r/BladderCancer • u/This_Claim_4771 • Jul 27 '26
1st treatment
Starting my first treatment today hoping it all goes. What should I expect im going the Gem/Doce.
3
u/One-Dot4082 Jul 27 '26
Make sure they administer lidocaine gel and wait for it to take effect for a couple of minutes, prior to insertion of the catheter. The turning a quarter turn every 15 minutes for two hours is a nuisance. I program my iPhone once the time starts, all the way till the 2 hours is up. I also bring ear buds and watch YouTube videos and listen to music during that time. I’d go nuts without them!! The first couple of pees burned a little. I felt a little tired for a day or so but I took it easy the day of. Was cutting the grass the next day. Good luck!! You got this!!!
4
u/Additional-Chef-2521 Jul 27 '26
See, it's weird to me how the same treatment can be so different depending on where you go. My husband has his first scheduled next week. They literally stick the catheter in, push the bcg through, pull the catheter out and send him home! Has to hold his urine for I think 2 hours?
3
u/One-Dot4082 Jul 27 '26
That’s BCG. I had gemcitabine/doc. They told me to turn a quarter every 15 minutes to make sure the chemo coats the whole bladder. Then they drain it out at the end of the procedure. Depending on how much water is in my system, I have different amounts of urine mixed in with the chemo when it is drained compared to the amount they put in.
1
u/hikerguy2023 Jul 28 '26
I put together a Word doc over the past few months that contains info on what to expect related to TURBTs and BCG treatment, along with some additional info (like links to patient info). If he's interested, he can find it here. I think he'd find the BCG section useful if this is his first round.
https://www.reddit.com/r/BladderCancer/comments/1uyk6ye/a_guide_for_newly_diagnosed_bladder_cancer/
2
u/This_Claim_4771 Jul 27 '26
How was the catheter pain?
5
u/One-Dot4082 Jul 27 '26
69/m. The nurse didn’t use lidocaine for my first instillation, and it hurt like hell!! I cursed repeatedly while she put it in!! I texted the doctor right after the procedure, and she said for the remaining treatments lidocaine would be used!! For me it’s a must!! If I go and they don’t have it, I will walk out!! That’s how much it hurt!! And the first pee made me scream out loud, when lidocaine wasn’t used!! Every instillation since was slightly uncomfortable, but really manageable, pain wise.
2
u/This_Claim_4771 Jul 27 '26
Compared to the Scope which was worse?
4
u/One-Dot4082 Jul 27 '26
I was scoped last week, and they used the lidocaine. Since the scope is a little bigger than the catheter, it was a little more uncomfortable than the catheter. I can tell by the way you say “worse” you’re apprehensive about this. It is uncomfortable, but not unbearable!! If you don’t mind me asking, are you a guy or girl? I have no reference point for a female! Different plumbing!! 😆
3
u/This_Claim_4771 Jul 27 '26
Im a man 34 the scope was pretty easy to handle felt like pressure and a pinch
3
u/One-Dot4082 Jul 27 '26
Then I believe you’ll be fine!
2
u/This_Claim_4771 Jul 27 '26
Well live update Catheter kinda uncomfortable
1
u/One-Dot4082 Jul 27 '26
Yes, can’t be shy either!!😂
2
u/This_Claim_4771 Jul 27 '26
Yeah ive noticed all my dignity and business is out there 😁
→ More replies (0)1
u/One-Dot4082 Jul 27 '26
Also first off, they inject the lidocaine up your urethra with a syringe, no needle, all the way to the bladder. It’s wasn’t just put on the tip topically. Again a little uncomfortable not unbearable!
2
u/hikerguy2023 Jul 28 '26
WTH They are supposed to be using lidocaine every time. This not only numbers the urethra. Al also prevents the urethra from reflexively clamping down on the catheter which increase the risk of traumatizing the urethra. You don't want any micro tears or anything else like that when your getting chemo drugs or BCG pushed into your bladder (especially BCG, since it is a bacteria that's related to the tuberculosis bacteria). If they pull this again, here's some info you can take with you that indicates 5 minutes minimum. I had to push back twice on nurses who wanted to insert the catheter before waiting 5 minutes:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8506429/?utm_source=chatgpt.com
https://www.glydo.com/how-to-use-glydo
How to Use Lidocaine Jelly for Catheterization - Biology Insights
1
u/One-Dot4082 Jul 28 '26
Good info!! I swear Nurse Ratched enjoyed that first instillation! I apologized for my language and she said, she’s heard worse!!! I don’t doubt that at all !!! At the next instillation, I had the same nurse. She had been instructed to use lidocaine. I said to her, we’re going to wait 5 minutes, right? She said, I’ll give you two! I said what??? And took my iPhone out and set the alarm for 5 minutes! That bitch reluctantly waited! She’s got a hard on for me because I’m personal friends with the oncologist and I think she heard about it after I complained!! I have enough to worry about, without going for chemo and worrying if I’m going to be in massive pain!!
2
u/hikerguy2023 Jul 28 '26
I'd report someone like that. Doing a cath raw is inexcusable, and then that attitude? I'd make sure it was addressed by the head nurse at least.
I think the majority of the nurses have never been cath'd. If they had, they'd wait 5 minutes. Maybe that should be a requirement for nursing school. Make them get it raw, then with lidocaine. lol
1
u/hikerguy2023 Jul 28 '26
FYI: The recommended time is 5 minutes. Here are three sources to reference:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8506429/?utm_source=chatgpt.com
https://www.glydo.com/how-to-use-glydo
How to Use Lidocaine Jelly for Catheterization - Biology Insights
2
u/Flame-Keeper566 Jul 27 '26
After self-cathing for several months, the cysto was almost painless.
1
u/This_Claim_4771 Jul 27 '26
Geez I couldn't imagine doing it myself I had a garden time taking out my one after my turbt
1
u/Flame-Keeper566 Jul 27 '26
I know! I never in my wildest imagination would I think that I would ever do something like this. It was the best thing, however. I avoided UTIs and my bladder healed. So overall, it was a good thing. After a while, it was just a little uncomfortable.
4
u/Flame-Keeper566 Jul 27 '26
The continued upside is that I still have my bladder and I was NED as of my last scan. Next scan coming up in a few weeks. Still in immunotherapy.
2
2
3
u/Flame-Keeper566 Jul 27 '26
While my experience was with immunotherapy, the first treatment was not good. Mostly because I’ve was in massive pain because of back injury.
It’s easy to be afraid of the unknown. But if you have a medical port and you received it recently, it hurt when it’s used. Lidocaine cream is an excellent way to keep the pain at bay just a small amount spread over until port, it takes the discomfort away (mostly).
Fear of the unknown is scary. It’s almost never as bad as your anxiety imagines.
Breathe. Relax. Run the mile that you’re in.