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How do you say it?
If you have had bladder cancer (Ta, Grade I) and they cut it out, do you consider yourself “having cancer”, or did you “have cancer”? I was just diagnosed a month ago, and had my first cystoscopy… now I wait six months. How long do you have to go after a recurrence before you say “I HAD cancer”? This is all so new to me…. and when you don’t look sick or feel sick, it’s very strange to think “I have cancer”. I’m paying attention to it, eating healthy, avoiding certain things… I just wonder how many out there think of their cancer in the present, or in the past, till the next “poke and peek”…
TaG1 12/05
3 recurrences
BCG started 9/0915 Replies-
[quote]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 -
:) 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!
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
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
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
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
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
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
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
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
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
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
I think technically we still have cancer, but at this stage it is not life threatening. And, (with reference to this cancer) I feel pretty good 97 percent of the time. If I have cancer, and they tell me I do, I’m not really aware of it until it’s time for my cysto. Of course there are exceptions. I usually know when I have a new tumor by the bladder pressure and by a strange bad odor when I urinate. (The doctors say there is no odor, but there are others who notice an odor also.)
~Fran
We rejoiced after my tumor was removed and were told it was Ta, Grade 1, over 6 years ago. Then while still recovering in the hospital I was asked twice if “this was my first time”? I quickly realized the possibilty of a recur, and it did recur, twice. Still, I consider myself very very lucky.
I understand exactly what you mean about “having cancer?” and I can forget about it most of the time. Maybe technically we have or had cancer – and that I found out when I tried to donate blood and was rejected. But I don’t feel that I have cancer, or that cancer has me! I feel great, take care of myself more, and appreciate life and loved ones all the more. Good Luck and Good Life! Maureen
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
age 70
Dx 10/03
neobladder 9/4/04Sign In to reply.
