I'm surprised to meet someone so young with TCC but there are more of you out there, I"m sorry to say.
Your diagnosis of superficial, non invasive TCC is a very common one, doctors are almost always able to diagnose this from the way it looks, though biopsies are done to confirm. Removal and no other treatment is more or less standard for a low grade papillary tumor. Because of the physiology of the bladder and its lining the cancer doesn't enter the blood stream or lymph system unless it's an aggressive, invasive sort of tumor. These are also easily diagnosed by the way they look but biopsies are needed to make a definite diagnosis with any cancer.
Do I understand you to be saying the doctor did not remove the visible tumor and do a biopsy and pathology? This would be an unusual move, but not without precedence, as recently updated on the main site:
Update 2006: Two articles support 'watchful waiting instead of automatic removal of low grade superficial bladder tumors:
Expectant treatment of small, recurrent, low-grade, noninvasive tumors of the urinary bladder,.."As long as the tumors are low grade, the risk of invasion or metastasis is zero. Every small papillary tumor does not require removal when observed. Some of these tumors grow very slowly and, with proper reassurance, can be safely monitored. "Mark Soloway; Miami; Urologic Oncology: Seminars and Original Investigations Volume 24, Issue 1 , January-February 2006, Pages 58-61
Watchful Waiting Policy in Recurrent Ta G1 Bladder Tumors - Conclusions: Small, recurrent papillary bladder tumors after resection of low-grade Ta tumor(s) pose minimal risk for the patient. A watchful waiting policy— without resection of the tumor—may be considered in these patients Ofer N. Gofrit, et al.Israel; European Urology Volume 49, Issue 2 , February 2006, Pages 303-307 PubMed blcwebcafe.org/superficialblca.asp
I am 36 also non-smoker just had the tumor removed, still having some bleeding. Although I do not have any answers for you I can tell that I too am scared and very anxious. Every time I take a pee my anxiety level hits a new high. I too have your concerns about metastic ca. I hope all works out for. Certainly the pain you have is probably another stone.
So I guess I'm a bit confused. If my cancer is non-invasive, can it EVER become invasive? And if not, then why treat it? Or is it just an early stage cancer and therefore, termed non-invasive? Even though the doctor said my bladder looked good w/the cystoscopy is it possible for there to be tumors in the bladder he can't see? If non-invasive papillary carcinoma is viewed as Ta, can it ever progress and become a death sentence?
I don't yet know what type of treatment I will be needing until I have my biopsy on Monday, but the pain I've felt has been increasing over the past few months. So I'm fairly certain it's spread in some manner. Forgive me, but I guess I'm just a bit frightened. And of course, with the internet at our fingertips, I've read all I can find. Even so, I feel pretty ignorant. It's good to be informed but sometimes it scares one, as well.
The good news is that it is not invasive. I had invasive TCC in my ureter and luckily, it had not spread when they found it. If the cancer is termed invasive and it occurs in the ureter or the kidney, it would mean that it can invade through your muscles surrounding that region and has more probability of spreading . Since yours is not invasive, unless it is close to a blood vessel, it should mostly be contained and not metastatised elsewhere. Usually, superficial cancers in the ureter have a very good prognosis. You most probabily have the pain because of the growth in the ureter or the kidney. I had pain too especially after my biopsy during which my ureter got almost completely blocked.Hope this helps. Good luck..
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012
Wow, I'm so glad I found this site. I'm a 50 yr old female (never smoked, though mother was heavy smoker and was exposed to hers 2nd hand) and I was just dx'd last week with bladder cancer (non-invasive papillary carcinoma) after a cystoscopy/bladder wash by my urologist. Funny thing is, he said (during the cysto) that my bladder looked "great." I am scheduled for biopsies on Monday, 6/11/06 and he will also "brush" my ureters. My concern is this: if my bladder looked so healthy, obviously the cells must be originating from above. Whether it is the ureter or kidney remains to be seen. My WORRY is this: that it has already metastized beyond the kidney. I have had kidney stones for years (25), indeed, have passed over a dozen since April 2005, and have consistently had hematuria; so, due to this fact I believe that the cancer has been around awhile. I have repeatedly been to my physician, who has been great, except that symptoms have so easily been explained by the stones. Pain has increased (flank and down the ureter to bladder). I cannot find anywhere on the web how long kidney/ureteral cancer can exist before it spreads, or at what point one feels pain. I know that in due time these questions will be answered with the biopsies, etc., but I'm pretty anxious. I'm worried. :-/ My questions are: Can non-invasive papillary carcinoma cause pain, and by virtue of the fact that it has been termed "non-invasive" - does that mean it would NOT have spread yet?