - I was 57 when cancer was diagnosed in 2002. I had RP at Sloan-Kettering in May 2002. Gleason was 7 and pathology showed spread to a seminal vesicle but negative margins, lymph nodes. Pre-surgery PSA was 9.86. It dropped below 0.1 after RP and stayed well below 0.1 for about five years, not rising above 0.2 until spring of 2008. By Sept 4 2008 it was 0.5 and I began salvage radiation at Sloan-Kettering about a month later. Total dose was 7200 cGy. This ended in early Dec 2008. PSA was 0.381 on March 3 2009 and 0.33 on May 18 2009 -- the most recent test. It's disappointing that the level is still above 0.1. Your blog is one of the few sources of useful explanation on what to expect after salvage radiation. What's still unclear is how likely it is that I might still achieve non-detectable levels, and whether any level above 0.1 means that PSA is certain to resume rising. I understand that no one has a crystal ball and I must simply wait and see. However, it might help to have more examples of actual or possible outcomes. I assume that the one-year period for the full effects of radiation is measured from the end of treatment, not the start. Thanks again.
Thanks for your kind words about my blog. I've been thinking about taking it down sometime next year, because if my PSA stays where it is, I will probably lose interest in properly maintaining it, and if it is obsolete it might be harmful. There are sites out there will outdated information about prostate cancer--sites that were once very helpful. The Phoenix5 site comes to mind. It was last updated in April 2003. The information it contains on salvage radiation (SRT) is way behind the times.
However, if this blog is helpful, maybe I should keep it going a while longer. I should also present a condensed version of what I know (as a layperson) about SRT on one page in bullet format.
I wish I had that crystal ball for you. You're still heading in the right direction. If you were having the same test as me (the non-ultrasensitive PSA) I guess your scores would have been 0.4 in March and 0.3 in May. Hopefully the trend will continue. If it does you will be well below 0.1 by one year from the end of radiation (I believe that is the time mark Stephenson and others use).
But everything is a rough guess in SRT, so I wouldn't sweat it if you run a little over the mark. I believe that the mean (average) time to undetectable PSA after salvage is 12 months, but it can take longer.
The anxiety that comes from all this ambiguity is one of the worst things about a recurrence. But the flip side is that you have reason to be optimistic.
I wish I knew of more anecdotal cases. I do look for them, for example, reading the signature files on the prostate board on HealingWell.com.
Even though salvage radiation for prostate cancer is fairly common, it's not nearly common enough to generate a lot of personal accounts on the web. Only about 1/3 of prostatectomy patients see their PSA rise, and not all of them get SRT. Then there's the fact that a lot of men who have SRT are my father's generation, which is not as prolific in terms of web writing.
I'm a moderator on the prostate cancer section of CancerForums.net ( http://www.cancerforums.net/forum-5.html ) and would like to invite you to join the gang there and tell your story.
Best wishes.
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