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How do you say it?

13 years 3 months ago #233 by pooderpie
Intially in 1993 I was dx with stage T1 grade 2 going to 3 with early focal stromal invasion.every two years a tumor or two would show back up then eight years nothing, then out of no where what looked like a superficial recurrence turned out to be a T3 grade 3 with invasion into the anipose tissue. The fact that they have you come back for cysto's every three months to a year should tell you that they are aware of the recurrene rate and according to my Dr. progression is very common. With that being said I don't think it's anything to stay awake at night worring about and like you when the news came I dealt with it. I am sure there are stat's on the progression rates somewhere. How many turb's have you had?

Tim

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13 years 3 months ago #232 by altie
Tim...what was the stage and grade of your early tumors??
Funny, but I get the idea that there is "no big deal" from my doctor. I've had so many recurs - I've lost count. The chance of progression is so relatively small.
I don't know, maybe the doctors want us to have a 'not-so-grim' outlook. I'm vigilant. I go to all my appointments. I don't (for a moment) think that it can't get worse, I just think, "If that ever happens, I'll deal with it."

~Fran

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13 years 3 months ago #227 by pooderpie
every recurrence is a big deal..... and not all of them are at low stage and grade after 8 years my recurrance was a very high grade and stage that resulted in my RC don't ever think a recurrence" is no big deal."

Tim

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13 years 3 months ago #226 by altie
Hi Ruth...thanx for noticing the line about the 'odor'. The doc said it wasn't related, but after talking to others I think it is.
You've had tumors removed only once? I have some spots removed at least once or twice a year, so I quess that's why I think of the cancer as active.
As for recurrences: they happen...at low stage and grade, they are no big deal.

~Fran

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13 years 3 months ago #214 by SamQKitty
Altie,
You're the first person I've noticed who mentioned the odor. That was one of my first symptoms...a really weird, musty kind of odor. Then came the pressure, then the blood. But the odor was definitely my very first symptom, and the others followed within a few weeks.

As someone who has survived two different types of cancer now (although it's only been 5 months since my TURBT), I don't consider myself to "have" cancer, but rather that I "had" it, and now do not. Or at least...I hope that's the case! Unfortunately because one can have even one or two cancerous cells and it may take years before they multiply to the point of noticing, I guess we can never be truly certain that we are cancer-free, but one needs to go on living despite the uncertainty.

Many years ago, John Lennon said "Life is what happens while you're making other plans." That has long been one of my mantras. I added another one, seen on a friend's yoga T-shirt, after going through cancer the first time, and that is "Worry is NOT preparation!" I'm as prepared as I can be for the possibility of a recurrence, but I truly try not to allow worry to interfere with living my life.

Ruth

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13 years 3 months ago #213 by pooderpie
After four TURBS and BCG treatments I went 8 years in what I call remission. With bladder cancer having such a high recurrence rate I think remission is the best term to use, if it is not currently active. It is my belief that you still have cancer. I had a RC done which removed the bladder and thus removed the cancer. The only bright spot of a radical cystecomy in my opinion is that it is the only way to be sure that you are free from bladder cancer. If it has spread to various other parts like lymph nodes, prostate then you have those cancers to worry about. As long as you have caught it early and maintain your check ups you will be ok.

Tim
RC 11/1/05

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