Really Worried

Although not having had a RP (RT many years ago) I do have incontinence problems so I can understand the concerns your husband has. I also can't empty my bladder and consequently am often caught short sometimes just by the act of standing up. HOWEVER all is not lost and I have learnt to live with it and moreover it has not restricted mine or my wife's life style one bit. If I am going out I wear a pair of "M savers normal incontinence pads" from Asda, these are a fully absorbent pair of pants that I wear under a normal pair of pants. Can I also point out that sometimes I have a bowel problem when again I can be caught short...believe me this is far worse. Only last week on a cruise (living life to the full) I was caught short and couldn't get to a toilet. Having got back to our cabin these pants had held everything with nothing even coming through to my normal underwear. Obviously not something that you want to happen on a regular basis but it does show you how good these things are.

Finally you can get a "Just can't wait" card that says "The holder of this card has a medical condition which requires the urgent use of a toilet".......PLEASE HELP

You can get this through www.incontact.org

So my message is, Yes it's not the best thing since sliced bread but it's not the end of the world.

Life is for living

Barry (alias Barrington )

Edited by member 29 May 2014 at 14:32  | Reason: Not specified

Hi Wendy,

It's not so much the difference in types of operation that one considers regarding incontinence & erections.

The two main points are;

1) Does the diagnosis prove accurate in that there is no spread found during surgery and therefore the erectile nerves can be spared from surgery. In other words, if the surgeon finds unexpected spread during either type of surgery, he may see fit to remove nerve bundles. This might be on one side only though. You should of course request nerve sparing surgery if possible.  It sounds as though it is likely nerve sparing  from what we know .

2) Incontinence usually boils down to surgeon skill and perhaps a bit of luck. Remember, under either method that regaining continence can take months in some cases. Either way, there is a risk albeit low.

Open surgery usually means a bit longer in hospital as the incision is larger. With the  robotic,  one is usually discharged the next day. But you still have the journey home which needs planning if a distance.

With four positive cores I'm more doubtful your consultant would be happy with Active Surveillance.

Hi Wendy I had robotic surgery on 31/03/14, similar score to your husband I had PSA 5.8 gleason score 3+4 = 7 on day of OP surgeon advised if he could save nerves he would, but advised would take all nerves to get rid of cancer. After OP he said all went well was pleased with way OP went, he advised he had to take right side of nerves along with right lymph nodes as he thought 6% chance of cancer in nodes. I had catheter out 10 days after OP very concerned at time as incontinence was quite bad, I am now 8 weeks post OP incontinence has improved greatly only wear 1 pad a day now so have good control, also starting to get erections which is a relief. But as others have already advised the skill of the surgeon is paramount to success of OP.  I am going for follow up on OP next wednesday 4/06/14 to see how successful OP was, so will be worrying time will keep community informed, if I can help in any way just ask. Good luck in days to come know how stressful it is when first diagnosed.

All the best

Frank

as others have said, the data suggests that outcomes are the same for keyhole and open RP in terms of continence, impotence and recurrence. The big difference is in inpatient time and recovery time from the actual op. There are other things to consider as well as the expertise of the surgeon - even though robotic surgery was available to him my husband chose to have open RP for a number of reasons:

- at our hospital the lymph nodes are not removed in keyhole RP and he had a suspect node which we wanted on a petrie dish just in case

- he had scarring from previous surgery (had his appendix out a few years ago) which makes keyhole RP more difficult

- the data at our particular hospital indicated that more men were impotent for longer after robotic than after open

- the surgeon felt that in John's case, he had a better chance of avoiding nerve damage if he could get his hands in properly!

Four years on, John is continent and there is no physical impotence although there is still some emotional baggage which is helped by tablets.

In your situation (not ideal, I know) I would think very carefully about the implications of having to travel a long way for treatment - clarify who will pick up the aftercare, consider the fact that he will continue to need PSA tests for many many years and that keeping contact with the surgeon who did the op is invaluable reassurance, will you have access to ED treatment in Wales even though you have opted for surgery in England, and so on.

I had my Open RP 8 years ago, in fact it's exactly 8 years this Saturday. Robotic surgery at the time wasn't an option, in fact I'd didn't even know that it existed, so having to make such a decision wasn't something that could play on my mind. But saying that I never suffered a single day of incontinence. The ED side in my case is another issue, but given that the Cancer was not contained I'm happy to live with that small price to pay and still be here today. The ED can be over come by a little help through various means, if your into that sort of thing.

I think the key, as others have said is the skill of the surgeon. I know I was very lucky in that respect.

Cheers,

Stu

Wendy, if it helps your husband to clarify his thoughts tell him about my father in law. He was diagnosed with similar stats to your OH but decided to decline any of the radical treatments because he was not willing to risk ED and incontinence and he refused HT because he didn't like the idea of man boobs, loss of muscle and lack of libido. He lived for only 4 years.

Now, in his case it was the right decision (not for us who miss him terribly but right for him) and he crammed an awful lot of adventure & memories into that time - but for your OH? Would he be happy with only another 4 years if he could instead get rid of the cancer and live for another 20 years with a tiny bit of a dribble when he sneezes?

However the RT that we had at Velindre was very different and a very caring supportive service. In hindsight we wished that we had gone to a London Private Clinic for the op, afterall if you are going to pay for it, might as well have the best. Of course it depends on your financial circumstances, but if you could co-ordinate you op in Bristol or London and your aftercare in Wales that would be best.

My understanding is that it is possible to do this if you speak to the Consultant (and co-ordinate things through his secretary and your GP). Good Luck.