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A trip to my new urologist and I can't believe what I was told

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Posted 4/19/2008 12:12 AM (GMT 0)
I had Proton/Photon radiation therapy at Loma Linda April May and June of 2007.  I also had 5 months of Lupron before and during the treatment.  44 treatments in all.  My pre-treatment PSA was 15.6, gleason 3x4=7, stage T1C.  Two cores positive out of 12 @ 30%.  I had my first post treatment PSA in September 3 months after last Hormone shot (1 month shot)  Still feeling effects of Lupron, hot flashes, etc.  PSA came back 0.1.  Urologist said great, next PSA in 6 months.  Just took the test and had my appointment today.  The Urologist said PSA now 0.3.  He said I need to go back on Lupron right away because the cancer is probably active due to doubling time estimates.  I am devistated.  This seems contrary to everything I have read regarding post radiation PSA readings.  I could sure use some advise here.  Maybe PC Dave and some of you guys can provide some input.  Regards to all, FredLp
Posted 4/19/2008 1:13 AM (GMT 0)
Even though the PSA is still relatively low the doubling time would be a concern. From my limited experience I find it odd that you were only on Lupron for 5 months. Most men that I have contacted stay on it for a minimum of two years. Go back on the Lupron like the doctor says, and try hard to stay mentally, emotionally, and spiritually strong. I believe you will find the results to be better than you may expect right now. Thanks for sharing with us and may God's peace be with you.
Posted 4/19/2008 3:22 AM (GMT 0)

Fred:

I'm so sorry to hear that you are going thru a rough time right now.  I don't know much about HT, so can't answer to your first PSA result.  Hope that Tony (TCVegas) will see your post tomorrow and be able to give you some insight - he has alot of very valuable knowledge.  Please try to stay positive and know that we are here for you. 

Dutch

Posted 4/19/2008 4:20 AM (GMT 0)
Fred

I don't think your urologist is correct that the cancer is active, but I am not a doctor. There has been no real doubling. Your 1st PSA was obviously suppressed by the HT. The 0.3 that you are getting now is your true PSA. If I were you I would contact Loma Linda and have them discuss this with your urologist. I would do this ASAP so you do not have to undergo another Lupron shot and wait 6 months for the effects to wear off.
Posted 4/19/2008 1:41 PM (GMT 0)
Jayadub - I agree with your assessment. I was having hot flashes from the 5 months of Lupron until Nov/Dec. The PSA in September must have reflected some supression from the drug. I contacted Loma Linda yesterday and they will get back to me next week. Thanks for your support. Those of you who have responded, thanks much, Fred
Posted 4/19/2008 3:39 PM (GMT 0)
Fred,
I have always understood that you need more than one test to rise consecutively before reacting to the rise. Especially when radiation was the primary treatment. PSA bounce is a natural occurance for radiation patients. AND I was surprised that you acheived an undetectable PSA so soon after proton therapy. I agree with Jayadub, that was not an accurate reading because of the HT. I don't like a treatment plan involving HT with radiation. I know there are studies that show by shriking the cancer the radiation can be made more effective, but none of those studies talk about the fluctuations after treatment and after HT. That sets up a nerve racking time when you see fluctuation. You need a second opinion before using HT again. Loma Linda has greater experience when using this treatment plan. I believe you will be instructed to watch for a while. Get more tests to show a trend instead of a single rise. Good luck. Take is easy, this just may be part of the treatment plan and not bad news.

Tony
Posted 4/19/2008 3:52 PM (GMT 0)
TC- Las Vegas - Thanks for your input. That's exactly what I felt. It's very hard when you are talking to a medical professional and totally disagree with what he is telling you. One thing I have learned here is to be your own advocate and take charge of your own circumstances. Thanks again, Fredlp
Posted 4/21/2008 1:46 AM (GMT 0)

Fred,

Sorry to hear what is happening here! I had post operative radiation treatment last year June and July (34 total) at The Center for Radiation Therapy (malignant neoplasm of prostate (active)). I was treated with a brand new concept 3 dimensional 3mm colimeter beam. No hormone treatment at all. My PSA since (after 3 tests so far) is zero. No side effects at all. If you wish - I put you in touch with Dr.Christopher Rose (who by the way) is the nicest, most humble and knowlegeable Oncologist you'll ever know. Otherwise call 310-205-5777.

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