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What’s a T1 urolithial?
I got the info from the doctor’s office today. I’ve always had CIS in the past, but this one was a T1 urolithial. I’ve read the staging and understand that it’s just beginning to invade the connective tissue ….I think???? What’s a urolithial and have I got this right? So confusing!!!!!! First BCG/Interferon tomorrow. Fingers and toes are crossed that it’s not a sore day for me Saturday!
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6 Replies
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Sorry Moo
I deleted my previous post as I thought I was getting confused about your treatment but thanks for information. You said the stage (T1) but not the grade? Sounds like you’ve been through it. One or two CIS growths each appointment still seems like a lot. Hope it all works out for youtim
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Hi Tim,
The regrowths were every 3 months not every month. And yes, it was incredibly high. That was during the BCG days. They were all CIS I was told. Once I took the mitomycin, things settled down to just one or two each appointment every three months. I’ve had no treatments now for a year and a half, and the growths that I had were all CIS up til now. I’d never been given any grades until today. Just that it was CIS.
Blessings,
Moo -
Moo
Wow. 48 BCGs and 24 Mitomycins. I’m speechless. What kind of toll has that taken on you? I’m 43 and I did have my bladder removed after two years of CIS (though I suspect it had been around longer) and G3 tumours (Ta). I had BCG for this time (probably about 15) and it buggered me! I’ve been in and out for recurrent tumours for 14 years. I’m not surprised your new doc asked if you’d been asked about bladder removal as a lot of docs (mine included) would probably have pushed for it already or strongly recommended it. Maybe you should ask him why he asked you. I’m amazed it was mentioned only briefly!
I’d just like to say that, if you do ever face the cystectomy route, I’ve come through mine in really good shape and now feel little different to how I did before. In fact I’m astonished at what a good surgery it’s been for me (it isn’t for everyone). Age has definitely played a part in that (I’m young for this op but there are plenty of people here around our ages who’ve had it). I think I’d rather have a neobladder than false teeth but people have an immense capacity for adapting to whatever. I may have been a bit pre-emptive but I’m happy that I made the decision whilst there was a really good chance that the disease was contained. There are a number of very well respected surgeons who favour early cystectomy as a potentially curative route – particularly with BCG failures and with modern surgery techniques and diversions. I also feel free of the regular peeks and pokes and I’ll soon, if all goes to plan, be on yearly check-ups. They still happen but the at a a far lower frequency and I feel like I’m beginning to get on with my life. I definitely feel free of the “has it or hasn’t it grown back” syndrome. You wouldn’t choose cystectomy as a vacation but for me the horror of anticipation wasn’t matched by the event – gruelling and unpleasant though it was! But that’s me.
I’m sure your doc has explained to you the potential seriousness of CIS which can be a highly aggressive form of bladder cancer. As you obviously surmise, the T1 (particularly in combination with the CIS) isn’t welcome news either.
Anyway I don’t want to be the one to shake your obvious confidence in your situation, and good on you for not letting it bring you down, but I’d find out what you can from here and other sources and make sure you are clear what you are dealing with. And please be careful!
My very best to you Moo
Tim
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ADDENDUM: I’ve been really good this past year, only growing one critter at a time, so this one came as a surprise.
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Hi Tim,
I’ve had CIS for 12 years now. 48 bcgs, 24 mitomycins. This is the first invasive tumor that I’ve had so far. I’m scheduled now for 24 months worth of bcg/interferon. The first one’s tomorrow in the series of the first 6. I’ve never had this combination before. I have absolute faith in my doctor. He’s the department head here at the London Health Sciences Center and pretty much deals only with bc. I’ve only been with him for a year now, but he’s been excellent thus far. He did ask last year if my previous doctor had ever suggested removing the bladder….I’d been sprouting between 2 and 13 CIS’s in 3 months for a long time….I said yes, it’d been mentioned briefly once. My thought is that at 42, that’s like asking me if I’d like a set of false teeth. NOT!!!! However, I’ll do what I have to to stay healthy and alive. It’s not been mentioned again and I’d rather not go there if I don’t have to.
I really don’t know what to think now, but I’m going to keep the same attitude as I always have…..this stuff never keeps me down and I just keep doing what I do. It’s a little scarier this time knowing that it’s invasive, but hey, I’ve kept my bladder and my sanity thus far, so it’s all good. 8-)
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Hey Moo
It’s as you say a tumour with roots that extend beyond the surface (urothelium) of the bladder into the Lamina Propria, the layer immediately beneath. Beyond that it’s muscle (superficial and then deep) and you really don’t want it going there! urothelial means it originates in the urothelium. I’ve also been at the mercy of CIS so I know how you feel. With your pathology (T1 tumour with CIS) I’d be ready to take a tough stance if it’s looking persistent. What’s your history Moo? Sorry if it’s elsewhere (I’m just being lazy!)
All the best
Tim
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