Neobladders in the UK

Hey sarah
I had a 4 mo IVU, no cat scan mentioned and I have flexi coming up in June and an ultrasound in July. I have bloods taken for the kidney function, PSA (I had a prostate tumour too) and bicarbs for acidosis. I have to admit it seems a trifle arbitrary and also that its hard to keep up!! A chest xray has been mentioned this year but I have no date yet. I also have numbness down my groin on the left hand side but Im pretty sure its improving. I think it's where the nodes came out too. I'll try and get a more accurate picture at some point. I need to see my medical records also at some point - although after 14 years they are mightily dense! Where are you BTW?

All the best

Tim

Hi Tim

You had your neo in October last year? Out of interest can you tell me what your monitoring has been so far?
I had a cystogram 6 weeks post op, then IVU at 6 months with blood profiles (bone, liver, kidney function) my GP followed up with C-reactive protein and ESR at around 7 months as I have had back pain. All has looked OK so far.
My next routine checks are pelvic ultrasoound, urine cytology and a flexible cystoscopy at 1 year, but no mention of CAT scan.
I'm also beginning to suspect I may have some nerve impingement in the groin (possibly where the lymph nodes were removed) as I have mild intermittent outer thigh neuralgia related to exercise. (I started running again around Christmas and it began then).
It would help me to know what other health districts do, as I suspect the absence of CAT scan may be funding related.
Kind regards
Sarah

Hey Sarah
Yes, I think I lucked out being in Bristol. In fact my BC showed itself within 2 years of moving here 14 years ago. Maybe it was fate! It does have a good reputation. My surgeon was reputed to be very good. But I've yet to hear one described by colleagues as "very bad"! He seems to have done a great job though so far. You have a right to this level of treatment too. If you haven't already you should start making a nuisance of yourself. I know I did. As I mentioned in another thread, writing things down gets things done far better than talking. A letter HAS to be answered. My sis is a lawyer so I know this. If I wasn't happy with my treatment she encouraged me to drive to the hopsital and hand-deliver letters! I only did it once but it did work.

The bristol cancer help centre (now Penny Brohn Cancer Care) is also a fantastic resource here in Bristol. They have a website and a helpline. They are a great organisation.

And thankyou for your kind remarks. I only wish I had more time to be here. My life's getting back to normal again which is bringing it's own weirdnesses! There's a kind of post crisis melancholy!

All the best to you

Tim

Sorry for some reason my comment appeared on the the wrong thread. I was commenting about the picture Joe posted of the neighbors fueding. I have not had that surgery either, Sarah but can certainly appreciate how much more difficult the post op period is with no follow through or discussion from your medical team. There are some terrific knowleagable people on this website that can and are being of help.

Hi both Wendy and Tim
Thank you both for the incredible help you have been, although I've only just posted I have read your supportive words to other users since finding this site last June.
Well as far as being a mentor is concerned, I only have my experience to share, but I would willingly do that.

Tim - you are lucky to be in Bristol, I hear very good things about the hospitals there. I envy you the rapport you have with your team. Maybe if I last out as long as I hope I may have the same eventually! It's just the non-continuity of care that worries me, and the fact that no-one takes the time to tell you what the next round of checks will be or what they are monitoring. I haven't had either bicarbonates or B12 checked yet. I do have an upcoming appointment for a pelvic and bladder ultrasound, and the letter asks me to drink one and a half pints of still liquid an hour before my appointment and not to empty my bladder until they have done the scan.......!!!!

I have been taking the most incredible amount of care keeping my neobladder size to around 300-350cc. I really really hope to be using it for quite a while and I know I don't want the "floppy bag" that leads to hypercontinence in some. It made me smile to imagine trying to hang on to a pint and a half (about 600cc??) - I am continent until I'm not and then it's man the pumps. However, it just emphasised the fact that neobladders are unusual and you need to be your own advocate.

Kind regards
Sarah

Hi Sarah
I'll start off by saying that I'm a man, 44 years old (next week!). But I had a similar diagnosis to you and in the UK. I had my neobladder here in Bristol in October of last year. I was thinking how you reminded me of my astonishment at just being let loose with my new plumbing with not much aftercare at home. Those first few weeks are very scary and I remember there being so many unknowns that I felt I needed guidance on. In particular I was incredibly worried about the new neobladder stretching to bursting point and watched my bag like a hawk! I also had the sweats you describe (although probably for different reasons) and remember waking up absoloutely soaked in sweat on at least two occasions. I was left alone to monitor temperature and the various infections and their treatments. I have to say though, on balance, I was given a load of telephone support by the uro-oncology team at my hospital and always met with people on that team that i'd seen before. my consultant has been really good, done a really great job and made the effort when Ive been in the post cystectomy clinics, to come and talk with me. His registrar and uro-oncology specialist nurse and staff in general are all personable and supportive but also incredibly overworked. I have been going for BC treatment for 14 years and in that time Ive had periods where I didn't know who's care I was under and it's bloody annoying. I can totally understand how you would find not seeing the same person twice really unnerving. Consistency is everything and we grasp at the known and familiar when we're facing the unknown every week!

All the best

Tim