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Advice to newly diagnosed

4 years 2 months ago #49115 by sara.anne
No, not spam!! You would be surprised at how many people read your post and do not comment. But they are also helped by the information you give.

The answer to your question is easy...'It Depends' A lot of the discomfort and irritation is due to how much tissue the urologist removes for biopsy. The bladder lining does not always appreciate being tampered with! And some people do not have catheters at all and some do. You will need to talk with your doctor about treating your individual situation.

Please let us know how it goes.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 2 months ago #49114 by OldEngineer
Thanks so much Sara Anne - appreciate your insights on this. Yes it is an exclusive club, and while the members seem exceptionally nice, I am reminded of Groucho Marx's quote about not wanting to join any club that would have me as a member.

In my case, the cystoscopy and the TURBT will be done at the same time, both under general anesthesia, although as you cited, specimens will be taken for more detailed evaluation to determine stage and nature of the cancer.

One final question then I promise to stop spamming: I assume that the amount of discomfort experienced after the cystoscopy and TURBT is a function of how aggravated the prostate and the urethra get, and that depends upon length of procedure and amount of manipulation by the doc. Any advice on how best to minimize the post-procedure discomfort when I urinate? And - how to minimize the post-procedure potential for blood clots clogging up the works? (I assume I will have a catheter installed during the procedure and it will remain installed even afterwards for some period of time?)

Thank you again.

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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4 years 2 months ago #49112 by sara.anne
Welcome to our "very exclusive" club...can't understand why no one wants to join!

There are two procedures that you will be subject to...the first is cystoscopy, where a very small camera is inserted into the bladder so that the uro can visualize whatever is there. This usually takes about 10-15 minutes and is done in the office with no anesthesia. They do use a "numbing gel." The second is the TURB (transurethral resection of the bladder) which is similar, but done under general anesthesia since the urologist will be cutting out samples (biopsy) to be sent to a pathologist for a definitive diagnosis. At the end of this procedure they very often do a wash of the bladder with mitomycin. Only after the report comes back from the pathologist will you have a definitive diagnosis.

IF the diagnosis is bladder cancer, and it has not progressed into the muscle, the doctor may or may not recommend BCG treatments....this depends on the grade determined by the patholgist. In any case, better get used to cystoscopies! The usual protocol is for one every three months for about two years, every six months until 5 years have passed, and then once a year forever.

IF BCG is recommended, it goes in "the same way." So yes, guess you need to get used to catheters! I find it uncomfortable but do-able...but I am a gal. Seems you guys have it a bit worse. I doubt very much that BC/BS, Tricare, or Medicare would approve anesthesia all these times and it would not be medically indicated either. Anesthesia is not without its risks.

First, we will hope that your diagnosis is "blood clot." If not, you will eventually find that this is just about like going to the dentist (which I hate worse than the urologist).

Good luck to you!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: OldEngineer

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4 years 2 months ago #49110 by OldEngineer
Folks - started having blood in urine about a week ago; bleeding stopped after two days (I was on Plavix, and stopped taking it temporarily per doctor's orders). CT scan yesterday (08/14) showed mass in bladder, 20mmX17mmX14mm, radiology report says likely tumor but could be large blood clot. Examination of urine showed "atypical epithelial cells" which I know is suggestive of cancer. Cystoscopy being scheduled as soon as possible, likely including trans urethral resection. Praying it is not malignant - just a blood clot - but resigned to the fact that it probably is a tumor.

Urologist said that if it is cancer, he will pump my bladder full of chemo after he removes it, which I understand is pretty standard approach; I intend to ask him about BCG treatment too.

My questions are: (a) all of this will be done under anesthesia (propofol), but I am guessing that going forward, I had better get used to catheters being inserted without anesthesia - makes me cringe more than anything else in my life (three parts of the body I do NOT like being worked on, eyes are two of them...) - so, any advice on how best to tolerate? Or - is there some way to insist on anesthesia (I will review my medical insurance on this - Federal employee BC/BS primary, Tricare secondary, not quite to Medicare, 64 years old); (b) for a newly diagnosed person such as myself, any general advice about do's and don't's going in to the procedure; (c) also any general advice longer term?

Thank you so much. Never had cancer before (no risk factors - never smoked, no exposure to toxic chemicals, and no family history); do have heart disease (treated successfully with stents) and other, non-life-threatening maladies, but this is the worst I have faced to date.

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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