MDT meeting today - on tenterhooks....

Hi Baldyboffin . Good to know things are on the move. Bit of a wait now though to hear the next step. I hop all goes well. Best wishes.

Hello. I, think you are going through the stage that many of us have faced. You have symptoms, have probably had to research some of the medical terms you've picked up whilst being 'processed' and are now waiting for the various specialists to assemble, discuss and agree an initial plan of treatment. This can put the mind into overdrive. Soon you will have some answers and this will help you to focus on the way forward. My symptoms in 2017 were similar to yours but instead of 'gross haematuria' they called mine 'frank haematuria.' My lesion was 7cm, non-muscle invasive, but the bleeding prevented adequate samples from being collected during my two TURBTs. I've never had any grading details. Radiotherapy plus the aforementioned TURBTs has left me with a scarred bladder which, if allowed to expand and contract normally, tends to bleed. To alleviate this, I've had long term Foley urethral catheters since late 2018. No other treatment or regular reviews, just a palliative regime and able to live more or less normally.

Until you are called in to discuss the next steps you'll probably be subjected to wild speculation generated by your mind, fuelled by outside information but everyone on here will have had a different experience. Google won't help. Members of this forum will do their best to provide moral support as you proceed through whatever treatment path is recommended for you. Good luck, best wishes - and apologies for the wordy response .  Ray (male, 76)   

Try not to over think things MDT discussions are normal to discuss how to treat it and a plan of attack. 

It doesn't mean it's necessarily really bad news etc, they have MDT discussion for me and mine is non muscle invasive and low grade etc so near enough the best type of cancer ir could be, yes it's still cancer and serious no matter the grade etc. 

Try not to worry about what if's until you actually get some proper answers, waiting is the hardest part no doubt we have all been there. But once you know more it get a bit easier especially knowing there is a plan to attack it, the plan will change as is needed as time goes on, but they start with the basics and then take it from there like the TURBT and mitomycin in your case. 

I assume possibly wrongly they did the mitomycin at your TURBT not as a 6 week once a week course like I had? 

Sadly that didn't stop recurences for me, hence why I'm about to complete this 6 week course of epirubicin which hopefully will work. 

I hope things go better than you expect, but I've learnt to not expect much and just see what happens and take it each day as it comes. 

Yes, it was mitomycin instillation straight after the TURBT.  Thanks for your kind words!  Sometimes just need to vent frustration....

No bother vent as much as you need to, it isn't an easy ride for anyone whatever the symptoms and grading. 

Depending how your hospital works, you might get an appointment at short notice. I was told they would write with results, but got a phone call to come in. We may have already said, don’t be surprised if they want to do more tests before advising on most appropriate treatment. Hope the wait isn’t too long for you. 

I have been maintaining a folder with all relevant documents on my computer. After my first TURBT, I asked the Nurse specialist to email me the pathology result, which I added to the folder. Similarly after second TURBT, when all it showed on biopsy was inflammation due to the Mitomycin. If you request it, they will send it to you; it is your right to have the report. With the report, you can in most cases figure out what your treatment is going to be. After both TURBTs, I asked for my notes whilst in the recovery and went through the operation notes and pointed out to my CNS, the error in the second op notes where it was marked as Grade 3 when in fact it is Grade 2 [sloppiness should be pointed out and not tolerated]. Similarly, make sure she sends you the MDT report, which will have all the information including your radiology. In short, take control of the process. Do not wait for the system to take care of you. Delays happen a lot for all sorts of silly reasons. 

I have hard copies of the notes for all my meetings and procedures going back 10 years. More recently, my notes come up on my NHS app sometimes before the post. Best wishes.

Hi Simon C25

I am so sorry to hear about the recurrence, which is surprising seeing as you had Non muscle invasive, low grade and so LOW RISK bladder cancer. There seems to be lack of concordance between NICE and British/European recommendations. Fortunately, our urologists are following the more aggressive European/British recommendation with BCG 15 doses in first year with three check cystoscopies and biopsy. NICE recommends Mitomycin 6 doses at weekly intervals, one check cystoscopy and discharge after one year. NICE recommendations are based on Cost-effectiveness rather than an attempt to reduce/eliminate recurrence. Their rationale is that even if recurrences occur, it is likely to be low grade, low risk and so do not affect survival; not something patients want.  

I wish my NHS App was that good. It is pretty useless apart from showing appointments.