Thanks to all who have replied. I hope to hear lots more replies as information is power. A few comments, DOCTOR: My current doctor is a urology oncologist at the major teaching hospital in my state....
Hi all, I had RRP surgery in Nov 2006. Gleason 10. Positive margins but no cancer in lymph nodes or seminal vesicles. Surgeon thought that he got it all and recommended no further treatment. I did...
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...
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...
Hi all, I met with my new doc who is both a urologist and an oncologist at a teaching hospital. He reviewed my biopsy slides and got right down to business. Here is what the doc said: #1: With...
Hi Greenacres, Thanks for your note. I have an appointment for May 16th with a new Urologist who is completely reviewing my slides and file. He will meet with me and likely refer me to an Oncologist....
Hi Bill 23, I had the exact same situation. Leaking when standing and walking and not leaking when sitting or lying. That means that you have sphincter control so you are very likekly to regain full...
Hi Ford Lover, I suspect that I am the Gleason 10 that you mentioned. As you have already figured out, Gleason 8 and above indicates a more aggressive cancer and thus a higher liklihood (but by no...
Congratulations on the 00 GreenAcres. That is great news. Ben...
Thanks Kat, I am going to call the doctor's office tomorrow and see if they received my pathology slides yet. I am very encouraged to be taking some action after months of trying to decide what to...
Hi all, Here is a quick update on my situation: I have been referred to a new urologist who works at a nearby teaching hospital. They meet weekly as a group and review difficult cases. I am having my...
Hi Mozart, Thanks for the info. It is strange how the names are upside down. Ben...
Hi Tony Thanks for your kind words. I understand exactly what you are saying. This site is a real blessing with so many wonderful supportive people sharing their experiences and offering excellent...
Hi Bill, Yeah, that's it exactly. We have to live with this 24-7. I just needed to find some time when I had a chance of not thinking about it. Ben...
Hi TC, I just saw your posting of April 2nd. Please pardon my delay. I am only logging on about once a week now because I was being consumed by all the research I was doing and needed to cut back for...
Hi Mozart, Pease pardon my delay in responding. I found that my cancer was completely taking over my life and that I have to give myself some "rest" from all this. I no longer log on to this chat...
I was also nervous about the anethesia, primarily because I have a very strong gag reflex and a friend mentioned remembering the tube being put down his throat before his surgery. I discussed this...
Hi TC, Wow. What a masterful summary analysis. I am going to print it out and keep it with my notes. I still haven't decided what to do but I am leaning towards getting another opinion from an...
Hi TC, I am still around checking out the site every week or two. By pure chance, I came on the same day that you posted. Yeah the incontinence is still there - about four saturated pads per day. I...
Hi Hawkfan, Congratulations on the PSA. Keep us posted on what you choose to do. Ben...
Hi Alan92, I know what you mean. There do seem to be more guys with positive margins than I would have expected. I will look at the JAMA article that you mentioned. Thanks for the information. Ben...
Dutch, Thanks for the info. I will look at that web site. I keep hearing about Loma Linda. It must be a top notch place. Ben...
TC, If my seminal vesicles had been involved, I think that I would not be 50/50 about radiation like I am right now. I think that I would be about 90/10 in favor. I hope that you have a productive...
Sterd82: Thanks for your comments. It is very helpful to talk to others in our exact situation isn't it? Did you research the different types of radiation available? I haven't really started looking...
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...
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....
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...
Here is an update on my research: #1: From what I read, based on my positive margins and Gleason 10, my odds of recurrence within 7 years are about 96%. Having radiation (and perhaps hormone and...
Hi Berb, I am now approaching four months post surgery. I have had only slight improvement in the incontinence. Just as you described, I have near complete control when lying down and sitting but I...
Hi Susan, Thanks for your kind words. I saw your thread. I hope that all works out well for you and your husband. This is frightening stuff but all the information on this website sure helps us to...
Hi TC, Congratulations on getting the surgery done. Hang in there. You will feel better each day. The catheter is annoying but as you now know it is manageable. It will be gone soon. Have you got the...
Hi all, This is a great thread. I am Gleason 10, RRP in Nov 2006, with positive margins. From everything that I read, with my high grade cancer and positive margins my odds of recurrence are over...
Bill, Yeah, this stuff really stinks. Anyway, I have to stay focused, collect information, and make the most informed decision that I can. It was only through my research over the past few weeks that...
Good luck TC, Ben...
Thanks Bill, It has been (and continues to be) a rough couple of weeks. We met with my urologist. The good news is that my second post op PSA was 0.00. The bad news is that based on my Gleason 10 and...
Hi TC, Thanks for your kind words. I have not logged in for several weeks. I have been busy at work and also wresting with what are the next steps in my treatment. I will post more information in the...
Hi Bob, A PSA free test might help since it can help determine if the PSA is coming from cancer or from a benign problem such as BPH or prostatis. Below is a quote from the website...
Hi again Kziz, I also had open surgery. Several reasons I picked open over robotic: 1: As explained in an earlier posting on this thread, the open surgery supposedly gives the surgeon a better more...
Hi again KW, You mentioned in your last post that your doc is going to "scope you" on Feb 20th. Is the scoping being done to make sure that there are no physical problems at the surgical connection...
Hi Jim, Yeah, I keep telling other people (and myself) that all these side effects are better than the alternative of kicking the bucket. I need to keep reminding myself of that. I saw on your thread...
Hi Kziz, I am sorry that your husband has joined our "club." None of us want to be members but at least you will find some kind and knowledgable friends at this site. In the months after I was first...
KW: Thanks for the information. It helps me to hear that others share my longer time to recover continence. This is frustrating but will surely get better. I will be curious to hear about about the...
Thanks R, I haven't given up hope on the incontinence. I have just run out of patience. S says that I was patient and well behaved for 30 days after the surgery. After that, my patience was gone. I...
Hi Markus, I am glad that you found this site. I stumbled on it myself less than a month ago. Although I have had a great deal of support from my wife and family, sometimes you feel like no else...
I am going to bump this up to the top so Hawkfan can easily find it. Ben...
Hi Hawkfan, I sure am sorry to hear that you had positive margins. It is scary wondering if something was left behind. The good news is that (I am assuming) your seminal vesicles and lymph nodes were...
Hi Kat, I "try" to urinate (on purpose) about every one to two hours. about 75% of the time there is no urine left in my bladder since since it has all leaked out into the pads while I am walking to...
Hi Bill, I am so glad to hear that your treatments are progressing and that so far you are free of side effects. I just wanted you to know that I am thinking about you. Ben...
Hi R, INCONTINENCE: Not much change on the incontinence. When lying and sitting, I have very little or no leakage. As soon as I stand up or am walking around I pretty much have constant leakage. When...
Pete: We all have our ups and downs. It sure helps me to talk about it. I am glad that this thread was started. We all need to let off steam sometimes. Two-of-Us: I have been wondering about the...