10 years later

User

Posted 02 Apr 2022 at 19:07

I sort of dropped out of these forums in 2016, as there was no sign of the cancer and I was getting on with my life, here is what has happened since:

May 17: Dilatation to improve flow worked for a few months

Feb 18: Major UTI, cured but led to retention self cath for 6 months then incontinence - sheaths and a bag!

Nov 2018:PSA shoots up from from very low to 20 inside 3 months

Bone scan, CTScan diagnosis: Mets in paraaortic lymph node & on the end of one rib, back on Prostap - PSA back down to 0.04 inside 3-4 months

2019 Increasing uro problems, anastomosis closing up causing v slow flow diagnosed as radiation damage. On list for dilatation, continuing with intermittent self cathetisation

................. COVID .................

Sept 2021: Dilatation

Dec 2021: Another dilatation & BNI followed by SEPSIS with Knee and Shoulder infections and a Spinal Abscess, leading to Paraplegia, 7 months in RJAH and MCSI Oswestry

Aug 2021 back to work in my NHS wheelchair.

Oct 2021 got £6500 funding for a Levo standing wheelchair.

Dec 2021 Knee infection comes back, massive abscess bursts new years day!

Jan 2022 Back in to Oswestry for 4 weeks, old artificial knee removed completely & replaced with anti-biotic cement one then intravenous antibiotics. Surgeon and Microbiologist want me on Penicillin but marked allergic to it, from childhood. Marvellous surgeon gets me at Wythenshaw for allergy testing inside a week!

Feb 2022 Not allergic to penicillin! so 1g qds for 2 months - thats quite a lot!

March 2022 Pelvic xray at MCSI check-up due to persistent pain, radiologists report states lesion on right proximal femur consistent with metastatic prostate cancer (new)

April 2022 Back to Oncologist to see what can be done.

So not cured but had 10 years without to much PCA trouble, athough the sepsis from the Dec bladder surgery was an indirect consequence of the treatment for it.

Waiting not to see what happens next, chemo maybe?

Cheers

Andy

User

Posted 03 Apr 2022 at 07:30

Andy, well you have certainly been through the mill, dilatations and SRT struck a chord but makes my journey seem like a walk in the park.

Best wishes for the future.

Thanks Chris

User

Posted 03 Apr 2022 at 08:19

Hi Andy, you tend to look upon prostrate cancer as one of those slow growing things where nothing happens quickly and monitoring can usually catch it before it gets too bad. Your story seems to really buck the trend. UTI and urinary retention is something I can identify with at the moment (post prostatectomy) but you have really been through the mill. I really hope you can get yourself sorted. Chris

User

Posted 03 Apr 2022 at 12:28

Hi Andy, You seem to be accepting all that happens well enough. How much did your psa rise in 2018 and what is it now? It sounds a quick rise. If you've only a very few mets or they trouble you they could perhaps treat them individually. Good luck, Peter

User

Posted 03 Apr 2022 at 15:13

Hi Batholith, it is great to see you pop up on here and to know you are still around even though there have been so many challenges over last couple of years.

Things have moved on a bit since you were last here and although chemo might be the next step, it is also possible that they will offer you early enzalutimide or apalutimide instead.

Are you still reliant on the wheelchair? 7 months in hospital must have been horrific!

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

User

Posted 03 Apr 2022 at 18:25

Hello Lyn, Peter and everyone.

Thanks for the good wishes :)

PSA in 2018, it went from about 0.0x (it dithered around below 0.1) to 20 in about 3 months, when I started on Prostap again it quickly went down to to 0.0x and has stayed there up to the last test I had in January. I have another test booked for tomorrow before I see the oncologist on Thursday.

Yes maybe he will offer something else, will see on Thursday and post what is said.

Yes still in wheelchair, I expect it to be lifelong, even the DWP gave me a 10yr PIP assessment! 3 months bedrest was wearing, boring and frustrating, but once I started mobilise again in the MCSI at Oswestry things were better, physio, occupational therapy, ... Lots of help from the amazing staff there. There is a marvelous garden there (Horatio's Garden : horatiosgarden.org.uk) just for the spinal patients which kept me sane. The MCSI and the other spinal centres are one of the unsung wonders of the NHS.

Andy

Edited by member 03 Apr 2022 at 18:29 | Reason: Not specified

User

Posted 03 Apr 2022 at 20:39

I hope you find a treatment that will help you for much longer.

Notification

Join the online community now.