'nuther new guy, a couple of questions

Hi Folks,

I've been reading old posts for a few evenings and have concluded that there are some pretty great people here. John Wayne tough and some are philosophers as well.

I bought the Walsh book and read it until I got dizzy.  At 64 I don't process this as well as I might have some time back. Of course I didn't want to be a doc back then either.

I think my stats will appear in my signature.

Before the PC diagnosis I wanted to do something (surgery) to ease the 77g prostate size. I suspect the docs felt I was going to have this diagnosis eventually; it doesn't matter much anyway now. I did look at the different actions that we could go with, and think the robodoc is probably the way I want to go. 

I haven't found it to be very easy to get much information about the surgeon that was suggested to me by the urologist. I did see one man on this forum who did use him and he was satisfied. I will send the surgeon questions to see what he says. I'm kind of curious if there is a source for doctor information other than internet searches-or maybe there's a web site that I have not seen.

One thing that I have seen here is that the Gleason score is adjusted upward on some of the post operation pathology reports. I was wondering if this is common. My urologist said the 6 is average for what he sees. I think sometimes these docs have to get pretty detached so maybe people, like on this forum, have more to say about this. 

I know that the docs make the call on recommendations for additional radio treatment after surgery but does anybody know if they are looking mostly for a clear margin to make that decision?

Last for now, I see people out there who think this is a walk in the park. I'm wondering what universe they are residing in! It seems common to think 'they' slam some seeds in there and you are done. There isn't a cancer out there that doesn't get my attention.

I am interested in any comments that might be out there. I'm betting there are things that I didn't ask that are more important than those I asked about.

Best of luck to all.

Ken

 Stats just in case

 PSA
08-1.9
10/09-2.2, got my own uro, ....great....
3/10, 2.4
6/10 biopsy 11 normal, 1 suspicious
9/10, 4.9
10/10, 5.0
12/10, 3.78
6/11, 3.1
12/11, 3.03
6/12, 4.7
7/12, 3.68
8/12, biopsy, 2/12 cancer, 1 suspicious
Gleason 3+3, one <5% one=10%, was told the prostate was 77 gr.

Don't know much about walkin' in the park, but if you are a candidate, it doesn't have to be much more difficult than 'slamming' the seeds in as you put it. I guaranty you that in my 'universe' I did every bit as much research as you have done or will do and came to my seed 'slamming' decision after some very careful analysis and soul searching.

Hey geewally,
Welcome to Healing Well.
I don't have any technical info for you. I just wanted to say I now have "Hey Beav..." floating around in my head like an earworm. Thanks for the memories.
Ward Jeff in NY

I haven't found it to be very easy to get much information about the surgeon that was suggested to me by the urologist.

If your area has a local prostate cancer support group, attend a meeting or two and the members will most likely share their own experience with local surgeons, urologists, oncologists and the treatments they received.

I got two glowing recommendations about a local robotic surgeon from two guys I know who used him for their RALP and the personal recommendations were probably the main reason why I chose my surgeon.

Good luck!

Dan

Ken,
Sorry you have to be talking to us but welcome. Comparing PC cases is tricky. Someone with organ confined low gleason score PC is likely to have a high chance of being cured while someone with G9 and known mets is treatable but the odds for curative treatment are much less. The guys with advanced disease are likely to face a life time of treatments - and none of them easy - just to stay alive.

In the end I don't find it all that useful to compare myself and my PC to anyone else. There is enough difference between cases to make each a bit unique. We can draw generalizations and attempt at grouping them but that's about it.

While you do have PC, your numbers suggest that your PC is very treatable with surgery or seeds. Don't let the word 'cancer' rattle you too much - you've found it early enough and are likely to die of something other than PC. Yes, it does mean you've got to get an unpleasant treatment of some kind - each with their own special side effects.

Keep learning and researching. Your real task now is to decide what treatment is right for you. Seeds or surgery seem like the first two to look into. Don't worry too much about a second treatment right now - let that concern take care of itself when and if you need it.

Keep us informed of your progress.
All the best,
Andrew

Welcome Ken to our forum.

I too had a large 69grm prostate but with G7 3+4 pre and post op pathology. The surprise after surgery was the cancer involved 60% of my prostate. I chose surgery and am doing great with continence, in fact with the organ gone I can now pee like a teenager again. The ED is a different story as I am 100% ED with no improvement after over a year post surgery.

I am not sure what part of the country you live in but when I was looking for a surgeon I asked other people I knew in the medical profession for recommendations and they all recommended my URO and RALP surgeon as the one they would use if they were in my shoes. My URO was very upfront with me about the side effects. he told me he  thought I had a 90% chance of full continence within a year, it took less than 4 weeks. He was not very optimistic about my chances with the ED since I suffered from it prior to PC and took 50mg of Viagra for over 3 years. He was able to spare my nerves but due to the large size of my prostate he said the nerves were stretched and suffered a lot of trauma that may take 2 years or more to heal. So I am still somewhat optimistic about the ED.

Good luck and stay in contact with us as you begin your journey.

Thanks for your responses!

My ill fated signature mentioned that I am in the Dallas/Fort Worth area.

GOP, Slamming, Was trying to illustrate a lack of appreciation for what these procedures are and the depth of thought that the decisions leading up to them require. If you took offense that sure was not intended. I am leaning toward surgery as that was recommended by the uro who admitted he is a surgery guy and also by my regular doctor, who I respect greatly. Nothing is off the table however-until a doc says so. I have read that the seeds are a great way to go if you qualify. Some folks seem to think 95% of PC guys qualify. As a result of your post and the others I am going to look at this closer now.

My dad, who is 85 now, would say 'slam' whatever in as he referred to a routine chore. I guess the 'seed' didn't fall far from the tree this time either.

JNF, you know, the surgeon sort of screwed up his face when I said that I had not been given any of the stuff that might reduce the size of the prostate. He did not offer to try that however. I will add this to my list of questions for him.

Everybody, I am going to have to go through your posts multiple times to process the info and suggestions. There were so many and they help keep things in perspective.

For the last several weeks I would feel as though I know which way I need to go and then a day later, not so much. Maybe that is how it works.

I really appreciate everyone taking time to respond. I am lucky to have found this group and hope to stay active for whatever I can contribute.  

Ken 

geewally said...

There isn't a cancer out there that doesn't get my attention.

  

Ken, that's a very understandable statement, given that many people equate "the big-C" with a death sentence...but it is also precisely why a growing number of internationally-recognized prostate cancer (PC) and pathology experts have raised the suggestion that low-risk prostate cancer no longer be called "cancer." 

PC is really two, or probably three, different diseases.  On one end of the spectrum, 30,000 men die each year in the US from an aggressive strain of PC.  Their case characteristics are very different from yours.  From what you've posted, you appear to be in the opposite end of the spectrum, solidly in the low-risk category.  There are millions of men living today with similar low-risk PC, and many/most don't know they have it and never will...because they won't encounter circumstances that lead to a prostate biopsy.  Autopsy studies of men who died in accidents found that 2/3 of all men your age had what would have clinically been called "cancer."

Your first step should be to educate yourself about your case...a low-risk case.  Before you undertake any irreversible treatment for the mere presence of a small amount of what today is still called "cancer."  Understand the consequences and benefits of that treatment...far too many men rush into treatment based on emotions like yours rather than evidence.  Examine the evidence on how low-risk (like you) men's lives are extended through aggressive treatments (hardly measureable), and how side-effects and morbidities affect the rest of their lives. 

I encourage you to educate yourself on the differences between low-risk, intermediate-risk and high-risk PC...they are very different diseases, and should be treated (or not treated) differently.

What treatments have you discussed in the past with your urologist to address your enlarged prostate?

Hi Ken, welcome to HW but sorry you have to be here.  You have already received some excellent advice on this thread namely to take your time, get yourself well educated on our disease, consult with multiple practitioners, strongly consider the side effects as well as the cure and choose a very experienced doctor to provide your treatment.

Based on the stats you provided, you might be a candidate for active surveillance.  The key word is "active" and if you choose this route make sure your doctor is experienced with this approach.  Your prostate size would indicate that you are not a typical candidate for LDR brachytherapy but, as others have indicated, there are ways to shrink the prostate pre-treatment that would allow you to consider this option.  Your best bet is to make sure you have visited an experienced brachytherapist to assess this properly.  As for slamming some seeds in and being done...well, quite honestly that's pretty much how I look at it in my case!  The tough part was dealing with the diagnosis, thorougly investigating the options and making a decision.  The treatment itself and aftermath have been (fortunately) mostly non-events as life proceeds normally.  Feel free to cut and paste my "journey" at the end of my signature if you want to see my first person view of my brachytherapy treatment.

Good luck.

Jim

Glad to see that you have caught your breath and sound more relaxed. 

As has been noted, LDR seeds can be a problem with a large prostate.   JohnT was greatly enlarged (60cc I remember) and successfully used LDR after using Casodex to shrink the prostate.   In my case I used HDR and it is much more able to be applied to bioth large prostates and men whose pubic bone causes LDR problems.   So include HDR in your research.

If your urologist hasn't been talking to you about these items and turns up his nose at AS, I would be looking for a new one.   To me it appears he is pusing you into his treatment without a proper review of all the potential treatments.   In any case you must get a second opinion before taking any action.   My uro spent more than three hours explaining all the possible treatments and then said he would not take me as a patient iuntil I met with another uro, a med onc, and two rad-oncs.   He said he only works with well informaed patients that have checked things thoroughly and still decide to take his advice.   After my research, his candor and confidence sealed the deal for me.  At least find a uro that works a lot with BPH enlargement and AS and see what is advised.

Hey GeeWally,

I don't have any advice to add to the good advice others have given you .... do your homework.

Like others have reported, I also had a large prostate that caused me to have to go all the time. Since my surgery, I have been able to sleep through the night without getting up to go and I can empty my bladder in one tenth the time. For me this turned out to be an unexpected positive .... I guess this is one benefit of surgery.

Good luck in you fight with PCa.