Hi Julie If they think it's a pocket of urine why don't they try to drain it. That would provide instant relief if they were right. Jane...
Hi farmer bill It's such a stressful time for you but I'm sure your doctors know what they are doing. The pain you describe sounds very like what my husband had following removal of the catheter. His...
Thanks English Alf. We will definitely look into this as he works at Cannon street so London Bridge is very handy. We had been considering UCL , but this one could hit the spot - far better than...
Thanks Bohemond - do you mean 2 or 0.2? I have been told 0.5 is the cutoff point .. though we can't understand why his PSA is up and DOWN. It's odd apparently. David / Purgatory - when did you have...
Thanks English Alf. The videos are very interesting. We live in Sevenoaks and my husband works in London so, in actual fact, he can pretty much choose where he goes and what type of radiation he has....
Dear Bluebird I am very sorry you are here. But I am so impressed with the research you have done and the way you are approaching this. We were like rabbits caught in the headlights and we very...
Thanks all. I think the problem with my husband is that his PSA has gone DOWN as well as up. If cancer is present, then this shouldn't happen. All the PSA tests were done in the same lab. It is this...
Following RP in January 2012, my husband's PSA has not gone down to zero, but is fluctuating (both up and down) between 0.1 and 0.4. The last test was 0.2 (down from 0.4 previously). We have been...
Thanks too Luca99 - I will investigate Italian centres too!...
Thanks so much Lowroad. Can you advise whether it is worth having the PET/MRI scan with PSA up and down between 0.1 and 0.4? Some people have suggested the usual choline 11 PET scan doesn't detect...
Thanks SpecialLady I have made contact with the Dusseldorff hospital and will keep you posted. It may be worth just starting radiotherapy now without even waiting for the scan. I am terrified that...
My husband had RP in January. But unfortunately the margin was 3mm positive and there is still some cancer. PSA is behaving strangely jumping around (up and down) between 0.1 to 0.4, so the...
Sorry to post again, but I have so many questions following today's visit to the doctors. I can't quite get my head around it all. We have been referred to have an MRI scan following PSA increase...
My husband had RARP in January 2012. PSA now rising from 0.1 to 0.4 in 2 months and radiation treatment recommended. I am confused at the array of treatments on offer: EBRT, IGRT, IMRT and proton...
My husband is totally incontinent 4 months after RARP (catheter was in for 2 months). He is using 10 - 15 pads a day and 2 at night. He tells me he is doing Kegels, but I have booked him sessions...
Thanks overthepond and aliceplace. PSA now at 0.1 which apparently isn't low enough and it has to actually get below 0.1, so we will wait and see. Complete incontinence (10 - 15 pads per day) 14...
Hi Alice We are in Sevenoaks in Kent and he had surgery at the Nuffield in Tunbridge Wells - possibly a bad choice in retrospect. We are having a tough time as his PSA has not gone low enough so I...
Hi Alice Just wondering how your hubby is doing. I feel like we are on a similar journey - we are both in the minority of being UK forum members, both wives, and our husbands had RARP at about the...
Thanks for the advice and support you have offered me in the past few weeks. I wish you lots of luck with your test on Wednesday (will think of you as my hubbie has his first PSA test since RARP in...
Hi Gadget I am answering on behalf of my husband who is young (46) and had RARP in Jan 2012. It's early days for us and we find out this week whether his PSA is low enough to avoid radiotherapy....
Thanks for replies. I will most definitely shop around for best radiologist if and when needed. 8 week PSA was 0.269 which is good (down from just over 6 pre RARP). But it needs to be <0.15 on...
I have failed my husband by not managing to persuade him to speak to several surgeons before RARP in January which went pear-shaped. He had anastomotic leak and is 100% incontinent 3 weeks after...
Some really amazing advice and answers here. There is so much you can do to support each other. My husband (sadly) is a non-communicator and takes a head-in-the-sand approach to his disease. But I am...
My husband, catheterised for 35 days and another 2 weeks to go before the next cystogram, is worried that he will not regain continence once the catheter comes out. Does anyone have any good or bad...
Yes you are right ... it WAS 3mm at the edge. I have asked for a copy of the path report and the doctor said he would send it to me. I think your idea of a second opinion is a very good one. Also the...
My husband (age 46) was downgraded from Gleason 8 to 6 following the path report (MRI and bone scans were clear) but there was a 3% positive margin which our surgeon says could be where he nicked the...
Hiya Just found this UK website which has a great table/matrix of treatment options which you may find helpful ... http://www.prostatecancercentre.com/treatsel.html...
Thanks Alice. I have been watching the videos and they are very informative. Thanks too to all other posts. This is a great help,...
White Bird You poor man. That is much worse then our position. It must have been so frustrating and irritating for you. My husband had pelvic drain but removed fairly quickly. I am glad to know that...
Thanks for this. Your husband was very young! I know the time length varies, but I am concerned that the doctor removed it too soon because he wanted to go on holiday! Sounds like your husband's was...
Sorry Phenom - I have re-read and now I see your history. Getting confused as not used to these forums. Your situation is very similar. Thank you for your help. You sound like a success story? ED...
So am I right? My husband refuses to discuss it! I guess nothing we can do (not interested in litigation) but I can't trust the surgeon now! You had the same thing Phenom? You too were recatheterised...
Thanks Foxrun and Powellist. I hope your brachytherapy continues to be successful. I wish we had consulted a radiation oncologist as well as a surgeon!...
My husband (aged 46 with 9 out of 12 biopsies showing aggresive cancer and PSA 6.1 - doubled from 3.2) had RARP 5 weeks ago. Tricky op. His catheter was taken out after 5 and a half days which I...
Yes I DID trust the surgeon until this terrible internal leak my husband had. The surgeon advised him to drink a pint of water (which was crazy) and then left him in complete agony 9 hours after...
Thanks Whitebird. My husband is a stoic like you (yes I agree coke and popcorn are a MUST at the movies). He says that I am worrying unnecessarily. Your tips are excellent and we are not squeamish...
Thanks so much. I will buy the book and read up. I am not (yet!) worried at all about erections, just the fact that we need him to get better and I understand that Cialis and Viagra have a beneficial...
Yes sorry - I have been confused about this too. I DID mean INTERNAL leakage into his abdomen and not external leakage into pants (which we are very familiar with even with the catheter!). It was...
Thanks so much. This is so helpful. They want to remove his catheter the same day if there is no leak showing on cystogram on Monday, but I want him to wait a couple of days (even if it doesn't leak)...
I am a bit confused as I can't see how they can remove the catheter when there is still a leak, As my consultant continually tells us, urine finds the path of least resistance and if there is even a...
Hi newdiag My husband is 46 and just had radical prostatectomy (24 Jan). He had gleason 7, and 9 out of 12 cores of the biopsy tested positive, mostly at the highest grade of cancer. We were told...
Thanks again Steve. Did they leave any time gap between the final cystogram which showed the leak had healed and the catheter coming out? Do you think it's prudent to to wait a couple of days to...
I hope it all went well for you. Can I just tell you (without meaning to worry you as this happens VERY rarely) about my husband's experience when he had his catheter removed after 6 days following...
Thanks so much Steve. That is what I thought, but it is so nice to hear someone confirming things. I assumed he would not be getting any kind of good results for a long time - but maybe that was just...
Alice - Just found this thread of yours and congrats on the zero PSA. Whitebird - we have a holiday booked in 4 weeks time touring China for 2 weeks! We booked before we knew he had cancer. My...
Thanks Alice. This is reassuring. I am delighted your husband has made it through almost a week without a recurrence. He must be out of the woods by now? Has he consciously tried to drink small...
Can you start taking viagra/cialis after radical prostatectomy while the catheter is still in? My husband is still catheterised 5 weeks after the op and I am worried that not taking cialis from first...
Well done to you to get it taken out - my husband's has been in for 5 weeks and due out on Monday. Did you try not to drink large amounts of liquid at a time but spread it evenly through the day? Is...
I am posting because I can't find anyone to talk to and my husband is completely head in the sand about everything. He is 46 years old. Had RARP 5 weeks ago. Catheter taken out after 6 days. Sent...