Sadly joining this group

User

Posted 13 Nov 2018 at 23:51

I might be naive but where I live I have more confidence in the NHS hospital than any nearby private hospital. There's a massive amount of back up and support in the big NHS hospitals. The staff at both of the big hospitals I attended were always very helpful and it seems from reading on here that our area is very good about what they offer you.

In our area it seems the surgeons work in the NHS by day and work privately after. Whether that's for urological as well I don't know. But I had a private skin cancer op at 5.30pm using the consultant surgeon from the local hospital. When I had an NHS similar op they had about 6 people in the threatre but the private one had the surgeon and one nurse and that meant most of the back up staff had gone home.

User

Posted 13 Nov 2018 at 23:59

Yes, and private hospitals can’t deal with all medical emergencies so I noticed when I had an op earlier this year (at a private hospital under the care of the NHS) that part of the consent form is an explanation that they might have to transfer you to the nearest NHS hospital if it goes wrong.

Nothing is straightforward :-/

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

User

Posted 14 Nov 2018 at 19:19

Latest update -

Went to see the consultant today, only to be seen by his registrar, bit disappointed at first but he was actually ok. He answered all of my questions, I learnt that there was 24 samples taken and only 4 showed cancer, the Mri Pete had was indeed a MpMRI, his PIRAD score was 5, the cancer on one side is right up against the capsule, which is making it a T3a, they will try to spare the nerves but won't know if they can until they are actually in there, they reluctantly agreed to a bone scan, although they do not think the pain in Pete's arm is related to prostate cancer, they are intending to cure with surgery and hope to not need R/T afterwards.

I think that was pretty much it! they did say both outcomes were similar and it would be down to which we preferred and which side effects we could put up with the most, tbh I think it sounds like both options have similar side effects.

So Pete has opted for surgery, it will be around xmas time or beginning of January, quite a few weeks to wait which I'm not happy about, what about this 31/62? Is there anyway we could get this brought forward? He did say it wouldn't spread in the meantime, but how do they know that?

So that's where we are tonight! we're both absolutely exhausted.

Do you think this all sounds right?

Thanks for any help

Michaela

User

Posted 14 Nov 2018 at 20:30

Well done Michaela for obtaining a bone scan. It seems to be standard here in Coventry with a PCa diagnosis but as Matron points out, it apparently it is not always the case in other hospital trust areas. It’s shocking to me that there is a post-code lottery regarding many treatments and scans.

It’s supposed to be the National Health Service, not the bloody Local Health Service ‘for Local People’! I personally wouldn’t worry about a few weeks delay to surgery - but then I haven’t worried about my whole PCa thing anyway. But I know you will!

Sounds like the Registrar did utter some magic words equivalent to “With curative intent”, as they tend to put it.

Try and be positive and consider that with luck by next May, Pete could be free of cancer and side effects, and you can hopefully put it all behind you and get on with your lives.

P.S. What is 31/62? Is it some kind of timescale for treatment?

Best of luck with your way forward.

Cheers, John.

Edited by member 14 Nov 2018 at 20:34 | Reason: Not specified

User

Posted 14 Nov 2018 at 21:23

Thanks John, I hope we're doing the right thing, I think we are and more importantly Pete chose this so I am behind him 100% I'm sure you're right about the few weeks not making a difference, it's just that they said the same about my nana and her bladder cancer, it was supposed to be contained and then turns out it wasn't after the operation. So I'd like it done quickly if possible.

The 31/62 is the cancer waiting times, tbh I don't fully understand it myself, not sure if it means they have 62 days from gp referral to first definitive treatment. If so this would definitely mean we are going to breach! however I'm not sure what can be done about it? any help on this would be appreciated.

Yes the bone scan was hummed about, they didn't think it was necessary with the low PSA and G6, but Pete insisted he was worried about it, so a bone scan it is. I was reassured when the consultant said it wont be related to PCa.

I also asked if we were to see an oncologist would they push their R/T pathway over surgery, I didn't get the feeling we were being led down the surgical route, just because we were seeing a surgeon, it all seemed very neutral and what was best for Pete.

Thanks for your best wishes, you know me too well already, I will worry!

Michaela

User

Posted 14 Nov 2018 at 21:40

Forgot to add that curative intent was mentioned many many times!

Thank goodness https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-laughing.gif

User

Posted 14 Nov 2018 at 22:01

This was like myself,first,I was told the operation would be in 4 to 6 weeks,then it went to more 8/9 weeks.I won't lie,I am not one of life's coper's,My nerves were shot,not sleeping,panic attacks etc,I just wanted this thing out of me,after making enquiries,I discovered that I could have the operation done in two weeks,at another hospital,an hour and half away,and the same surgeon would be doing it,and my after care would still be at my original hospital,it was a no brainer for me,so had it done saturday afternoon,and was discharged ten o clock the next morning,whilst obviously dont know full results yet,mentally,I feel amazing

User

Posted 14 Nov 2018 at 22:13

Glad you’re feeling good Dave, I can imagine it’s such a relief to get rid of it.

we would be interested in moving to another hospital if they had a shorter waiting time. Who would I contact to see if this is possible?

thank you

User

Posted 14 Nov 2018 at 22:54

This all sounds normal. My cancer was on the edge of the prostate, I didn’t have a bone scan but it’s definitely a good thing to get it.

The waiting times are frustrating but hopefully the surgery will cure him.

Hang in there. Fingers crossed the bone scan is clear. I eventually had one in March 2018 and it was clear.

Best wishes,

Ian

Ido4

User

Posted 14 Nov 2018 at 23:02

31 days from the day you choose which treatment you want - but it is only a target and many NHS trusts don't meet it.

If you change hospitals, all targets go out of the window and the clock stops ticking. The second hospital is under no obligation to treat you in a certain time frame.

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

User

Posted 15 Nov 2018 at 08:45

It all came about because I rang my hospital to ask if there was any update, on when my operation would be,I explained to them,that,I knew that I was being irrational,because they had explained,that a few weeks wouldn't make any difference,but in my head,it was running rampant through my body,they straight away said,if I was willing to go to a different hospital,it could be done in two weeks,and,go back to them for after care,I didn't need asking twice,the next day the other hospital rang with qppointment for pre-op 10 days after,and operation 14 days,and it would be the same surgeon

User

Posted 16 Nov 2018 at 22:04

mine didn't work like that lynn,it was my hospital that arranged it for me,I wasn't under any obligation,until they gave me a date,and even then,i was told,that I still remained under my present hospital,in fact,the day I came home after my opertation,my usual hospital,had already sent me appointment for catheter rempval,and follow up appointment,they appeared to work together,and one was in yorkshire,and the other in Lancashire

User

Posted 16 Nov 2018 at 23:47

Yes but the two hospitals work together under one trust and you stayed under the same surgeon I think?

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

User

Posted 20 Nov 2018 at 18:57

After speaking with the appointment clerk Pete's RP is booked for 6/1. I'm struggling to accept this length of time to wait, petrified of this thing spreading. The appointment clerk couldn't really help me when I asked her if we could go to another hospital, so I called the Secretary, she wasn't there, so have to call back tomorrow. Do you think they sort the dates for the op's out by how serious the patients results are? I ask this because the appointment clerk gave the impression that Pete couldn't be moved forward because there were other people in front of him, which of course is fine and fair, but if some of the other patients haven't got as bad results then it doesn't seem right? It will be 11 weeks and 3 days since the actual biopsy. and 8 weeks since we were told the results. So much for the 31/62.

Any thoughts or suggestions are very welcome.

Thank you

Michaela

User

Posted 20 Nov 2018 at 19:38

Hi
If it's any consolation I was diagnosed in March and finally had surgery in June of that year ( 2014 ) ...a total of 12 weeks from from diagnosis
( Click on my profile to check the details )
The consultant told me I could have a holiday in the caravan for a month or so and come back in August / Sept ...He didn't seem too concerned...but it wasn't him that had the cancer was it!
I wanted it out asap... so declined his offer of a few months grace...
So far so good for me... but I don't think a few weeks here or there will make much difference to your hubbys outcome ...but I know full well how anxious you both must be feeling... I've been there and got the t-shirt as most on this site have..

Best Wishes
Luther

User

Posted 20 Nov 2018 at 19:55

Hey Luther, thanks for your reply. I checked out your story and I'm so pleased for you, I'm hoping we can have the same outcome.

I'm starting to notice how nearly all stages and scores are upgraded after the surgery, so why on earth are these surgeons telling people not to worry, take a holiday, we'll see you in 3 months etc, when most cancers are upgraded? It just doesn't add up.

it's okay getting the urgent 2 week referral from the GP, but it's when you hit the hospital all the waiting starts. Don't get me wrong we love our NHS and the treatment we've had so far has been excellent, it's just the amount of time we spend waiting.

Thanks for your kind wishes,

Michaela

User

Posted 20 Nov 2018 at 21:25

I Really do feel for you both,sounds just like myself no matter how many people tell you how it's a slow growing cancer,it's of no comfort,I knew I was being irrational but I couldn't get my head round this alien thing inside me I really did feel pathetic,it doesn't help like you said when you read how many people's were upgraded,after surgery,I'm afraid,I can't offer any comfort,only to tell you,you are not alone,many feel the same way as you,today,I had my catheter out,what a relief,the nurse also took my staples out,because they had already started to work themselves out,just got to see what the incontinence is like,but I'm armed with Tena pants,appointment for results in 6 weeks.going to try and relax till then

User

Posted 20 Nov 2018 at 23:36

Yes pursue it. You never know your luck. I was told by 3 people my op would be mid-January but on opening the door to leave I said to the surgeon a bit tongue in cheek I was available for the op tomorrow if he could fit me in. Strangely I saw a flash cross his eyes and the day after got a call saying the op was a week before Christmas, 10 days later, because no-one else wanted one that close to Christmas. I often wondered if me saying that made a difference or what. I had been very time oriented right through whereas some patients and my medical staff are more interested in getting it right and getting the surgeon and equipment of their choice.

6th Jan isn't too far away and it's a Sunday. If you could get mid Dec it would be worth trying would be my belief through whatever contacts you have. I'd wondered how much I'd pay for how much time saved and possibly 3 weeks would be stretching it but hard to say. I wouldn't jeopardise the date you have though.

Edited by member 20 Nov 2018 at 23:40 | Reason: Not specified

User

Posted 21 Nov 2018 at 11:16

Well Michaela, at least you have a date and by next May with luck your old man could be fully recovered and cancer-free.

Of course it’s worthwhile ringing the surgeon’s secretary once or twice between now and January, and let it be known you’ll accept any cancellation at short notice. Sometimes operations are cancelled or postponed because the anaesthetist doesn’t want to take the risk if there is any hint of infection or high blood pressure, etc., when the patient goes for his pre-op testing.

In my own case my raised PSA was discovered last November, but my surgery was not until the following June. I set the timescale as I wanted to research all options, and my cancer was only intermediate grade G4+3=7, so I was in no haste whatsoever. If I was G9 or G10 I might have had a bit more sense of urgency!

Put 2018 down to an annus horibilis and look forward to 2019!

All the best.

Cheers, John.

User

Posted 21 Nov 2018 at 12:44

I think the general rule with PC is that a delay of weeks is ok but a delay of months/years is not.

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