Recur after 2 years \"all clear\"

Lauren--
My reaction to having a recurrence was not quite as strong as yours, but I was really mad, and mad at myself in some ways for becoming so complacent. Somehow, when you hear all those "all clears" every 3 months, you begin to think you're going to beat the odds and not have a recurrence. It made it worse that it happened at the exact point (2 years) when I was lopking forward to switching to 6-month check-ups. But, I know you can have a recurrence even after 15 years of being clear (I know someone who did). I, too, was more upset after the tumor removal last week than I was when the uro first discovered the new tumors a month earlier. I think that's because he's now recommending BCG, simply because of the recurrence, in spite of the long all-clear interval and the low grade/low stage/small size tumors. I'll post about how the BCG goes, just in case you have to go down that road.

You stay strong too. I do tell myself I've got it easy compared to many here, and I remind myself that the uro keeps telling me this is "nuisance" type of cancer, and that if he had any kind of cancer, this is what he'd want to have. (If he were a dermatologist, I presume he'd prefer to have a low-grade skin cancer!).

Ann

I did find an odd link however from a Netherland study.....?
www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XMT-4HM6GNF-1P&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=e80f941b5d758446a1066f1bc51542c6

Pemquid,

I had the same... same inital diagnosis; then 2 clear years, then a recurrence, which I had biopsied/fulgurated in-office, too. That was last Feb. My uro kept me on 6-mo schedule for cystos with a cytology at the 3 mo. point, however, since the recurrence was also TaG1. I go back on the 21st of August for the next cysto.

I was very complacent last Valentine's Day, too.. and when he said "uh-oh" during the cysto, I had such a de;ayed violent reaction.. after the biopsy and fulguration (and dern that HURT, but for a very short time), I went out to my truck (alone), and went pretty near hysterical in the parking lot. Perhaps I thought myself invulnerable to anymore news of cancer, after hearing it once 2 years before? Even after all I've studied this beast, I guess I thought "once is enough"...not so
Last month, I was much more panicky about my mammogram, now knowing that having cancer ONCE is not going to guarantee me a cancer-free life going forward.

Now, if they find it again next month, I will be having BCG for the first time since my initial diagnosis. I won't be so shocked this time; in fact, I shall go in and watch the monitor, expecting to see it again, and will go have a very large martini if it isn't there:laugh:

Best of luck to you, be strong, remain fearless!
Lauren

Winndixie-
Thanks for the words of encouragement. Pathology report came in on Friday on the 2 recurring tiny tumors and it is the same as for initial one, i.e. papillary urothelial, low grade, no evidence of invasion. I'm still up in the air about whether this is the time to start BCG, given the long interval (almost 2 years) before the first recurrence and the fact that the new tumors are low grade and stage 1. I only spoke with the office nurse on Friday, who called me with the results, so will speak with the uro next week and see what his recommendation is re whether to start the BCG protocol now or wait and see what happens at subsequent 3-month checks. I've read a lot on Dr. Lamm's website (and elsewhere) and it's still not clear to me when you start BCG for low grade, non-invasive papillary tumors. Is it when there is any recurrence after primary tumor (no matter when)? Multiple recurrences? Presence of multiple tumors?

Ann

I totally relate and understand your disappointment at the reoccurance! Glad to hear you are over the in-office procedure and hope your BCG procedure goes well for you. It's hard not to forget we have BC---until the next test rolls around. I'm in my third year clear and on "yearly checkup" basis, wonder if that's too long a time to wait. But, my urologist and her colleague are participating in a program with a big university in my state and she appears to be up to date on
BC treatments plus very supportive. So far, so good. Will look forward to hearing how your BCG treatment program goes for you. Good luck!

nix
neobladders are great when they work well. hats off to your brother and not great for him but i guess fantastic for you to have as an inspiration in your situation. makes you wonder.

tim