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How do you say it?

12 years 6 months ago #518 by ecubed

Hi Tim,

Please don't apologize, no need for that. I'm sorry to have made you feel as if you made a mistake posting here, all input is very much appreciated. Thank  you for sharing your experiences on behalf of all who come along, and surely benefit from it.

It's only that I've spoken with a few people that are afraid of the larger, mixed group and don't stay on. I felt maybe a special place for low risks to talk about the frustrations of that dx would help. For example, people with a low grade Ta, low risk tumors are often treated as if they don't have cancer by family members. It's a kind of limbo, do they? Don't they? Of course they do. Even that small risk of progression means you are never totally free of worry.

Wendy and Tim,
I'm glad you posted here, Tim.  I found this forum this morning when I referred a newly diagnosed friend to Webcafe.  My first Ta was removed in 1998 and I found the wide range of experiences of everyone on the old Yahoo board really helped me to stay hope filled.  On the other hand... as I begin another round of BCG, I really like the word "limbo" in terms of other people's reactions to my treatment.  The response is often akin to "you've been there, done that, what's the big deal."  when really, all I want is a hug  :)
Peace and good______,
Beth

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12 years 9 months ago #327 by skypilot
:) Very Nicly said , Thanks. What stage was your Bc? I am starting BCG this weeks. They say I am not a canidate for neo. So I am sure hoping the BCG works for me. , Thanks
  Don

Hanging in there!

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12 years 9 months ago #321 by KIRKWOODRES

Interesting question that I'm sure we've all had. After going through the BCG treatment
routine twice and finally having a neobladder "installed", I've learned to use the term
"with". I'm living with cancer both as a thought and as, upon ocasssion, a physical reality.
"Am I cured - do I still have cancer?" I really don't know. But, I do know I live with the
thought of cancer.

In my mind it has almost become a philosophy - a philosophy of life. And, one that I have
to admit has become a gift, i.e. a greater appreciation of life. I've learned to embrace my
life.

My thoughts. Hope it helps. Best of luck to you.

Gordon

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12 years 9 months ago #239 by wendy
Hi Tim,

Please don't apologize, no need for that. I'm sorry to have made you feel as if you made a mistake posting here, all input is very much appreciated. Thank you for sharing your experiences on behalf of all who come along, and surely benefit from it.

It's only that I've spoken with a few people that are afraid of the larger, mixed group and don't stay on. I felt maybe a special place for low risks to talk about the frustrations of that dx would help. For example, people with a low grade Ta, low risk tumors are often treated as if they don't have cancer by family members. It's a kind of limbo, do they? Don't they? Of course they do. Even that small risk of progression means you are never totally free of worry.

There's a whole other set of concerns for people with life-long, recurrent, low risk tumors. However you cut it, quality of life takes a beating with time, bladders become damaged from years of cystos and TURs, side effects kick in. Yet compared with people dealing with invasive bladder cancer (all things being relative in cancerland) they fear to sound trivial, so are often the quietest members of the group.

That's the rationale of a separate area. But of course all input is welcome.
Take care,
Wendy

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12 years 9 months ago #238 by pooderpie
Wendy,
My apologles, I am trying to get the hang of this new forum and did not realize that I need only post to the areas of my personal experience. it was not my desire to upset anyone and I am very sorry if I did so.

Good luck with this and the webcafe

Tim

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12 years 9 months ago #236 by wendy

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. T

Hi Tim,

I"m glad to hear you're doing well! A T1 tumor is actually a tumor that has shown it's ability to invade. You're lucky to have gotten so many years out of it before losing your bladder. There's talk these days of kicking T1 tumors out of the 'superficial' category. A recent article in the J of U called for elimination of the term superficial bladder cancer!

That said, this folder is especially for the folks with Ta, grade I tumors with a very low risk of progression, 0-3% are the most recent stats I read. They represent the 'silent majority'. It seems that people with more serious cancers are the ones out here looking for info and contact. Our group is full of people with invasive bladder cancer, we don't separate the low risks from the high risks. But this little corner is meant just for that.

> I am sure there are stat's on the progression rates somewhere.
Tim

<

http://blcwebcafe.org/superficialblca.asp That page has a risk/progression graph and gives a link to an even more indepth one on another page in WebCafe, if you want to have a look

All the best,
Wendy

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