-
cysto
Hey guys, I have been a lurker for a couple of years now and posted once thinking I was going to need Neo bladder surgery. Turns out with a second opinion it wasn’t invasive so had several rounds of Mitomycin in 2008. So far so good but going back on the 14th for my 6 month check-up. My question is I now have a new urologist, my old one retired recently, and for the past 2 years I have been fortuate enough to be put to sleep during my cysto procedure. Starting now my new doctor does all his in the office. I would like to know what to expect from the cysto while being awake. I am a little nervous about it for some reason. Thanks
Randy
-
13 Replies
-
I agree with many here-thinking about it is worse than the procedure. I have had cystos with and without the local anesthetic (one uro did bladder washes for FISH and the lidocaine messed the test up). I would rather have the cysto than the BCG. Not my favorite procedure, but glad to have the checks every six months.
Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
My doctor prescribes 20 mg of generic valium for me to take about an hour before the cysto. I always keep my eyes closed throughout the procedure.
Anita
Forum Moderator
Caregiver
P.S. Now that I’ve had my bladder and prostate removed, I’m pretty sure I could do my own cysto. I do know that I was scared to death of the idea of potentially having to self catheterize after getting my neobladder. I learned, thankfully, that without that prostate catheterizing is a piece of cake. I say thankfully, because I do have to catheterize all the time so I’m pretty darn glad there is no pain associated with it. Not even ‘discomfort’.
That damn prostate was a pain in @$$ for years so good riddance to it!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
For men, the pain can be from non-existent to severe. The prostatic sphincter is often the area of the most discomfort/pain. Enlarge prostate (BPH-Benign Prostatic Hyperplasia)can make things much worse as the prostate enlarges and puts even more pressure on the urethra. Pushing a scope through that point can be pretty bad for some but for MOST it is better categorized as discomfort. Usually, once past that point, it is not painful.
If you experience pain, make sure to tell the doctor and ask about something to make it better. The numbing gel should be left in for 10 minutes before the actual procedure if it’s going to do much good. Sometimes, docs will go as far as giving a valium or something just to relax you enough and to take the edge off.
Everybody is different so just because it is painful to one, doesn’t mean it is to another (and vice versa).
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I have never been put to sleep for mine. He dosn’t even use a pain med, just ky jell. It’s not painfull, just a little uncomfertable, and I get to see what is going on in there. I have been doing this for 6 years every 3 mounths, because of my reacerances every 9 mounths to a year!! ( sorry about the spelling )!!!! :ohmy:
T1,NO,MO battling bladder cancer since 2005
I would call our lovely procedure “uncomfortable” but not really painful. Yup, it still isn’t any fun. This is a lot less stressful than other types of cancers and those tests! Once it’s over I pee funny for a few hours and that is about it.
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.
I’ve never been put to sleep for a cysto, but we females do have it a little easier. My only problems had been a lot of spasms for several hours afterward, but over the years that has gotten way better. I did have some pre-medication to take for the spasms, but no longer need it. If you anticipate there being pain, you might want to ask them about something you could take right before; I’ve taken just ibuprufen with good results. And of course the numbing jelly is a must!
Ann
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
Randy, I hated the scope before i had my R/C. The last few i had before my R/C i took a couple of oxycodone. The result was good. There is just no good reason in this day and age to have to experience the pain. As for watching on the screen, i preferred the drive in movie screen when i was 18 yrs. old.
Duke
Thanks guys, I appreciate the info very much. I am just a little anxious about the procedure for some reason, I guess being put to sleep for 2 years has spoiled me a little. I just wake up in my out patient room and its over. I will keep everyone posted after the procedure and try to stay more involved in the forum, I love this site, lots of people here who have “been there,done that!” Thanks again for the info.
Randy
The thought of what they’re doing is worse than what they’re actually doing. It’s more uncomfortable than anything else. There may be a little pain when the pass through the prostate, but just try to breath deeply and relax as best you can. Just make sure they use lidocaine jelly before they insert the scope and you’ll do fine. It is kind of interesting looking at the monitor to see what’s going on and it helps to take your attention away from the procedure itself.
47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.
My last several have also been conducted in the dr’s office. Other some minor pain while the scope is being passed through the prostate, there are no other issues. Much quicker and less side effects than being put under.
Hi randy,
I was a lurker here for about 9 months gathering info. This seems to be the only game in town for our cancer, but it is the greatest as everyone is a member of the “club” and has lived it.The cystoscopy should be ok, just be demanding while they are putting in the cath, if it starts to hurt, tell them to stop. My doc and his nurse were very slow and patient especially through the prostate and used enough lidocain gel to push the Titanic through a garden hose. Very little discomfort at all. I think if your awake they do a better job.
If your doc is cool, you get to see what you’ve been fighting.
Bill
5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no metabolic response10.18.12 Wife leaves, now a single dad
10.31.12 New scans show metastic return to liver 2.4.13 New scans for treatment, no other sites found
2.20.13 New chemo regiment started, will run at least 12 weeks
Mine was in the office with an area pain killer so I knew what was going on and watched the screen. My urologist explained it all to me before going ahead. He said although I would probably feel it a bit it wouldn’t be defined as pain. I think he was right. The fear I had was what generated the pain. It is just a procedure you just don’t like to think about- that is it is normal to grit you teeth and feel pain even though there is none. Good luck with your results on the 14th & I hope you can post that everything is good.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010Sign In to reply.
