New to forum, just sharing my story

5 years 3 weeks ago #51043 by KatSha
New to forum, just sharing my story was created by KatSha
I'm 30 years old, and have two small children ( 2 years and 2 months) An ultrasound tech found something in my bladder in June 2015 and my doctor waited til after I had my child to refer me to a Urologist. Ive had previous ectopics and multiple surgeries for them so my doctor told me not to worry about it and the lump in my bladder could just be from things being pushed around...
I had a cystoscopy done April 4 where the Urologist just flat out told me it was cancer. It was pretty hard to hear - I was really not expecting it and had travelled an hour to the appointment alone with just my 2 month old baby thinking it was just a consultation. I ended up being booked quickly for my turbt this past Friday April 15 and the urologist said it went as best as possible. I refused the mitomycin treatment that was offered as my own research didn't make me comfortable with it and I wanted to continue nursing my baby. I feel rather great considering with no pain or blood in my urine since.
I'm really having such odd mixed emotions about this whole scenario as I found out I had cancer and now no longer have it all in a two week time frame. I go back for my pathology results next week and I'm hoping it's low grade. I feel silly to tell people about it since so many others have such a hard battle while mine is a walk in the park compared to. I guess I just wanted to share my story with people who understand.

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5 years 3 weeks ago #51045 by sara.anne
Replied by sara.anne on topic New to forum, just sharing my story
You must really be busy with two such little people to care for!! You really don't need the complication of possible bladder cancer on top of it!

First, a few bits of will not know for sure what you are facing until the pathology report come back from the TURB. The urologist can be "pretty sure" it was cancer, but not 100%. If it is indeed "low grade" (which we will hope) that would be good news, of course. The urologist should then put you on a schedule of cystoscopy every three months for two years, every six months until five years have passed since diagnosis, and annually forever. The reason? Bladder cancer, even low grade, has a nasty habit of coming back and if it does you want to be sure it is found early. Many many people never have it return.

Even if it is "high grade," early bladder cancer is very treatable.

We will be wishing you the very best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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5 years 3 weeks ago #51046 by GKLINE
Replied by GKLINE on topic New to forum, just sharing my story
Welcome to the site. I thought you might need a quick answer. I HOPE that the pathology comes back negative for cancer. Then things will be done

But IF the pathology comes back with the c word.......... All is NOT lost. It may be a journey, but it will have some more stops along the way.
The TURB you have is usually the first of two (the second is to check to see if they got it all) So don't worry if they want to do another.
And don't start self diagnosing against Dr orders. If, after discussion with the Dr, a protocol is not followed but the Dr advises it.... You are choosing to risk your life here. We don't advise that risk. Bladder c is a Very twitchy and aggressive cancer. Aggressive treatment is warranted.

There are people here who can help guide you to the right place for treatment. If you need any help finding a place that specializes in bc there are people here who can advocate for the best place near you.

But. Personally I hope you are cancer free right from the get go.
That would make my day.


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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5 years 3 weeks ago #51047 by KatSha
Replied by KatSha on topic New to forum, just sharing my story
Thank you for the replies - glad there are people well versed in this to help me out.
I will have update when I receive the pathology report!
I do know I should not refuse treatment that can save me from it in the future but until I got the results back I just wasn't comfortable with risking so much.

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