Newbie to the World of Bladder Cancer

Hello Mugwump and welcome to the group, although sorry you find yourself here. The initial appointment and being told the news you did not want will be familiar to many of us. Early days for you yet and it takes a while to sink in. There are positives in your story. Finding it almost by accident is good in the fact that these things do not present many symptoms until further advanced, and so it seems yours was caught early. Ta is very early stage and grade 2 is the lesser aggressive type. The mitomycin is generally to help mop up any rogue cells and helps reduce the risk of recurrence. As regards the follow ups, we learn to leave dignity and embarrassment at the door and take these in our stride. These follow ups can be reassuring, knowing we are being looked after. Please feel free to ask any questions, or just have a ramble if you feel like it. Best wishes.

Hi Mugwump it really can be a hammer blow when you hear the word "cancer," but catching it at an early stage is the best thing. Also the speed at which it has been dealt with. They really are on top of it , it sounds like.

Fingers crossed the mitomycin course will put an end to it.

They will keep a careful eye on you for quite some time , a positive to know you are being looked after.

I wish you well going forward and keep us up to date. 

Three years ago last week we were in the same position expecting a diagnosis of  a urine infection the diagnosis of bladder cancer hit us like a ten ton truck Life was bleak and black Fast forward 21 BCG treatments my husband remains all clear The best words to hear

Your diagnosis is less aggressive than my husband's .I hope you soon have a treatment plan underway 

This forum is amazing it has kept me sane especially in the early dark days I've found myself wide awake at 2am rambling here 

It's early days and new and scary but hopefully like us you will come thro

Love

Wilbert

Hi Mugwump pleased to meet you sorry for your news but the good thing is you have caught things early and you will be ok keep in touch with us all you will get so much help good luck xxx

Since I started this thread last year, I thought I'd update it even though I have another thread about Methotrexate. Putting it here sort of keeps the story in one place.

I had the 6 weeks of Mitomycin in June/July. A better bunch of nurses I could never hope to meet, they made feel so much at ease to the extent that I could laugh and joke with them even at my expense. I ended up as the guinea pig for the staff from short stay as they had nobody qualified to give Mitomycin.

In the August I had my first cystoscopy done by Julie one of the nurses. She wasn't happy about a patch so got put on consultants list for diathermy. That was done about a fortnight later in September. It was a strange situation though. It was being done by one of the registrars but rather than a nurse getting me from the endoscopy waiting area it was the consultant who was observing. When the consultant saw what was there he took over, rather forcibly I thought.

I likened diathermy to when I was a kid and I used to put a PP3 battery across my tongue until I could bear it no longer. It was the same feeling but inside. Unfortunately I wasn't in control of when the pain stopped.

December 31st. First checkup after the diathermy. I was absolutely positive he was going to say all clear. Come on? 7 doses of Mitomycin plus diathermy. There shouldn't be anything there should there?

No all clear, instead it was 'I don't like that red patch we need some more biopsies'  What a blow, I'd psyched myself up for the all clear so I had a long way to fall when it didn't happen. To such an extent that I felt that icould not be positive about it any more and had to take worst case scenario to preserve my sanity. I did refer myself for counselling at that point, The cancer was really just the last straw but that's another story not for this board. 

Mid March, rigid cystoscopy with biopsies and diathermy. Consultant told me while lying in the anaesthetic room that if biopsies were positive then I would be on BCG. Results in 2 weeks.

Two weeks comes and goes and heard nothing so rang the urology nurses. The one I spoke to said 'The histology results are back but we (the nurses) are not allowed to tell you the results, but what I can tell you is that the the results have gone to the multidisciplinary team to decide treatment. You can work out the results from that'

So nearly 7 weeks after the cystoscopy I have an appointment with the consultant on Wednesday. Whether I fell through the cracks when it comes to results I don't know.

It should be an interesting appointment as not only do they need to take Covid-19 into consideration but also the fact that I am on Methotrexate for my psoriasis.

I'm sorry if this seems like a story but I suppose I am using this to document my journey through BC

Thanks for sharing your story. Hope the Wednesday appointment goes as well as possible. At least you will have some clarity. x

I’m sorry to hear that your mitomycin treatment was unsuccessful and that you have another reoccurrence. I had my reoccurrences before my mitomycin treatment and it has worked for me since I had the treatment last June. I’m under no illusions though the that the cancer could come back. 
I hope your consultation goes well on Wednesday, no doubt delayed by the virus, and they can sort some treatment out for you.

Do let us know how you get on, there is a lot of support on this forum.

Best wishes Luce

Hi There deep your chin up things are under control for you I to have ad it back many times lost count at number 20 but it is important to stay positive I know it can be very hard but we are all here to help you through xxx

Hi Mugwump 

My thoughts will be with you on Wednesday 

Inanna xx 

To keep the story going, I finished my appointment 30 mins ago. Only 2 hours late. Why are consultants so crap on time keeping?

As I knew, it's still there but has now gone from G2pTa to CIS. They plan to give me BCG when Covid dies down but need to speak with dermatology about my Methotrexate. 

Since they knew that I was on Methotrexate why weren't dermatology invited to provide an input into the MTD when they were deciding treatment?

So that is it for now.At least I know where I stand, it's just waiting for the right time to begin treatment. I am a lot happier just knowing