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Follow up cystoscopy after resection – unknown object!
I was diagnosed with superficial bladder cancer last November and had a resection in December. Went back last week for a follow up cystoscopy and a consultant I didn’t know did the test, along with a student. After looking around for some time, he said out loud to the student “I don’t know what that is!”. After some more ferreting about with the scope, he released me and drew a circle to represent my bladder, and then a smaller circle indicating the thing he wasn’t sure about. He said it may be a dilated ureter (I am 51 and female by the way) but he was going to check me in as a day patient, give me a general anasthetic and have another look. Instead of being completely reassured as I was after the surgery (they had got it all and it was non-invasive -hurrah!) I am now trying to avoid thinking about ‘putting my affairs’ in order again. I have a 12 year old son to raise (on my own) and I am very scared but I have to pretend that everything is okay. I have contacted my usual consultant’s secretary and she says that my appointment for the hospital may not be until the end of April….! I’m trying to stay positive but my mother died of bowel cancer last August and the feeling of dread keeps overwhelming me. Any help/info from anyone out there would be useful.
Just to finish, I’ve researched a dilated ureter and I guess it’s possible that I have an infection, although I have no symptoms. Should I make an appointment with my GP to be tested for it? I’m worried about relux/injury to my kidneys.
Arggh!!!
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13 Replies
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Gina…since you’ve already started the BCG i would go ahead and finish it…and hopefully the 3 month check up will be clean. Please don’t spend your time worrying …i’m sorry i didn’t realize you had already started treatments…I think i got caught up in LTS posts. It gets confusing sometimes. Pat
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thanks so much to you both…should i ask about having another one…i mean…what if?…sheesh…now i’m bothered by this…should i just complete the bcg and then request one?…they were talking about waiting THREE MONTHS before doing another cysto..to check on things…
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Gina,
If you don’t mind me jumping in (I know you posed your question to Pat), my own local Urologist told me that it is very hard “to get it all” and I was scheduled for Re Turb on my first visit a week after original TURB. My tumor was termed as a “whopper” so I don’t know if that made the difference.
Everything I read on the NET recommends a Re Turb for residual tumor. I’m glad my Doctor made the decision for me.
Food luck,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Gina….Publication: Urology Times
Publication Date: 01-AUG-07
Delivery: Immediate Online Access
Author: Gebhart, FredArticle Excerpt
Anaheim, CA — A two-step transurethral resection (TURB) procedure in patients with superficial transitional bladder cancer, already part of practice guidelines in Germany, appears to improve patient outcomes by identifying positive tumor beds that may require a second TURB, according to findings from a Swiss study.“These guidelines were put in place to give sufficient data for accurate staging of the tumor,” Osama Shahin, MD, senior physician at the University Hospital Basel Urologic Clinic in Switzerland, told colleagues at the AUA annual meeting
I think with the major centers this is becomming routine to do a second TURB..but i have no idea what they are doing in the UK. A young uro doesn’t mean a bad uro just one who hasn’t seen a lot of this. Pat
so patricia,
if i understand you correctly…YOU made the decision to have the second turb…?…is this something we should consider routinely?…i am not sure that i am totally confident with my uro…she’s in a great practice with several TOP docs in our area…BUT, she is the newbie and quite young…anyway..thanks again for all your help…ginaOK Gina..thats good that you got the path report. The transitional cell carcinoma high grade…CIS is always high grade…but all treatable with BCG…..but..there’s always a but…..i would if its possible in the UK to get a second opinion and a second TURB. Often residual tumor is left behind….may be the skill of the surgeon..may be reseeding of the original tumor….they like to keep you guessing on that one. Anyway its all treatable with BCG but you must be very dilligent about follow ups. The reason my second biopsy was only 9 days after my first TURB was my head was in a spin and i allowed the first Uro/surgeon that my internist recommended do my surgery as i was quite frightened and truthfully all brain cells were dead momentarily. I made the decision once the fog cleared to travel to one of the top cancer centers and top surgeons for Bladder Cancer. They got me in within a week and one look at the specimen on the slide it was determined it was a lousy specimen..thus the second TURB so soon. The man was a master at what he was doing..I had no ill effects…was only out about 20mins…woke up..they took out the cath as all was clear…i peed in a cup…and i walked out feeling just great. My surgeon got all the margins that were left by the previous surgeon and all that had gone into just the first layer of muscle.
It was invasive and i did have to have a cystectomy but its now 5 l/2 yrs later and that was one of the best decisions i ever made. Pat
patricia….how is it your second biopsy was only 9 days after your first tur?…all this talk about residual tumors is very unsettling!…i got a copy of my pathology report today in the mail…it says,”non-invasive high grade papillary transitional cell carcinoma,with extensive adjacent carcinoma in situ…plz help me…thanks gina
hmmmmm… a bladder specialist that see’s an unknown object…..guess he has some more studying to do…….anyway LTS i would definately go for the second TURB as you do need to have this taken care of……and it could be that all of the first tumor was not removed..that happens quite frequently…..and that a newer area has popped up. Believe me you want this taken care of and biopsied…and the sooner the better. I’d try to get that date moved up from late April if possible.
My second biopsy was 9 days after the first and there is no question in my mind that the second opinion and second quite respected surgeon saved my life as residual tumor was left behind and he got it all.
Good luck to you and don’t be afraid of a second biopsy.
Pat
[quote author=gina link=topic=1976.msg14827#msg14827 date=1206497808]
LTS…I can’t give ya much encouragement!…BUT, I can sure tell ya that I KNOW how you feel!!..My first cysto was done in my doctors office, it was kinda cool as she looked in my bladder she had her assistant flip on a “tv screen” and told me to look..I could see the inside of my bladder very clearly! Technology!!…She was looking for the tumor my gyn found in an ultrasound of my uterus!….moving along saying wow, your bladder looks great!!…all of a sudden she sounded alarmed when saying, “I’ve never seen anything like it!!”…”DO YOU SEE THAT?”…I mean, it was there right in front of us…all I could think of was, I am with a SPECIALIST and she’s never seen it before!!…her voice that day is what continues to scare me now…i am so confused and afraid….two weeks later they did the resection…then came the diagnosis and bcg treatments started yesterday!!…bye the way..i too am a female 51 yrs old!!…plz lets keep in touch! take gentle care, gina
[/quote]Hi Gina,
Just a quick note to wish you the very best with the BCG treatments!
Helen
Hi,
Thanks so much to you all for your replies to my post. I’ve since made some calls and discovered that the man who examined me wasn’t a consultant – he was a doctor who specialised in bladders. I now have an appointment with my own uro next Thursday (hurrah!) and I have great faith in him, so I will ask him what he thinks and if I definitely need a day admission. If so, I’ll go ahead with it but it’s likely (so his secretary tells me) that it will be the end of April before I go in – arggh!! Apparently the day admission is so that they can knock me out and use a rigid tool to take a biopsy.
There was a small area of suspicious cell stuff that the doctor found during the cystoscopy, as well as the ‘unknown’ area. He said, “I could have whipped that out today, but I want to have a look at this other area, so we can do that at the same time when you come into hospital.” I’m not sure whether it was left over from the initial surgery or whether it’s new, but I don’t suppose the experts always know that either. It’s a relief to know that it can be removed as it shows though, as opposed to having to go through surgery again!
So that’s it. The feeling of dread comes and goes, but today the sun is shining and I’m determined to look on the bright side! Also I’m vastly relieved that I’ll be seeing my uro next Thursday, as he treats me like an intelligent human being and that’s all I’m asking for, really.
Anyway, thanks to all of you again and I’ll keep you posted…
LTS…I can’t give ya much encouragement!…BUT, I can sure tell ya that I KNOW how you feel!!..My first cysto was done in my doctors office, it was kinda cool as she looked in my bladder she had her assistant flip on a “tv screen” and told me to look..I could see the inside of my bladder very clearly! Technology!!…She was looking for the tumor my gyn found in an ultrasound of my uterus!….moving along saying wow, your bladder looks great!!…all of a sudden she sounded alarmed when saying, “I’ve never seen anything like it!!”…”DO YOU SEE THAT?”…I mean, it was there right in front of us…all I could think of was, I am with a SPECIALIST and she’s never seen it before!!…her voice that day is what continues to scare me now…i am so confused and afraid….two weeks later they did the resection…then came the diagnosis and bcg treatments started yesterday!!…bye the way..i too am a female 51 yrs old!!…plz lets keep in touch! take gentle care, gina
Any way with a National health care system that you can get a different consultant? I’d sure go for that second opinion now………….Pat
Dear Long,
When are you scheduled for day surgery???
“…may be a dilated ureter” doesn’t sound at all like an “object”. I’m confused…. :-
Okay, it’s hard to know whether or not to be scared yet. It may be NOTHING and it may be SOMETHING. We just don’t know yet.
Come to think of it, why haven’t these doctors done a 2nd TURB for residual tumor???? (It’s recommended, you know.) My Doc did a Re-Turb 4 weeks after the 1st Turb, and guess what he found??? Residual tumor!!! There was tumor still in there!!
Also, at my last cysto, my Uro really frightened me (and he frightened himself) when he told me he couldn’t find my left ureter!! He asked me had I had surgery on my left side and I said, “Yes, my ovary” and he said, “No. Not that.” Anyway, the ureter finally opened up, IT HAD BEEN IN SPASM MODE, and all was well again.
He apologized for frightening me, and he told me that many Doctors would say that they had seen the orifice, when they hadn’t seen it at all….(great)
Anyway, there’s a point here….also, I’m thinking out loud….my point is this….don’t get scared yet…..hold on, and try to get that appointment soon.
Best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
