The journey has begun..

Hi FFS2025,

Sorry to hear of your diagnosis.

I too was diagnosed with a T1G3 tumor and am currently on week 5 of 6 BCG treatments. I had to have the initial TURBT and had the tumor removed and went to my big meeting to find out what they were going to do but then they sent me back in for a second one 6 weeks later as they said they didn't get enough sample material to diagnose if it was a T1 or T2 and needed to be sure. Then I had to wait another 6 weeks before they could make a decision on which path to follow for treatment.

The wait is agonising I know, it's the worst bit and feels really scary for you when they seem to can't decide what they're going to do with you. It's horrible being left in what feels like limbo so I understand what you're going through.

It took a while for me also to finally accept that this was actually happening and it wasn't a dream or something and I felt really really alone along the journey too.

It is a weird time as everything moves so fast at first I think for everyone and then suddenly you have to play the waiting game where it feels as if nothings happening but actually it's to give you time to heal from the TURBT so that you're fit and ready for which ever treatment you're going to have.

I was very lost and then I found this group and they've all been great with lots of support. It's been nice to feel also that I'm not alone. There's always people here who care and can help you through.

Good luck for Tuesday! I hope you get some answers and they can crack on with zapping this nasty cancer away! And keep us all posted on what they say, there's lots of people here who are going through many different situations and treatments and can offer help, tips that no one in the medical professional would be able to tell you (like barley water is our best friend when it comes to bladder spasms and calming down symptoms) and lots of support wether you're feeling down or having a great day!

Wishing you all the best!

 Kitty xxx

Thanks Kitty,

I'll look out for the barley water, although thankfully no bladder spams as yet.

The fly in the already nasty ointment for me is the diverticulum. As there was effectively no muscle layer behind the tumour then I don't think the Ta staging is all that meaningful so I am likely actually T1/T2 like you. It's good that they have you on BCG. From my discussion yesterday it seemed that they were recommending cystectomy. If isn't too personal a question, was this something they suggested to you or was BCG the primary choice?

Hiya!

They were originally discussing both but after my second TURBT they decided to follow the BCG route first and see how I got on. 

For me though, the worst case scenario is to loose my bladder although lots of people on the forum have had the cystectomy and say it's the best thing for them as they don't need to worry anymore and have peace of mind and have experienced minimal problems with it.

The BCG treatment was initially a rough ride for me and the nurse had said if it continued like that they would have to abandon the treatment and try something else like hot chemo washes or cystectomy, but for me, as it's gone on the symptoms have not been as severe as when I started. If you tap on my name and go to my profile I've keep a little diary you can read if you like? I know some other people on here do also.

At your upcoming appointment they will offer you what they think is the best route to take but  you will get plenty of opportunity to discuss any thoughts and worries. Lots of people find it useful to either take someone with you as it can be hard to take it all in sometimes or/and to write down any questions or thoughts and bring them with you to the appointment.

Did they give you a chemo wash during/after the TURBT?

As far as I know there wasn't any chemo as they haven't mentioned it, although if they gave this while I was still under general then I may be blissfully unaware!

I guess next Tuesday's discussion will make all the options clearer. (I hope!).

They would definitely have told you if they did.  They started it while I was still under and I was still having the treatment when I woke up from my op.

I hope your appointment goes well on Tuesday and then you can finally get on with getting better and beating this thing!

Wishing you all the best ️

Hi FFS2025 , They probably didn't do a chem wash because of the diverticulum. The bladder would be weak at that point and there would be a chance of it seeping out of the bladder. Best wishes. 

Thanks, and yes.. it appears the diverticulum has a whole host of implications. It sounds like it's fairly uncommon to have tumours in a diverticulum so there is far less information on it. Presumably no chemo wash means higher risk of recurrance.. Grr!

Hi FFS2025,

we can all empathise with how you're feeling and at the moment it is hard to say, 'right I had one of those so this is what I did.'

So I'll just say that I think it helps to go to these meetings with an open mind and ask some questions that give you their idea of likely treatments - what they prefer compared with other approaches and why is a good one. Another, which people say is unkind but I always ask, is what would you do for yourself or one of your parents in my position?

I was fortunate in having very little to decide - the tumour was muscle-invasive and so they told me it was a cystectomy I needed, after a course of chemo. I told my husband not to worry, I'd learn how to manage a stoma and then we got on with it.

We're still getting on with it and it was more straightforward than I think he expected. My chosen method of dealing with problems is humour, which seems to help the whole family cope.

When you have decided your way forward after this meeting we can give you information and support based on what we have learnt and you'll find plenty of input here.

I've never felt it was unfair that I have to deal with this - lots have far worse to cope with. And you, like me, have a good partner who will help I'm sure.

It's bad luck that some rougue cell started reproducing out of control but you didn't cause it to do that and nor did anyone else.

Worrying or feeling sorry for oneself is no help and denial risks taking your mind away from decisions you need to make. It's a bugger but has to be faced so you can come out the other side and live the rest of your life as you want to. 

Good luck,

Latestart 

Thanks latestart.. I agree with everything you've said, I just don't think I am there yet.

Denial was probably the wrong word. While I've always known that cancer is something I may have to face at some point, it has always been something that has happened to 'other people', usually on the distant periphery of my acquantances. I still feel I'm relatively young (54) and so I am the first of my contemporaries to have to face it and at the moment it just doesn't seem real. I have no frame of reference for how to feel or deal with the feelings I do have.

I will get there.. there isn't really any other choice!

I think we are all familiar with the shock of a cancer diagnosis. In my case, because my brother had had low grade BC, I was a bit blasé about it. Mine turned out to be TaG3, and I felt sick when they started talking about possible bladder removal. I was offered a choice of BCG or RC (as per NICE guidelines). In the end I chose surgery for various reasons, including best chance of cure. That was 15 years ago, when I was 56 - deemed young by my consultant. 

Your feelings are all very normal. Once you have a bit more information and can weigh up the pros & cons, risks and benefits of whatever choices they can offer, you will be able to come to terms with it and face the next steps, however unpleasant they are. Best wishes.