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Deciphering doctor\'s descriptions

10 years 3 months ago - 10 years 3 months ago #29104 by szito330

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10 years 3 months ago #29102 by pemquid
Suzanne--
From what I understand, bladder irregularities (sometimes called "filling defects") can indicate presence of bladder tumor(s). I had a somewhat similar experience as yours has been to date--gross hematuria, antibiotics, imaging (which showed an isolated bladder wall irregularity), and then referral to urologist for cystoscopy. I was fortunate not to have any delay in testing or referral, and had a single low grade papillary tumor removed via TURBT (as a hospital outpatient), all in under a month from when I had first experienced the hematuria. In terms of where TURBT is to be done, I'd definitely opt for (demand) the hospital for any initial surgery. I will say, however, that when I had a recurrence two years later, which was two tiny ("pinhead size") tumors, I did have the TURBT and fulguration done in the uro's office, and it was not bad at all (though I know some on this board were somewhat horrified). I would not have agreed to the in-office procedure if the tumors had been bigger or more numerous. I've been on BCG since the recurrence, and have had no further recurrence since June 2008.

If you do indeed have bladder cancer, there are many helpful people on this forum and lots of good information. Don't be discouraged if you read that bladder cancer has the highest rate of recurrence of all cancers -- most times the recurrences remain low grade and non-invasive, if that's what the tumor(s) were to start with. Frequent cystoscopies (every 3-months for several years) can catch recurrences early on.

Best of luck to you!

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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10 years 3 months ago #29100 by szito330
Hi Pat,
No, he didn't mention a TURB at all. And I'm not sure if he did cytology, NMP 22 or FISH, because then he would have the results by now and would have told me when he called about the CT urogram? (That was on 11/20 and he called me on 12/1, only mentioning what I've posted.)

I did ask for a copy of my record from my first visit with him and the urinalysis came up basically fine (not even leukocytes). I was surprised to see a PH of 5.0 though.

As to your question of where I am, that is in eastern CT. There happens to be a focus of bladder cancer care mentioned on the urologist's group website, and an oncology place in the same building.

Dad was diagnosed with the prostate cancer first (his three brothers also have prostate issues). Wonder if I have BC if there's a genetic component, even though I don't have a prostate?

Thanks,
Suzanne

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10 years 3 months ago #29098 by Patricia
Oh Geez Suzanne....don't tell me he's going to do a cystoscopy and TURB while in the office??? Don't let him do that. He can look with the cystoscope but a transurethral resection of the bladder should be done in a hospital setting and you're knocked out.
Thats a lot of hematuria. Did he not do a cytology or NMP 22 test or FISH?
http://blcwebcafe.org/content/view/94/104/lang,english/
Where are you and lets get you to a major cancer center or University NCI center that deals with bladder cancer. I'm not saying you have it but i am saying they will know if you do or not.
I have no idea about your Dad..its usually bladder cancer that migrates to the prostate not the other way around. But i'm sure the amount of radiation he got was enough to cause all kinds of problems with intestines...the gift that keeps on giving.
Pat

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10 years 3 months ago #29096 by szito330
Hi all; let me put out the disclaimer that I have NOT been diagnosed with bladder cancer.

In brief: I am a 48 year old woman, no smoking or exposure to second-hand smoke here. My father had prostate cancer that Mom says a "small piece of it got onto your father's bladder." This was 17 years ago and he had about 30 radiation treatments. I asked Dad about it recently and he knew basically nothing, no staging, grading, etc. Only kept emphasizing three times that it was bladder NECK cancer.

I had gross hematuria on 11/9/09 for about 12-18 hours. My primary dr. had me leave a specimen the next day which came back as positive for red blood cells and leukocytes. NO other symptoms at all! I was given a 5 day Rx for Cipro.

I thought (self-diagnosed?) I had a rectocele, as I have trouble with constipation. He did an internal and said I might have a cystocele, referred me for an ultrasound and to see a urologist.

Uro dr. said U/S only showed a cyst on right ovary. (Note: had a hysterectomy in '99, kept the ovaries.)

Uro dr. said specimen I gave to him showed trace (1+) of blood, basically nothing. But he wanted me to have a CT urogram and a cystoscopy.

My questions: he called me and said the CT urogram showed kidneys and ureters were fine. The bladder shows something on the left side wall, as if it had collapsed in on itself, that there are "nooks and crannies" there. He said it's as if it isn't fully distended as a bladder should be.

I asked if he would do a biopsy, he said he couldn't say until he got in there. That cystoscopy is this coming Tuesday.

I know I should NOT self-diagnose. Reading online shows me that this topic is broad and as diverse as the folks who have bladders. :)

I am just wondering how a bladder could "collapse in on itself". That term doesn't come up in my reading. I also see more about distended bladders than bladders that do NOT distend.

I also am trying to read about the lining of a bladder...doesn't everything have "nooks and crannies"? Or is this a very plain and ordinary way for him to say that it's bumpy and not normal?

Thank you for your time. I do appreciate any help.

Sincerely,
Suzanne

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