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Prostatectomy waiting time

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User
Posted 01 Jun 2023 at 15:04

One thing that's been bugging me and causing some anxiety was when I met the surgeon and agreed to go on the waiting list for the prostatectomy I got a timeline/estimate of 6-8 weeks and the possibility of earlier if there were any cancellations. We got to 6 weeks and I'd heard nothing. So then I phoned and was told to have the surgeon I met with, the earliest date they could give me would be another 4 weeks, so a 10 week wait in total. I provisionally chose to go with another surgeon as I could get the surgery a week earlier. 

I'm baffled how on earth could the surgeon I originally spoke be out by two weeks surely he knows the waiting times for his own patients! When I spoke to the Urology Admission Co-Ordinator all she could offer in the way of an explanation was surgeons can only give estimates. Well that's what I got to start with and they've added to that.

Is this normal? BTW I'm in Sussex

User
Posted 02 Jun 2023 at 06:53
It's not been normal to prescribe HT to men awaiting surgery. Prostate cancer is very slow-growing, and if the cancer is wholly contained within the prostate, HT really serves no purpose if the prostate is shortly going to be removed. It really only started being done when long delays for surgery were experienced due to Covid.

If cancer has been there for years, or even decades, as is usually the case, waiting an additional few weeks for surgery has no impact on the outcome.

Best wishes,

Chris

User
Posted 02 Jun 2023 at 12:32

Okay that makes sense. In my case it's borderline and my Urologist has recommended removal over RT as I'm in my 50s and there is a risk of it returning. I'll only know for sure what the margins are when it's removed and they have a look at it and can tell how well it's been contained. I am going down the route of the Da Vinci method.

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User
Posted 01 Jun 2023 at 16:41

Hi Gerry

My OH had biopsy 6th Jan, results two weeks later by telephone with promise of appointment to discuss in 4 weeks. We then got an appointment for 26th May. We did push for something earlier and got to see consultant on 6th April agreed on RP and was told of a 4 week wait. We then got an appointment through for 6th June - this is a meeting with another consultant who has taken over - so a repeat of our appointment in April. So we are no further along....

So, I think I'm just trying to reassure you the chaos in the NHS seems to be everywhere. There are also more strikes this month which I'm sure will have an impact. 

It can be really stressful being left in the dark and the waiting seems endless. 

I really hope you get your appointment soon 🤞

Vicky

 

User
Posted 01 Jun 2023 at 16:49
Thanks Vicky for you reassurance. It seems like I'm being impatient, I'm not. I was diagnosed back in October 2022. All scans were completed by end of Nov then there was a question mark over a scan showing an uptake elsewhere in a very unlikely location and between the MDT and an external hospital they eventually came to the conclusion that they would need a biopsy and this was done in March! Finally in April a meeting with the Urologist and RP was agreed, then a meeting with the surgeon 2/3 weeks later who stated there would be this 6-8 week wait.

Sometimes things seem to move along surprisingly fast then other times you feel like you're being forgotten.

User
Posted 01 Jun 2023 at 17:04

Gerry, the Bicalutamide should stall the growth of the cancer. I have been on this journey for nearly ten years and I have learnt to be patient. Hope all goes well once your treatment gets underway.

Thanks Chris 

User
Posted 01 Jun 2023 at 17:05

Hi Gerry

Not impatient at all  - like us I'm sure you find the wait and lack of information stressful and difficult. Sometimes just a letter or call to tell you you're not forgotten would be enough....

Hope your news comes soon

Vicky

User
Posted 01 Jun 2023 at 17:28

Not according to my Surgeon whom I met and talked with. I thought this too which is why I never chased anything up as I thought the HT put a complete halt to it's advancement. The surgeon admitted they didn't completely understand how it effected the cancer but when I said I was thinking of postponing the RP till September he advised against this as it doesn't completely stop it. His saying this changed things for me.

I was on 50mg of Bicalutamide Dec 2022 -  early April 2023 and my PSA has gone from 69 to 43 and then up to 46. Now they've upped it to 150mg which I've been on a month and I've ordered myself another PSA test a month later since been on the higher dose, thru my GP. 

User
Posted 01 Jun 2023 at 19:03

Gerry, apologies, perhaps the wrong choice of words on my part , I probably should have said should slow down the growth. I waited four months for my surgery, I do occasionally wonder if that wait was significant,but I wasn't given any HT prior to surgery.

Thanks Chris 

User
Posted 02 Jun 2023 at 00:38

No worries Chris. I'm curious why were you not given HT?

User
Posted 02 Jun 2023 at 06:53
It's not been normal to prescribe HT to men awaiting surgery. Prostate cancer is very slow-growing, and if the cancer is wholly contained within the prostate, HT really serves no purpose if the prostate is shortly going to be removed. It really only started being done when long delays for surgery were experienced due to Covid.

If cancer has been there for years, or even decades, as is usually the case, waiting an additional few weeks for surgery has no impact on the outcome.

Best wishes,

Chris

User
Posted 02 Jun 2023 at 07:25

Originally Posted by: Online Community Member

No worries Chris. I'm curious why were you not given HT?

Gerry, as Cheshirechris has said, HT before surgery was a result of COVID. My delay came about because I waited for a new Davici robot to be installed in our hospital.

Thanks Chris 

User
Posted 02 Jun 2023 at 12:32

Okay that makes sense. In my case it's borderline and my Urologist has recommended removal over RT as I'm in my 50s and there is a risk of it returning. I'll only know for sure what the margins are when it's removed and they have a look at it and can tell how well it's been contained. I am going down the route of the Da Vinci method.

User
Posted 03 Jun 2023 at 11:24

Hi Gerry,

As per a reply I posted on a different thread this morning, I had my biopsy result yesterday (West Midlands) and was told that the next steps will be a telephone call from the specialist nurse within 2 weeks, then a meeting with an oncologist within 4-6 weeks, also 4-6 weeks for a meeting with a surgeon but I can only have that once I have seen an oncologist first and then the waiting list for robotic surgery is 6-8 months.

Maybe these rather broad timescales have been given to me because my results are Gleason 6, grade 1 (with only one core of 21 having cancer) but it is concerning and does nothing to calm the nerves. The medical team I was told feel AS is the best option for me at the moment and the cynic in my has to wonder whether that has anything to do with the waiting times I have been quoted.

I hope you get some clarity soon.

User
Posted 03 Jun 2023 at 22:48
Jonathan, I have responded on your own thread.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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