Continuing delay in surgery

Hi Tenrick 

Sorry to hear about the delay but with a T2 don't think a few more weeks will alter things really, yes I understand the concerns  regarding cribriform.

Couple of questions what is PSA and do u know tumour size , obviously contained within the gland. Oh and the Gleeson score.

Best wishes 

Steve 

Hi Steve.

Gleason score 3+4. I don't know the tumour size. Interestingly my urology cancer nurse told me they don't use Gleason at James Cook Uni Hospital (Middlesbrough) now. 

PSA was 9.8 in late July. Despite being on tamulosin to help with an enlarged prostate, being 58 and having an older brother who had PC and had a prostatectomy about 15 years ago, I wasn't being monitored. I'd had a PSA test in 2022 with other blood tests and didn't even know.

The 2022 result was 2.3. In July I had been speaking to a slighly older friend with an enlarged prostate who has six-monthly PSA tests.

I asked my GP for a test and it came back 9.8, he got me straight in and did a DRE and could feel changes and he made the referral on 28 July.

My worry is there is nothing to say how quickly that PSA had gone up and the biopsy, by definition, gives only a small snapshot of the cancer and staging can't be confirmed until post-surgery histology.

So, my diagnosis was by chance and feels like my treatment is being left to chance. I've read that delay can be negative even for stage 2 PC where there is cribriform features and that can start to have an impact with a 3 month delay and I could be facing a 6-month plus delay given the lack of any timescale.

For context, I lost an older sister in 2021 to throat cancer, my other older brother has just had surgery for bowel cancer and my younger sister has a brain tumour. Five siblings, all with cancer. We've lost one to the horrid disease and statistically feels like the we are all vulnerable.

Strangely, that background has made me more worried when I had thought it might have made me more accepting and resiliant given the wider exposure.

I feel the same about myself where you say you’re twitchy when any new ache or pain is apparent. It’s only natural you feel that way. You should note the familial cancer history but you are not them. You are special and should feel special. Being positive is the same thing and without you mind being on side you will struggle more. But the mind will also play tricks on you and make you feel like everyone is slacking about you alone. Everyone else gets better quicker service and I (you) need to worry more to ensure I don’t loose my place in the queue.

So everyone is thinking the way you think and you should not feel bad about it. You need to shout about it, and here we will listen and comfort you, and support you. Self advocacy is your best tool to help you get through this difficult period. So ask, shout, write and communicate what you need to help manage your expectations and your minds need for action. Good luck but be patient, kind to yourself and others and listen to your body.

So PSA gone up from 2.3 to 9.8 in three years.

That's not too bad really.

Mine went from about 3 to 13 in 4 years.

Try and find out a bit more about tumour size from the MRI report,  hopefully 12mm or less .

That could put your mind at rest a bit 

Best wishes 

Steve 

Thanks Mr U.

Contacting PALS and then the commissioning board felt a positive step as there is a crisis at the treating hospital and more patients will be in the same position, facing delays and the 62-day target being routinely missed.

My consultant told me on 3 September that my surgery would be in 10-12 weeks - that would have been 12-26 November.

What has changed since 3 September to push me back by anywhere up to 2 months or more?

I have just asked for some transparency.

I have been positive, continued with lifestyle changes started before the diagnosis which have helped me lose 20kg since the end of May and really working on my physical fitness.

This might just be a bad week and I won't be hard on myself for feeling like I do. 

Lack of good sleep, increased incontinence in the day time and a genuine fear of slipping from anxiety into depression has all taken a tole.

Giving myself some time will no doubt help me adjust to the latest incarnation of my new normal.

Your attitude inspires me to be a better me and your new normal, that can change daily, will succeed and conquer all the challenges we face along the way.

My pathway, like yours, is tough on me but along comes someone who kick my but and shows me the way.

Keep on doing what you do best, looking after number one and never give up.

Thanks Steve.

I got my biopsy report before seeing the consultant as I did a SAR and thought it would take 30 days and it only took 6 and I therefore got the report the afternoon before the consultant told me the diagnosis.

If I can't get confirmation from one of the urology team, I'll stick in another SAR, but hopefully won't need that.

Hello Tenrickf8fe78 

It's my understanding that the maximum wait should be 18 weeks under the NHS guidelines and you then have the option to change providers.

Choices in the NHS.

We have had Community members speak to their own consultants where there has been a delay and they have been referred to other Health Authorities with smaller waiting lists for faster treatments. I am sure if you add your anxiety into the case for a transfer you should qualify for a move. The other option is to confirm you are available for any short notice cancellation (they do get them!).

I hope the above helps.

Best wishes - Brian.

Many thanks Brian.

I have already indicated I would be available at short notice.

For me, 18 weeks from referral will be 01.12.2025. As the latest update is the surgery could be late December or January, with no committment whatsoever, arguably they already know they won't meet that 18-week target and might consider whether anywhere else has a shorter waiting list.

At times my anxiety almost feels irrational, but I can't escape the worry I'm being exposed to risk and whilst it is an unfortunate consequence of the lack of resources and backlog of patients needing surgery, that doesn't cut much ice when the spectre of that risk comes back to haunt me.

Even with no medical background, delay for a patient requiring surgery for cancer must always carry risk or the patient wouldn't need surgery.

I will keep that timescale in mind over the next couple of weeks and ask about transferring once we approach the 18-week point.