Waiting for surgery but having second thoughts.

User

Posted 13 Apr 2019 at 15:13

LynEyre - The other hospital is just 12 miles up the road and is in the same NHS Trust. What difference do think that will make to the surgery date?

User

Posted 13 Apr 2019 at 15:30

Who knows - it depends on whether you were logged as having opted for RP when you saw the urologist (in which case they are going to miss the target anyway because your meeting with the surgeon is outside the 31 days) or whether they have logged it as a referral to discuss surgery with the surgeon, in which case the target will be a maximum of 31 days after you say to the surgeon 'yes, let's go ahead'.

If you have any planned holidays or important events coming up, the surgeon might talk to you about whether you want to delay the treatment. That stops the clock as well but is probably worthwhile. Our big regret here was not taking the surgeon's advice to go away and have a lovely holiday before the op - whatever happens with the short / long term side effects, your life will never be quite the same again.

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

User

Posted 13 Apr 2019 at 15:39

Originally Posted by: Online Community Member

The timeline targets are a bit of a mess, to be honest. NICE says you should have your surgery within 31 days of agreeing to go ahead with surgery, but in your case the 31 days probably won't start ticking until the 14th May when you see the other surgeon. Transfer from one hospital to another stops the clock unless they are both in the same clinical commissioning group (CCG) I think.

The 62 day target applies only if your GP or a screening clinic made an urgent referral to urology - but again, the clock stops if you are referred to a different hospital, or if you take time out to make a choice between different treatment options.

Sounds a bit like Brexit.

Pleased to have had the opportunity to make that point as this is one of the few fora where leaving the EU is rarely mentioned.

Surprised Hammond et al haven't come out with "PCa cases to triple if we leave the EU" as more Project Fear scaremongering!😉

Edited by member 13 Apr 2019 at 15:41 | Reason: Not specified

User

Posted 13 Apr 2019 at 15:45

We did think about going away before the appointment, sounds like good idea now, I imagine flying will out for quite some time after op.

User

Posted 13 Apr 2019 at 16:00

It's not just whether or not you will be permitted to fly (it is actually quite a short time - 10 days, I think) - the bigger issue is how long before you will be continent enough to travel comfortably, able to walk any distance, stay seated in an upright position for long periods of time, pull a suitcase, etc etc plus the need to keep any scar tissue out of the sun. Then you have to consider how the op may affect you emotionally; many cancer patients cope fine while they are preparing for treatment (adrenaline) but once it is over, can find themselves with very low mood or even depression, which makes a holiday not much fun for anyone. And then there is the matter of travel insurance.

If the surgeon says it is a good idea when you see him/her, then yes I would suggest you give it serious consideration.

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

User

Posted 13 Apr 2019 at 18:51

Not that it matters that much, but I'm giving golf a miss for now, going to take up Archery, way less costly and I don't have to worry about over doing the walking! Mind you having a Labrador, I do plenty of walking already.

User

Posted 13 Apr 2019 at 23:20

Originally Posted by: Online Community Member

Bollinge- I’ve already been referred to a surgeon, I have been told he’s highly regarded but I’ve no idea how many procedures he does in a year - short of asking him, I’ve no idea how to find out that information.

Ask him how many he does. You can also discuss his success rates both in terms of success with removing the cancer and minimising side effects. It’s your life in their hands

User

Posted 13 Apr 2019 at 23:42

I went to Australia 8 weeks after the op and could have gone earlier but I had a post op appointment 1 week before and to me that was a vital appointment that would say if my op was initially successful. I was ready to cancel whatever it might cost if I needed more treatment and had only booked deposits and moveable costs.

I was very keen to have the operation but from time to time felt concern about if it was the right choice. I've never changed my mind although reading on here it wasn't as cut and dried as I thought. Yet both the urologist and a surgeon said that with my diagnosis, which was upgraded after the op, it was the best decision.

I don't know the details of size, location of your tumour but mine was said to be near the edge so I was keen to get it done. Your psa isn't that high and your Gleason is moderate. If the surgeon is only going to chat with you in mid May you might try for an earlier date and ask about an earlier operation. I checked my surgeon on the British Association of Urological Surgeons webpage and read about him in private hospital websites so felt he'd got good experience. Keep focused on what you want.

User

Posted 14 Apr 2019 at 09:36

Never understood why the risk of side effects of surgery seem to be considered as worse/higher than other methods.

Possibly because the twin spectres of incontinence and ED loom large. While they are real, in the hands of a good, well-practised surgeon, the odds of a near full recovery ( certainly for continence) are very good. Also, it’s not as though the other methods are free of unpleasant side effects either, with incontinence and ED among them.

If you have a normal sized prostate then small-seed brachytherapy may be worth looking into as well.

However, for me, belonging to the “only good carcinoma is the one in the bucket” school of thought, getting it out while it was considered to be confined to the prostate was the way to go.

Wish you all the best in your decision making process.

Nick

User

Posted 14 Apr 2019 at 09:37

Peter’s place - Travelling to Australia 8 weeks after a major op is seriously impressive, I’m guessing you were reasonably dry by then which is in encouraging to hear. I’m amazed you could get travel insurance though, my usual company wouldn’t even take me on when they found I was under investigation, I’m guessing they’ve been stung by some very expensive claims for treatments abroad.

User

Posted 14 Apr 2019 at 09:42

Hi Nick,

My thoughts exactly, if they tell me there’s a good chance the cancer is still confined then I want it removed.

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