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one year after PSA test

User
Posted 30 Nov 2015 at 10:24

This website and forum and the charity’s nurses have been a great help to me and I thought I would just set out my experience before and after my radical prostatectomy surgery (RP).

I am now 64 and generally fit and healthy. I went to the GP in December 2014 because I had been peeing a lot, especially at night. I was given a PSA test and the score (7) and the rectal exam – a large smooth prostate - meant I was referred to the hospital. At this stage my mood swung from ‘prostate cancer is maybe the best cancer to have’ to being scared by the prospect of incontinence and impotence.

I then had a rectal exam by a urologist who sent me for an MRI scan, which I had in February. I suffer from claustrophobia but the MRI was fine, though very noisy. This showed some issues and so in March I had a biopsy. This was a bit uncomfortable but not painful and the nurse was chatting to me when it was being done. I was still hoping that they would find nothing, as my PSA was not that high and the rectal exam found no lumps. A meeting with a urologist confirmed that there was cancer - 6/6 samples on one side and 1/6 on the other – a Gleason score of 3+4 and staged T2c. This meant there was a fair amount of cancer but that it might be contained within the prostate. The prostate was large at 95cc. My wife and I had a chat immediately after with a nurse. It felt unreal and that this was something that happened to others, but not me. I was told that something needed to be done – doing nothing was not an option - and that I should choose between having the prostate removed (RP) and hormone therapy/radiotherapy (HT/RT). Appointments were fixed with the oncologist and the surgeon.

I found the pros and cons very difficult to assess as people’s experiences and side effects seem so varied. The surgeon said that because I had a lot of cancer on one side that he would not spare the nerves on that side and so it was likely that erectile dysfunction (ED) would be more a problem. On balance I was tending to surgery although I was aware that the RP doesn’t always get it all (I think in around 20% of cases) and that I might need HT/RT anyway. I didn’t like the idea of HT and possible hot flushes and it seemed that some of the side effects got worse over time unlike RP where things generally get better. On balance the message I received was that if you are considered young/fit enough to be offered surgery then go for it. I was helped in my decision by the oncologist who said in my position she would go for surgery, not least because my large prostate meant I would need a TURP before HT/RT. I think this was because they would want to take away some of the prostate before starting RT/HT.

My surgeon was experienced in laparoscopic RP. They had just started using a robot and all future RPs would be done using the robot. The advice is to check that the surgeon has carried out lots of operations and that their results are good. In practice I didn’t know how to check his results (I still don’t know how I could have done this) and felt asking to go to another hospital would be difficult so I went with the local hospital. The decision was also not helped by the Care Quality Commission just issuing a report saying that the Trust was inadequate!

I had the RP – laparoscopic and with a robot - in mid May. I have always hated hospitals, although have barely been in one for well over 50 years. I was anxious beforehand but my operation, which lasted 3.5 hours, went well. I saw the surgeon just before and also just after and they were very reassuring. I was discharged two days later. I wasn’t in much pain although I did suffer some general anxiety. I think this was probably down to the anaesthetic and other drugs. My main feeling was that I felt battered – as if I’d done 15 rounds with Mike Tyson. The catheter was uncomfortable. We didn’t get much in the way of detailed instructions about how to use it and I spent the first few days terrified that the bag was being blocked and that the urine was not draining properly.

The catheter came out after about nine days and I was surprised and very happy I was pretty much dry straightaway. I had expected to be wearing pads for at least three months. I did my pelvic floor exercises before the operation and keep doing them three times a day. I have the odd minor leak but I am basically dry. My peeing is much better now though real coffee does make me need to pee soon afterwards. I’ve read that coffee is not great as it irritates the bladder but I seem to be ok with one cup of coffee a day. I have mainly switched from tea to decaff green tea. I did this partly because it is supposed to help keep cancer at bay but also I now found that I liked it more than tea.

I think I have been lucky with my ED treatment. About a month after the surgery one of the urology nurses prescribed 25mg sildenafil a day for a year. I was told to practise (ie masturbate) every day as this would help with penile rehabilitation but not to expect too much. I was told that only 30%’ to 40% of people with nerve sparing surgery on one side eventually get spontaneous erections, and that this would happen after 6 months to 2 years. In July I was also prescribed a vacuum pump. This was to be used every day for three weeks and then two or three times a week. This gets the penis hard and again helps blood flow and is good for rehabilitation.

My ED experience has been variable. I haven’t yet been able to get a proper erection with the sildenafil, although I do sometimes manage to get it around half to two thirds hard. Without sildenafil I can get a bit of hardness and size but not much. I’ve tried using the pump with rings to maintain an erection but without much luck so far. Even with two rings I have found it difficult to keep it hard (though the size is ok). The erection has the foreskin pulled right back and it does not fee very usable. Also my wife feels that the coldness of it is weird. The surgeon referred me to an ED nurse who has switched me to Levitra instead of sildenafil. I asked about Cialis but he said that this was similar to sildenafil and so Levitra might be better (I know that there are discussions on here about whether this is correct). He prescribed 10mg. The fist time I used it my eyes ached and felt starnge. I spoke to the nurse who suggested I try cutting the tablet in half. The side effects weren’t so bad and the erection was a bit better than with sildenafil. I am due to see the ED nurse again in February. Meanwhile I have been told to use Levitra when I want (and not to feel I should use it every day). I have also been told to use the pump as exercise every day. Overall I haven’t found that things have generally improved, although there are sometimes signs of life without any drugs. At the moment I am still patient and fairly phlegmatic but my wife and I are missing penetration.

The first appointment with the surgeon was in June when he told me that the operation had gone very well. The pathology showed negative margins and he was confident that they had taken out all of the cancer. I knew that the PSA test was the key measure but I was reassured by his confidence. I saw him in August with the PSA test result which was 0.13. He was a bit embarrassed and surprised. It was a shock to me and he suggested that there might a blip in the test or that there was some cancer left. So he ordered another test for me for eight weeks later. If this figure was also high then they would look to send me for a choline CT scan and I would probably then have HT/RT. It was a long 8 weeks till the next test result. This (in October) showed a PSA of <0.03, which the consultant believed meant that the first test result was a bit of a blip. He said to have another test in January.   I was very relieved and happy but my wife was worried that the second result might be the blip and the GP agreed to do another test for me. I had the result a few weeks ago and this also showed a score of <0.03.

So at the moment I think I have been very lucky so far. I am back to playing tennis two or three times a week and I walk a fair amount though I haven’t been on any long walks (to me over say six miles). I generally feel fine though I still feel generally a bit tired over six months after the operation and I’m surprised I don’t feel totally recovered. We often go to London for the day but I do find it more tiring than before. I feel stupid not to have gone to the GP earlier, which might have meant spared nerves and fewer ED problems.

The whole process has taken time but that’s because there have been lots of stages and I’ve been very impressed with all my contacts from the surgeons and urology staff to the hospital staff and the oncologist. I’ve tried to stay optimistic and take things a step at a time. If the cancer has been contained then the main job now is to sort out my ED but I’m happy to try various solutions including pellets and injections. I’ve also been lucky in having a very supportive wife who takes things calmly and doesn’t get too excited with a view of ‘we’ll get through this together’.

 

 

 

Edited by member 23 Jan 2016 at 15:27  | Reason: Not specified

User
Posted 30 Nov 2015 at 13:49

Hello clivepen
Just to say glad things are going well for you.

Your post will be of help to many on here so thank you for that.

I have no experience of the pump but I do know there has been some discussion on using the rings, so hopefully somebody else will be able to comment on that for you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Nov 2015 at 17:54
Hi Clivepan

Thank you for your very informative post.

It sounds like you have been treated well by the NHS.

I am one year younger than you but I was 60 at the time of my diagnosis and op.

With regard to the ED issue, I know how distressing this can be but it sounds to me you have done very well so far in the time since your op in May. It is still early days for you and in my humble opinion for what it is worth it looks like you have a good chance of recovery. I certainly hope this is the case.

It's also great you have a supportive wife. I am also fortunate in that area.

I hope your next PSA test will give you the result you are looking for.

Wishing you all the best with your recovery.

User
Posted 09 Dec 2015 at 22:06
Hello Clive

My oh had his RRP in Dec 14, nerve sparing on one side. He has had similar results to you on the ed front, although he is taking daily cialis. He has similar problems with the pump to you - no issues getting there, but staying there is a problem. He's given up on it.

We we to see our urologist privately a couple of months ago, as he also has continence issues. The urologist said that if he was getting some partial erections, this would indicate that his nerves are not permanently damaged, and may continue to repair for some time to come. He's trying injections - first appointment tomorrow

Fingers crossed!

User
Posted 20 Dec 2016 at 16:22

Thanks for the responses to my post a year ago. I thought I would give a quick update.

Overall I’m still very happy with my progress. My PSA results continue to be fine and I’m seeing the nurse now rather than the consultant, which feels good.

I still do my pelvic floor exercises every day (except over the last four weeks since I had a hernia operation) and I rarely leak. I have been using the pump most days as exercise and tried various pills and doses. I’m currently taking Cialis 20 mg as and when - usually once or twice a week. It generally lasts about 48 hours and I’ve found the side effects to be fairly insignificant. I can’t get a good erection without drugs but I (and more importantly my wife!) am happy with the Cialis. The only thing I am wondering is whether I might be better to try 5mg a day instead. I hope to get natural erections eventually but if not and the Cialis continues to be effective then I would still see this as a very good result.

The only niggle is that I still often feel quite tired and lethargic. I’ve been playing tennis but at around 80% of where I was before. I can walk only around half the distance I used to, and not so quickly. I still get very tired standing for a long period or wandering around London. I’ve spoken to the PCUK nurses and they are going to give me some fatigue guidance and support. It sounds a bit pathetic as it’s not heavy-duty fatigue but I am keen to shake it off and get back to my pre operation energy levels.

User
Posted 20 Dec 2016 at 17:21

Your post has made me feel very positive ... thank you

User
Posted 20 Dec 2016 at 20:58

Clivepen, great post. I think that fatigue is not well understood until and unless you actually experience it, and nothing to feel foolish or weak about ... It is very real.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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