RESULTS FROM 1ST BIOPSY

Hi em444. Good to know things are moving swiftly. Hospitals seem to be getting back on track after all the covid backlogs. A follow up TURBT is fairly standard just to mop up anything they may have missed and take more biopsies. The CT scan is also standard just to rule anything else out and add to the jigsaw. Once they have all the information together, they will then come up with a more accurate diagnosis of stage and grade and come up with a treatment plan. Even if it has gone through the bladder lining it can still be treated successfully. Best wishes.

Alas, with these TCC bladder tumours, size is not an indicator of grade. Mine was described as small (2.5 cm) - consultant did say unusual that it was small and high grade. Probably looked superficial. If only into lining that's still good news (ie not into the muscle). The second look is standard in this case, to confirm stage. 

Your partner may well be offered difficult choices for treatment - do be sure to ask lots of questions about pros & cons, risks & benefits & long term statistics (although no-one can predict a personal outcome). Feel free to ask here about personal experience.

My tumour had spread into the muscle lining, but was still localised. I had three courses of chemo followed by the removal of the bladder. Now that was five years ago and I've been clear all the time. It took some readjustment, but it's been fine. I know it seems drastic, but that is my story. Now just to clarify, there are other treatments that are effective and you will get full discussions with the consultant. Fortunately, most forms of bladder cancer can be successfully treated.

My husband has been told his is muscle invasive. He is awaiting oncology appointment to start chemo. He is really scared of how the chemo will affect him, he’s been told he may need 4-6 cycled then bladder removal 

Hi again,

Well I've been there and it all seems a bit frightening at first. Now a lot of people fear chemo, but there are a lot of myths about the side effects. Everyone reacts differently and you are given drugs to treat nausea and fatigue, so ask questions.

I didn't experience any strong side effects apart from fatigue and I really wasn't aware of it until a looked back. The sessions are painless, but can be long and boring, so take a book etc.

The only time I had a bad reaction was on the last cycle and I was violently sick the following day, as it knocked my liver function out for a few days. 

Frankly, the fear of chemo is bigger than the actual experience, but that's my experience.

Thank you for that, I’ll let my husband know. And how long after chemo do they remove your bladder? 

Hi Pixie. Removal is not the only option in some cases of muscle invasive. I was muscle invasive (T3/G3)  and went the radiotherapy route to keep my bladder. That was several years ago. Chemo has different effects on different people. I didn't have a problem with it. Best wishes. 

My husband is G3, PT2, he was told he needs chemo then radical cystectomy 

Hi,

I finished chemo in August 2017 and had my operation in early October. You have to have time to recover from chemo, as you have a compromised immune system

Hey - I was told it was superficial, it wouldn't affect my quality of life, I'd just need an op and then surveillance.  I'm now in the middle of BCG treatment for T1 G3 cancer.  That is the one thing I would do differently, question hard and get clarity at the start because we were spoonfed tiny bits of information, only really got clarity when it was clear that we had done a lot of research.  

I understand that playing it down reduces anxiety etc, but it really didn't help us adjust.

I do put this down to the initial consultant, who made so many assumptions based on my age and sex, initially the original cystoscopy was to 'put your mind at rest because I'm so confident it's nothing'.  Just makes it harder to deal with when you get the news.

You'll get a much clearer picture after the op tomorrow - lots of luck, wishing you both the best!

Best advice I can give you is just to focus on the next part of the path, don't look too far ahead.  I've got 3 more BCG to go, then 6 weeks off, then first cystoscopy.  I can't think about that cystoscopy now, I'm just going to enjoy my 6 weeks off and have a great Christmas (ie pretend it's gone away for a while, because I can't do anything about it!)