Hi Bubbles,
I'm sorry about the diagnosis. T1a, high grade is very serious and the uro is being most prudent suggesting bladder removal. Because of the danger of understaging, also because of his young age.
He has a long life ahead of him. Some men find the idea of cystectomy a fate worse than death, other men don't hesitate. I hope your husband has no trouble dealing with the harsh realities. There is every reason to have hope, he can survive this. And that's what it's all about.
Dana Farber is an excellent place to go, I hope you're lucky and find a doctor you can relate to. You need a surgeon who can do all the newest techniques, including nerve sparing, internal pouches and neobladders. Many men still keep erectile function these days after bladder removal. You should aim high.
In case noboby tells you, there is another important option, and that would be bladder sparing using combined modalities of chemo and radiation, but patient selection criteria are very strict. If you want to learn more:
blcwebcafe.org/combinedmodalities.asp
I think Dana Farber could do this, but Mass. General are at the cutting edge with this approach, and it's about teamwork.
Something I learned recently and which I find very important: Survival statistics showed that progressing from stage T2a to T2b had as much impact on survival as distant metastasis. That's a very good reason to take definitive action before this can happen.
Survival for a T1 bladder cancer is very good after cystectomy, you can see the survival stats here:
blcwebcafe.org/cystectomy.asp
I know many men who've gone through what you're husband is going through and if you want, I can find someone he can talk to, either phone or email, whatever he might want.
You also have to take time to look after yourself. There's nothing more stressful than what you're going through (not that I have to tell you that). I was primary caregiver for my sister, that was a worse case scenario. Not long after her death me and my other sister both got dxed with cancer! Another worse case scenario, but it can happen. I know I was on the verge of a nervous breakdown through it all and feel it was the stress that made my own tumor grow so fast. So I can't say it enough Bubbles, please take care of yourself as well.
Wendy