recurrence of superficial tcc

6 years 7 months ago #47288 by fighterm
recurrence of superficial tcc was created by fighterm
I am in treatment now for Non Hodgkin's lymphoma, and my treatment works, my midway scan showed significant clearance of lymphoid masses. However, a small mass in the bladder looks suspicious for tcc. I was told that it most likely superficial, non invasive etc. But then I read that 70% return in 3 years and they usually invasive. I don't understand this statement. Is it 70% of all superficial tccs return or is it 70% of all returned tccs return in 3 years.

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6 years 7 months ago #47295 by Flamenco.
Replied by Flamenco. on topic recurrence of superficial tcc
I think a lot of statistics on any type of cancer are confusing and can be misleading. I was also told there was a 70% chance of the cancer returning, but that doesn·t necessarily mean it will become invasive. Superficial bladder cancer has a high rate of recurrance, but with treatment and regular checks, it also has a high rate of survival. The most important thing now is to have a TURB, a procedure where the mass is removed, and examined to determine firstly, if it is a tumour, its grade (how agressive , or not , it could be)and stage ( whether it is confined to the inner surface of the bladder, or if it has penetrated deeper into the tissue). Quite often, following this procedure , a dose of chemotherapy is placed in the bladder, to catch any stray cells in the area. Once you have a diagnosis, your doctor will advise on whether any further treatment or operation is required. Please keep in touch with us when you have your results, but do not stress out too much on the statistics, the good thing is that something has been picked up on your scan and probably at an earlier stage than if you did not know about it until there were symptoms.
Diane

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6 years 7 months ago #47327 by Whatnext
Replied by Whatnext on topic recurrence of superficial tcc
Hello,
I am new to this forum and have had multiple TURBT procedures for recurrent bladder ca, despite BCG treatment. I just had my seventh TURBT and a stent was placed in my ureter. My fear is that the cancer has spread to my ureter, and I'm wondering how common this might be. Also the stent has caused much discomfort and the plan is to repeat cystoscopy next week and remove or replace the stent. Not sure what will happen next week, but the last 6 weeks have been very trying. I care for 2 adopted grandchildren and having so many recurrences is a bit frightening!
Any thoughts or experiences are most welcome!

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6 years 7 months ago #47334 by Flamenco.
Replied by Flamenco. on topic recurrence of superficial tcc
Firstly, welcome to the site, and sorry that you are having problems with recurrences.What stage and grade have your pathology results shown? Have you had any second opinions on your path results and treatment? Have you been told why has the stent been placed? Without more information it is difficult to advise. Perhaps if you let us know where you are, and where you are being treated, some other member may have recommendations of where to get a second opinión.Please let us know, we will try to help and advise as much as we can - you are not alone .
Diane
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6 years 7 months ago #47347 by Whatnext
Replied by Whatnext on topic recurrence of superficial tcc
Hello, thanks for responding. My diagnosis of papillary urothelial cancer is low grade (Former WHO 1 of 3).
I have sought out a second opinion and am in Boston, Ma. Also consulted with Dana Farber, so I feel fortunate in many ways.
My biggest concern, and the reason for the second opinion was that many of my biopsies did not contain any muscle tissue. I have spent many years working as a health care provider, so not getting muscle tissue for biopsy was unsettling to me. If it hadn't reoccurred so frequently maybe it wouldn't have worried me so.
In any case, the last biopsy also was good news in that there was no lamina propria invasion, but again, no muscular is propria present!

The reason for the stent is because the cells had spread to my left ureter. Placing the stent was surprising to me, and the discomfort has made this post-op course much worse than any others! ( 7th procedure).
My main concern is the lack of muscle tissue, and the frequency of recurrence, despite 2 rounds of BCG.
It's difficult too, to explain to the family...trying to be positive as it's considered low grade, but it's hard to be optimistic when you are in pain and frightened!
Luckily enough, my labs and CT scans are looking good! Not sure why I did not get the Mitomycin, and can only guess the surgeon held off because of the stent? Maybe too irritating?
Going back next week to either have it removed, replaced or taken out.
Thanks for allowing me to post and I appreciate any suggestions.
This was the worst post-op, and as thankful as I am that it's not invaded, it has been a long painful 8 weeks!

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6 years 7 months ago #47350 by sara.anne
Replied by sara.anne on topic recurrence of superficial tcc
You are a classic example of why "low grade" isn't quite as good news as some think. You just have to keep up on the close checkups...nerve wracking as they are!

Not every uro gives mitomycin after a TURB....

Hope the discomfort is over soon.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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