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Advice to newly diagnosed

4 years 1 month ago #49260 by OldEngineer
Thanks so much - yes it is both a blessing and a curse to be an engineer at times like this, you want certitude as to what is going on and of course, there is none to be found, just probabilities which of course we also have to deal with in the engineering profession but we can usually take measures to minimize their breadth - but not in this case. Sigh. Haven't started the BCG yet so only time will tell how well I respond to that. But from your first TURBT (not counting the BCG treatments), how long before the discomfort (bladder spasms etc.) went away for the most part? A week? Two weeks? A month? Longer?

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 1 month ago #49259 by bahiw
Let me add I have had no reaction to the 9 BCG treatments. I understand others do And maybe the next set I will have a reaction.

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4 years 1 month ago #49258 by bahiw
I'm an old engineer also so I feel your pain. Had symptoms for some time. Changed Dr. Found cancer cells in urine. Had tumor removed (asleep). None muscle thank you Lord but aggressive. Had 6 Bcg's, then cysto then 6 more BCG. I feared scope and treatment even more than you. Happy to say it is not near as bad as I expected. In fact I don't even fear it. I wouldn't volunteer though. Hope you will have same experience. Assume you will. After treatment water is your best friend although I experienced minor discomfort for a day. In short wish someone had told me before what I could expect. Would have saved a lot of worry. Skip

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4 years 1 month ago #49256 by OldEngineer
So a quick update and as usual, a question or two.

Just to quickly recapitulate, has been 17 days since my TURBT. Cancer was TCC, T1/High Grade. Urologist is confident he got all of it with no muscle invasion, but anticipates the need for a second TURBT in two weeks to "dig a little deeper" to ensure he did. Followup cystoscopy this week (although date not yet settled - may wind up being next week). Also seeing a urological oncologist at Sloan Kettering (Dr. Guido Dalbagni) tomorrow, taking the pathology slides with me so he can give me his view on how severe the cancer is and whether it is amenable to BCG therapy; I'll report back on any insights he may have that would be more generally useful to readers on this forum. (I have a raft of questions I intend to ask him...)

Also, followup chest XRay four days ago found nothing, so no evidence as of then of any lung metastases.

So my key question is this: urination is not very painful now - pretty good actually - but I still have bladder spasms prior to urination, and occasional sharp pain in the bladder on the side where the TURBT was done. I have a general feeling as though there is something in the bladder on that side - perhaps just a tightness in the muscle - and general discomfort on the left side of my abdomen as well. Not tender to the touch, just "internal." Has not been getting better over the past week. I have been assuming this is because the first TURBT dug into some muscle so the healing process will take its time in the musculature; or possibly just longer term reaction to the mitomycin which was instilled intravesically after the procedure; but was wondering what others experienced? I.e. after a TURBT how long did others experience discomfort in the bladder especially spasms and soreness, and pain prior to urination (about 15 seconds from the start of the void until the voiding begins, then the pain abates)? Thank you as always!

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 1 month ago #49225 by OldEngineer
Thanks Cynthia; saw my urologist yesterday briefly, mentioned this and he said should not cause any problems; he also said that as expected, different people may or may not find it helps, only trying it will tell and even then, tough to determine whether it is having a placebo effect. FWIW, my additional discomfort has abated, I think it was due to an opportunistic outbreak of herpes (which I have had since 1974, periodically erupts but not often) since I saw some small blisters indicative of that.

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 1 month ago #49210 by Cynthia
Even if you do your research about any supplement always get the OK from your doctor before taking it.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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