Mozart250 PC Journey Thread

Hello:

While googling for online cancer forums I found this one.  

Story in nutshell

* June 2006.  Routine physical as 51 year old man.  PSA in year increased from 3.7 to 4.6.  DRE: prostate enlarged

* July 2006.  Urologist recommended biopsy

* August 2006.  Second opinion (bad feelings from first urologist) biopsy recommended.

* September 2006.  Biopsy came back positive in one sample (had to be sent to JH to confirm).  Preliminary diagnosis: Gleason 6, cancer likely confined to prostate.  Although cancer is cancer, my research indicated that likelyhood of cure was very high if caught early, which this appeared to have been.  Decided on the standard surgery, since it did in my mind seem to be marginally more effective.

* November 2006.  Had surgery.  Results showed positive at margins.  Gleason upgraded to 7 (3+4).

* December 2006.  First PSA post surgery.  Results 0.1.  Disheartening to learn it was not 0.0.

So..

It can be disheartening going from "high probability of cure" to "very real possibility this could kill me".  I am trying to get a handle on this.  One disheartening web site I visited indicated that at my stage, any further treatment I receive is only to extend my life, not curative.

Still, this could be overly pessimistic.

I have come to the realization the only things I can control here are (1) taking care of myself (diet, exercise), (2) attitute, (3) treatment choices. 

There does seem to be strong anecdotal evidence that proper diet and exercise can at a minimum delay this disease.  Since this is an area I can control, this is my current focus.  I have lost 10-15 founds with 30 more pounds left to lose, until I am at my desired weight.  Meanwhile I am trying wade through all of the information concerning diet and to separate the wheat from the chaff here.  

I drink a glass of pomegranate juice daily, and have switched the focus of my diet towards fruit and vegetables.  I still like my ice cream, but have limited it to once a week. 

I also either walk or use the treadmill 30 minutes to an hour daily.

Incontinence at this stage is more a nuisance (minor leakage).  Sex is another story, as my wife has shut down on me for over five years anyway.  Whatever.  This does make me feel uncomfortable when my urologist recommends a vacuum pump for me.

Am I being too pessimistic as to what my outlook is at this stage.

Post Edited (mozart250) : 1/26/2007 5:21:54 PM (GMT-7)

Yes, you're being way too pessimistic. For one thing, the lab my blood is sent only goes down to 0.1, so my results come back as <0.1 (less than 0.1), which might be your reading, too. Even if yours is .1 it's small enough to be inconsequential. Just keep watching it every 3 months or so and see if it gets higher. For right now you're doing all the correct things. Don't make yourself crazy over this one reading.

-Gordy

Hi Mozart

I tend to agree with the others. You are being a little too pessimistic. 0.1 isn't trememdously bad and it was 1 month after. My urologist, like spins, absolutely refused to do my PSA until 3 months after the prostatectomy. Mine came back 0.87 and I had the same GS 3+4 and 20% involved with positve margins.

Be optomistic, super positive and let yourself heal. Life is great !!

Russ

Same to all of the above. We know what a slammer it is to hear that "positive" margins and then the Gleason upgrade. Still, you're only 51 (that's the new 30, right?). Your PSA score is so low and probably undetectable. And, go read BenEcho's posts. He's the one who has researched information that prostate cancer cells "may" not be able to thrive outside the gland - they die off once the gland is removed. You're at a level where you can select many options and, like us, watch and wait for something that may never happen (we hope).

What is your doc recommending for the future?

Hi Mozart & welcome

As Gordy says. a PSA of 0.1 is  a no-brainer.  When I was down to 0.3 the Medico said that it was (to all intents and purposes) zero as there is always a "margin of error" in the analysis equipment used.  you have absolutley nothing to worry about!!

Looks like you have the correct outlook  {"10% surgery and 90% attitude" is my motto.} and well on the way to recovery.

i strongly suggest that you keep a watchfull eye on the PSA after a few months post-op.  After RadioTherapy mine went down from 19 to the same as yours is now but in the last 6 months it's gone rampart and back to 20.  I am on ZOLADEX & Casodex and waiting to see what affect this has - Bone and MRI scans all normal so heaven knows what's going on!

Cheers

Bernie

 

Hi mozart 250,

Take a look at my stats at the bottom of this posting. As you can see, they are extremely similar to yours except that my Gleason is considerably higher. You might also want to read my thread (titled BenEcho Journal) where I cover my situation in more detail.

PSA: First of all, I think that a PSA of 0.1 and less and considered undetectable and 0.2 and above is considered detectable. From what Swim said above, it sounds like there might be a difference between <0.1 and =0.1. She is more knowledgable than I about the medical stuff so I have to defer to her on that topic. Perhaps you should ask your doctor for a better explanation. Also, as others have said, the standard thing is to wait until 90 days after your surgery to have your first post op PSA. I was told that it takes that long for your body to completely filter/remove the old (pre-surgery) PSA out of your blood. So until 90 days have passed, some PSA can remain in your blood from the cancer that has already been removed and this could improperly inflate your PSA score. That is why they normally wait 90 days. My surgeon said to wait 90 days but my local urologist wanted to do a PSA at 5 weeks and I was fortunate that it was 0.0 at five weeks. I would suggest that you wait until you are at 90 days post surgery and then ask to have them run the PSA test again.

POSITIVE MARGINS: Next, let's touch on the issue of positive margins. I share your dread about this. I too live in constant fear of recurrence due to my Gleason 10 and positive margins. This sucks but it is the reality of our lives. I think that the possiblity of recurrence within 7 years is something like 50%. That means that 50% of people like us do not have recurrence. Let's hope we are in that group. If there is a recurrence, I think that you then initiate further treatment, most likely one or more of radiation, hormone, or chemo. I have also read that you can have positive margins without having any cancer that escaped the prostate. I talk about this some on my thread. Better yet, read my source which was Dr. Patrick Walsh's book which talks about this.

RADIATION NOW VS. RADIATION LATER: This is the big question that I am wrestling with right now. Is it better to go ahead and do radiation right now? It might kill any remaining cancer cells but then again maybe we will be in the 50% group that was not going to have a recurrence. In that case, we have 100% chance of damage / side effects from the radiation vs. 50% of a maybe better outcome with the cancer. It seems to me that if you can wait on the radiation without adversely affecting your odds of killing the cancer, that would be the best thing to do to delay any further side effects as long as possible. So far both my surgeon and my local urologist say not to do any further treatments right now. I intend to do more research and discuss this further on my next appointment in about three weeks. I will post the outcome on my own thread.

I am sorry to have you join me and the rest of the small percentage of surgical patients who have positive margins. You and I share a lot of similarities in our situation (age, stats, dates of diagnosis / surgery.) Let's stay in touch. you might want to start your own thread (see Bluebird's helpful hints thread) so I (and all the others on this web site) have a good place to contact you. I wish you all the best.

Ben

Welcome back Mozart!!!   You are very welcome!! Your new family of friends can really make the difference.   You just have to be willing to reach out and take our hands.   Perfect!!!! When those dark clouds start to come in “and they will”…. Reach out to all of us and keep your little rainbow close!!!   It truly will help on those stones that seem to wobble when you first step on them… then you’ll realize … hmmm this stone isn’t so wobbly anymore… J   Always Remember…. Your Decision is Your Decision and it will be the Right Decision for YOU!!!   You are in our thoughts and prayers as you move forward… In Friendship ~ Lee & Buddy

Mozart, good for you for keeping a positive attitude and taking good care of your body and mind. Jeff's PSA results are always 0.1 (well, he's only had 2 tests) but as others have said, it's because of the testing that it's not a 0. Keep concentrating on what you can do and what you do know and don't worry about what-ifs. God bless, kat

Hey ~ Mozart,   Your signature looks Great!!!   And a special note for Dec 2006 ~ deserves acknowledgement… This is a “big” thing for all of us…   1 st PSA 12-2006    *&^%$#@     WOO ~ HOO!!   (*&^%$#   undetectable!!!!!!   And in the true spirit of positive thinking…. We will look forward to adding your 2 nd one next week.   Mozart ~ We each need to learn to live one day at a time… and not let this control our lives.   Who knows.. we may not be here for the next round of PSA tests...  Hopefully we will be but one never knows...    Thank you for staying with us!!!   And jump in anytime…   We really do need to hear from you periodically… Okay….   We will be looking for a posting next week…   We saw our urologist on Monday and he said see you in 6 months.   J So we continue to move forward… The waiting and hearing the 2 nd PSA was undetectable… was much less stressful.   Time is a healer for mental and physical….but the most important thing we must all remember ~ Monitor PSA’s on a regular timeframe (per your doctor’s orders) ~ …Do not put it off just because we’re seeing undetectables… even 3 years down the path.     Take care for now and know you are in our thoughts and prayers. In Friendship ~ Lee & Buddy   P.S.   Threads started by: mozart250 (direct link ~ just click on the title!   Reminder to click on the REFRESH icon once there) First Post   Question?? What does the Bump mean??  in your last posting? 

I’m not sure of the answer to this…but with this posting it will go back to the top so we can hopefully get some info for you!!!!!

Three month PSA was 0.0. Dunno why it goes down from 0.1 to 0.0, but
good news nonetheless. Time to edit sig I suppose.

Hi! ~ Mozart250,   I posted some information on the thread below that may be helpful…. To your question above…. It may be worth checking out…. I hope it does help!   Direct Links ~ just click on the titles below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Perineural invasion?   Started by Raheeb.....  It has information about capsular penetration also.   *      *      *      *      *      * On April 3rd I saw this Feb  2007:  PSA 0.0 on your signature on a posting to Tony…..       Yea!   ~ Mozart250, 2 nd ~~~~ >>>   Woo ~ Hoo   <<< ~~~~ %   undetectable   Cause   for    celebration!!!!!                  What a wonderful day it is ~ each and every-day ….                               Enjoy it to the fullest my friend.   Yippeeeee!!!!!! From   Lee & Buddy   *      *      *      *      *      *   The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met…. 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.     Sharing is Caring ~   Thank You for Caring  

Woohoo.  PSA still 0 as of today.

Actually the lab report reads under 0.1.  Good news anyway.