Suggestion those with superficial non invasive

Hi Rosie,

You do make a very point - there is considerable differences for those who have superficial vs those wh o have invasive or metastic bladder cancer. I can certainly see how a newly dx'd person could be put into a state of panic...Maybe there can be a notice to that effect(perhaps there already is). With both types here it could be confusing.
I personally try to attend to those matters which I am familiar ( invasisve, RC, neobladder, chemo, age etc) although I will encourage anyone to seek prudent care and also offer compassion. I am grateful for the support here - for all of us whatever type of bladder cancer it may be. Bless you, Holly

Hi Rosie

That's an interesting point and the reason why, when replying to people with less aggressive disease types, I often will point out that I'm one of the "unlucky" ones whose disease became more serious. Although I actually I feel quite lucky that I got excellent treatment and my life, even in spite of the surgery is every bit as good as it was before. better probably. everyone is different though and I was fortunate with my surgery and comparatively young. The path to my cystectomy started with low grade disease and so I have experiences of that process to share with others.

I can't really separate my early bladder sparing treatment from my cystectomy and still feel I'm being honest although i agree that you could read some of what's said and mix it all togther. But I think your point is really true; people shouldn't take from this that they will end up in my situation. i'd add, when I was undergoing my cystectomies that the figures for progression I was quoted were more like 10%. So that's a 90% chance you won't face more aggressive treatment or lose your bladder. which is pretty good really.

there are a lot of very literate, passionate people on this site who have seen the sharp end of this illness and I think you are right that it's a pretty active group.

I think you are absolutely right too to focus on a more positive outcome for your specific circumstances.

cheers

tim

As I reported in another thread today, I had a panic attack at my last pre-op and cysto. I attribute some of that panic due to many of the posts I read of those with a more serious invasive type of bladder cancer. I must remind myself and others that those of us diagnosed with superficial non-invasive to concentrate on the posts in that section rather than reading all the posts on the forum. Our type bladder cancer - superficial non invasive is 80% of the cases nationally. This forum, however, has a predominance of people posting regularly in that remaining 20% who have invasive, cystectomy or metastic. Although I do understand the wonderful support available to those in that category through this forum, I think It is best for me and possibly others to not expose ourselves to the more serious typs and grades of bladder cancer on a daily basis, it does affect our minds. After that panic experience, I only read the sections of the forum under Superficial Non Invasive, Newly Diagnosed, Chit Chat. It is not being in denial but rather putting my condition in proper perspective to the national stats. Rosie