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Posted 1/18/2007 11:40 PM (GMT 0)
Hi Tanya and Ken,

The way urologist #1 explained it to me is that testosterone affects the prostate gland similarly to pouring gasoline on a fire. I think that Casodex reduces the testosterone that the body produces which is supposed to slow the spread of cancer (same as hormone therapy just shorter term) and also shrink the prostate.

I think that a normal prostate is about the size of a plumb and after taking Casodex my surgeon said that mine was the size of a grape and thus it would be harder to spare the nerves. I did not understand exactly why. Perhaps the nerves also shrink.

I think that your final comment in your posting is exactly right. If Ken's prostate was enlarged to begin with, then the Casodex shrinking it down maybe makes it closer to normal size. I think that a normal sized prostate is 15-20 cc. If I am understanding you correctly it sounds like Ken's was 73 cc and the Casodex shrunk it down to 30-38 cc. It seems reasonable to me that this would make the surgery easier not more difficult.

I am not expert on this stuff. I mostly just reacted to the fact that my surgeon disagreed with what my urologist had done and here I was stuck in the middle and suddenly being told that this would adversely impact the ability to spare the nerves. I have never had something like this happen before but then I have never had a serious medical problem involving multiple doctors before either. Maybe doctors disagree all the time. I have seen other threads that mentioned doctors disagreeing. When I told my GP that my surgeon disagreed with my urologiest, my GP said that he thought that giving Casodex was the standard first thing to do to buy some time while the patient was making a decision on treatment options.

In any case, if your surgeon is happy with the affect of the Adodard then that sounds like a good thing. You might want to tell him that you know of someone else who's surgeon said that shrinking the prostate (to the size of a grape) would make it harder to spare the nerves and see what he says. I am guessing that the difference is that Ken's prostate was much bigger than mine to begin with.


I hope that this information helps. Good luck with Ken's  surgery next month.

Ben

Posted 1/18/2007 11:52 PM (GMT 0)
Hi Jetguy / Bill:

Thanks for your kind words. I have been following the recent conversation in your thread but I didn't post anything because I have been a bit depressed recently and it just sounded false for me to say "hang in there" on your thread while I am saying "woe is me" on my thread.

As you say, none of us wants to have PCa but we have no choice in that, only in what we do to try to kill it and in how much we let it impact our lives. We just have to give this thing the best fight that we can. If we win, we win. If not, at least we tried. You said something in an earlier posting about how a pilot is taught to keep flying until the last piece falls off the plane. I love that. That is exactly the attitude that we all have to have as we fight this thing.

Best to you on both the physical fight and the emotional fight.

Ben
Posted 1/19/2007 12:03 AM (GMT 0)
Thanks for your quick response!

That is reassuring, I wasn't sure what your prostate size was before or after. Yours sounds like a different situation, being shrunk down below normal, while Ken's is still above normal. But I will ask about it just to make sure there isn't anything just about shrinking it that causes a problem with any nerve sparing.
Posted 1/19/2007 12:09 AM (GMT 0)
Tanya,

I think that what you have said is exactly right.

Ben
Posted 1/19/2007 12:52 AM (GMT 0)
Ben:

Re your post to me this afternoon, I think you are right.  Consult with AP after your three month post-surgery PSA.  Go back to Baltimore and see him and his colleagues.  That may make you feel better.  Also,Robin always called me back whenever I had a question. Don't underestimate her assistance and advice.  She has experienced all types of patients with different stages of PCa.  Any serious questions she cannot answer will go straight to AP.

Given your concern, which is understandable, perhaps the best thing to do is tell Robin to ask AP to review your chart with his colleagues after the three month PSA and come up with a treatment plan for you, or if you should simply check your PSA on a regular basis and enjoy life w/out treatment as long as your PSA remains <0.1, the lowest reading you can get. 

Posted 1/19/2007 1:07 AM (GMT 0)
SJC:

Excellent advice. Thanks.

I have to stop dwelling on this for the next month or so and focus on resolving the incontinence first. That is just easier said than done sometimes.

Ben
Posted 1/19/2007 2:59 AM (GMT 0)
I have the same problem Ben. I want to say something positive to someone when I feel lousy. Or I am feeling ok and others are suffering. The whole deal blows.

Bill
Posted 1/19/2007 5:51 PM (GMT 0)
Ben, I see that you are logged on right now and just wanted to say HI. what a great first PSA!! kat
Posted 1/19/2007 7:19 PM (GMT 0)
Hi Kat,

Thanks. Needless to say, we were very pleased with a 0.0 at the five week point. Here is hoping that it holds on all future PSAs.

Ben
Posted 3/4/2007 9:38 PM (GMT 0)
I haven't posted in a while so I will give a quick update.

SURGERY: I was fully recovered from the direct effects of the surgery at about four to six weeks after the surgery. I have had no further issues.

CANCER: The good news is that I have had a second PSA (first at 5 weeks and the second at 12 weeks) and both were 0.00. The bad news is that with a Gleason 10 and positive margins my odds of recurrence within 7 years appears to be 96%. We are still debating what to do about this and I have written another thread (POSTIVE MARGINS. WHAT DO I DO NOW) discussing this topic in detail.

My local urologist and GP both recommend adjuvant radiation therapy right now before the PSA rises. My Johns Hopkins surgeon recommends doing nothing now and only getting further treatment if/when the PSA rises. This is called salvage therapy.

INCONTINENCE: I am four months post surgery and three months since my catheter was removed. My continence has improved slightly but it is still mostly the same as it was from the day that the catheter was removed. I have almost complete urinary control when lying down and sitting down. If I concentrate and clamp down when I stand, and rush to a toilet within 30 to two minutes, I can void most of the urine in my bladder into the toilet rather than into a pad. However, when I am up and walking (most of the day in other words) I am nearly 100% incontinent. My surgeon says that after RRP surgery it takes 3-6 months on average to regain continence. However, I do not feel like I am making much progress and I am very frustated about this.

OTHER: I have wrestled on and off with depression and sleeplessness in recent months. I am on several "as needed" medications to help with this. It is hard not to dwell on all this stuff. Hell, I would have to be crazy not to be depressed.

FINAL COMMENTS: Although I have found this website to be very helpful, I also found that I was spending an hour per day just trying to keep up with everything and that I was dwelling on my cancer all the time. For my sanity, I had to back off a bit and I have not spent much time on this site for the past month or so. I will try to come visit about once a week or so in the future.

Best to all.

Ben
Posted 3/4/2007 10:39 PM (GMT 0)
It sure hasn't been a walk in the park for you, Ben. I sure hope things improve for you in the future. I am especially sorry for young guys like yourself. Don't know what else to say - wish I had some magic words for you.

Regards,

Bill
Posted 3/5/2007 1:42 AM (GMT 0)
Thanks for your kind words Bill,

You and the other regular posters in this chat room have been a real boost to me and to all the other folks who post needing information or just empathy.

All my best.

Ben
Posted 3/5/2007 3:27 AM (GMT 0)
Hey Ben and Green, I'm still fighting the leaking as much as you two. RRPon Oct 17. Cath in for 23 days!!!. Still using about 6-8 pads a day!! I hope it helps to know your not alone in this. You can check out my Thread to see all the details. I'll be watching to see how you two come along. Will let you know if I have anything different happen also.

KW
Posted 3/6/2007 3:11 AM (GMT 0)
Thanks KW,

Although I am pleased for all the people who regain continence so quickly, it is also nice to hear that I am not alone in taking longer.

All my best,

Ben
Posted 3/6/2007 3:43 AM (GMT 0)
Hi ~ Ben,   I’ve re-read through your postings and it seems you are doing everything in your power to move in the right direction.   It’s truly amazing isn’t it the power of this forum.   Knowing there are so many people walking with you ~ is definitely a comfort.     I agree with taking a nice deep breath and re-grouping.   Sometimes we hit overload and we loose all perception with what we’ve learned.   Everything runs together and then we start questioning questions and then it’s a big circle and we go nowhere.   Take your time-out!!!   This will be a good thing.   Once you start back with your research (looking for answers)… the true picture will be revealed.   One thing I truly feel is ~ when the answer is right … you will know it and you will move on it.   As long as that 0.00 is there…   take time to continue on your recover/healing stone.   Our thoughts and prayers are with you each and every~day…..   Let this little rainbow help you on days that seem a little darker than others…..   You Truly Are Not Alone….     * T his is your very own R ainbow and it’s sprinkled with S unshine * * ////////////////////// //////////////////////////// /////////////// /////////////////////////// * ////////// /////////////////////////// ///// //////////////////////// ///////////////////// ///////////// ///////// ///////////////////// ///////////// ////////// * ////////// *     T ruly      R elieves      S tress Rainbows bring smiles, smiles bring positive energy into our being!!!     Warm wishes to you and yours, In Friendship ~ Lee & Buddy   Warm wishes are just like the rainbows that help make our clouds disappear, They help us feel precious and cared for, and fill us with comfort and cheer (optimism).
Posted 2/5/2008 3:14 AM (GMT 0)
Hi all,

I haven't posted in a long time. Here is a quick update on my situation:

RECURRENCE: Due to Gleason 10/positive margins, I am told that my odds of recurrence within 7 years are high. I am continuing to have my PSA tested every three months. So far, it remains < 0.008.

FURTHER TREATMENT: I considered further treatment to try to improve my long term survival. I ultimately determined that with a high gleason, the odds were that any future recurrence would be distant not local (near the prostate) thus radiation is not beneficial. I considered hormone and/or chemo but at this point my doc says to just wait and take hormone treatment if/when PSA rises. At this point, that is my decision.

INCONTINENCE: My pads/day gradually declined from 10/day (month 1) to 3 pads/day (month 3) to 1 pad per day (month 9.) Still using 1 pad/day at month 15 (02/08.) I am 50 and had no urinary issues prior to my surgery. I guess that I am just one of the unlucky minority that does not regain full urinary control. Not everyone gets a good outcome. I have learned to live with it.

By the way, I want to share one interesting idea that my wife had. I have kept careful records of my number of pads per day starting about three months after my surgery so that I could see my slow (but still occurring) progress. Once I reached one pad per day, I wasn't sure what to do. My wife suggested that I get a small accurate kitchen scale and weigh the pads empty and then when I change them each evening and that weight difference will tell me how much urine is in the pad (one gram = one ml.) It works and makes me feel like I am still making gradual progress.

Another tip for those of you in my shoes (possible slight incontinence forever) is that the one quart zip lock bags are a great way to dispose of the pads without worrying about the smell and the lack of garbage containers in many restrooms. I particularly like this when traveling and staying in hotels. 

Ben
Posted 2/5/2008 4:34 AM (GMT 0)
Ben,
I've just read through this post from the beginning up to today.
You've given so much to this forum with your insight and detailed description. I really appreciate that.

After "successful" surgery and good recovery Don's first 3 month PSA post surgery was 11.8. His doctors agreed the cancer had spread outside the prostate bed (his path report said "clean margins) and there was nothing to be gained by starting HT before they knew exactly where. After 7 months and a PSA close to 19, tests revealed distant lymph nodes were involved. So, HT was started and will continue until it doesn't work any longer. Then we go to the next thing.

I've told you all of this so I can now say:
Your openness in dealing with such a harsh blow touched me. I understand your concerns but the fact that your PSA is staying so low certainly bodes well for you. I sincerely wish you peace of heart and mind.

All the best to you Ben,
Susan
Posted 2/5/2008 7:19 AM (GMT 0)
Ben!
Undetectable! That is great news. I have been praying that you would come back and say hi. I have been praying for you frequently and will continue to do so. This sight has grown. There are more like us here now and so many stories that give me hope. I went a different direction than you with the different treatments but I am quite well. I started my own blog below and feel free to have a look. I have completed surgery, radiation, and I have been on continuous hormone therapy since May '07. My continance is good except if I drink too much alchohol then, well I caused my own issue. You sound (type) good and like your keepin' on OK. Welcome back! and And again, you have our prayers for your future zeros!

Tony

Posted 2/5/2008 2:09 PM (GMT 0)
Ben

Good to hear from you again and that's great news on keeping your PSA down and in the undetectable range. Best of luck and keep the 0's coming, you will be in our prayers.

Norskie
Posted 2/6/2008 11:34 PM (GMT 0)
Ben:
It is so great to hear from you and great that you are doing so well. I think about you from time to time. You and I signed up here more or less the same time as I recall.
Posted 2/9/2008 4:09 AM (GMT 0)
Hi all,

Thanks for your kind words.

SUSAN: I am sorry to hear about Don's PSA but as you have discovered that are lots of options to be followed. . We all face this possiblity and you just have to fight it if it happens. Good luck with Don's HT.

TONY: Thanks for your note. From your earlier posts I was pretty sure that you would undergo further treatment. One of my business associates had similar specs to mine except that his cancer had spread to the seminal vesicles. We gave it serious thought but decided that we can still do it if/when my PSA rises so we decided to wait. I am glad that it went well for you. There is no doubt that you reduced your odds of recurrence and that is what we all desire. Good luck.

NORSKI: Thanks for your note. Everyone on this forum has always been so supportive. What a great group.

MOZART: Yeah we even had our surgery the same month. Congrats on the 0's. Keep it up.

Ben
Posted 2/9/2008 4:53 AM (GMT 0)
I hope so Ben, and thank you,
But you are always in our thoughts and prayers. I am so glad you stopped back in. And with pretty darn good news. Stay well.

Tony
Posted 2/9/2008 6:27 PM (GMT 0)

Ben,

Excellent detailed posting!  This should be helpful to all.

Greenacres: as soon as I had my 1st post-op appt (9 days after surgery), my surgeon told me to strive for 100 kegels a day! I know that that I don't come close to that number, but I definitely try to do them as often as I can.

Phillysub.

Posted 2/10/2008 6:24 AM (GMT 0)

Hi Ben,

Glad to hear from you after some time. Sounds like things are looking up for you.  Glad your continence has improved.  Mine has not after 13 months, still 8-10 pads a day.

Berb

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