High risk bladder cancer diagnosis

I have just had my second clear flexi check up after having had 3 recurrences so now have 3 months off all treatment until my next check so good news!   I was TA Grade 2 (high) originally so intermediate risk.  

That is wonderful news congratulations to you! I hope you are proud of yourself.

I don't really know about grading as they just said high risk

Yours will most likely be G3 if they were offering surgery. Do tell the nurses or other relevant staff that you feel anxious/scared before a procedure, they sometimes forget that it isn't routine to the patient. Also worth finding out if there is a cancer support service nearby - often there is a centre on hosp grounds.

Thank you so much I will look into this, I did email a local bladder support service but never heard anything back yet. However, I am hopeful 

My husband, is a lot older than you but equally keen to keep his bladder where it is, [and as a man everything else working too]. He was stage PTa but G3, ie high risk like you. After a TURBT, 6 BCG and immediate single recurrence, he was offered radical cystectomy ie removal, or more BCG or try Mitomycin as "equal" options.

But having something you don't want which involves such massive surgery and all the aftermath is hardly equal in our view. He opted to try the Mitomycin into the bladder and this has worked very well for him. [I do accept some people have the view they would have anything removed to feel 'cancer free']. Anyway he is now down to 6 monthly checks and that is all after about 4 years from the end of the treatments. This doesn't bother him at all, it's an excuse for a bite to eat at a favourite cafe afterwards.

Denby

I had this decision to make last June, grade 3 PT1 and cis, I asked for all comments on here as I was terrified and wanted to try Bcg, I know that is a risky decision but I just felt personally I could not imagine getting through the operation, I even met a lovely girl who had recently had a removal and had the stoma bag and she was amazing. I had 6 bcg and 3 mytomycin heated in the bladder and had first biopsy in March, thankfully all clear, 3 more Bcg for maintenance, slightly harder to hold it in for the 2 hours but coped. Been back into work throughout all of this. Just had camera check on Friday and it was clear, I am over the moon. More maintenance bcg in October and camera December so I can carry on with life for a few months. It is all stressful. Just had CT scan which little bit worried about as niggly pains in back quite a lot and you always fear the worst, it's moved up to kidneys? This is such a good place for advice and helps you to make decisions listening to various people, I listened to Denby, very sensible lady and others with all their experiences. Good luck Janine. 

You have a lot to take in and think about.Do you have much support from family and friends ? Love Jane x

Thank you, I really appreciate you taking the time to write this. 
congratulations I will keep you in my thoughts for your CT scan

At this time my Dad is dying from a brain tumour and my Mum has disappeared to live in the Orkney island. 
despite this I do have good friends who are so supportive. 
although I do find after you voice the news some people stay away. I guess they don’t know what to say.

I’m so sorry to hear about your dad.Yes I think people don’t always know what to say.My next door neighbour told me I looked ghastly which was true but I didn’t really need to hear it.It’s good that you have some supportive friends.Everyone on here will offer support too.Love Jane x