49 and I must kill something I love... my prostate

Bassguy,

The last year or so has seen quite a change in the recommendations made here. There are some newer voices that suggest surgery is not the only way to go. Other than myself, I can think of only one other fellow that elected to go the IMRT route as a primary treatment (Jetguy (?), perhaps he’ll chime in. I think he’s doing just fine.). It seems that the rad guys don’t post that often around here. I’m not sure why. I like to think they have better things to do!

My dx was quite similar to yours, though I had a couple of more positive cores than you and I was four years older. Like you, quality of life issues were/are pretty important to me. Like you, I was also weirded out (irrationally, I’m sure) by the thought of having those seeds in me forever. To be honest though, reading some of the experiences here pushed me towards IMRT. On the other hand, I don’t think we hear much from folks that had no problems with surgery and have just gotten on with their lives.

My experiences with IMRT have been good. I went to work each day and only experienced some fatigue the last couple of weeks of treatment. I had some urinary frequency issues about three weeks in, but some Hytrin took care of that. about 8 months after my treatments ended, I developed a urethral stricture that was undoubtedly caused by the radiation (surgery guys get these too). The stricture was treated without surgery and is no longer an issue. So, to date, no ED, no incontinence and no bowel issues.

Best of luck with whatever course you select. If you have any specific questions about my IMRT experience, ask away...

Bass Guy,
UCSF has an active study going on in AS. They are doing a trial with a number of patients on AS that have changed their diet, mainly no meat and dairy and losts of vegs. The program is still in an early phase but sofar non of the patients on the diet have seen any progression in their PC while there have been a few progressions so far in the control group.
The best way to monitor AS is to get a color doppler ultrasound, it will identify any changes and also identify if you have any other tumors that may have been missed, but with your low psa and previous biopsies, this would be a very lwo probability.
The PCRI web sit has an article by Dr Bahn on using color doppler in AS.
JohnT

I would echo much of the advice you have received, your stats don't indicate a rush to treatment. One site that helped me decide is yananow (you are not alone now) where many different treatment experiences are shared.

First of all Bassguy let me add to those recommendations to take your time choosing a treatment plan. You have plenty of time. Also at your age I would evaluate quality of life issues more than some here who are 15-20 years older than you. As was said make sure your primary treatment is for PCa and not anxiety. I repeat that from Tud's post because I am the author of it and still strongly advise it to all with low risk numbers. I also advise you sometime soon to do your best to take a week off, go somewhere or do something that can best take your mind off PCa for a week. We all need that time to just clear our heads and gain a better perspective as to ones options. If you chose a radical procedure, remember there are no do overs afterward. For 2+ years I've seen many here panic and undergo radical surgery 6 weeks after their initial biopsy. To better put that in perspective I first arrived here about 4 weeks after my biopsy(11/2007). I was leaning towards radical surgery. Then soon after because of a few here with serious incontinence problems and a seeded cousin I was going to do brachytherapy. Then luck stepped in by watching a well timed special by a local TV anchorman who also had PCa I heard of a clinical study I looked into and joined. Bottom line is that by not panicking and taking time to better educate myself I still have my prostate and the only effect on my life is that I ejaculate maybe 50% less than before. By the way no one also has informed you that even if you recover from ED after prostate removal or destruction, you'll never ejaculate again but I digress. There are many new procedures and therapies on the horizon undergoing clinical trials now. I'm not saying choose any but do realize that is an option and that there will be more over time. Fortunately you have the option to do AS for now and choose later if you wish. But if you do want it out of you asap just make sure you know of all the possible after effects before and not afterward. As I said there are no do overs later.

Good luck with whatever you choose, I just advise you to take your time deciding.
.

OK...  new day, new insights, new plan of action.  I think the first course of action for me is to reconcile the discrepancy between my physicians pathology report and the MMSK pathology report.  In order to make a well informed decision, I think understanding if I am a gleason 5 or 6 is important.  It seems to make a big difference in the Nomogram tool on the MMSK site.  At a gleason 5, the chance of indolent cancer is almost doubled from a 6.  That's just a calculator, but it helps to give some guidance.

I've contacted MMSK to get my slides back.  I am considering entering Johns Hopkins second opinion program which can be done remotely by mail.  Their pathology department will review the slides and all the records and make a recommendation.  The recommendation will be nice, but I am particularly interested in what pathology has to say about the slides.  I'd think getting that resolved will help me determine how much time I have to make a decision.

So I'm gonna make like I'm driving a Toyota on the San Diego freeway and try to apply the brakes.

Thanks again to everybody.  I will keep you posted.

Hi Landed...

Well it's great that you are doing so well overall.  That is something to be very thankful for.

If I were you, I would not look back and I would not have any regret.  If surgery seemed like the right decision at the time and you are up and around and enjoying life to some degree, then you should feel good about your choice.

My posting here started a week ago and I have learned alot in that short week.  In fact, I now regret the title of this post since communicating with so many who are much futher along on this journey.  It sounds very self centered, even though it was partly an attempt to be humorous and lighten my mood.

Someone once said to me (and it was an old chinese guy, so you can take it to the bank)...  "Learn to appreciate no toothache".   It's the same thing with life and death.  Being dead is actually our default condition.  Think of how many dead people there are!  Being alive is something to appreciate everyday.

You're only 6 months out with a long life ahead of you.  My guess is that things will improve and you will reconcile all of this in your mind over time.

landed-it's early still for the ED.  Mine returned after a full year.  Don't give up hope on that.  That was a long year for me and I often felt it would never come back.  It did with the help of Viagra.  Hang in there.

Bassguy-this is a great thread and is hopefully helpful to the newly diagnosed.  It seems you are the type of patient to whom the new treatment recommendations are targeted.    Do you have prior PSA readings so you can calculate your velocity?  It seems this would be important.

dave

Compiler thanks...  I will try reaching out to Jon Epstein.  If I mention you will I get a free throat culture or something?  LOL

 Landed...  Thanks and the best if everything to you as well.

Dave...  Jan. 2008 - 3.3, Jan. 2009 - 4.7 (negative biopsy), December 2009 - 5.65 (positive biopsy) - Thanks for the kind words as well.

Got it.

Franchot,

If you don't mind sharing, in your signature, it doesn't list your data at time of your PC dx. Like what your your gleason, your staging if indicated, and how many core(s) were positive, and to what extent cancerous, i.e. % of cancer in each core. Just trying to picture your whole situation.

Hope you continue to do well on AS.

David in SC

Bassguy,

You have a tiny, microscopic amount of prostate cancer.

Dr James Eastham, RP surgeon and Chief of Urology Section at Memorial Sloan-Kettering, often gives this advice to new patients presenting with extremely low risk cases like yours; he says:  "Lets see what it's going to do."  (Implying to watch what is going on, collect some more data, etc., before jumping into a radical, perhaps unnecessary, aggressive treatment.)  With some lifestyle modifications, many men with low risk PC "live strong" with PC either for the rest of their lives or they "defer treatment' until it is appropriate/needed.

Hear Dr Eastham say this yourself on this webcast:  http://www.mskcc.org/mskcc/html/95057.cfm

Or, schedule an appointment with Dr Eastham yourself at MSK...he is one of the world's leading PC surgeons.

best wishes...

You have to be your own advocate in your treatment choice. Watch your PSA, mine doubled in 8 months and I got concerned. I finally chose proton beam therapy. I's been 2 years since my 45 proton treatments at LLUMC. I feel great and just love and enjoying life. How fortunate I was to select proton beam therapy, I have had no side effects and everything works fine. I was 53 when I was diagnosed in 2007 and I was given the pitch how surgery was best for me. I am so glad that I did my research and its group like this, Protoninfo, Yana & ProtonBob that should be praised for what they do. Please feel free to follow this link http://prostateprotontherapy.blogspot.com/
I documented my Proton journey at LLUMC and I hope you enjoy. Good luck to you.