Diagnosis for spreading?

This post has gotten very off topic and I am going to lock it. Please feel free to post from now on in the non invasive area as you have now been “graduated“to non invasive. I am very happy that you have gotten the message that we all have to stay on top of our individual situations. Keep pushing for that second opinion.

You are welcome to post anywhere on the forum you feel is appropriate. We have at different times talked of making different forums for invasive and non invasive as some find it stressful reading of people that are dealing with more advanced bladder cancer. We as a board decided to not do so do to the fact that we are a family and we feel that we should not be segregated by our diagnosis. If someone is upset by another’s situation we are all big people and know by the titles on the forum categories what they are about and can chose not to go there.

If at any time you have questions about where to post and what is proper etiquette on the forum please feel free to email me directly at This email address is being protected from spambots. You need JavaScript enabled to view it. or you may go to the contact us button in the main menu.

Vi,

How anyone handles the stress of a new diagnosis of bladder cancer or any other cancer differs. Some need to know every little thing about it some want to be an ostrich. Ostrich may be more comfortable but the fact is they are the ones that do not do as well as the ones that get to know their situation. You are doing the right you are taking ownership of your health care. Being here and seeking support and knowledge are the wise thing to do.

As Ann says some of people that are low grade non invasive come when first diagnosed and then move on with life when they find it is just a surveillance thing for them. And only come back if they have a reassurance. I wish they would hang around so that they can help those that come after them. But that is human nature many don't want to hang around things that alarm them so they go on.

What you have to learn when dealing with a site such as this is that bladder cancer is many conditions under one name. Non invasive low grade has a survival rate of around 98%, being caught early, accurate staging, proper surveillance and treatment are key. It can be very hard to keep perspective of that when you are reading of people that are dealing with invasive or even metastatic bladder cancer.

When I was new to this and was gaining understanding every story and every statistic scared me to death. It took time to know what my prognosis really meant to me. Perspective is hard when new to this it is so consuming and terrifying.

You are doing the right thing, getting a second opinion is very very important so you can be sure of your status and what you are dealing with. Fight your insurance until you win.

Always remember that we all mean well here but the written word can not convey a gentle tone or the touch of a hand and can sound different for it.