A bit of a mess

Sounds like you are going through hell but it’s just the waiting that’s impossible.

The MRI could be this week if there’s cancellations but surely in the two weeks. But the wait for reports after is to be factored in.

The spine, pelvis and ribs are the normal places that the bleedin’ prostate cancer lurks. But after the diagnosis it will get a right bashing from an array of treatments in the oncologists armoury.

Meet your powder dry, be patient, be strong and positive if you can. This is a long battle in front of you.

If you don’t already know, this is a couples disease so if you have a significant other, they will be as affected by this as you. So brace yourself.

The scans and biopsies and bloods are all the data need to make the diagnosis via urology to oncology and we are here to help.

Ask anything here and someone will respond that’s in the same boat as you or has been through what you’re about to. Keep us posted.

The waiting is hard, always the worst bit of the pathway.

Yes, my wife came with me to see the GP today. I saw another GP last week about the pain, night sweats, bleeding, fatigue and incontinence problems I have been having.

She asked me to sit in a chair and lift each leg up in turn. Then told me it was sciatica and to self refer to a physio, but to go to A&E if I cr@p myself because I would then have spinal compression. 

An earlier psa test was 0.7 (I am 58). She did not examine me at all but made the mistake of forgetting I could see the notes in the NHS app.

I emailed the practise manager. Shame it has to get to that.

Sorry for any typos. Adding this from my phone.

Hi Max2023 I agree with Mr U that the waiting is the hard part.  I don’t think bleeding/incontinence and PSA 0.7 sound like Prostate Cancer to me.  Were you given a DRE (finger up the bum) examination?  Normally, any tumour growth in the prostate makes peeing more difficult rather than incontinence.  I hope you get your MRI soon and the results come back quickly but maybe set your expectations about the end of August.  Please let us know how you get on and any questions, please just ask.

Hi David, yes I got the DRE and I agree, it is a very low PSA, so does not sound like Prostate cancer. In fact I got the referral note through on the NHS app on Friday and it says that the referral is Urology - Bladder.

Sadly I know your feeling of frustration.  I was first diagnosed in May 2024 with having Stenosis spinel channel nerve damage in my neck and lumber area, first my doctor referred me to Worcester Royal Hospital,  they tried arranging physio,  my doctor wasn't happy so referred me straight to the Royal Birmingham Orthopaedic Hospital,  this is where it got complected Birmingham quoted 50 to 55 weeks waiting to see orthopaedic consultant,  then everything got turned on its head, on a routine problem at doctors appointment,  we were talking,  with what I told him he decided to do a PSA  BLOOD TEST and did a internal examination,  didn't say anything of findings. Whilst on holiday 4 days into it had text advising to make urgent appointment,  saw a doctor 3 days later on of all days my birthday,  to be told the PSA was very high, things moved very quickly there after pleased to say treatment has been successful,  I had already informed Birmingham Orthopaedic so was put on hold to get cancer sorted first. I rang Birmingham end of May this year, they said be 15 weeks, week later got my first appointment to see a consultant  to access my condition,  had X-rays done before seeing him , compared previous X-rays from last year, confirmed the original diagnosis and it had worsened,  next day rang me with MRI appointment 5 days later for complete spine scan, 3 day after got another appointment for a neck scan , amongst this I had a letter from the consultant outlining the surgery and explaining the possible risks, with the prospect of if doing nothing every chance of within 5 ish years being in a wheelchair

 Yes its been frustrating,  but once you've in the system it will move quickly. Best of luck with everything.  Paul 

That does seem drawn out and tortuous but really glad they are now sorting things out. I just hope I get the MRI sooner rather than later. 

I have a neck scan 15th August and have just received the appointment with the consultant/surgen on 22nd September,  so like I mentioned once the first appointment takes place, the following appointments are fairly quick.  It's costing me a fortune as I live 38 miles away in a small town and don't drive and bus doesn't work , so having to use a transport provider costing £48 per appointment,  can't get hospital transport and can't get help towards cost

Every appointment i have takes 4 buses in total there and back and I work from home most days but I have ended up using annual leave getting back and fore because it takes so long. 

My wife drives but she is a teacher so can't just drop things. Work are fine with things unofficaly  but until I get a diagnosis they can be a pain if they follow official process

1. My problem where we live is firstly getting to Worcester to get a bus to Birmingham. We have a limited service,  either can't get to Worcester early enough to get to the early appointments or a later appointment I can't get back to Worcester in time to catch bus back to Tenbury wells.  I'm still working,  but only part time now as I'm 70, I had retired end of March this year from full time, but having been diagnosed with having prostate cancer thought time to call it a day. Once I got the all clear apart from 6 monthly PSA checks,  decided to keep active and keep grey matter ticking over. This becoming increasingly difficult due to the Stenosis worsening.

Yes it's a balance keeping active or keeping a job. I am partially sighted so the world is safer if I do not drive. Hence the buses.

We live in Wakefield but my wife's family is in Wiltshire, and mine in Monmouthsire. We are very close but not in each other's pockets so to speak.

I am 58 and we still have a mortgage to pay off etc, though to be honest we are lucky in that we can probably pay off the mortgage in the next few months which means I won't need to work.

I have plenty to keep me active such as my dog  'Max' (I have used as my image here) but at the moment I am literally gritting my teeth to get through each day and swallowing the painkillers.

Best wishes 

Simon