9 months 1 day ago - 9 months 11 hours ago#58227by NelsJenn
I was given Mitomycin after my first TURBT. I had a terrible experience with bladder pain and I still don't know if this pain was due to the TURBT, the drugs to manage my bladder control, or the catheter that I was required to have in me for one week.
I decided to switch my urology team to UCSF for my second TURBT, since they utilized blue light technology (less scraping the walls of the bladder blindly) and they believed in removing the catheter immediately after the TURBT procedure. ALSO, they didn't use Mitomycin and I was told there was not any empirical evidence to prove its effectiveness.
UCSF is recognized for their medical care in bladder cancer and bladder cancer research. Their knowledge and patient care is outstanding, I believe.
I am sharing my experience to generate awareness among this community. Does anyone else have an opinion (based on experience) or qualified information on the effectiveness of Mitomycin-C?
Last edit: 9 months 11 hours ago by NelsJenn. Reason: Grammar
At November cystoscopy following my initial TURBT, doc saw "3 or 4 red patches" around the initial resection site. (Of course this news didn't help my state of mind.) Had a second TURB with intravesical Mitomycin in December, although no catheter. Doc resected one site and biopsied another; pathologist identified cystitis cystica, but no cancer in tissues. Between weeks seven and nine, following 2nd TURB, started having some discomfort when urinating (particularly getting flow started), with minor bleeding and passing small clots. Sounds like your reaction is much more severe, but timing seems similar. I don't know if my experience was a reaction to Mitomycin or just the healing process. At March cystoscopy, doc says "it's still healing in there." He'll be taking another look-see soon. Hope your symptoms diminish quickly. Stu
7/18 Gross hematuria
8/18 TURBT, papillary urothelial carcinoma, T1 LG
12/18 TURB, benign urothelial mucosa, features consistent with cystitis cystica
9/19 TURBT, HG papillary urothelial carcinoma, noninvasive
Last edit: 11 months 3 weeks ago by JigStep. Reason: spelling
Similar to you , tumour removed six weeks ago , non invasive grade 3 , bleed a lot , had a UTI , catheter in and out twice , stopped seeing blood around ten days ago, still seeing the occasional scab , doc said its normal , due to start BCG in a week , doc is also sending me for a thorax CT scan to be on the safe side. stressful times.
Wow! Thanks for posting. As mentioned earlier I have not read about such a delayed reaction but, I have learned many things are possible and as soon as I think I have seen it all here comes another change! You are correct nonetheless, that is good news I just hope you heal completely very soon.
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.
My pathology report came back this morning and the Dr suspects I had a severe inflammatory response.
Bladder mass biopsies:
- Hemorrhagic cystitis.
- Urothelial hyperplasia with atypia, favor reactive.
This is good news, considering this time last week I thought I had another tumor. I’m still in a lot of pain though. I’ve almost finished my anti-inflammatory pack and I’m wondering if 7 days was long enough. Anyone else experienced hemorrhagic cystitis? I’m a very active 34yo male and it has kicked me to my knees. I still find it odd that I had such a delayed reaction to a single dose of localized chemo in my bladder following my first TURBT.
Would love to hear others thoughts and experiences...