Really Worried

 Hi Raymond,

With this particular problem I'd back the NHS being equal or above. Overall.

Your private care allowing for psa to get to 13 before action seems a bit slow ( if I am reading you correctly ). Or maybe you just chose to have a private scan rather than wait ?  No matter - action is underway.

 I'm also assuming the scan showed up a problem ?  I therefore read you as " suspected P.Ca ", at least until the biopsy confirms P.Ca.

Once you have biopsy results & know more where you are- potential treatments available will make more sense in what is best for you.

All this can be discussed here if you wish. There is a lot of experience here to draw upon.

Lyn wrote " On the other hand, we think it is worth shelling out £250 every three months for the reassurance of being able to talk to the specialist rather than waiting for hours in an outpatient clinic for the pleasure of 5 minutes with a trainee that hasn't read the notes. "

Must admit I've never found anything like this with my hospital. I rarely wait for long & accept that the person in front of me might need extra time & help. So any wait is justified with cancer clinics in my book.

All the specialists I have seen have been good & experienced. And able to draw on each others expertise easily.  Some have certainly gone an extra bit in my case, for which I'm very grateful. Different opinions can cast fresh light I've found which might be useful.

They have access to most types of treatment via interaction with other hospitals I ( if required ) quite often.

However, some folk do seem to respond better to private care with the privacy that can bring. If you have deep pockets & are happy to pay privately, then this may be your way forward. Just remember that after care will need sorting out with check-ups. I remember my mother did not respond well to being on a ward whereas my father accepted it better for instance. Usually, private ops do not include any aftercare package which is not true of the NHS where regular follow-ups are standard practice.

Best advice is to take one step at a time rather than trying to juggle many ( as yet ) unknown facts. 

.

Fair points from both but since my experience is based on three different men and a seriously overstretched urology clinic (my dad has never seen an onco and I think Stan only saw one once) rather than a cancer unit, I will stick with paying the £250.

Before John went private we had two delightful 3 hour waits in general urology without being seen because they forgot about him. I have always made the point on here that private is no panacea and that in our case it resulted in refusal of specialist nurse support.

All those years ago, Dad sold shares etc to pay for nerve-sparing because it was only a trial at that time and not available on the NHS. John went private simply to get access to the surgeon that had done so well by my dad and also John's mum. Different kettle of fish once salvage treatment was needed and we have been thrilled by the NHS onco and his department. But although the treatment was NHS we still pay to see the onco for routine checks and get reassurance from the horse's mouth.

Edited to say - Rob, as far as I can see, your hospital functions quite differently to ours. Neither Dad, Stan or John were ever considered by an MDT, for example - or at least, not as far as we know. I have nothing but praise for the oncology unit at Jimmy's which is a specialist centre. But the run-of-the-mill urology service provides now for an ever-widening segment of West Yorks, and staff/resources are over-stretched. Money raised from private work at the hospital is ploughed back into the research centre which appeals to my 'private-health-hating-but-willing-to-drop-all-principles-where-necessary' social conscience! 

Edited by member 29 May 2014 at 21:18  | Reason: Not specified

Our grandson was treated on the TCT ward at UCLH and the staff were wonderful. Couldn't fault any of it, especially the consultant who saved his life because his cancer was rare in youngsters (behind his nose and throat and inoperable)

My husband's care local hasn't been too bad.

We did have long waits and sometimes it felt as if we had been forgotten. They did bring forward a September appointment to May when they had already been informed we were away so we missed it.

Once I pointed that out they then redeemed themselves by everyone working together to get an appointment at the Royal London when John decided that he was interested in Brachytherapy. Although, having said that, it seemed as if it were the secretaries of the consultants that acted in our favour.

The Royal London, in our opinion, is exceptional. Others using the services there may well feel differently.

That's frightening! Anyone know the cost to the NHS for such an op?

Putting this together then; it seems research on your particular hospital may be useful.

Questions such as - will a MDT ( Multi Disciplinary Team ) be available from the start for instance.

Will a nurse be assigned to your case ?  That happened later on for me and is very helpful .

Will an ED clinic be available or not ?

Will one be transferred from Urology to Oncology according to circumstances ?  

Are other treatments available at linked hospitals if your particular hospital doesn't have those facilities ? If follow up treatment is required for example.

Maybe others here can think of other questions http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

One thing I don't think that has been mentioned so far is that you could if you so wish get a referral for a second opinion as all your histology with scans and diagnosis can be be put on a disc and considered by somebody else, although this can add to the delay to start treatment if early start is important to you. Naturally, it is likely that the hospital who have seen you so far will offer you the range of suitable treatments they provide. This may mean that they are not able to offer you all methods of surgery, all ways to administer radiation or provide HIFU if you are suitable and wanted to consider it. Hopefully, you are presently being cared for by a highly regarded Hospital but if not, in your situation I would want my treatment done at a leading hospital with highly experienced staff and advanced equipment. Some Commissioning Groups will allow funding for this as a NHS patient outside their area whilst some won't. If you are covered by insurance or prepared to pay the cost, this of course is not a potential obstacle. Although you often get the same surgeon or equipment when you are treated as a private patient as within the NHS, the former can help obtain earlier appointments/treatment and sometimes in a more congenial atmosphere.

I just wanted to ask if any of you had tiredness before your treatment started. My husband has never been a good sleeper but in the last few months he has to have a nap in the afternoon and always looks tired. He gets up at least twice during the night for the toilet and I think he's getting around 6 hours sleep at night which obviously is not enough for him.

Anybody else had this problem?

Many thanks

I have written to our MP explaining our plight as I felt I had to do something and wanted him to know that Welsh man have not got the option of having the surgery done robotically. Today I have had a reply and a form for Paul to sign so they can get a copy of his medical records. He did say he would look into this as a matter of urgency.......watch this space!

I will update you all when we know.

its a shame you have had to pay to see consultant
as its worrying enough your husband has PC without having to worry about money to get op done/see consultant
we are just over the border in herefordshire and didnt have any problems seeing consultant before op
hubby saw him in march was given choice of radio or surgery
what you want to know from consultant is how experienced he is?
more experience the better.
how long hubby will be in hospital?
do they do nerve sparing?
only diff between open and keyhole is length of time in hospital.
my paul is 5 weeks post op and nearly fully continent just a small dribble later on in day when he is tired
get hubby to start doing pelvic floor exercises.
will be thinking of you on tuesday
we go to see my pauls consultant on tuesday for his 6 week post op
best wishes

Edited by member 14 Jun 2014 at 10:45  | Reason: Not specified