-
2 Years and no recurance
Is 2 years of cancer free survival a sign cure ?
Any one out there with a story of long tern=m survival ? -
9 Replies
-
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.”
http://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 A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
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.
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
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 (http://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.
Heinz,
I have a slightly different take on this question. My answer is based on questions posed to my doc, and what I have observed since my own diagnosis. I believe that BC is totally a crap shoot.
I asked my Doc (whom I finally went searching for his doctor rating on the internet and found that he was a 1998 Duke graduate)…
“Is bladder cancer a bad cancer?”
And his reply was, “It’s unpredictable. I’ve seen bladders be totally clean for over 2 years, NOTHING, and then suddenly it came back with a vengeance. ”
The lady I know of who got a neobladder last year at UNC had been cancer free for 10 years and then, presto, it was back and covered the bladder.
But, I do agree with the rest of the group, if yours was low-grade to begin with, then your prognosis would be much more hopeful than someone initially diagnosed with high grade.
Vigilance is the only answer for us.
Best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
2 years clean is a good sign because most recurs happen in the first year or two. Your doctor did a good job of cleaning you up, did not leave any cells that could re-seed or leave anything behind. If your tumor was low grade you’re in very good shape. My sister had two recurrences in the first year, but has been clean for about 8 years now.
Wendy
Heinz
without the rest of your pathology and everything it’s hard to be sure but with my initial low grade disease I was told that 10 years recurrence free was the magic number. it never happened but that was what they told me. I felt that if i’d only had one tumour and then was free for 5 years they may regard it as a one-off but I think most types of bladder cancer would indicate lifelong surveillance. I’ve been treated for 14 years with varying grades and types of bladder cancer.
regards
tim
Sign In to reply.
