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Good News But . . .

Swingshiftworker
Posts: 620
Joined: Mar 2010

Good news!

The E-MRI/MRSI scans that I took on 10/2 at UCSF were negative for cancer anywhere in or near my prostate.

There's a small chance of a "false negative" but (according to my RO) there are no better scans and IMO no point doing a biopsy w/o a specific reason to suspect the recurrence of the cancer. So, there's nothing else that can be done for now except to continue to monitor my PSA and watch for significant increases that may indicate a cancer that the scans missed.

However, I'm still having significant urinary burning/frequency/urgency issues that I didn't have previously. Am getting a urinary analysis screening next week to check for infection and, if there is none, will have to resort to Flowmax and/or other medications to see if they have any effect on these problems.

So, although it's reassuring to have concrete evidence that my CK treatment in Sept 2010 was apparently successful in arresting the cancer, this info does not eliminate the need to continue the quarterly monitoring of my PSA nor does it resolve the other urinary issues that I'm currently experiencing.

Oh well . . .

hopeful and opt...
Posts: 1282
Joined: Apr 2009

So far so good

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Good news is always welcome on this site, I am glad to hear that the treatment is working.
Hang in there

Kurt

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Sure glad to hear your good news!!! Hope the other problems are easier to solve.

David

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

I am very happy for you.
Negative image study fits the prognosis. Micromets could be a "guess" but why not judge the facts as cure?

Lets congratulate and drink for the best.

Salut
VG.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Hey, Vasco:

Thanks to you and others for the congrats!

Although I'm "happy" to have concrete evidence that the cancer is "gone", I remain guarded and only "cautiously optimistic" that I've actually been "cured."

The results of the scans do not mitigate the need to continue to monitor my PSA indefinitely (quarterly for now) and they do not clarify why I'm now experiencing urinary problems that I never had previously.

So, the saga continues . . .

rch
Posts: 78
Joined: Nov 2011

I'm glad the imaging was negative. Just wondering what was your post-void residual? With significant burning, urgency and frequency you ought to have had a urinalysis, perhaps even before the imaging. I strongly believe the modest PSA rise is due to lower tract symptoms. If the urine shows only white cells without any bacteruria, need urethral swab to rule out any occult chlamydial infection ( just an FYI).

Swingshiftworker
Posts: 620
Joined: Mar 2010

Thanks, I'm getting a urinalysis next week to see if that's the problem. Don't think they'll be checking for any STDs. Will have to ask about that.

djs123
Posts: 102
Joined: Jan 2012

I understand you're wary, but hang on to the good news and enjoy it. In the meantime, you'll continue to monitor things as needed and enjoy your life.
best to you

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Swing,

I've had similar symptoms but not as severe as you describe. More like a tickling rather than a burning sensation. It went on about 9 months and my PSA bounced up in what my RO described as a classic bounce but I always countered with..."I think it has something to do with the prostatitis symptoms."

In any event a course of Cipro had no effect and all tests were negative for UTI.

About six weeks ago the symptoms diminished and one I realized I didn't have them any more. My last PSA was a big drop from 2.3 to 1.1 so I remain convinced it had something to do with the condition and wasn't a bounce.

Before the condition PSA had dropped to 0.8 and was continuing to decline then the "bounce" which was coincident with the tickling sensation. It didn't affect urgency. It was just noticable.

We both had CK treatment about the same time and the onset of this and the eventual drop in PSA seem roughly parallel but I haven't read anything about this phenom anywhere else.

Hope your symptoms subside soon.

Best,

K

Swingshiftworker
Posts: 620
Joined: Mar 2010

Thanks for the comparative info, Kongo. It's reassuring to know that you peaked at over 2 and then fell back to 1. Hopefully, that'll happen for me to in the next PSA test.

In the meantime, I'm getting a urinalysis and blood tests in a couple of days to check for possible infections/STDs. Don't think I have any STDs (or infections, for that matter); just being thorough.

I started taking pygeum (an OTC herbal remedy) a week ago, which is supposed to help w/the symptoms I have; kinda like saw palmetto which I've tried before w/no effect.

Frequency and burning have dropped a bit since I started taking pygeum, but urgency is still an issue (when I gotta go, I GOTTA GO!). LOL!!!

My RO has no clue why it's happening; not similar to other cases of his in the past, which is why I think he ok'd the E-MRI/MRSI scans.

Glad he did, since it clearly rules out any latent cancer as well as BPH (volume 30cc which is w/in normal range).

Hopefully, the symptoms will resolve themselves for me as they did for you.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Swing,

I've had similar symptoms but not as severe as you describe. More like a tickling rather than a burning sensation. It went on about 9 months and my PSA bounced up in what my RO described as a classic bounce but I always countered with..."I think it has something to do with the prostatitis symptoms."

In any event a course of Cipro had no effect and all tests were negative for UTI.

About six weeks ago the symptoms diminished and one I realized I didn't have them any more. My last PSA was a big drop from 2.3 to 1.1 so I remain convinced it had something to do with the condition and wasn't a bounce.

Before the condition PSA had dropped to 0.8 and was continuing to decline then the "bounce" which was coincident with the tickling sensation. It didn't affect urgency. It was just noticable.

We both had CK treatment about the same time and the onset of this and the eventual drop in PSA seem roughly parallel but I haven't read anything about this phenom anywhere else.

Hope your symptoms subside soon.

Best,

K

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Brother, It's a great day in the park.

The day will be full of sunshine.

God bless and remember Never Give Up!!!!!

prezmic
Posts: 36
Joined: Jul 2011

I had a similar occurrance. IMRT in Aug-Oct 2011. BRT in Nov 2011. Around May 2012 I started experiencing burning. Not severe but bothersome. SOme days worse than others. Doctor tested for infection - none. Also, measured for retention of fluid in bladder - I was voiding completely. Doubled my flomax dose. Frequency and burning continued for several months. Around Aug 2012 burning stopped - went back to regular does of flomax. Now Oct 2012 - no more flomax and no frequency or urgency issues - pretty much back to normal. Must be a radiation thing. BTW - Psa started at 9.6, then every 3 months dropped - 0.7, 0.4, and now 0.2. Still waiting for my bounce - hopefully not with more burning.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Just got word about the blood/urine tests that were done on the samples taken on 10/30 and it's more "Good news, but . . ."

No indication of any urinary infection or STDs. Also no HIV. Had them test for everything just to be able to rule out as much as possible. So, no indication of any cancer or any urinary/STD infections.

What does this mean? The only thing we can do is chalk up my current urinary problems to post radiation effects of undetermined cause (other than the radiation itself) and just ride it out.

Hopefully, like it happened for Kongo and others, the problem will just resolve itself in time. The problems aren't earth shattering; just annoying and at times inconvenient and embarrassing.

Can't go anywhere w/o my pee bottle in the car or my backpack along w/a jacket or towel to cover up what I'm doing in the backseat of the car,whenever I just can't hold it when I'm out driving around.

Trips to the toiler (or behind trees) are still quite frequent but the burning/irritation seems less severe now that it was a couple of weeks ago.

Hopefully, that's an indication that the problem may be waning. We'll see . . .

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Lets congratulate and drink for the best. Bring your pee bottle along and forget about embarrassements and enjoy the occasion of such wonderfull results.

VG.

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