Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Guidance Please on MDT/Results etc ?

Northern Normy
Posted by

Hi everyone, a bit of background, 3 weeks ago today I had a rigid cystoscopy as a check for issues I was having with my waterworks as initial prognosis was prostatitis, (it cleared up after antibiotics but came back hence this line of investigation) I was also to have a prostate massage. I awoke from the theater to be told I had bladder cancer and the tumour needed to be removed.  (The prostate was left alone) 2 weeks ago today I had the tumour removed. (TURBT) Came out of hospital next day with a catheter fitted which was removed last Monday. (boy that thing was difficult to get used to!)  Last Thursday I had a CT Scan and on Monday the 8th July it was the MDT meeting to discuss next steps. I have my ups and downs and I try to avoid the black cloud that keeps sneaking up on me but it does get difficult and my anxiety quickens. I'm also experiencing niggly little pains around my kidneys & lower stomach area - don't know if I'm just "picking" everything up. Its also very painful when I pass water - like razors. Needless to say, I’m now pretty desperate to find out the results so I can draft a battle plan to fight this. Is there any way I can gain this information? I’ve just received an outpatients appointment with the consultant for August 1st but that seems a long way away - especially not knowing the results?? Thanks

rily
Posted by

Hi and welcome to the community, although sorry to hear the reason you find yourself here. The timeframe you have been given is about average. The waiting is always an anxious time and we are all familiar with it. It is unlikely you would be given any information over the phone as they like face to face discussions. At your consultation, you will be given a stage and grade of your tumour and this determines what the next steps are. The peeing broken glass feelings should start to ease off. Aches and niggles are normal. Although it is not visible, you will have an open wound in your bladder which takes a few weeks to heal. Saying that, if it does not get better or the pain gets worse, then seek medical advice. You could try phoning your consultant's secretary to see if you can get an earlier appointment, but once the initial TURBT is out of the way, things tend to go at a slower pace, so unfortunately, we usually just wait. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Teasswill
Posted by

We're all familiar with the awful waiting time & the worry about every little ache or pain. Some hosp are a little faster than others, but I think you will need to be patient & wait for Aug 1. If any further treatment is needed, the bladder needs time to heal anyway before starting, so the wait will not delay this. It's important to have a face to face discussion about the result, its implications & appropriate treatment options.

Drink plenty of water to flush out the bladder, the pain will gradually subside. Take it easy as the body is still doing internal healing even though there's nothing to see externally.

Best wishes.

Denby
Posted by

Hi Northern Normy, So feel for you with the waiting, as others say both this is all part of the routine and also the wound[s] [my husband had multiple tumours...] need to heal. Drinking lots yes yes, lemon barley water is very good for waterworks [my old old GPs advice]. And if you are concerned about infections what with the prostatitis/antibiotics history, ask your pharmacist if they approve of cranberry tablets for you.These have the useful property of stopping bugs sticking to the lining of your waterworks to cause infection. I've sent up a little prayer the hosp don't mislay any of your notes causing delay as we got told today had happened extending delay to hearing back....

Meantime occupy yourself as nicely as you can to take your mind off it all. You've obviously found this forum but when you are thinking abut it you can draft your battle plan well armed with reading the info Macmillan offer-it was a darn sight more than our hospital offered before giving us a rather 'shotgun' decision-making option...whatever they say at your Aug 1 appt don't do anything drastic without checking back on here for the wealth of experience, our Dr wanted an instant answer but it isn't compulsory to give one! Don't know if you will go alone but I'd always consider taking someone along if you can, just two pairs of ears better than one.

Very best,

Denby

Northern Normy
Posted by

Thank You, that black cloud got a grip of me earlier but thank you for your insight- its calmed me down a tad.  I've been reading loads of the posts and my heart goes out to everyone- they give me comfort and probably more importantly hope xx

Northern Normy
Posted by

Thank You xx

Northern Normy
Posted by

Thank You, I keep forgetting about the actual surgery having its own impact- Thank You again for your kind words x