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PSA Anxiety

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Pelahatchie
Regular Member
Joined : Jul 2007
Posts : 86
Posted 7/5/2007 10:26 AM (GMT -8)
I will have my second anniversary for Da Vinci surgery in Septmeber.  From a side affect standpoint I couldn''t be happier with the results.  I have had absoulutely no issues to date.  However, the most important factor is cancer control and this is where I am struggling with my results. 

My pathology report showed Gleason 3+3 and was classified T2a with 15% involvement in one gland.  There was no definite capsular penetration but the pathologist made a note that is was close and needed to be watched.  My doctor told me it was probably close in that area due to the surgical procedure where he may have nicked the capsule.  Anyway the report was disappointing at the time and continues to be a concern.

My first post surgery PSA was .04, my doctor delclares it undetectable at < .04 so I retook the test at four months post op and was indeed undetectable.  I have basically been tested every three months since surgery and have bounced between undetectable and .04 with the exception of my latest test which came back at .05.

I was curious if anyone else has dealt with this type situation over an extended number of years and whether you are still under the recurrance standard of .2.  I have also read that the biggest downside to the Da Vinci method is that it leaves more prostate tissue intact than the open method and in some cases you don't achieve some of the super low psa levels you see with the open method but  that this is not neccessarily a precursor to cancers return.  This may be wishful thinking on my part but I am interested to hear others opinions and experiences.

I also feel that if I see another rise that I will probably go ahead and do salvage radiation and not wait to see if it goes to .2 and how long it takes to get there.  I would be interested in your thoughts on this strategy as well.

Thanks

 

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spinbiscuit
Veteran Member
Joined : Apr 2006
Posts : 818
Posted 7/5/2007 10:56 AM (GMT -8)

Hello Pelahatchie,

Welcome to the group. I also had the DaVinci procedure, and my 18 month follow-up PSA test will be in August. Just like you I worry the day of the test about the numbers, but it would be a shame to live in constant fear. So don't act too fast, and jump the gun you may want to consider a second opinion. If it makes you feel better you can research who might be the best doctor to contact ahead of time to get all your ducks in a row, and if that helps you to sleep nights; Great. Till then enjoy life as it comes because everyday is a gift.

Best of luck to you,

Glen 

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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 7/5/2007 10:58 AM (GMT -8)
I am only 5 months post-op. I can only say that the male body has other ways of producing PSA. Adrenal PSA production is in the range of your ultra sensitive PSA score. This is why the less than 0.1 is gererally considered undetectable as opposed to adopting the standard PSA Assay tests to the ultrasensitive tests. But I am no doctor. That is just what I have read. At such a small climb of .01 it may be concerning but it may be nothing if I understand the science correctly. Hydration, diet, and excercise, and an active adrenal gland can affect a PSA in micro ammounts and you just might of had a .01 day? Your scores are holding low and I am certain you are anxious to take that next PSA test. Perhaps ask for another if you are a bit too nervous about the .01 climb. There is no rule that says you can't ask for another test. Hope it stays low for you...

Tony
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aus
Regular Member
Joined : Sep 2006
Posts : 211
Posted 7/5/2007 2:53 PM (GMT -8)
I just read an interview with Dr E Klein on the "prostatecancerupdate" site, which deals with various subjects including Dr Klein's approach for rising PSA / doubling time post surgery, and whether the doubling time is under 3 months or under 12 months (as opposed to longer doubling time which give less cause for concern).

While the interview isn't exhaustive on this aspect he gives his views on some other considerations.

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AEG
Regular Member
Joined : Nov 2005
Posts : 154
Posted 7/5/2007 5:44 PM (GMT -8)
Hi Pelahatchie, I recently asked a question about fluctuating psa values post surgery, here are the links: https://www.healingwell.com/community/default.aspx?f=35&m=829070 https://www.healingwell.com/community/default.aspx?f=35&m=796777 Best of luck to you. AEG Post edited to activate direct links... :) Post Edited By Moderator (bluebird) : 7/7/2007 5:58:17 PM (GMT-6)
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Pelahatchie
Regular Member
Joined : Jul 2007
Posts : 86
Posted 7/5/2007 6:21 PM (GMT -8)

Thank you all for your responses.  I was 45 when diagnosed, I have a twelve year old daughter and a five year old son.  My primary focus is sticking around long enough to get them through college.

A year after my diagnosis my dad 75 went back to the doctor and told him to check him out thoroughly since I had my trouble and two of my dads brothers had been diagnosed about seven to ten years ago.  His PSA was normal for his age and had always been normal.  They did a biopsy and found cancer in all needle specimens, Gleason 7.  They were convinced that at a miminum he certainly had advanced prostate cancer.  He immediately started hormone therapy and then underwent six weeks of external beam radiation followed up by seeds.  His PSA has been below .1 for over one year now and things look pretty good, we are very thankful.  His bothers have also fared well.  One had seed therapy and has been undetectable for five years and just celebrated his 79th and the other opted for hormone therapy only and has been on that for over 10 years and is now 88 years old.

I really appreciate the encouragement I have seen people extending to one another on this site and I wish I had found it much earlier.  I wish all of you success in battling this disease, it is a battle that can be won.

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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 7/7/2007 10:08 AM (GMT -8)
This helped me with the anxiety.   Excerpt: PSA Anxiety…   The Downside of Ultra-Sensitive Tests             You’ve had the radical prostatectomy, but deep down, you’re terrified that it didn’t work.   So here you are, a grown man, living in fear of a simple blood test, scared to death that the PSA—an enzyme made only by prostate cells, but all of your prostate cells are supposed to be gone—will come back.   Six months ago, the number was 0.01.   This time, it was 0.02. You have PSA anxiety.   You are not alone This is the bane of the hypersensitive PSA test:   Sometimes, there is such a thing as too much information.   Daniel W. Chan, Ph.D., is professor of pathology, oncology, urology, and radiology, and director of Clinical Chemistry at Johns Hopkins.   He is also an internationally recognized authority on biochemical tumor markers such as PSA, and on immunoassay tests such as the PSA test.   This is some of what he has to say on the subject of PSA anxiety:   The only thing that really matters, he says, is, “At what PSA levels does the concentration indicate that the patient has had a recurrence of cancer?”   For Chan, and the scientists and physicians at Hopkins, the number to take seriously is 0.2 nanogram/milliliter.   ( 20 pennies my italics )    “That’s something we call biochemical recurrence.   But even this doesn’t mean that a man has symptoms yet.   People need to understand that it might take months or even years before there is any clinical, physical evidence.”               On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0.1, or slightly less that that.   “You cannot reliably detect such a small amount as 0.01,” he explains.   “From day to day, the results could vary—it could be 0.03, or maybe even 0.05”—and these “analytical” variations may not mean a thing.   “It’s important that we don’t assume anything or take action on a very low level of PSA.   In routine practice, because of these analytical variations from day to day, if it’s less than 0.1, we assume it’s the same as nondetectable, or zero.” Check this discusion link on this forum https://www.healingwell.com/community/default.aspx?f=35&m=796777  
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 7/7/2007 3:42 PM (GMT -8)
    * Excerpt: PSA Anxiety…   The Downside of Ultra-Sensitive Tests   “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer”…(Give Yourself a Second Opinion) 2001 Patrick C. Walsh, M.D. Professor of Urology, The Johns Hopkins Medical Institutions and Janet Farrar Worthington     Hi ~ Pontiac!! You made our hearts smile with your comment above... You are always close in thoughts and prayers... (our 3bies... Pontiac, Birdland, & Shepla) Hugs from Lee & Buddy    
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 7/7/2007 4:30 PM (GMT -8)
Hi ~ Pelahatchie & Loved Ones,   Caring Enough to Share…..         A    “Special”   Warm Welcome   to   You!         This is truly a great forum!!! ~ “You” have joined! You are now part of our forum family ~ a group of wonderful individuals who are so willing to share their journey .   Thank you for joining all of us on this road to HealingWell …..   KNOWLEDGE IS POWER... and POWER conquers fear   Thank you for sharing more of yourself with us!!!   Having a young family definitely adds to the pressures of making the right decisions.   In this forum ~ you will come to realize that “Your Decision” is and was the right decision for you.     We all continue to move forward and we deal with what needs to be dealt with when the need arises.   There are so many journeys here… and we “all” continue to learn from them.   The most important part of   “the Journey” ~ is having friends who have walked the same path.   Some have had extra stepping-stones placed before them and they continue to let us walk with them…. Teaching us so much!!! This truly is a powerful place to be and you’ve just added to the “Power” with your sharing.    It is truly a wonderful gift and we accept it with open arms.   I know your concerns are close to the surface ~ but we all realize how important it is to pull from the “positives”.   Looking at your dad and uncle are definitely at the top!!!   And seeing where you are… right now!!!!   The ultimate “goal”… we all strive for… It is very important to “all ”of us!   This is a way of positive feedback… A way of showing others Hope… and a way of Sharing.    J   Caring is Sharing ~   Thank You for Sharing   J   Our gift back to you is something that we all work toward ~   PSA’s…    !!! ~~~ >>>   Woo ~ Hoo   <<< ~~~ !!! Undetectable   Cause   for    celebration!!!!!   Definitely!!!       What a wonderful day it is ~ each and every-day ….     Enjoy it to the fullest.   Yippeeeee!!!!!! From   Lee & Buddy     Keeping you Extra Close in our thoughts and prayers. In New…Friendship ~ Lee & Buddy   “God Bless You”  It's a little prayer   ~   "God Bless You"   ...but it means so much each day, It means may angels guard you and guide you on your   way   (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)  
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 7/7/2007 4:32 PM (GMT -8)
Mark your calendar because we will be right here ~ in September... as we continue to walk with you!!   Stay close... Hugs from Lee & Buddy Post edited to delete signature line only Post Edited (bluebird) : 7/12/2007 7:40:40 PM (GMT-6)
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Pelahatchie
Regular Member
Joined : Jul 2007
Posts : 86
Posted 7/9/2007 12:52 PM (GMT -8)
Well the anxiety just got heightened.  I went to my G.P. for my annual physical on Friday and asked him to go ahead and do a PSA.  It came back .07, as you may remember my urologist had it at .05 one week earlier.  Oh boy!

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myman
Veteran Member
Joined : Feb 2007
Posts : 1219
Posted 7/9/2007 1:20 PM (GMT -8)
Remember it's best to get your PSA's done with the same lab...it can vary if done at different locations. Just a thought.

All the best to you,
Susan
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AEG
Regular Member
Joined : Nov 2005
Posts : 154
Posted 7/9/2007 3:09 PM (GMT -8)
Hi Pelahatchie,

I agree with myman that it's best to get your PSA's done with the same lab. Can you call your urologist and ask him to re-run the psa at his lab? Also, explain to him that you're having some anxiety over this and ask him for his input.

Keep us posted.

AEG
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Jeff 11
Regular Member
Joined : Jun 2006
Posts : 24
Posted 7/9/2007 4:25 PM (GMT -8)
Hi Pelahatchie I had robotic 6/06 at Henry Ford my PSA has been at 0.03 & 0.04. Henry Ford told me not to use the ultrasensitive PSA. They did say it is not uncommon for PSA to jump around a little & it is important to use the same lab. There are different thoughts of what to do if the PSA comes back so do your homework. Good Luck   :)  Post not edited ~ only the bottom white space that was empty!!!   Make sure cursor is at the end of the last word in your message box, hit delete button until it stops then submit.   Post Edited By Moderator (bluebird) : 7/9/2007 8:53:50 PM (GMT-6)
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Pelahatchie
Regular Member
Joined : Jul 2007
Posts : 86
Posted 7/10/2007 6:12 AM (GMT -8)

I know we all look forward to a better test.  Hopefully, the EPAC-2 being developed by Hopkins can give us the answers we need to make the critical decisions in the most timely manner.  I emailed Hopkins yesterday and they indicated the test should be available in 08.  I have another PSA test scheduled for the end of July with my urologist, I guess we will go from there.  Thanks for the feedback.

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Dinazad
New Member
Joined : Jul 2007
Posts : 5
Posted 7/12/2007 4:26 PM (GMT -8)
Hello... I am a new member. Last May, my husband, 48, had Da Vinci surgery. The cancer was T3a and with Gleason 3+ 4 =7; there was capsular penetration. The doctor said the penetration was insignificant. One month after surgery, my husband's PSA was 0.04. He is due for another PSA testing in October this year. Right now, things are back to near normal. My husband seems to have forgotten about his cancer. I do get worried much more than him about the scores; about probabilities. I do want to know more about capsular penetration. Can you please help me?
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 7/12/2007 5:38 PM (GMT -8)
Hi ~ dinazad, Thank you for reaching out to all of us!!!   Welcome…. New Friend…  At any time ~ please don’t hesitate to start your own “personal thread”… this can help when you just need to talk, vent, or just be HUGGED!!!   And we would like to send a Special Welcome to you there!!   The link in purple will give you information about Perineural invasion (capsular penetration) I hope will ease your mind…   Reminder … click on the REFRESH icon once you get there) Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :) Perineural invasion?   We will keep you in our thoughts and prayers as you continue to move forward in your journey. Stay close and keep posting!!!   In Friendship ~ Lee & Buddy
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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 7/12/2007 5:48 PM (GMT -8)
Hey ~ Pelahatchie,   Stay close     .... don’t let the dark clouds over take you.   We are sending this special rainbow to help you on the days that seem extra long…   *This is your very own Rainbow and it’s sprinkled with Sunshine* * ////////////////////// /////////////////// * ///////// /////////////// /////////////////////////// * ////////// ////////////////////// * ///// ///// //////////////////////// ///////////////////// ///////////// ///////// /////////// * ////////// ///////////// ////////// * ////////// ** * ** * ** * ** * ** * ** * ** * **    Keeping you extra close during this time. In Friendship ~ Lee & Buddy
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Pelahatchie
Regular Member
Joined : Jul 2007
Posts : 86
Posted 7/31/2007 1:42 PM (GMT -8)
Just an update, I got my follow up results today from my urologist and it was again undetectable at <.04.  It earned me a return trip to him in three months.  I am very thankful for the results and I appreciate all your comments.

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pcdave
Regular Member
Joined : Oct 2006
Posts : 444
Posted 8/1/2007 7:55 PM (GMT -8)
Dear Pelahatchie

We can all empathize with you because we all have been issued a life-time sentence of PSA tests and none of us know what will happen on the next test. Try to live life to the fullest each day and not dwell on what the future may bring. Just make sure that you are using the same lab each time for consistency in your PSA readings. Best of luck in keeping those PSA readings low!

Dave
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