Advice to newly diagnosed

8 years 7 months ago - 8 years 7 months ago #49137 by Jay
Replied by Jay on topic Advice to newly diagnosed
I'll chime in on the clots. I was passing clots for about 2 weeks after my cystoscopy. In my case it was each clot that made me feel the urge to urinate and sure enough the clot was the first thing out that passed. They bugged me at first, but I got used to them. I also panicked at the blood in the urine, going to an ER just to be told it wasn't much, had to be really red to start being concerned. I just completed my first BCG maintenance a month ago and having another cystoscopy this Friday, so I'll see if things are about the same? Nothing else to do but hope for good results. Good luck to you!!! Jay
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8 years 7 months ago #49129 by OldEngineer
Replied by OldEngineer on topic Advice to newly diagnosed
Thanks again for the very helpful advice - I genuinely appreciate the good wishes, and needless to say fully reciprocate them. I see a second urologist Wednesday the 19th, then the procedure is scheduled for Thursday the 27th unless the second urologist concludes it needs to happen sooner. Wish it were tomorrow, trying to suppress fears of metastatic cancer developing owing the wait. Oh well, everything shall be revealed in good time.

By the way, separate topic but on the hernia repairs, I had inguinal on right side in 1989 and left side in 1991, both repaired with incisions and both hurt very badly; they recurred in 2010, so had to have them done again only this time mesh was inserted laparoscopically; what a difference, did not require narcotics, Advil was enough. If you ever need a further repair, I highly recommend that procedure. Looks like we may have been brothers in an earlier life - you would be my much younger brother of course.

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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8 years 7 months ago - 8 years 7 months ago #49128 by Alan
Replied by Alan on topic Advice to newly diagnosed
Engineer (none of us are old age but middle age, as that is 1/2 the distance between our age and the oldest person we know-a little levity for the day).

Thanks for your service! I asked about what engineering as I have known several EE, CE and Nuclear Engrs.

Oxycodone does almost nothing for me after 2 hernia repairs, 2 TURBS and 1 wrist/ligament repair. Everyone reacts differently to that drug. It sounds like it is an option for you. I decided to "tough" it out to see what it was like and if it was bearable. The pain on the TURB was only the first 3-4 voids and only when voiding. Plus I was put on strong antibiotics as we stirred up nasties each time we did it. Same appies to all of my cystoscopies and almost the same protocol. Antibiotics etc. Do what is best for you, every procedure for every patient is different.

I haven't heard or read about any clots clogging the urethra from this procedure so I assume it is minimal or none existent. However, my URO warned me I would probably pass a clot 10-14 days post and not be alarmed. It happened and I would have freaked out if not warned. One other item, a second TURB is often done to be sure proper "margins" are taken.

The good news! You are on your way to beating this! While all cancer is bad, there are worse cancers!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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8 years 7 months ago #49127 by OldEngineer
Replied by OldEngineer on topic Advice to newly diagnosed
Thanks very much Alan - I am seriously considering asking for oxycodone to reduce urination pain after the procedure (otherwise I worry that even starting a urination will be exceptionally difficult); have only used that drug a few times in my life (post incisional inguinal hernia repair - really needed it), it does knock me out pretty well. Might even try it when I have to go in for a future cystoscopic exam without general anesthesia. Have you used it or know of others who may have?

Regarding your question, degrees are in electrical engineering (computer science) and nuclear engineering, was in the Navy's nuclear propulsion program for 25 years. Got a grand total of 37 millirem of radiation exposure during that time from being on ships - less than 5% of the exposure I received from naturally occurring radioactivity from mother nature - so, very confident this cancer has nothing to do with that, but I know as soon as some people hear "nuclear" automatically the assumption becomes that is the cause. (Not saying you would come to that conclusion - just have seen that leap so often.)

If I may ask you one more question on the TURBT: from the threads, it seems there is risk of post-procedure bleeding, which certainly makes sense to me. How worried were you that a blood clot may form that would block the urethra?

Thank you again and I will report back after the procedure (I should hear shortly on date). Being able to talk to fine people like yourself and Sara Anne is very helpful and comforting - I deeply appreciate it.

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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8 years 7 months ago #49121 by Alan
Replied by Alan on topic Advice to newly diagnosed
Old engineer! Any specialty? My Dad (now deceased was a civil/enviro/bio).

As Sara Anne said, everyone's situation is different. I wanted to respond on the catheter as a man. I call it uncomfortable passing through the prostate but, we are talking about just seconds and the 2-3 minutes while the URO reads the bladder. I peed razor blades for a few voids but, after 12-24 hours I was s back to normal. As far as the TURB it was 24 hours. I am sure every case is dependent upon how much digging they do have to do. I did not have a catheter.

Keep posting-we all share!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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8 years 7 months ago #49117 by OldEngineer
Replied by OldEngineer on topic Advice to newly diagnosed
Thank you again - I will indeed report back after the procedure. As you imply, experience trumps theory on this topic and most other medical topics too.

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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