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How Long?

12 years 4 months ago #6136 by Alice L.

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


Hello BJ,

How long have you had your bladder gone? Any complications? Is it easier than every three moves with surgery?

I do hope that you are doing much better now and you stay clean from here on out.

Alice

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12 years 4 months ago #6135 by Alice L.

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


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.


Hi again Zach,

Sorry if this is not the appropriate way to ask, but what do you use for a bladder now? Do you have very many complications?

I know, I am probably worrying before my time, but when I am not feeling to well, it worries me even more, sorry to be such a baby.

Thanks once again,

Alice

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12 years 4 months ago #6132 by Rosemary
Alice,

I am glad that you are being careful with your cancer.

Just by way of sympathy, I too have pain on my left side and down the buttock. It can be very intense at times. Between the docs and me and after a laparoscopy, our best guess is that the pain comes from adhesions where a serous adenoma was removed from my left ovary about 20 years ago. The doc says that my ovary is stuck to my rectum. After a bowel movement, I can feel the pain/pressure on my left side for the rest of the day.

When I was diagnosed with BC my family and I felt sure that the BC was the answer to the pain question on my left side, but no hit, as the BC was in the upper right quadrant of my bladder.

Anyway, I know how you feel, if it helps. And, I know with the familial history of cancer in your family, that you must be very anxious about getting any cancer diagnosis, whether it's being considered by doctors as nothing to worry about or not.

Take care,
Your friend,
Rosemary

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

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12 years 4 months ago #6129 by Alice L.
Thank you to all that have responded. All information given is so very helpful.

When I was first diagnosed, I was going to the doctor for pain in my lower left side back, and bladder. Like a pressure pain, I would be so very exhausted and was so intense at times that I had to have a pain shot. During testing, this is when they found the cancer. I was very lucky. The doctor thought it had already gone through, but did not. I had cancer in my left ovary and it was removed. I have low grade cancer cells in the cervix, but my OB doctor doesn't seem to think it is anything to be concerned about. I still have tolerable pain, but it is 24-7. They just can not seem to find what is wrong. Like today, I am just not feeling well at all.

I really don't want to lose the bladder. I have read so many stories on the complications and the number of doctor visits with that. My sister died of cancer at 31 and my first cousin died at 34 of cancer. Two Aunts with breast cancer. It really is in the family, so it is a very grave concern of mine.

Again, thank you all so much.

Alice

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12 years 4 months ago #6126 by bjmac
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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12 years 4 months ago #6125 by Rosemary
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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