Worry over treatment delay

Hello Tenrickf8fe78 

Welcome to the group, although I am so sorry to find you joining us. The issue with the Prostate journey is that we are all on the same pathway and there is no "fast track" so Gleason 10's get the same wait time as a Gleason 6 for an appointment. Sadly you need to advocate for yourself.

So if PALS can't come up with an answer have you asked your urology team what the surgery waiting times are at other adjoining Health Authorities for surgery and if lower can you be booked in there - or can you be put on a "stand by" list for any cancellations.

Again if PALS can't do anything a formal complaint about treatment times to your hospital or the Commissioning Integrated Care Board. The nuclear option if these don't work is to contact your MP but not until you have exhausted the formal complaints route.

I hope the above helps - I think you will find that at some point most of us have had to push our treatment along.

Please do let us know how you get on.

Best wishes - Brian.

Many thanks Brian.

I have asked direct to the nurse consultant and via PALS what has changed since I was given a waiting time of 8-10 weeks on 03.09.2025.

I have been told the waiting list is determined by referral date, though the nurse consultant did stray away from that a little.

I have asked for some transparency over how the waiting list is decided and an explanation of the apparent contradiction between the MDT conclusion and the relaxed attitude to delay.

A govenor of the trust has offered to take the matter up to see if there is a resourcing crisis that needs addressing, and I am sure there is.

The difficult thing is to be given a timescale by the urology consultant and then to find by chance that I face an inderterminate delay. Given my diagnosis came about by chance, I am a little concerned that the outcome of my treatment is being left to chance.

My Cancer Care Review is on 15.09 with my GP and I am hoping to get his support if I hear nothing before then.

I was niave it seems in the belief there was a timescale for treatment, that the consultant would give me accurate information when I was making my decision on how to go forward and that I wouldn't be exposed to a foreseeable risk caused by an open-ended delay.

I have asked if there is a cut-off date by which treatment should start and for the risks caused by a 3-month, 3-6 month and post 6-month delay.

Hello Tenrickf8fe78 

That's an interesting reply, although there is no sign of any progress yet.  Again I would be pushing my case forward I would be wanting a date and dates at adjoining health trusts if there is a long wait at yours.

Is it worth considering the Radiotherapy route (depending on their time scale) - yes Surgery would be out if this failed (RT results are impressive now) and if this didn't work there's always Hormone Therapy as a back up - and no invasive surgery.

i think you need to push your own case here - by the time you get to your GP another week will have passed and i am not so sure they can influence a consultant!!

Best wishes - Brian.

Thanks again Brian.

Wasn't sure how long to wait for PALS to respond or even acknowledge my concerns have been raised. It will be a week tomorrow since I emailed them a set of questions in two tranches, the second set following speaking with a nurse from Prostate Cancer UK who gave me some pointers on what to ask. I've had nothing back and so another week has passed with seemingly nothing happening.

Hello Tenrickf8fe78 

Sadly PALS  isn't the best at progressing every case (in my wife's case they were useless! but that's another story). I think you need to get back onto them, stress the cancer is aggressive and the wait is causing anxiety, if you haven't had a full reply in 24 hours you will take the matter further.

I know it's hard waiting for appointments but you need to be polite but proactive. On my personal journey I have the name, telephone number and if possible the e-mail address of everyone I have met - this list has come into play several times!!

Do you have a Urology CNS (Cancer Nurse Specialist) or allocated Macmillan Nurse you can speak to?

Best wishes - Brian.

Hi Tenrick

Just a couple of questions from me

Can't see a Gleeson score anywhere.

What does the MRI show in terms of tumour size

Steve 

Hi Steve,

Gleason Score is 3+4 but the cancer nurse I saw after seeing the urology consultant told me they no longer use Gleason and I am grade group 2. The worrying issue is the cribriform architecture which, I was told, meant I needed radical treatment.

My prostate is 59ml which the consultant said was large.

I was told my PIRADS was 3 but from the biopsy report it looks like parts are 4.

Just seems contradictory to say I need radical treatment and ruling out active surveillance and then to be left with no timescale. 

The nurse consultant I spoke to last week conceded until post-surgery histology, my grade group isn't finalised.

I have to say none of that makes much sense but please remember I am no specialist, just what I've picked up over the past 12 years.

Never heard of gleeson.no longer being used and then giving a Gleeson 

Forget about Pirads cos that's just an indicator of cancer and the Gleeson confirms that it is.

Group 2 is ok cos cancer confined to the gland but u still need to find out the tumour size not prostate gland size.

To give u an idea my tumour went from 3 mm to 13 mm over 4; years, they should be able to tell u that info.

All the best

Steve 

Sorry, some of it makes sense

Grade Group 2 is listed on this page from Cancer: Research https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/grades as:

"Most cells still look similar to normal prostate cells. The cancer is likely to grow slowly"

This is possibly why no one is especially concerned.

However, if I were in your position, I would be. After all, you're the one with the perishing cancer.

You might want to start asking questions about Radiotherapy, and whether that is available to you.

If you look on this web page - https://www.cancerresearchuk.org/about-cancer/prostate-cancer/treatment/decisions-about-your-treatment - you will see that there is what my father would have called "naff-all" difference in the survival rates between the treatments.

So, you appear to have all the choices and the time to make them. Nonetheless, I would still be pushing because I would be happier with an active plan. I suspect you would too.

When it comes to deciding what to do, I am unimpressed by the "surgery will be difficult later" argument, because although it is true, there are surgeons who will undertake it.

Probably the best way to decide is to list out the side effects for each type of treatment, and then weigh in your mind how prepared you feel to deal with them.

You can then make a rational decision.

I should mention that I am having radiotherapy and hormone therapy, and am not finding it hard to deal with at all. I have a friend who had surgery, and his PSA level started rising again within 6 months. He is now having all the fun of radiotherapy and hormone therapy as well.

I wish you well in getting some action out of your team.

Thanks Steve. 

I don't know the tumour size as I was not being monitored and just had a PSA test by chance in July and my score was 9.8 and a DRE showed changes in my prostate and a nodule could be felt.

I have the biopsy report but not the MRI report and my consultant does not mention the tumour size in his follow up letter.

The MDT said it needs to be radical treatment, not active surviellance.

The Gleason Score is on the bisopsy report but neither the consultant nor the nurse completing my record use it - they use group grade 2. I have no idea why they say they have moved away from Gleason particularly when it is on the biopsy report, though in fairness I did get that with a SAR to the hospital.