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Advice to newly diagnosed

4 years 1 month ago #49154 by OldEngineer
Sara Anne - thanks very much and indeed fully concur that everyone's experience is different - this was obviously mine and while it was not pleasant (what operation is?), it was bearable and indeed MUCH better than cancer metastasizing, so I would have it done again in a heartbeat. In my case, I think the post-operative discomfort was a mixture of: (a) being a guy; and (b) being an old guy (lol). Plus of course anatomical details of which I am not aware like urethra diameter. The nurse told me that they had to use a French20 catheter which apparently is one of the biggest ones. I have tried to find on the web what the translates to in millimeters but can't find it - perhaps they don't want to scare patients lolol... If the 20 refers to millimeters - that is 4/5 of an inch - ouch!!

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 #49152 by Jay
OldEnginner: I had my cystoscopy the same day, last Friday and am on pins and needles waiting for the pathology report to come in.

A Naturopathic physician suggested I try Marshmallow root tea for the pain you are experiencing. Supposedly it coats the bladder, urethra and eases the pain. I tried it a few days, didn't notice much, but I think psychologically I felt better and I know the pain you're feeling all too well! I ordered it from Mountain Rose Herbs online. Just a thought. If you're planning on having the BCG maintenance, it might come in handy having in beforehand.

Good luck, Jay
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4 years 1 month ago #49150 by sara.anne
Glad to hear that your procedure is over, and that you are doing well.

In "advice to the newly diagnosed" it is important to remember that EVERYONE'S EXPERIENCE WILL BE DIFFERENT. I have had two TURB's and never needed a pain-killer. Other than being somewhat drowsy from the anesthesia, had no side effects at all. Yes, I am female and my cancer was CIS as well as one papillary, but I have also known males who did not have the issues you had. It depends on the type of tumor, how deep the urologist needs to go during the biopsy, and your personal tolerance level.

I would hate to have anyone frightened of a TURB, which could save their life!

Will be anxious to hear what your path report says after you have your consultation with the doctor. That is when you will get the definitive diagnosis.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 1 month ago #49149 by OldEngineer
Hmmm I did not see the file that I thought I had attached - so in the interest of avoiding confusion, I am just excerpting the key elements of it below into the message itself. The table does not render well - there are four columns and you can tell what the column headings are, so interpret it in that fashion.

<snip>
1. As to be expected, the very worst pain was in the initial urinations after the procedure; I asked for and got two microdoses (25 micrograms each as I recall) of fentanyl and it did help but of course did not fully alleviate the pain. Thinking about this retrospectively, if permissible, it would be desirable to have had those doses automatically before the first urination without having to request them.
2. Early in the recovery period (for approximately the first 24 hours), the urination pain seemed to come in three stages:
a. At the start of urination, very sharp pain
b. During the urination, a severe burning pain in addition to the sharp pain
c. After the urination, a severe burning pain and general feeling of discomfort in the bladder itself – not exactly muscle spasms but felt close to that sensation, without the spasms themselves.
3. What I noted was that during the two days following the procedure, the pain in a. above (at start of urination) was the first to abate. This was interesting and, in a way, a good thing because psychologically I had prepared myself immediately for severe pain, but it did not come – just during the urination per b. and c. above. The initial pain in a. abated mostly after about 24 hours.
4. I took steady doses of oxydocone pretty precisely every four hours, occasionally every 4 ½ hours. It occurred to me after the fact that since each dose has 5mg of codeine, it would have been desirable to allow the initial doses to be taken every 2 or 3 hours instead of every 4 hours. As a quick assessment, the biological half life for immediate release oxycodone is 3.2 hours, so look at the following table:
Period (in hours) Serum level Period (in hours) Serum Level
0 5 0 5
4 7.1 2 8.2
8 8.0 4 10.3
12 8.3 8 9.3
16 8.5 12 8.9
20 8.6 16 8.7
24 8.6 20 8.7
24 8.6

N(t) = N(0) times e raised to the power (-t divided by tau)
Tau = 3.2 hours/ln(2) = 4.616624
So, the first column represents serum levels of codeine over the first 24 hours taking oxycodone 5-235 every four hours, whereas the second column represents serum levels of codeine over the first 24 hours IF the patient were to take a second additional dose at the two hour point.
There are two important conclusions from this table. First, as would be expected, serum levels asymptotically reach 8.6 mg at 24 hours since the extra dose at the two hour point is attenuated by that time. And, serum levels with the extra dose are higher in the first several hours as expected (peak of 10.3 mg), but only by a few mg which is much less than what I understand to be permissible doses at higher levels (15 mg or 30 mg of immediate release). Those few extra milligrams could mean the difference between a lot of pain and an intense amount of pain.
Based on this, would it be acceptable to take that second dose at the two hour point, in between the “once every four hours” dose?
5. I drank copious quantities of water. The recommendation was six eight ounce glasses per day (48 ounces); I kept a partial log and for the first 24 hours, consumed over 110 ounces; on the second day, over 140 ounces. My process was simple: every time I urinated, I drank, sometimes more than I urinated. This reached a point where I was urinating almost every hour; yes it did make it difficult to sleep soundly but psychologically I was o.k. with that since it abated the pain and since it gave me the satisfaction of knowing I was flushing the chemo from my bladder.
6. Being on the oxycodone, I did not want to have to get up for every urination and do it in the toilet out of fear of losing my balance. Instead, I used a urinal which my loving wife emptied. Actually used two urinals – no waiting lol – since the volume I was producing was so high.
7. I kept a mental log of when each dose of medication was needed – basically just remembered the last dose and added 4 hours for oxycodone and 8 hours for pyridium. In retrospect, I should have written this down. One time I could not remember whether I had taken a dose or not (I was just on the cusp of needing one I thought), so I counted the pills in the container, divided by the interval and determined that indeed I needed a new dose; which was confirmed when the pain worsened before the new dose made it in to my blood stream.
8. Since I used a urinal, almost all of my urinations were done while I was reclining and on my side with the penis inside the mouth of the urinal. I found that this was the most comfortable position, I was able to relax my muscles most fully. When I did get up to urinate in the toilet after about 48 hours, it was a bit more painful and I noticed a few blood clots (brown not red) had passed, so I assume that gravity had done the job of collecting them but they had not been pumped out when I was on my side, they came out only when they were at the “bottom” of the bladder when I was on the toilet.
9. One other point on the use of the urinal – initially I always reclined on my left side to use it. However, the tumor was on the left side of my bladder. After a while, I concluded it might be better to recline on my right side; I changed at about the 24 hour period. Hard to tell whether that made a difference since the pain was beginning to abate at that point anyway.

<snip>

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 #49148 by OldEngineer
Folks - again with profuse thanks to each of you who helped prepare me for the procedure, I had my TURBT on Friday Aug 21st at 1130; the cancer had not spread, appears to be stage 1 or on the cusp of stage 2. The weekend was a bit rough - "peeing razor blades" pretty aptly describes it - but I am on the mend. I kept a journal of the experience in the hope that others might it useful (and that I also will use it if I ever have to go through this again - which I realize is likely). It is in Word format and is attached, please feel to download it and read it. I see my surgeon this Thursday (27th) and intend to go over it with him, especially the pain medication dosing recommendation that I have - basically suggesting allowing an additional dose of Percocet in the first four hours since serum levels of codeine only reach about 10mg which is well below the levels given for other types of pain. Anyway - feedback welcome. Very best to you all!

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 #49138 by OldEngineer
Thanks very much Jay; like you, at first the clots were very disconcerting, but I guess one becomes inured to all sorts of unusual things because they do not bother me so much.

Anyway - FYI for all of you very kind folks who have commented, my TURBT procedure is tomorrow, so I should find out then the stage, and will later find out from the biopsy analysis the aggressiveness/type of the cancer. And also find out what the post-operative situation is really like. Thank you all 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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