>Just looking for a little positive outcome. I hate the thought of all the cystoscopies I will have to have.
Anna <
Hi Anna,
Your husband is right, you will deal with whatever it is you have to deal with. The place you're at now is a sort of limbo and very difficult. Things will get better though.
Two things...don't kick yourself for having smoked for 6 years, or anything else, it's not productive. And by the way, plenty of smokers and others who put their health at risk with life-style factors do
not get bladder cancer. Perhaps your tumor was caused by something you couldn't possibly know or control, so what is the use of blaming yourself. The other thing is...please don't panic. When you get more familiar with the territory you'll come to see you're far from alone and that this is a very survivable diagnosis. It's also a widely variable type of cancer. If your tumor/polyp is found to be low grade and non invasive the 5 year survival rate is 100%, with a risk of progression below 5%. Most tumors are of this type. If you're one of the less lucky 20% or so with more invasive primary tumors, there are treatments that work.
There's no use in agonizing until the pathololgy results come back and you know exactly what you're dealing with. Sometimes removal of the tumor is all that's needed and it never comes back. They do tend to recur, but not always. In the meantime hope for the best and hang tight. It's not advisable to begin researching possible treatments until you have an exact diagnosis.
One thing that might be helpful is to have a look at the stories left by folks on the Storyboard here on this forum, and to read the page on the main site - Tales from the Trenches
blcwebcafe.org/stories.asp
, you'll find stories from young women, pregnant women, women with neobladders, women doing other treatments and living to tell the tale.
Unfortunately you will be faced with life-long follow up, that's the nature of this beast. Find a doctor you can get along and communicate with, someone you trust. Be prepared to get a second opinion, maybe even on the pathology report itself if it shows something ambivalent. Path reports are subjective and a second opinion on the pathology can be helpful where a definitive answer is needed to guide treatment decisions.
There are a couple of email discussion lists that might be of interest for you, our large and active group has well-educated patients at every stage of the game, see
blcwebcafe.org/listinfo.asp
and is part of the Ass. of Cancer Online Resources (
www.acor.org
).
Sylvia Ramsey recently set up a women-only bladder cancer group:
health.groups.yahoo.com/group/bcsisterhood/join
Take care and stay in contact!
Wendy