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,
Post Edited (spinbiscuit) : 7/5/2007 1:02:53 PM (GMT-6)
Post edited to activate direct links... :)
Post Edited By Moderator (bluebird) : 7/7/2007 5:58:17 PM (GMT-6)
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.
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
*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
Caring Enough to Share…..
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.
“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!! :)
J We invite you to visit our personal thread: Click Here: “Our Journey” ~ Sharing is Caring
Post Edited (bluebird) : 7/12/2007 7:40:40 PM (GMT-6)
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)
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.
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…
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
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