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20 yrs w/out reoccurence the longest recorded?

4 years 3 days ago - 4 years 3 days ago #47698 by CatherineH
Statistics for recurrences can be interpreted in many ways. I don't think it is a cut and dry 70% WILL and 30% WON'T.

You can also look at it as EACH person with BC has a 70% chance of recurrence, and 30% chance of no recurrence. More than likely the number with recurrences will be larger than 70% of the total bc patients because everyone (100% of patients) has more than double the odds of at least one recurrence. As Diane said, the time between checkups gets longer and in time the day-to-day worries subside until just before your next appointment. In the meantime, we learn to go about our everyday lives as much as possible.

I don't mean to scare anyone or further complicate this issue. These are general statistics and are cited to emphasize the diligence that is required to have the best chance of staying ahead of bc.

REMEMBER... the bottom line is if you have transitional cell carcinoma (aka 'superficial'), you MUST follow your treatment/checkup schedule to the letter.
The same goes for all types of bc as far as getting your cystos/scans when scheduled, but these particular stats refer to TCC.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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4 years 3 days ago - 4 years 3 days ago #47697 by fighterm
I think I found that paper that I read about one stem cell replacing the whole bladder lining. I put the link in the "Articles of interest". However, they are talking about the invasive BLC. I don't know if it's the same for superficial non-invasive. I am sure new studies are coming.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 4 days ago #47694 by Rsoward
Thank you for all your replies! I'm trying to establish if EVERY and ALL Bladder Cancer patients get a reoccurrence no matter, history, treatment etc.

My Urologist/Oncologist (Very experienced and known around the Nation & World) told me there are patients that have had BC and NEVER have a reoccurrence!

That's why I was surprised to read a patients blog on BCAN network that he went 20 yrs and it's the longest recorded according to National Urologist Assoc etc. I was under the impression for a small percentage that some folks never have a reoccurrence.

So from the responses I'm receiving it looks like a guarantee it will reoccur sometime in my lifetime. I'm confused by the conflicting information from my doctor and the 20-30% according to bc research that do not have a reoccurrence.

Thank you all again! Any information is helpful as this last year has been rough.

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4 years 4 days ago #47692 by sara.anne
Have no idea whether there is any fact behind the 20 year claim or if it is in the realm of "urban legends." I think the urologist is trying to make the point that superficial bladder cancer DOES come back. Diane's post pretty well states it.

Yes, it IS theoretically possible for one malignant cell to multiply as "fighterm" describes. I would probably describe the situation as one in which the urethelial cells in the bladder lining have become "unstable," either due to genetic or environmental factors, and are more susceptible than normal to becoming malignant, or are less able to respond appropriately to factors that lead to aberations in the cell division mechanics. It is not inevitable that the cancer will return. It is just statistically more possible, which is why our checkups are so important. I know many patients who are many years out (not sure if it is 20!) with no recurrence.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 4 days ago #47690 by fighterm
I read that the BLC is the most recurring cancer among all cancers. In one research paper it was found that one cancerous stem cell in the bladder lining can replace all lining. I hope that the cancer research will address this issue for BLC and solve this problem in the future.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 4 days ago #47686 by Flamenco.
Don·t know if that is a record or not - I was told on first diagnosis that there was a 70% chance of recurrence- took that to mean there was a 30% chance of non-recurrence. Also that the longer you go without recurrence the less likely you are to ever have one. As you correctly said, every case is different.The most important thing with this type of cáncer is that it is usually very treatable if caught early. That means that you have to have to attend all of your checks, and probably for life, although if there are no recurrences the time between checks is extended. SO THAT if it returns, it is caught early. Presumably the patient on the fórum continued to have his checks throughout the 20 years.
I dont think reseeding is the problem, I think it is either a genetic factor, or a cell mutation due to exposure to a carcinogen ( smoking, alcohol, for example) - that is only my opinión.
Re worrying about it, that is something we all do, regardless of how long we have had a "clean" record, but as time goes on you will find you cope with it better, and can put your worries away in a box for longer periods, just letting them out when your check-ups are due, in the meantime just getting on with life.
Diane

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