Guidance Please on MDT/Results etc ?

Hi Northern Normy 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.

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.

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

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

Thank You xx

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

Hi Everyone, just wanted to give a quick update and ask a couple of questions please. 

I got my results and was diagnosed with   pT1 G3 carcinoma of the bladder with CIS, this was quite a shock. My treatment options were bladder removal or BCG. I chose BCG and the consultant agreed this was a reasonable course of action due to my age, 51 years old. I am now onto my 5th week and although it is rather uncomfortable having the vaccine put in it is manageable. Its afterwards for me when it gets difficult. I start getting a really bad headache within 15 minutes then once I've passed the "vaccine" its painful weeing alongside blood being passed. When I eventually get to bed ( I'm constantly at the loo at this stage) I'll be up early for a toilet call. This one really hurts but it does settle as the day goes on. However, I am absolutely wiped out on this day, no energy, no get up and go, miserable , worried and I predominately just keep nodding off for this day. I get my treatments on a Wednesday PM and although I start to pull round on the Friday I don't really start feeling my self again until the Saturday morning ? - is this normal?

I was planning on going back to work a couple of weeks ago but this knocked me back, not sure If I'm even up to it yet as my moods are forever changing. Some days I'm fine others I very down. ( I have a senior managers position and what I have done naturally for the last 15 years seems beyond me at the moment - it frightens me). 

I've got another rigid cystoscopic examination coming up soon to assess these 1st 6 weeks of treatment so fingers crossed .

Sorry for rabbiting on but I mainly wanted to ask this - how long is the vaccine supposed to stay in the Bladder? The technical sheet that the nurse ( who is brilliant !!) gave me says 2 hours but she says 1 hour is sufficient - is this the same for anyone else here?  Thank You 

Hello Normy,  I am also having BCG treatment, doses 16-18 are due in October. I get the ghastly headache too, I have wondered if it's dehydration since I usually stop drinking a couple of hours ahead of treatment. I think taking a couple of paracetamol (must not be ibuprofen) ahead of the appointment helps. I hold the dose in for the required two hours generally. One time I just couldn't and raced into loo after 90 minutes. I was anxious I'd blown it but the nurse said the first hour is the critical one. The NHS encourages two hours hold as far as poss. I have heard people in USA saying their urologist says one hour is sufficient but personally I'd rather err on the side of caution. I really want this stuff to work. I also experience feeling wiped out for a couple of days, sometimes there or four days, I think depending on my general health at the time. As I'm retired I organise ahead, clear my diary, get some easy meals, just flop in front of TV and let the world go on without me. I'd suggest staying off work till a couple of weeks after the second rigid cystoscopy if you can. Then you may get 3 months off treatments before the maintenance doses start and can re-think things. This is a time to put yourself and your health first. Oh I also buy myself some really nice chocolate for BCG days, because I deserve it! Thinking of you. x

My husband  had his 24th bcg this morning  as is currently  in bed He always has a headache after treatment it had been migraine  like but a cup of very stong coffee rubbing his temples with tiger balm or a headache stick and spraying his pillow with lavender in addition  to paracetamol  has brought it too "just bad".He has multiple painful  trips to the loo and   lose his appetite .Usually  he is back to normal in 36 hours .

We have queried one or two hours to hold bcg and our nurse is adamant it's one hour As it's worked to date we are happy to take her word Also we cling to the belief if it's making him feel bad his body is fighting  the stuff and that is what is required 

Its relatively early days for you and it took us time to adjust and settle to getting on with life so allow yourself time 

Use this site its been a lifeline for me 

Very best wishes

Wilbert 

Congrats Mr Wilbert just 3 to go! I'm hoping to follow your example and get into the 20's! x