Feeling a bit lost in the NHS

User

Posted 22 Aug 2023 at 19:41

A way back in March this year I had a "precautionary" PSA test, no symptoms but I thought at 62 year old it would be a good idea...

So with two PSA tests showing a PSA of 4 & a "Digital Examination" suggesting "It feels ok but there might be a ridge" I was referred to hospital on 4th April

Various appointments later...

27/6 - Oncology nurse "you've got cancer, go & see the Oncology & Urology consultants" who told me about the treatments in very general terms & gave me leaflets to read so I could decide on treatment !

4/7 - Bone scan

13/7 - Telephone call telling me my bones were clear & I had to decide on treatment ( I decided to have the surgery). When I asked on timescales " probably September / October, they're very busy"

31/7 - Meeting with my Urology consultant which seemed to be a "there, there , you're not going to die" with the same timescale for surgery.

18/8 - After total silence from the Hospital I started to make phone calls & after being given the run around I was told " probably December, they're very busy"

The only information I have on my cancer is a copy of the letter from the Oncologist to my GP

Diagnosis

T2 No Gleason 4+4 adenocarcinoma of the prostate

9 out of 23 cores involved (left sided disease)

Maximum tumour length 5mm

Perineural invasion present

MRI scan : 30cc gland with a left apical mid gland lesion, no enlarged lymph node, no seminal vesicle involvement

Having to wait until December with a Gleason score of 4+4 with the thought it could "escape" and hit my bones before then is scaring the **** out of me

Am I panicking about nothing or should I be hassling the NHS (or spending my pennies on private) ???

User

Posted 06 Oct 2023 at 16:49

Chalk and cheese but to be fair: in order to give treatment, the urology dep't has to assemble a skilled team together all at the same time, for several hours, in an operating theatre with the necessary specialist equipment.

Whereas the oncology dep't just has to prescribe hormone tablets and tell the patient to start taking them. Then months later there can be injections. Followed usually by radiotherapy some time next year. No rush, no pressure as treatment has long since started with the first prescription.

User

Posted 22 Aug 2023 at 23:08

1 month won't make a difference, 6 months might. You could ask about going on HT while you wait but it's not ideal.

If you have the option to go private I would think about using it.

User

Posted 23 Aug 2023 at 00:01

With lowish PSA, a moderate amount of cancer, but not a whole prostate full, and T2c, if you were G3+3 I would be saying try active surveillance, you might not need to do anything for a few years. But you're G4+4, and 9 out of 23 is a moderate amount not a small amount, so this definitely needs treating.

If you live in England there are treatment targets, I can't remember the timescales, but they have missed yours. The government is talking about abandoning these targets, they say for clinical reasons, but I think it's more to do with money.

I suspect a six month wait won't make a difference with prostate cancer, but once the cancer targets are gone, resources will be diverted to somewhere else and wait times will go up.

You need to be complaining more. Look up the target times, and make a formal complaint if they have missed them for your case. I don't know if you can ask your GP to refer you to a different hospital.

Dave

User

Posted 24 Aug 2023 at 15:27

Great news!

I'm glad you've made some progress, and will have my fingers crossed for you on Tuesday 👍

User

Posted 31 Aug 2023 at 13:20

Well , at last heard from the NHS...

Surgery "Provisionally" booked for 5th December, quite a slip from the estimate given on 31st July of "probably September/October"

My Bone scan was clear on 4th July, I just hope my prostate doesn't leak by the Op date

Not at all happy with the NHS, referral date 4th April - treatment date 5th December

User

Posted 03 Oct 2023 at 14:48

Sorry to hear you've had such a hard time of it trying to get treatment started. Frankly, its the last thing any of us need on top of the stress of being diagnosed in the first place. I'm glad you're getting treated now though, even if it is on a different path to the one you first chose. Having done an awful lot of reading up on different treatment options lately (who'd have thought.....) It seems that your revised choice of HT/RT will be just as effective as surgery, but with a reduced chance of the unpleasant side effects of ED and incontinence?

I wound up being persuaded to go on AS, after a second opinion on my biopsy results downgraded it from 3+4 to 3+3. I may never know which one was right, but if I had opted for RT instead of surgery I would probably be being treated by now (Addenbrookes had a look prior to me seeing the surgeon) A part of me wishes I'd just gone for RT in the first place, but after doing all of my research, I will certainly be giving it much more consideration when the time comes.

Good luck with your treatment, and keep us all posted on how it is going.

Ian.

User

Posted 04 Oct 2023 at 20:15

Spoke to the Oncology nurses yesterday and they said they'd refer me to the Oncology dept for an appt to discuss treatment etc with the Consultant...

I had a text today with the appt booked for next week !

Chalk and cheese compared to the Urology dept

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User

Posted 22 Aug 2023 at 23:08

1 month won't make a difference, 6 months might. You could ask about going on HT while you wait but it's not ideal.

If you have the option to go private I would think about using it.

User

Posted 23 Aug 2023 at 00:01

I suspect a six month wait won't make a difference with prostate cancer, but once the cancer targets are gone, resources will be diverted to somewhere else and wait times will go up.

Dave

User

Posted 23 Aug 2023 at 01:51

I think a number of operations were delayed due to the Covid Pandemic and although junior doctors wouldn't do Prostatectomies their strikes are likely to have had an effect on the efficient way operations are performed. I think it will take some time to reduce backlogs.

As Dave says, find out what waits there are at other hospitals and if there is one with significantly shorter wait ask you GP to refer you there.

Barry

User

Posted 23 Aug 2023 at 11:02

MrGubby you are on the exact same time frame as my Husband, check out my profile for dates/details….he was Gleason 3+4 and has made the decision for surgery. The service and attention we have had has been very fast, he was seen by surgeon yesterday who has listed him for surgery in next 6-10 weeks. So I think either you have been accidentally missed and they need chasing up or it is just the difference in different areas! We are in North West. Just from our own experience and emotions surrounding this experience, we wouldn’t be happy waiting with no ‘next step’ either!

he was also given his pre op assessment at the hospital yesterday because his surgery is within the next 12 weeks. (So that could take us to mid November) The only thing we don’t have is an exact date which we expect to get soon. Although my Husband was hoping it would be sooner (naturally, he just wants it out), we feel that the timescale isn’t unreasonable.

it may be that you are the same and you are listed for surgery within a similar time frame so perhaps a call to the urologist (were you given a clinical nurse there to contact.) just to put your mind at rest that you are listed and in what month is it likely….if they say December or later and that doesn’t sit well with you and private care is an option then something to consider perhaps if the timescales are a lot quicker.

good luck

Debbie

Edited by member 23 Aug 2023 at 11:29 | Reason: Missed info

User

Posted 23 Aug 2023 at 18:50

Hi Debbie,

I was originally told by my Consultant (likely surgeon) that it would be September/October. When I called his secretary last week she said it was out of their hands and was now with the "Waiting List". When I chased the "Waiting List" (When I called them they said they'd call back but of course forgot...) the surgery had now slipped to "Probably December" . I was that stunned / furious I had to drop the call before getting abusive :( . Since then the Consultants secretary has gone MIA with no voicemail or email address.

I have no Urology nurse, in the beginning I had an Oncology nurse but they dropped me the second I elected for surgery

User

Posted 24 Aug 2023 at 11:39

I sympathise with you ref. the waiting for news. I am 23 days post biopsy and waiting for my results. Is it worth getting your GP on the case (if you haven't already)? I was given the run around when waiting for my supposed fast track referral (guaranteed 2 week max - it took a month). All I got from the hospital were uninterested receptionists, or secretaries voice mails. My GP eventually took up the case for me and pushed for some action, which seemed to work.

I hope they get you a date soon mate, and that it goes well for you.

User

Posted 24 Aug 2023 at 15:14

Originally Posted by: Online Community Member

I hope they get you a date soon mate, and that it goes well for you.

Chased up my GP today. I had to pop into the surgery as they don't answer the phones and had to fill in a Triage form !

After much repeating " I have aggressive cancer ( the Oncologists words) " I should be having a tele-consult sometime Tuesday morning.

The receptionist was a bit shocked when I told her I'd been told I had cancer in June but have had no treatment whatsoever ...

User

Posted 24 Aug 2023 at 15:26

If you aren't getting satisfactory treatment from the hospital I believe you have the legal right to go to another hospital which may provide a better service. I have no complaints for the one I used, I had Brachy as it turns out but I had a long and interesting conversation with the consultant surgeon when I was considering RP and he said the wait time there was around 6 weeks from diagnosis. The hospital I used had patients from all over the country.

Tom

User

Posted 24 Aug 2023 at 15:27

Great news!

I'm glad you've made some progress, and will have my fingers crossed for you on Tuesday 👍

User

Posted 31 Aug 2023 at 13:20

Well , at last heard from the NHS...

Surgery "Provisionally" booked for 5th December, quite a slip from the estimate given on 31st July of "probably September/October"

My Bone scan was clear on 4th July, I just hope my prostate doesn't leak by the Op date

Not at all happy with the NHS, referral date 4th April - treatment date 5th December

User

Posted 31 Aug 2023 at 13:44

Wow it’s really terrible you’ve had such a long wait. Glad you have finally been given a date though.

With the 4+4 and perineural invasion maybe it would be worth speaking to them to see whether a short course of hormone treatment pre op might be something they would advise or consider?

Best wishes

Elaine

User

Posted 31 Aug 2023 at 21:45

Hi Mr. Gubby,

April to December? That does seem like an awful long time for this to be hanging over you.

Take good care of yourself in the meantime. I hope you can find some ways of distracting yourself with pleasant activities while you're waiting.

Best wishes,

JedSee.

User

Posted 13 Sep 2023 at 14:25

Well... Another two weeks gone with nothing from the NHS

They, haven't replied to my GP, my consultants secretary has been replaced and I can't get a contact name or number. You couldn't make it up !

On the positive side, I managed to get in contact with my Oncology nurse (after leaving two voicemails), she seemed shocked by the delays & lack of communication and could see no reason why I was not already on hormone treatment. She has stated that she will contact my Consultant & get back to me with any info...

So, I'd guess at another two weeks minimum delay.

User

Posted 19 Sep 2023 at 18:42

Well slap me around the head with a Halibut !

My Oncology Nurse phoned today & I'm now on Hormone treatment, they're also checking to see if they can bring the operation forward.

I *think* somebody may have realised that the time from Bone scan to Op would have been 5 months and the time between Biopsy and Op would be over 6 months.

User

Posted 03 Oct 2023 at 14:10

And it's a new month

I've given up with the total lack of communication from my local Urology dept and changed my treatment plan from Surgery to Hormone/Radiotherapy

Within one day of making the decision I've had my first injection, 2nd one booked and a provisional date for Radiotherapy set for mid-end of January.

If I'd been told at the beginning of July that it was going to be 150 days for surgery I'd have gone straight for the Radiotherapy and it would have been completed this month

What a waste of time, money and my mental health.

User

Posted 03 Oct 2023 at 14:48

Good luck with your treatment, and keep us all posted on how it is going.

Ian.

User

Posted 04 Oct 2023 at 20:15

Spoke to the Oncology nurses yesterday and they said they'd refer me to the Oncology dept for an appt to discuss treatment etc with the Consultant...

I had a text today with the appt booked for next week !

Chalk and cheese compared to the Urology dept

User

Posted 06 Oct 2023 at 16:49

User

Posted 08 Oct 2023 at 00:34

Radiotherpay can only zap cancer tissue already in situ. After destruction of targeted cancer tissues, blood-borne cancer can re-grow there and elsewhere. Repeat RT in the same location is not feasible as healthy tissue cannot take too much X-ray poundings without dire consequences. To discourage cancer growth everywhere (if metastasis has spread) hormonal treatment is needed, to deprive cancer tissues of sustenance.

Living a healthy lifestyle (like diet and exercise and mental wellbeing) in the mean time would be helpful as your body has amazing resourses of resistance and repair and restoration of homeostasis -- with no side-effects.

If you want referral to a hospital try, at least try, St Thomas Hospital in south bank London (where Florence Nightingale used to work) -- the best among1100 UK hospitals.

Best wishes.

User

Posted 12 Oct 2023 at 16:48

You're correct, surgery involves a lot more people, BUT it is a standard procedure and should not take 150 days to organise.

In just over a week from changing from Surgery to RT I have had a prelim injection by the Oncology nurse, had another one scheduled with my GP on the 31st of October, had a meeting with the Oncology consultant to discuss treatment and had a telephone call from "a leading cancer care hospital" to book me in for the initial scan.

If I'd been told on July 5th that surgery would be in December (rather than the initial Sept/Oct suggested by the Surgeon) I would have been part way through my RT by now !

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