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So long, 0 club, it's been nice being a member.

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Prostate Cancer
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Posted 2/23/2010 5:56 AM (GMT 0)
Well, I enjoyed being in the 0 club for nearly 2 years... guess I have to leave.
Had a visit with my doc (surgeon / urologist) to go over the 0.2 reading. She says that because I have been undetectable for as long as I have, that this puts me in a lower risk category. However, the 0.2 most likely means that the cancer is back, and that we don't really know where it is. We will watch the PSA more closely now (she figured 2 month intervals). I asked if it would be OK to monitor it at 1-month intervals at least for a few months - she said that she would put in a standing order for tests monthly. I also requested the more sensitive 2-decimal assay, and she readily agreed to that as well. She says that she would not be eager to start radiation, but that would be the next step, if it rises (we did not discuss when / how much it would need to rise). I'm watching a few of you guys that are going through the SRT now, to see how it goes - side effects, etc. hoping I don't need to follow you.

I have done some research, it appears that the risk of metastasis is tied to PSA doubling time. Less than 3 months seems to be a real concern. I'll be breathing easier after a few months' worth of PSA readings that don't rise.

Better yet, if it goes back down...

Any comments or relevant experiences are welcomed.

Jeff
Posted 2/23/2010 6:19 AM (GMT 0)
Hi Jeff,

I'm sorry to hear that your PSA seams to be on the rise. I know how devastating this news is because I went thru the same scenario few month ago. However, In my case we (Onc, Uro  and myself) decided to attack the beast more aggressively when my PSA reached 0.1. It is my understanding that attacking the cancer early gives the best chance of a positive outcome. I think that you are wise to closely monitor your PSA level very closely so that it won't get to far into the higher numbers.

I'm wishing you all the best and a successful conclusion to your journey.

Magaboo

Posted 2/23/2010 6:48 AM (GMT 0)
Sorry to hear the News Jeff, but I really do think you have got it early and lets hope for a positive outcome.  We hate losing members from the Zero club, so whats say I put a

"RESERVED" sign on your bar stool at the club......................Cheers Kev

Posted 2/23/2010 8:19 AM (GMT 0)
Jeff,

Sorry to hear about your PSA rise...   As you can see,  I had a similar issue.   I would always insist on the more accurate PSA test with the extra decimals...     a 0.2 could well be  0.16 -> 0.24...  a 0.1 could be 0.06 -> 0.14...   pretty hard to track the small rises rises and doubling times with the less precise tests.

BCR (bio chemical reccurrence) after surgery is defined in the literature at a PSA of 0.2 or 0.4, depending on the rpaper/study.  Another metric being used as an indicator for possible SRT is to see a 3 time consecutive rise in the PSA.   That is what happened to me.  My uro suggested SRT at this time even though I was only at 0.13.  The oncologist agreed.  I am also one that tends to want to attack possibility of BCR PCa the sooner the better, so I opted for SRT after more research the next couple of months.

Some of the literature suggests that early SRT (especially before it gets to 0.5) can prove to be beneficial in certain cases where the pesky PCa cells are likely to still be localized in the original prostate bed.  Characteristics supporting this are slight positive margins and a non-detectable PSA initially after the RP.  Then followed by small but steady rises in the PSA.  My post op patholgy and rising PSA seemd to fit those charateristics, so I started 32 seesions of IMRT  SRT for a 64 gys total dosage.   I am today at 18 sessionscompleted with 14 to go...   No side effects yet except for a little fatique/drowsiness.

Anyway,   google and poke around for more info...   as well as reading the posts on this forum.   And once again,  sorry to hear that you may have to leave the zero club for awhile...   I had to...   I pray that we can all be in the zero club and stay there!!!

pasayten

Posted 2/23/2010 8:46 AM (GMT 0)
Here are some links about the issue that I found and followed...

http://www.medicalnewstoday.com/articles/40185.php

http://www.ncbi.nlm.nih.gov/pubmed/16145393

http://www.ncbi.nlm.nih.gov/pubmed/15026399

http://www.ncbi.nlm.nih.gov/pubmed/18560003

pasayten

 

Posted 2/23/2010 12:23 PM (GMT 0)
Jeff i 'm sorry you had to leave the zero club unfornately i was never in it do all the readingyou can to help you make the descion on what you need to do. We are here behind you and here to support what ever you decide. go to the web sites and read
Thoughs are with you
Deerhunter
Posted 2/23/2010 1:19 PM (GMT 0)
Jeff,

Bummer--I am so thankful that you aware of what's going on and informed so you can make the best decision.  Keep us posted.

Rest well,

CareBear

Posted 2/23/2010 2:02 PM (GMT 0)
Sorry to here about the psa, sounds like you and your Doc are on top of things.

Best wishes,

Neal

Posted 2/23/2010 2:08 PM (GMT 0)
Jeff,

Sorry to hear the news but hopefully you caught it quickly or perhaps it will go back down. As you can see I was in the zero club less than 3 months so your stats are more positive than mine. The radiation is not so bad but I had some pre-existing conditions which have made it slightly uncomfortable. But shoot I still exercise, just have to stay close to a restroom and I am in bed by 9;30 each night. 13 more to go out of 39. Take care.

Michael

Posted 2/23/2010 2:34 PM (GMT 0)
Hi Jeff,
Sorry to hear about the rising PSA. As some of the members will agree, SRT started sooner will sometimes provide optimum results when the tumor burden is low as in my case. I had 37 treatments of IMRT with little side effects.
Posted 2/23/2010 2:41 PM (GMT 0)
Jeff, sorry for the news. I only lasted in the zero club for my very first post surgery PSA reading, been out of it ever since. I do think having the back to back reading's your doctor suggested is a good idea. You are already at a higher rate then any of my doctors would have been comfortable. If you have recurrance, and on the surface it appears you do, then the earlier you do the salvage radiation begins, the better the chance it has of being effective. But that is between you and your doctor of course.

David in SC
Posted 2/23/2010 5:04 PM (GMT 0)
Thanks for your posts, guys (and gals). It helps to know what others are going through. One of the things that I haven't researched enough, and I forgot to ask my doc about - I suspect that with negative margins, like I had, and lymphatic invasion (within the prostate), the most likely place for cancer to be developing would not be in the prostate bed, but in the nearest lymph nodes (at least that is what my reasoning tells me). If that is the case, how close are they, and how likely is SRT to be able to kill that off? Is SRT only likely to be successful if the cells of concern are near the prostate location?

I am reluctant to dive into radiation because I have colitis, which at present is pretty well under control, but I suspect it might flare up with the SRT. However, I'll probably do it anyway if the PSA rises much more, and it gives me the best chance at a cure.

Thanks also, pasayten, for the links.
Posted 2/23/2010 5:21 PM (GMT 0)
Jeff, let's pray that it's a fluke and will go back down with retesting.
Posted 2/23/2010 7:24 PM (GMT 0)
Jeff: That really sucks, my hart sank when I read you post. I just hate this PC. Hope it is a fulke but it not on to the next step. I will pray for you as I do for so many of my PC friends here on HW.

Another Jeff
Jeff T
Cajun Country
Posted 2/23/2010 8:10 PM (GMT 0)
Praying for you Jeff. Sounds like you have a good doctor and caught this early so you can begin salavge quickly.
Posted 2/23/2010 10:32 PM (GMT 0)
Hi Jeff it hurt when psa star to go up let pray it is a fluck in the reading.
Posted 3/3/2010 11:28 PM (GMT 0)
Got my March 1 reading today, PSA is 0.17 (from now on I will have the 2-decimal readings).
I don't get back in the zero club, but at least it's not rising.
I'm breathing a little easier until next month. No planned action for now.
Jeff
Posted 3/3/2010 11:48 PM (GMT 0)
Nice to hear there is no increase this time!!  Hope this trend continues!!

Skeener

 

Posted 3/4/2010 12:29 AM (GMT 0)
Thanks for the report Jeff. Glad to see that it did not go up again.

Cajun Jeff
Posted 3/4/2010 1:16 AM (GMT 0)
Good to hear that Jeff and hope that trend continues for you. Thanks for updating us and keeping us posted.
Michael
Posted 3/4/2010 11:32 AM (GMT 0)
Jeff,
Thanks for the follow up. Only labs without second decimal place capability say it doesn't matter and merely causes needless PSA anxiety. As if the difference between 0.1 and 0.2 didn't give you (and most of the guys here) anxiety.
You made the right decision to go somewhere where they have the necessary resolution. You are now far better informed than before. Congratulations.

Jeff, too (the Leaking one.)
Posted 3/4/2010 12:21 PM (GMT 0)
Jeff, good news indeed. PSA does go down - see my husband's story in my signature.
Posted 3/6/2010 3:25 PM (GMT 0)
Jeff thanks for sharing your journey with us. I too had to leave the club recently due to a slight increase in PSA. I bet with yours taking two years that it will not be to difficult to get it back down. You are correct in the doubling time being the measure. If your psa stays around the .2 mark at your next testing I would doubt that the doctor will do anything other than keep watching. I know this is tough news for you and your family. Stay positive because I firmly believe and healthy attitude is at least half the battle.

peace and love
dale
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