How Long?

13 years 10 months ago #6121 by Alice L.
How Long? was created by Alice L.
Would anyone happen to know how long a person has to go through cystoscopies, surgeries, and chemo before they decide to remove the bladder?

Does it depend on the grade of the cancer?

This is going on over two years without one clean scope.

Thanks to all for their input!

Alice

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13 years 10 months ago #6122 by Zachary
Replied by Zachary on topic How Long?
Hello Alice,

Absolutely it depends on the grade and stage and location of your cancer. And your age, your health, and other facets of your condition.

What does your doctor tell you when you ask him?

There really is no such person as "a person". You situation is unique and depends on many factors that only someone treating you can answer properly. If your own doctor isn't forthcoming or doesn't communicate well, you might want to ask for a second opinion or change doctors. The bottom line, though, is that it's up to each of us to make sure that our questions are answered. We might not like the answer itself, but if the doctor doesn't come right out and tell us what we want to know without being asked, it's up to us to ask the specific questions we want answers to.

(In my case, my bladder was removed within weeks of diagnosis. Some of the folks here might never have their bladder taken out.)

Best wishes,

Zach

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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13 years 10 months ago #6123 by Alice L.
Replied by Alice L. on topic How Long?
Thank you Zach for the information. I guess it was about what I was expecting. I am seeing a new URO July 18th. I am already showing blood in the urine. I really can't wait to see the new one because I was not comfortable with my other one at all. I am hoping this one will please me.

I am 45. Why was your bladder removed so quickly if you don't mind me asking.

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13 years 10 months ago #6124 by Zachary
Replied by Zachary on topic How Long?

I was diagnosed with invasive BC, grade 4, and my local urologist referred me to Dr. Stein at USC/Norris, who rearranged his surgery schedule (moved some prostate cancer cases--which progress relatively slowly) so they could take me as soon as possible. My bladder definitely had to come out based on the diagnosis, and it made sense because there was no good reason for waiting. There was no vitamin or tea or crystal that was going to make what I had go away, and waiting would only increase the chance of spreading. As it turns out, because I ignored the symptoms so long, it had already spread. As Kurt Vonnegut would say, "So it goes".

My surgery was a year-ago yesterday.

I made a real point of writing my questions in advance and bringing them to my appointments, since I can get distracted easily by the flow of conversation and I didn't want to forget to ask what I felt was important. That really helped a lot, since I had time to compose my thoughts and concerns.

My next visit is August 8th for my one-year follow-up, and I already have some questions written down.

I'm glad you're switching, and I hope your new urologist is someone who can really answer your questions and give you confidence in your situation.

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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13 years 10 months ago #6125 by Rosemary
Replied by Rosemary on topic How Long?
Alice,

Hi. I don't know about you, but I am so glad that Zach is here. He has said it all, but, I would like to add my two cents on the matter, as I am one who has a high intermediate grade and stage with no recurrance and bladder intact.

It seems to me that Bladder Cancer is a hide- and- seek, catch- me- if -you -can type of disease. I know a person who has been tumor free 10+ years and told me that BC is not such a bad disease as everyone likes to say about it. I know another lady who was tumor free for 10+ years and went for a cystoscopy one day and the cancer was back with a vengeance. Her bladder came out quick. Non-optional.

Of all the people here, you might want to take a look at the posts by Tim B. Tim lives in the UK and he went through treatment and recurrance until he was tired of it, and then one day, he decided that life was bladder optional. He made his own decision based on the best information that he had and his own tolerance for recurrance. In other words, he made his own decision about living without his bladder.

I'm glad you are here. Take a look at some of the stories and if you want to talk things through, just jump in and start talking. There are lots of folks here who care.

BTW, stage and grade would be a very important factor in making a case for bladder optional living.

(Tim B., I hope I got all that right.)

Your BC friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 10 months ago #6126 by bjmac
Replied by bjmac on topic How Long?
Hello Alice

I had 10 years of cystoscopies, chemo etc. For me that time was okay - no discomfort just lots of visits to hospital for the treatments but I was able to get on with my life as before.

Treatments certainly changed over that time. When I was first diagnosed there was no chemo for cancer in the bladder and every investigation was in the operating theatre.

I then went on to flexible cystoscopies to identify problems. It was later that I had a couple of courses of chemo.

When I was in hospital for my last check before the bladder had to be removed there were people in having their first investigation and having a dose of chemo at that stage.

I think they are improving things all the time and hopefully a cure will be found eventually.

Good luck!

BJ

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