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How long is a normal wait for RP (robotic)

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User
Posted 23 Sep 2022 at 18:12

Hi there , I'm new to the forum so please excuse me if I'm going over the same thing .

I'm just wondering what wait times you have all been given or are awaiting from diagnosis to the actual op .

I've been given a date and it's 7 months from diagnosis . This seems like an awfully long time to me , but I have nothing to judge it by .

Would be grateful of other people's views . Thank you . 

Gleason score 4+3 =7 

User
Posted 24 Sep 2022 at 00:39

Originally Posted by: Online Community Member

I've been given a date and it's 7 months from diagnosis . This seems like an awfully long time to me , but I have nothing to judge it by .

 

That's shocking - the NHS target is that you should start your treatment within 31 days of telling them which treatment option you are choosing. Have they put you on HT while you wait? That would stop the ticking clock. Or perhaps have you opted to go out of area to a different hospital - that would also stop the clock. 

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

User
Posted 23 Sep 2022 at 19:09

Having seen many posts on this forum. I would have said three months pre-pandemic. With a few getting the op at about six weeks.

Post-pandemic six months is about average. It is a very slow disease and you have probably already had it for five years. You might consider HT to slow down the cancer if you are worried it is too long to wait.

Dave

User
Posted 23 Sep 2022 at 19:30

Got the result of the Biopsy mid May, which is when they actually confirm you have PCa, met the surgeon in June which is when I  went on the waiting list and nearly 3 months to the day later had a RALP.  I was told if I was treated as a day patient that would decrease wait times.

Edited by member 23 Sep 2022 at 19:31  | Reason: Not specified

User
Posted 24 Sep 2022 at 16:46

Hi Don!, what part of Wales are you from I'm Wrexham was diagnosed beginning of June , was referred to Glan Clwyd for a RALP where I was told they only had one surgeon so then told I would be going to UCLH London I have been pestering the Mcmillan Cancer people non stop at Glan Clwyd to try and get a date for the op, even the Mcmillan staff were running out of ideas because know one was replying. Like you said all this waiting is very stressful. I finally got my date last week and having the procedure this Tuesday 27th, have you been in touch with the patient liaison at the hospital?

User
Posted 25 Sep 2022 at 03:11
I agree this delay is most unsatisfactory. If you have not yet done so, I suggest you contact NHS Wales with a view to having your RP in England. Clearly, if there is a shortage of da Vinci machines/surgeons, the waiting time will be long in Wales. Sometimes you have to be persistent- had to do this myself in England, where I contacted PALS at my treating hospital.
Barry
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User
Posted 23 Sep 2022 at 19:09

Having seen many posts on this forum. I would have said three months pre-pandemic. With a few getting the op at about six weeks.

Post-pandemic six months is about average. It is a very slow disease and you have probably already had it for five years. You might consider HT to slow down the cancer if you are worried it is too long to wait.

Dave

User
Posted 23 Sep 2022 at 19:21

I was diagnosed on the 7th of Jan, meeting with surgeon on the 4th March, surgery 10th of May.

Im in Scotland, which hopefully shouldnt make a difference.

Hope this helps Don.

 

Jamie

User
Posted 23 Sep 2022 at 19:30

Got the result of the Biopsy mid May, which is when they actually confirm you have PCa, met the surgeon in June which is when I  went on the waiting list and nearly 3 months to the day later had a RALP.  I was told if I was treated as a day patient that would decrease wait times.

Edited by member 23 Sep 2022 at 19:31  | Reason: Not specified

User
Posted 24 Sep 2022 at 00:39

Originally Posted by: Online Community Member

I've been given a date and it's 7 months from diagnosis . This seems like an awfully long time to me , but I have nothing to judge it by .

 

That's shocking - the NHS target is that you should start your treatment within 31 days of telling them which treatment option you are choosing. Have they put you on HT while you wait? That would stop the ticking clock. Or perhaps have you opted to go out of area to a different hospital - that would also stop the clock. 

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

User
Posted 24 Sep 2022 at 12:46

Thank you .

User
Posted 24 Sep 2022 at 12:48

Thank you . Good luck with the surgery .

User
Posted 24 Sep 2022 at 12:49

Thank you . 

User
Posted 24 Sep 2022 at 13:03

Hi there  . I don't think anything stopped the clock . It just took so long to get the scans done and the results in . I honestly think that it would have been 10 to 12 months if I hadn't complained about the scan times and how long the results were taking to come back. Then last week once everything was in they mentioned December or January which would have meant an 8 to 9 month wait . 

To be quite truthful , I feel traumatised my it all. Most of the last 4 months have been spent chasing doctors , hospitals and radiology departments instead of processing what prostate cancer means ! 

We are in Wales if this makes any difference . I have a feeling we only have 1 robotic machine .Which absolutely stinks when you think about it .

I'm actually considering going to the papers about this whole escapade , as it just seems so unfair .If we weren't proactive (which not everyone is ) I would imagine people are waiting well over 6 months .

To top it all 2 local MP's have come out quite vocally in the press just yesterday and have said how wonderful the NHS has been. So unless I'm living in a parallel  universe something has gone dramatically wrong . 

By the way , I'm not disparaging the NHS workers and doctors , they are amazing .Just the situation. Many of the people I have contacted to hurry the process up have said how awful it all is .

 

Edited by member 24 Sep 2022 at 13:05  | Reason: Not specified

User
Posted 24 Sep 2022 at 13:39
Ah, that's your problem. Wales manages its own health provision. You are allowed to come into England for your RP - have you asked about being referred?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Sep 2022 at 16:46

Hi Don!, what part of Wales are you from I'm Wrexham was diagnosed beginning of June , was referred to Glan Clwyd for a RALP where I was told they only had one surgeon so then told I would be going to UCLH London I have been pestering the Mcmillan Cancer people non stop at Glan Clwyd to try and get a date for the op, even the Mcmillan staff were running out of ideas because know one was replying. Like you said all this waiting is very stressful. I finally got my date last week and having the procedure this Tuesday 27th, have you been in touch with the patient liaison at the hospital?

User
Posted 24 Sep 2022 at 23:57

I didn’t realise this was an option . How do I find out about this please. It’s alright for people to say ohhh it’s slow growing and you’ll be ok , but if it’s taken 5 years to grow to a 4 + 3 =7 . How much would it grow in an extra 7 months . I’m so angry . I just can’t help it. Thank you for the reply . 

User
Posted 25 Sep 2022 at 00:08

I’m going to try to get hold of them  Monday , if I dint get any luck I’m going to contact Wales online , as they were the ones who reported both the MP’s stories this week . By the way , I’m glad they are doing well and recovering . I just want to be in an even playing field with other people . When I mentioned to them about already being in the system for so long , they said I still have to wait my turn , but that means some  people in Wales who are lucky enough to get their scans done in a timely manner get it done quick , and the unlucky ones who are in an area where there is shocking que’s have to wait even longer . I’m sorry but Wales is in a right state with the NHS and nobody is kicking up a fuss  about it . Who would know unless we are in this position that we have so much prostate cancer sufferers and yet compared to England hardly any robotic surgeons , and I’m not sure how many Robotic machines , is it one or two . 

User
Posted 25 Sep 2022 at 03:11
I agree this delay is most unsatisfactory. If you have not yet done so, I suggest you contact NHS Wales with a view to having your RP in England. Clearly, if there is a shortage of da Vinci machines/surgeons, the waiting time will be long in Wales. Sometimes you have to be persistent- had to do this myself in England, where I contacted PALS at my treating hospital.
Barry
User
Posted 25 Sep 2022 at 16:22
For what it is worth, in my case (in 2015-16) it was almost 5 months from the cancer diagnosis following biopsy to the actual operation. In that time there was a meeting to break the news and supply more information than I could take in at once, another to have an informed discussion of options, and MRI scan and finally a planning meeting with the surgeon (oh, and Christmas happened along the way too). However after meeting with the surgeon I think the operation was scheduled in about a month.

I can see that if there are few da Vinci machines locally, and hence few surgeons with that expertise, that you may have to wait your turn - but it may be you could get treated quicker by open surgery.

User
Posted 26 Sep 2022 at 13:17

Thank you , I will do this now .

User
Posted 26 Sep 2022 at 13:41

I’m in south east England, received my diagnosis on 21st May 2022, Gleason 7 (3+4) T2c. Five days later I elected to have RARP and was surprised to be given a date for surgery of 15th June, three weeks later. The surgery went well and the post-op diagnosis was upgraded to 4+3. Seven months seems too long, hope this helps.

Tony

User
Posted 26 Sep 2022 at 23:37

Thank you for this information , it’s been most helpful . 

User
Posted 26 Sep 2022 at 23:39

Thank you for the reply , I hope you have recovered quickly . I have decided on robotic surgery , so will stick to this , as this was decided quite a while ago . Understand where your coming from though . 

User
Posted 26 Sep 2022 at 23:45

Thank you for your reply , I hope that you will be feeling on top form soon . Yes, I agree , that’s why I wanted to ask the question on here . I’ve had some very good advice and so far have acted on a sone of it this morning . The patients association was very helpful in looking at statistics compared to England and Wales , and recommending a few other things . It  just makes me so sad as the people who actually work for the NHS Wales  are fantastic ,it’s just such a horrible position to be in , and however many times someone says “you will be Ok “ it still seems that to wait this long even  if it’s about the fact that it’s mentally draining . It seems unfair . Especially when others with a lower score are being operated on at a much quicker rate . 

Edited by member 26 Sep 2022 at 23:47  | Reason: Not specified

User
Posted 27 Sep 2022 at 00:42
Be aware that in England there is a post code lottery when it comes to waiting times. Nevertheless, cases that are considered urgent will be given priority within local lists.
Barry
User
Posted 28 Sep 2022 at 22:15

Hi,

Seeing some of your wait times is disturbing. I got my diagnosis at the end of July and had already decided to go for the Robot Assisted job. I also selected a hospital that had the kit that was an hours drive away as it was highly recomended. I had a phone call from that hospital the following day with a date of adminssion for the 31 Aug. Literally 4 weeks and my diagnosis was not that bad. The surgeon and all involved were awesome and just cracked on. 4 weeks post op now and am so releived I had it done.

I can understand the frustration. Between confirmation that you have it and then waiting for action your mind is all over the place thinking all sorts of stuff. It is very stressfull and your life is literally on hold. Plus you are thinking how can it grow in that time frame etc; It has a huge impact on your mental health. Although you are told it is a slow growing cancer you are still stressed until it is out. I would be getting on to the complaints with the NHS. Even look at travelling to get in quicker. Ususlly only an over night admission. Another reason I went an hours drive away.

All the best to all who are waiting.

User
Posted 30 Sep 2022 at 15:10

Thanks for your reply , and great to hear your doing well. 

User
Posted 30 Sep 2022 at 15:26

Just a quick update on my radical prostatectomy operation wait time in Wales . Still in the position I was in last week. Only difference being I have now contacted my local PM to intervene .
I have the chance to go cross border to get it done within 2/3 weeks, but the local health board are not making a decision on whether they will pay for it any time soon.


After another conversation with my GP the day before yesterday , I now realise she referred me with suspected prostate cancer on the 1st of April , so we have been waiting 6 months just to get to the back of the queue to have a radical prostatectomy. This I have been told will take another 2 months . So 8 to 9 months in total. It's just heartbreaking!

To say I'm annoyed , frustrated and worried is the understatement of the year . It hasn't just been the physical aspect , it's the constant begging for scan results, worrying over the fact that they kept telling us we had to wait up to 7 weeks for each scan or biopsy , and then another 7 weeks or more for the results then not sending letters out on time to the main hospital. It's put a tremendous strain on my family life and still is.

I told my MP that it is not a fabrication of the truth to say if you live in Wales and have to have scans for Cancer , you could die waiting .

Just a rubbish situation all round really.Sorry to have a moan ! I hope you are all doing well, and I really do wish you the best .

Edited by member 30 Sep 2022 at 15:28  | Reason: Not specified

User
Posted 01 Oct 2022 at 01:43

I hope you get sorted soon. I also hope you fix NHS Wales. Do remember healthcare is devolved, your MPs have made choices about where to allocate funds, everyone in Wales gets free prescriptions, but it seems the price may be a lack of surgeons.

Dave

User
Posted 01 Oct 2022 at 13:16

Yes, I agree that’s why I’ve contacted my MP , who agrees that it it way too long to wait . If it highlights some things that are happening here , it will do sone good , but that still doesn’t help the torture of waiting that we are going through . 

User
Posted 04 Oct 2022 at 09:47

After my Gleason moved from 6 to 7, I agreed to surgery. That was on May 10 this year and two weeks later I was offered a date for surgery the following week. I had the op on June 1.

I don't know if it helped that I indicated that I could be available at 30 minutes notice - I live 10 minutes from the hospital.

I live in Cardiff - Cardiff and Vale University Health Board, so this isn't the case across the whole of the Welsh NHS despite the bad press it gets - mostly thanks to the Welsh Conservatives talking it down on a daily basis.

 
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