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NHS waiting times/going private

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User
Posted 10 Jan 2022 at 14:19

We are still waiting for an NHS date for the RP after seeing the surgeon 20th December. Does anyone know the London waiting times? It has already been 3 weeks and I feel every day counts. Also about going privately, if we can raise the money but there is then an emergency during the operation what happens? These private hospitals don't always have emergency services, do they? And would this bump the price up so you'd have to sell your house, or would we be able to be treated by NHS? Even if things go well, can we go back to NHS for aftercare for catheter removal and follow-ups?

User
Posted 13 Jan 2022 at 18:36

To Chris Bromsgrove: 

I would be going mental if I had no reassurance of a date. Several months is dreadful. I read on the NHS site that the wait time from seeing a surgeon/radiotherapist and agreement on treatment to getting first treatment is supposedly 31 days. Of course, this is not the case, but any longer than 6-8 weeks is simply not acceptable. I do pity the poor NSH staff though. It is thanks to the last 10 years of lack of investment in our NHS that has cause this problem.  I totally agree with you about going private in these circumstances - it is our lives we need to protect. Wishing you all the best. 

User
Posted 14 Jan 2022 at 13:31
Don’t worry about the timeline for surgery, as it took me six months to choose my surgeon, four years ago, and I have been cancer-free ever since.

If you are going private, it will cost fifteen grand, make sure you have the neuro-safe real-time biopsy. And all these ‘Private Clinics’ are linked to major NHS teaching hospitals, so if anything went wrong, you would just be shunted next door.

Best of luck,

Cheers, John.

User
Posted 10 Jan 2022 at 14:28
The cancer will have been there for years - perhaps decades. A few months before surgery honestly does not matter. If it's worrying you, ask to be put onto HT while you wait for surgery - this will freeze the cancer in its tracks.

Cheers,

Chris

User
Posted 10 Jan 2022 at 15:45
When I was waiting for my treatment to start, I was told 'We could do nothing at all for the next six months and it would make no difference'. Prostate cancer is normally very slow growing. Once you have decided about the treatment you want (in this case RP?) the process moves forward. For me it felt like I was on a conveyor! I understand your impatience to be rid of the cancer, but please try not to fret. I do not think you will get better treatment by going privately than you will by trusting the NHS, and the treatment will be done in the same hospital, probably by the same staff. Best of luck for a successful outcome.

Hermit

User
Posted 10 Jan 2022 at 15:53

My op. Was in Hertfordshire at the Lister Hospital last November. The surgeon looked in his book and gave me the date at our consultation. I was impressed by that. Wait was 6 weeks (that was as at late September 2021). I understand the fear should an emergency arise but for sure, not all privately funded ops. are at private hospitals. I have private insurance but chose to go NHS because I wanted to be certain of ongoing monitoring and care without problems as it is likely I shall be dropping the insurance due to the rising premiums. 

Peter

 

 

User
Posted 10 Jan 2022 at 16:00

Private hospitals don't have acute facilities such as A&E - you would be transferred to the NHS if that was necessary. (This applies to some NHS hospitals too.) Most NHS hospitals have a private ward and do private procedures, and that might be particularly relevant if the procedure had a higher that normal likelihood of developing an emergency situation during the procedure, as you could be treated on-site with acute facilities.

Another problem for private patients is that no followup will be arranged for things like ED, counseling, continence, access to CNS, etc. In theory, you can transfer back to the NHS for this, but it's sometimes difficult to get back onto the NHS systems if your main treatment wasn't on the NHS. It may also be difficult to get medications afterwards on the NHS. This should all work as patients have a right to have parts of their treatment on the NHS and parts privately, but it's not as easy as it should be.

As others said, unless you have a high Gleason or high risk in some other way, a delay is rarely significant, anf hormone therapy can be used as a holding strategy if you wish.

User
Posted 10 Jan 2022 at 18:26
I'll just add, bearing in mind previous post about 'severity'. I was diagnosed Oct 2015, PSA was 21, Gleason was 8 (upped to 9 after TURP May 2016), only slight spread to seminals. Started HT Nov 2015 and at first in bit of a panic RT wasn't starting next day!!, purely due to ignorance on my part. Ended up starting RT (37 sessions to prostate/pelvic region) Nov 2016 and I was perfectly happy with that after Oncologist explained no rush at an early appt.

Peter

User
Posted 11 Jan 2022 at 08:16
When I had my Prostatectomy I had the option of private or NHS with the same surgeon. He said if I went private the ONLY difference would be I had a private room at the end of the NHS ward. Waiting times were pretty similar ( he was going on holiday!) and he said the wait would make no difference. I opted for NHS.

Now did that 12 week wait cause my PSA persistence I will never know, but once you decide to have it out I understand the desire to get on with it!

User
Posted 11 Jan 2022 at 19:20

Your hospital seems more on the ball than mine. There does seem to be wide variances in waiting times between NHS Trusts. No matter who I asked (last week), no one would even give me a rough indication of the wait time for RP. All I could glean was that it was likely to be several months and 23 patients with the same Gleason score were in front of me. Also there was one patient who has been waiting for RP since April 2021. I have decided to go private simply because I can't live with this uncertainty. Even going private I have nearly a six week wait but at least I can see a way forward.

User
Posted 12 Jan 2022 at 21:07

I am waiting for a surgery date but was told on Christmas Eve it could be 4 or 5 months till I can get a theatre slot.my Gleason is 3+3 so I am low priority. I could pivot over to HT/RT but having decided on the RP option I’d prefer to wait. As others have stated PC is usually very slow growing. 
my biggest fear has been that the NHS will collapse due to Omicron forcing me into the RT route but thankfully that hasn’t happened yet. 
I cannot fault the NHS care I have received so far and know they are better equipped to handle complications, chronic side effects etc do I am trusting my surgeon and specialist nurse and patiently waiting.

regards, GG

User
Posted 14 Jan 2022 at 09:32

What Cheshire Chris has written above reminds me of my decision interview.  I said a private clinic's website mentions HT before the op if it's a higher risk case.  The doctor said that normally only happens if there's a delay.  So perhaps that's a reasonable option.

User
Posted 14 Jan 2022 at 13:53
As you rightly say, there is a target of 31 days between a treatment decision being taken and treatment commencing, but unfortunately we aren't living in normal times at present, so I suspect that this goal will frequently fail to be met at present. Starting HT will satisfy the target, and there have been quite a few men here who have been on HT while waiting for surgery.

Best wishes,

Chris

User
Posted 14 Jan 2022 at 14:12
The 31 day clock also stops ticking if the patient decides to seek a second opinion or a referral to an alternative hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jan 2022 at 14:33

I had my Biopsy results meeting telling me I was Gleason 3+4 early May 2019. Within 2 weeks I met with potential surgeon at Exeter. I was given a date for Surgery Sept 2019 - 5 months. I asked about Cancellations and was put on a waiting list. I was telephoned early May and given a date in late May 2019. 6 weeks from Biopsy meeting. So I would recommend trying this route re Surgery

User
Posted 14 Jan 2022 at 16:22

Hello everyone, my first post after spending sometime following this forum...

Thank you ShadyP for asking this question as it is one of the many whizzing around my head from time to time!

Thanks too for all the help, support and love that appears on this forum and the wealth of knowledge that exists here.

I have just been diagnosed last week with a gleason score of 4+5 and T3a. Not sure of any other details as yet as I am still taking it all in.

Given two options of surgery or EBRT with HT and I have elected for the radiation route.

I will no doubt have loads of questions in due course but I was given some helpful publications from this organisation whilsf I was at the hospital (East Surrey ).

So I wait...

Any further thoughts welcome!

Every blessing

Snowwy

Edited by member 15 Jan 2022 at 16:46  | Reason: Typo

User
Posted 15 Jan 2022 at 16:48

Thank you very much. I've involuntarily joined the PC club just this week, and it at times feels scary, and other times not. Suspect it will be an emotional rollercoaster, but it's great to have all of this support.

User
Posted 15 Jan 2022 at 18:02

Originally Posted by: Online Community Member

For hormone therapy, I was told I would be given tablets for 28 days then injections for up to 3 months before radiation treatment?

As I am new to all this, why do they do it like that, and should I be ringing up my support nurse next week to see when things might start?

Thanks in advance...

When you start having the injections, it causes a rush of activity in the cancer cells called a tumour flare. The tablets 'disguise' your testosterone to stop the tumour flare. Usual practice is that you have the tablets for 14 days, first injection is given and then you carry on with the tablets for another 14 days. 

Some men are given their tablets at the appointment with the oncologist and start taking them immediately. In other areas, the man is told to collect a prescription from the GP. Will you be having your injections at the hospital or the GP practice? 

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

User
Posted 15 Jan 2022 at 22:09

Guessing we were very lucky . My OH was Gleason 4+3 and was operated on within 2 weeks . We are in Kent and this was NHS last July .

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User
Posted 10 Jan 2022 at 14:28
The cancer will have been there for years - perhaps decades. A few months before surgery honestly does not matter. If it's worrying you, ask to be put onto HT while you wait for surgery - this will freeze the cancer in its tracks.

Cheers,

Chris

User
Posted 10 Jan 2022 at 15:45
When I was waiting for my treatment to start, I was told 'We could do nothing at all for the next six months and it would make no difference'. Prostate cancer is normally very slow growing. Once you have decided about the treatment you want (in this case RP?) the process moves forward. For me it felt like I was on a conveyor! I understand your impatience to be rid of the cancer, but please try not to fret. I do not think you will get better treatment by going privately than you will by trusting the NHS, and the treatment will be done in the same hospital, probably by the same staff. Best of luck for a successful outcome.

Hermit

User
Posted 10 Jan 2022 at 15:53

My op. Was in Hertfordshire at the Lister Hospital last November. The surgeon looked in his book and gave me the date at our consultation. I was impressed by that. Wait was 6 weeks (that was as at late September 2021). I understand the fear should an emergency arise but for sure, not all privately funded ops. are at private hospitals. I have private insurance but chose to go NHS because I wanted to be certain of ongoing monitoring and care without problems as it is likely I shall be dropping the insurance due to the rising premiums. 

Peter

 

 

User
Posted 10 Jan 2022 at 16:00

Private hospitals don't have acute facilities such as A&E - you would be transferred to the NHS if that was necessary. (This applies to some NHS hospitals too.) Most NHS hospitals have a private ward and do private procedures, and that might be particularly relevant if the procedure had a higher that normal likelihood of developing an emergency situation during the procedure, as you could be treated on-site with acute facilities.

Another problem for private patients is that no followup will be arranged for things like ED, counseling, continence, access to CNS, etc. In theory, you can transfer back to the NHS for this, but it's sometimes difficult to get back onto the NHS systems if your main treatment wasn't on the NHS. It may also be difficult to get medications afterwards on the NHS. This should all work as patients have a right to have parts of their treatment on the NHS and parts privately, but it's not as easy as it should be.

As others said, unless you have a high Gleason or high risk in some other way, a delay is rarely significant, anf hormone therapy can be used as a holding strategy if you wish.

User
Posted 10 Jan 2022 at 18:26
I'll just add, bearing in mind previous post about 'severity'. I was diagnosed Oct 2015, PSA was 21, Gleason was 8 (upped to 9 after TURP May 2016), only slight spread to seminals. Started HT Nov 2015 and at first in bit of a panic RT wasn't starting next day!!, purely due to ignorance on my part. Ended up starting RT (37 sessions to prostate/pelvic region) Nov 2016 and I was perfectly happy with that after Oncologist explained no rush at an early appt.

Peter

User
Posted 11 Jan 2022 at 08:16
When I had my Prostatectomy I had the option of private or NHS with the same surgeon. He said if I went private the ONLY difference would be I had a private room at the end of the NHS ward. Waiting times were pretty similar ( he was going on holiday!) and he said the wait would make no difference. I opted for NHS.

Now did that 12 week wait cause my PSA persistence I will never know, but once you decide to have it out I understand the desire to get on with it!

User
Posted 11 Jan 2022 at 16:41
Thanks so much for all your kind replies. It has really helped me to put things in perspective. Importantly for us, we heard yesterday after chasing both NHS appointments and private secretary of same surgeon that the difference between wait times between going privately or with the NHS seems only to be a week at this stage so obviously we prefer the continuity of care at the NHS (not bothered about the posh hotel bed!). We are now hoping for mid-February. Fingers crossed.
User
Posted 11 Jan 2022 at 19:20

Your hospital seems more on the ball than mine. There does seem to be wide variances in waiting times between NHS Trusts. No matter who I asked (last week), no one would even give me a rough indication of the wait time for RP. All I could glean was that it was likely to be several months and 23 patients with the same Gleason score were in front of me. Also there was one patient who has been waiting for RP since April 2021. I have decided to go private simply because I can't live with this uncertainty. Even going private I have nearly a six week wait but at least I can see a way forward.

User
Posted 12 Jan 2022 at 21:07

I am waiting for a surgery date but was told on Christmas Eve it could be 4 or 5 months till I can get a theatre slot.my Gleason is 3+3 so I am low priority. I could pivot over to HT/RT but having decided on the RP option I’d prefer to wait. As others have stated PC is usually very slow growing. 
my biggest fear has been that the NHS will collapse due to Omicron forcing me into the RT route but thankfully that hasn’t happened yet. 
I cannot fault the NHS care I have received so far and know they are better equipped to handle complications, chronic side effects etc do I am trusting my surgeon and specialist nurse and patiently waiting.

regards, GG

User
Posted 13 Jan 2022 at 18:36

To Chris Bromsgrove: 

I would be going mental if I had no reassurance of a date. Several months is dreadful. I read on the NHS site that the wait time from seeing a surgeon/radiotherapist and agreement on treatment to getting first treatment is supposedly 31 days. Of course, this is not the case, but any longer than 6-8 weeks is simply not acceptable. I do pity the poor NSH staff though. It is thanks to the last 10 years of lack of investment in our NHS that has cause this problem.  I totally agree with you about going private in these circumstances - it is our lives we need to protect. Wishing you all the best. 

User
Posted 14 Jan 2022 at 09:32

What Cheshire Chris has written above reminds me of my decision interview.  I said a private clinic's website mentions HT before the op if it's a higher risk case.  The doctor said that normally only happens if there's a delay.  So perhaps that's a reasonable option.

User
Posted 14 Jan 2022 at 13:31
Don’t worry about the timeline for surgery, as it took me six months to choose my surgeon, four years ago, and I have been cancer-free ever since.

If you are going private, it will cost fifteen grand, make sure you have the neuro-safe real-time biopsy. And all these ‘Private Clinics’ are linked to major NHS teaching hospitals, so if anything went wrong, you would just be shunted next door.

Best of luck,

Cheers, John.

User
Posted 14 Jan 2022 at 13:53
As you rightly say, there is a target of 31 days between a treatment decision being taken and treatment commencing, but unfortunately we aren't living in normal times at present, so I suspect that this goal will frequently fail to be met at present. Starting HT will satisfy the target, and there have been quite a few men here who have been on HT while waiting for surgery.

Best wishes,

Chris

User
Posted 14 Jan 2022 at 14:12
The 31 day clock also stops ticking if the patient decides to seek a second opinion or a referral to an alternative hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jan 2022 at 14:33

I had my Biopsy results meeting telling me I was Gleason 3+4 early May 2019. Within 2 weeks I met with potential surgeon at Exeter. I was given a date for Surgery Sept 2019 - 5 months. I asked about Cancellations and was put on a waiting list. I was telephoned early May and given a date in late May 2019. 6 weeks from Biopsy meeting. So I would recommend trying this route re Surgery

User
Posted 14 Jan 2022 at 16:22

Hello everyone, my first post after spending sometime following this forum...

Thank you ShadyP for asking this question as it is one of the many whizzing around my head from time to time!

Thanks too for all the help, support and love that appears on this forum and the wealth of knowledge that exists here.

I have just been diagnosed last week with a gleason score of 4+5 and T3a. Not sure of any other details as yet as I am still taking it all in.

Given two options of surgery or EBRT with HT and I have elected for the radiation route.

I will no doubt have loads of questions in due course but I was given some helpful publications from this organisation whilsf I was at the hospital (East Surrey ).

So I wait...

Any further thoughts welcome!

Every blessing

Snowwy

Edited by member 15 Jan 2022 at 16:46  | Reason: Typo

User
Posted 14 Jan 2022 at 16:27

Thanks everyone for sharing your experiences. Thank ProSixty for your suggestion. We asked them already to consider us for any cancellations so yes, it is a good idea to ask. You got lucky I think. I am just hoping we do not get our suggested date of mid-February put back. 

User
Posted 15 Jan 2022 at 16:15

Hi

Gleason 3+4 result this week (NHS London). Potential 2 months waiting for RP surgery. Reassured that 2 months is ok to wait and it won't get worse in that time. RT the other option but told surgery would suit my age/health situation better. Small doubt gnawing at me that 2 months is a long wait and it could indeed get worse. Am new here so any reassurance gratefully received!

User
Posted 15 Jan 2022 at 16:39

Hi John, being a slow growing disease, a 2 month wait for surgery as has been advised is really not likely to be an issue. You can always chat to the specialist nurses here at PcUk for reassurance and if, being recently diagnosed, have other questions too

Edited by member 15 Jan 2022 at 16:42  | Reason: Not specified

User
Posted 15 Jan 2022 at 16:40
My OH had RARP on 8 Dec 2021. He was seen by a surgeon for initial discussion on 11 Nov 2021. He was told surgery probably wouldn't be until Jan 2022 but was called with a last minute slot 6 days before surgery. Suspect it may have been a cancellation. He was Gleason 4 + 3.
User
Posted 15 Jan 2022 at 16:48

Thank you very much. I've involuntarily joined the PC club just this week, and it at times feels scary, and other times not. Suspect it will be an emotional rollercoaster, but it's great to have all of this support.

User
Posted 15 Jan 2022 at 16:56

For hormone therapy, I was told I would be given tablets for 28 days then injections for up to 3 months before radiation treatment?

As I am new to all this, why do they do it like that, and should I be ringing up my support nurse next week to see when things might start?

Thanks in advance...

User
Posted 15 Jan 2022 at 17:40
To John above, My OH was also Gleason 3+4 result and was told it was slow growing as everyone here seems to say. That being the case, not to be a scare-monger, but it only takes one cell to cross that barrier before the operation if we are going down the RP route which we are.... and yes, I am scared, which I guess we all are here. That said, I think a two month wait with the NHS means they are doing very well at the moment (although obviously not well enough to keep out minds racing at the delays). Ask to be put on the list for any cancellations. We can only all hold our breath....
User
Posted 15 Jan 2022 at 18:02

Originally Posted by: Online Community Member

For hormone therapy, I was told I would be given tablets for 28 days then injections for up to 3 months before radiation treatment?

As I am new to all this, why do they do it like that, and should I be ringing up my support nurse next week to see when things might start?

Thanks in advance...

When you start having the injections, it causes a rush of activity in the cancer cells called a tumour flare. The tablets 'disguise' your testosterone to stop the tumour flare. Usual practice is that you have the tablets for 14 days, first injection is given and then you carry on with the tablets for another 14 days. 

Some men are given their tablets at the appointment with the oncologist and start taking them immediately. In other areas, the man is told to collect a prescription from the GP. Will you be having your injections at the hospital or the GP practice? 

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

User
Posted 15 Jan 2022 at 20:23

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

For hormone therapy, I was told I would be given tablets for 28 days then injections for up to 3 months before radiation treatment?

As I am new to all this, why do they do it like that, and should I be ringing up my support nurse next week to see when things might start?

Thanks in advance...

When you start having the injections, it causes a rush of activity in the cancer cells called a tumour flare. The tablets 'disguise' your testosterone to stop the tumour flare. Usual practice is that you have the tablets for 14 days, first injection is given and then you carry on with the tablets for another 14 days. 

Some men are given their tablets at the appointment with the oncologist and start taking them immediately. In other areas, the man is told to collect a prescription from the GP. Will you be having your injections at the hospital or the GP practice? 

Hi Lyn,

I think I have to go to the hospital at the beginning and then the GP practice will give the injections.

Thanks for the background info... so much to grasp!

User
Posted 15 Jan 2022 at 22:09

Guessing we were very lucky . My OH was Gleason 4+3 and was operated on within 2 weeks . We are in Kent and this was NHS last July .

 
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