Surgery choices

User

Posted 07 Nov 2016 at 20:57

Hi,

I have just been diagnosed, PSA 9, Stage T1c, Gleason 3+4, 9 out of 12 cores 50%. I was diagnosed Friday (3 days ago) and the consultant has advised me to go ahead with treatment as I am (only!) 54. (First time I have been called young in a while :-).)

I have been told there is not a particular rush as my cancer is localised and relatively non-aggressive. I am now in the process of deciding which treatment to go for, I will have appointments with the surgeon and oncologist shortly.

I think I have more-or-less decided on surgery for the following reasons. First reason is that surgery is often not possible after RT. Second, I like the thought that the cancer is cut-out and that none (or very little) of the prostate (and therefore cancer) are left in my body (hopefully). Also I feel that the operation may be less disruptive to work, but I do acknowledge that RT may be required after the op.

What I would like to ask is of peoples thoughts on the treatment options, especially the pros and cons of different surgery (open vs keyhole vs robotic). I have read all of the leaflets so I do know all the standard pros and cons, I just wondered if anyone had anything extra to add to help me make a choice.

Thanks in advance

Mark

User

Posted 08 Nov 2016 at 23:00

Bear in mind that if you go private you may have problems getting back into the NHS services for aftercare etc. We paid ourselves - cost around £18000 for the op and about £500 per consultation & PSA every 3 months for the last 7 years but John was lucky and got the salvage RT and referral to the ED clinic on NHS. Others here have not been so lucky and found that incontinence clinic and ED clinic were not available to them because they had 'opted out'

Jan/Feb seems good timing - you can at least have a normal healthy Christmas rather than being poorly or in pain or not able to go out/have a drink etc. Plus the hospitals work on a skeleton staff over Christmas & new year and I wouldn't have wanted to be looking after John with no access to the professionals if there had been any problems. J was diagnosed at Christmas and then the whole department closed down for two weeks which left us panicking and isolated.

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

User

Posted 08 Nov 2016 at 13:39

Hi Mark,

I was diagnosed in January with PCa (Gleason 6, PSA 5.9 and rising, age 41). I went round in circles as was offered all the treatment options. I initially decided to have brachytherapy and was referred to Cardiff. The consultant there kindly arranged for me to get see both the radiotherapy and surgical consultants which really helped. Given my age (again never been called "so young" so frequently) they both recommended surgery. I had a robotic prostatectomy at the end of July and I'm glad I opted for this in the end. I've managed to avoid RT completely and have already had the all clear. The biopsy of the removed prostate showed about 12 different tumors with the largest at the margin so I'm now glad to have chosen surgery and not waited any longer. I managed to get full continence back a week after the catheter was removed and have some erectile function back (the consultant stressed that ED would be a problem for atleast 6 months after surgery).

I'm not sure this will be much help to you as I'm sure everyone will have different experiences of each treatment pathway chosen but I would have been lost without this forum so wanted to help if I can.

Andrew.

User

Posted 08 Nov 2016 at 16:38

Read your message with interest. My husband was diagnosed in September 2016, with Gleason 3+3, PSA 4.6 and an MRI staging of T2a/T3a. He is 65. After reading and talking to so many people he decided on a robotic Prosectamy. His surgery is on 15th November. He was so concerned about suffering with incontinence but after reading your very positive account of your experience - he has become more positive about having his surgery. Thanks for that. Susan.

User

Posted 08 Nov 2016 at 21:54

Maybe I was lucky. Da vinci op. Catheter in 7 days. Used only 1 pad. Dry next day. Only a few drops for about 4 weeks if I got up very quickly or laughed. If fact last 18 months far better flow and very occasionally I think Ive leaked. Ie digging garden, lifting heavy loads etc.. However haven't., it must be controlling nerves given false signals. So think positive and fingers crossed. I assume it's down to the skill and dexterity of the surgeon. The only difference is I tend to get the 'signal' to empty a lot earlier than pre. op. Which I tend to ignore, I go about 6 times a day depending on hydration, heat etc and very very seldom get up a night. As pre.op. ie see profile. I had no symptoms. I did my kegels and still do when I remember. .. wasn't all plain sailing has a bladder spasm or maybe a clip moved or passed .. as pain was 10 out of 10.. fortunately lasted overall less that half a day. You may experience bladder pain 48 hrs after op. or spasm which can be excruciating. . Lasts about 1 minute. I likened it to severe leg cramping when I played football, only problem you can't massage or stretch it. . !

User

Posted 09 Nov 2016 at 09:53

I am at present awaiting a biopsy so until I get a diagnosis I can only research ahead of the game. If it is localised I am seriously looking at proton therapy. This treatment is not available under the NHS but worth looking into before any important decisions are made. There are various websites about proton therapy and in particular the proton clinic in Prague is worth consideration. I look forward to hearing your progress as I am a few steps behind.

User

Posted 09 Nov 2016 at 10:49

Hi Mark

I had a robotic prostatectomy on 10 October 2016. I was happy to wait 13 weeks for my op having participated in a clinical trial aimed at finding a vaccine for early stage prostate cancer. An MRI before the trial confirmed that my cancer was contained within the prostate. This convinced me that I did not have to rush things, PSA tests at 2 weekly intervals whilst on the trial confirmed that the levels remained around 10 to 11.
My catheter was removed after 2 weeks, and 4 weeks later I feel that I am around 95% continent, just a little leakage in the evening when the controlling muscles get a little tired!
Two months will go by fairly quickly , enjoy Christmas and all the best for the new year and a speedy recovery from your surgery.

Brian.

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User

Posted 07 Nov 2016 at 23:07

We went for open for a number of reasons:-
- the surgeon, who is one of the leading people for robotic, felt that in John's particular case getting in and feeling around was going to get the best result
- statistics say that the chance of permanent ED is greater with keyhole than with open and at 50, J was pretty keen to avoid that problem if possible
- J had previously had abdominal surgery (appendix removed) and scar tissue makes keyhole surgery more difficult
- there was a question mark over a lymph node but at our hospital the nodes are not removed during keyhole, only open
- it is (usually) less time under GA to have open surgery

I know that at some hospitals they do remove the lymph nodes during robotic.

The estimate is that you may need to be off work for up to 12 weeks after open surgery, and 6 - 8 weeks after keyhole.

The debate about surgery followed by RT v RT followed by surgery is a bit of a misnomer. Statistically, if you need follow up treatment then the outcomes are likely to be not so great so it is more important to choose the treatment most likely to get you to remission first time. John rushed into surgery and then had to accept a couple of years later that it had failed. Dealing with double the side effects seems a bit crazy and he wished he had just gone for the RT straight away ... but hindsight is a wonderful thing.

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

User

Posted 08 Nov 2016 at 07:24

I seem to be one of the few people on this forum recently who had keyhole surgery but performed by hand rather than robot. I also have a very poor set of post op results not seen for a while. However rather than it being my surgeons lack of skill I think it was more trying to shut the gate after the horse had already bolted. It does seem a large number of men end up having RT a while after surgery anyway. Naturally I wish I hadn't had the surgery , not only because it was too late but because I am now impotent. Effects of RT can take upto 2 yrs to surface , giving you maybe 2 yrs of some normality.

User

Posted 08 Nov 2016 at 13:39

Hi Mark,

Andrew.

User

Posted 08 Nov 2016 at 16:38

User

Posted 08 Nov 2016 at 21:54

User

Posted 08 Nov 2016 at 21:54

Thank you all for your replies. I am almost certain about having surgery, but I am not looking forward to the side effects. I have been reassured that have plenty of time, but I am still not convinced that I shouldn't have the op sooner. I was diagnosed Friday, am waiting to see the surgeon and oncologist and then should make a decision, and then within 1-2 months should have the op/treatment.

That will take me into Jan-Feb next year - seems and awful long time after diagnosis. I have questioned them about it and they dont seem concerned, The arguments were:-

My MRI showed nothing, an aggressive cancer would normally have showed up on MRI so this is a good sign.

My gleason is relatively low 3+4, 9 out of 12 samples showed cancer, 8 were 3 and one was 4.

I had PSA tests in July and September, both were 7, which is fairly low and unchanging.

Still not sure I want to wait that long for the op, may explore options of going private.

User

Posted 08 Nov 2016 at 22:28

Hi Mark

Timescale is about 'right'. Mine was 3 months . Nov to Feb. It does give time to mentally and emotional adjust. Also get fitter if possible - all helps. Would private give access to a 'better' surgeon or is it luck of the draw in many ways. Incidentally I was only in one night and they were even talking of just a day visit. Without my wife at home it would have been quite difficult, even though I was up and about every day. ie you shouldnt drive for 4 weeks and took me a while to bend , get socks and shoes on , etc ie the routine simple procedures you take for granted. Awkward getting into and out standard bed for a few days. Other than blood thinning injections self administered which seem the norm now I was on zero medication. Apart from a good dose of laxatives that were desperately needed ...

User

Posted 08 Nov 2016 at 23:00

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

User

Posted 08 Nov 2016 at 23:01

PS robgsr was lucky - some car insurance companies will not cover you for 12 weeks post op

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

User

Posted 08 Nov 2016 at 23:09

I'd agree about the comments regarding timing - 4 to 8 weeks isn't going to make any difference. Have a good Christmas and get mentally prepared. One thing I would add though, reducing incontinence issues does seem to be down to having good pelvic floor muscles, the sooner you start these exercises the better.

User

Posted 09 Nov 2016 at 09:53

User

Posted 09 Nov 2016 at 10:49

Hi Mark

Brian.

User

Posted 09 Nov 2016 at 21:10

Thanks again everybody, it's nice to hear from people going through the same as myself.

The thing that is making slightly twitchy is that 9 out of the 12 cores contained cancer, and the highest proportion of cancer was quite high (50%).

I am almost certainly going with surgery, but has anyone gone the RT route and can tell me first hand it's pros/cons from a patient point of view?

BTW apologies, on my opening post I got my PSA wrong, it was 7 not 9, my first test was in July and the second in September, and both were the same.

Mark

Edited by member 09 Nov 2016 at 21:15 | Reason: Not specified

User

Posted 31 Jan 2017 at 19:24

Had robotic surgery 4/1/17 in Leicester and I was told it went well .

Had catheter removed yesterday ( what a relief:) apart from a couple of dribbles while sneezing and passing wind and sore end of my Gentlemans sausage it doesn't seem too bad but I do appreciate it's very early days and the nurse has said my 7 holes in my stomach are healing nicely.

I'm 55 and my psa was 3.7 and my gleeson was 3+4 before op . I'm meeting surgeon in march .

All the best to you

User

Posted 01 Feb 2017 at 21:50

Hi,

I had the surgery in the end, but back on 7th Dec in Coventry. I am well on the road to recovery with continence, but unfortunately there was no nerve saving during the operation, so I have ED to contend with.

Post op results were:-
PSA - undetectable
Gleason 3+4 (the same as before op)

The surgeon said that the cancer had penetrated the prostate capsule, but was within the surgical margins, so they believe they have got it all. However this makes it slightly more likely that the cancer will come back.

You sound as if you have a very similar prognosis to me and the same age.

Hope all goes well in March

User

Posted 02 Feb 2017 at 08:39

I am 61, psa was about 12-17 50% of my cores positive all on one side.

Opted for RT, IGRT actually. Didnt fancy open surgery, fears of incontinence and MRSA etc. I did seven and half weeks RT at Worcester hospital, and all went well. Few side effects from RT, tiredness bit of cystitis, but nothing much . Worked every day during and had 2 months off to recover from fatigue after.

Many more options to look at, the new proton thing will be out soon.

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