2 Years and no recurance

Christopher said: - All I am saying is that personally looking at the statistics (EORTC in particular), about 75-85% of your 5 year risk for recurrance and 50% of your 5 year risk of progression is in the first two years.. Rosie - your first recurrences happened within this 2 year time frame as well. -

Thanks for clarifying that Christopher. Very interesting! Those are certainly encouraging stats for those who have had no recurrence in the first two years. I had 2 recurrences in the first two years.

Rosie,

All I am saying is that personally looking at the statistics (EORTC in particular), about 75-85% of your 5 year risk for recurrance and 50% of your 5 year risk of progression is in the first two years.. Rosie - your first recurrences happened within this 2 year time frame as well.

Those who make it through the first 2 years without progression or recurrance, statistically have much better odds of never having a recurrance or progressing... Statistically your risk never actually drops to zero, but for each successive year that you have no tumor recurrence or progression, your overall long term risk (statistically) drops more and more. I think Dr. Schoenberg in his book "The Guide to Living with Bladder Cancer", stated that at 5 years without a recurrance or progression that you could call yourself a "Survivor" and were probably cured.

"Q. Can bladder cancer survivors ever count themselves in the "cured" column?

A. As with most cancers, the longer one goes without a recurrence the better. The majority of patients with bladder cancer are initially diagnosed with a non-muscle invasive cancer that can be managed initially with tumor resection via cystoscopy with or without intravesical therapy. These patients however, are at high risk for developing another tumor. The majority of recurrences occur within the first two years. The status of the bladder at the first three-month follow-up cystoscopy is a very important contributing factor to remaining disease free. Recurrent tumors do occur after the critical two year period, though less frequently, and patients should continue to be followed at least annually."

www.bcan.org/index.php?name=Emails&op=view&id=8

I did talk to a gal who had superficial bladder cancer last summer who had gone 20+ years without a recurrance.. it was a one time event for her. I think many of the long term recurrance/progression free survivors have put their cancer scare in the back of their minds and have gotten on with life and are not pouring over statistics and websites. This website has probably only been significantly trafficked in the last 5 years or so? Incidence of bladder cancer increases with age. People over the age of 70 develop the disease 2 to 3 times more often than those aged 55–69 and 15 to 20 times more often than those aged 30–54. So most long term survivors who had bladder cancer 20 years ago are probably dying of something else in a nursing home or have already been planted, probably not too many 90+ year olds posting on BLC Webcafe.

OK, I'm just rambling now - I'll stop

Chris, I have to dissagree with your assessment of two years of being recurrence free as being very confident and the reason few long term survivors are "sticking around" on the forum. Let me explain: I have been seven years since my original pathology. After my intial 1 1/2 year and 2 recurrences, I went two years without recurrence. Then suddenly another low grade recurrence, a turb and another recurrence. I left the forum and the ACOR email group my third year because I became very informed about my particular type, grade and stage so was not seeking more help. I came back to the forum to see what I might contribute and help others as a "seasoned" bladder cancer surivior who has been through large intial tumor, doubt, concern, bcg, recurrence, downgrades, newest protocols hoping I might impart some of my knowlege to help and reassure to others with a similiar history. I am in touch privately with 5 other long term survivors who have had recurrences yet not involved in a forum. I can say the reason I came back was from Wendy's invitation to become part of the dicussion on recurrent tumors. I do see, however, that so many on the forum are under the two year intial survelliance, so much of what I have learned through my many years of observing my pathology, surveillance of growth pattern on recurrences and confirmed pathology don't equate with those on this forum at this time. Most are under two years since diagnosis. I do think if there were more long term survivors of bladder cancer commenting and invovled on this forum there would be much more reasurrance that not all bladder cancers are the same and proper perspective instilled

Heinz,

Well, I was going to say your diagnosis is similar to mine, but then I noticed you had some "micropapillary" urothelial carcinoma in the mix. Did some quick checking and a few studies did say that survival rates were not significantly different between conventional urothelial carcinoma and those with your percentage of micropapillary urothelial carcinoma.

I have been recurrance free for a year since my initial T1G3. Plenty of long term survivors - you don't find many of them hanging around this message board though. My feeling is that if I go 2 years without a recurrance/progression I'll feel pretty confident that I have this cancer beast licked!

Statistically about 75-85% of your 5 year risk for recurrance and 50% of your 5 year risk of progression is in the first two years.. So yes you may always have some risk, but it is much lower after 2 years.

Heinz
With this pathology I'd want to be on surveillance for quite some time. Has your doctor had you on any kind of therapy like BCG? What is your expected treatment course? Some sources quote a recurrence risk of around 50% at 5 years for this tumour with a not insignificant progession risk. Check out the EORTC tables (www.eortc.be/tools/bladdercalculator/default.htm) for specific risks. But in your shoes I'd want a "belt and braces" approach -in other words, I'd want to do all I could to prevent recurrence. Here's hoping you just don't get recurrence at all, which is possible too. But do keep an eye on it and make sure you are getting all the treatment you are offered/need.

Regs

Tim

My pathology report stated:
T1G3 Invasive high grade urothelial carcinoma with approximatlely 20% of the
tumor represented by micropapillary urothelial carcinoma.Lymphovascular invasion is present.