Containing your anger

14 years 4 months ago #28605 by pemquid
Replied by pemquid on topic Containing your anger
Mike, re: cysto frequency, I think my uro is following the guideline of every 3 months for 2 years; if all clear then every 6 months for the next 3 years; then annually thereafter. If there's a recurrence, the clock starts all over again, which is what happened to me. (Actually, I'm not 100% sure if he uses this same protocol following a recurrence, as I won't hit the two-year mark from my recurrence until June 2010. Guess I'd better ask!) I tend to get spasms and discomfort after cystoscopy, which is why I'd love to not have them every 3 months, but certainly prefer the safety of knowing I'm all clear (or not) so the discomfort is bearable.

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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14 years 4 months ago #28603 by mmc
Replied by mmc on topic Containing your anger
Ann,

Because you did have a recurrence, you may want to consider staying on a 3 month cysto schedule instead of going to 6 month intervals. None of us love the idea of more cystos than needed but finding a tiny tumor after 3 months is probably better than finding a bigger one after 6 months.

I'm only thinking this because you've had a recurrence. If you only had one occurence, no recurrence and had treatment, then moving to the six months cysto schedule seems more ok.

Maybe I'm just conservative about everything, but I have that better safe than sorry way of thinking.

But hey, what do I know?

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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14 years 4 months ago #28602 by pemquid
Replied by pemquid on topic Containing your anger
I wasn't angry when I was first diagnosed. My response was to do a lot of research, but I was already at least aware of bladder cancer, and that it was very treatable. (My dad had had bladder when he was in his late 60s, only had one recurrence, and died from lung cancer at age 89.) It may have been easier for me at first because I had a small, single low-grade tumor. When I did get mad, however, was when I had a recurrence after two years of being all clear. I was so looking forward to being able to drop down to cystoscopies every six months instead of every three. When my urologist looked up from the scope and said "I see 2 tiny tumors," my first reaction was not worry or fear -- it was ANGER. Because of the recurrence, he recommended I start BCG, so I was back to doing more research, resigned myself to another two years of cystoscopies every three months, and have now been doing the BCG for about 15 months. Come June, if I remain all clear I can go to the 6-month check-up schedule, but this time I'm trying not being as optimistic as I was last time. (I guess I'd describe myself generally as a "realistic optimist.")
Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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14 years 4 months ago #28598 by Moonerj
Replied by Moonerj on topic Containing your anger
I do not think I ever felt anger, more scared and lost I guess in my case. I spent 2 years like a train wreck, searching for answers, lousy computer skils didn't help, no one to talk to that really knew what I was going through.
Then I found this site. This site changed my life with cancer.
So many here shared, explained, answered my questions, gave me advice and became my friends. Now I feel fortunate, noninvasive low grade, cysto are a worry, yea the BCG was a real pain, but I am cancer free 2 years.
So anger no, blessed to be here on ABLCS YES.
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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14 years 4 months ago #28597 by wsilberstein
Replied by wsilberstein on topic Containing your anger
Somehow I don't even feel the right to be angry. I'm cancer-free for 9 years and have my bladder. The truth is, when I don't have a urinary problem I have a pretty good life, but when I get one, I always suffer for weeks.
I look at what some of our other BLC warriors have been through and I'm humbled by their ordeals. I have no doubt that if I had a recurrence I would opt for cystectomy. I know it's a rough road, but every time I'm instrumented these days, it get complicated and miserable.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

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14 years 4 months ago #28596 by mmc
Replied by mmc on topic Containing your anger
Warren,

I don't think anybody would blame you for being angry given your complications and current situation. I'm pretty sure I'd be too! We're all hoping that once you get past this infection that you will be in a much better place and the stricture will be gone.

Mike

PS: I think I'd probably be ticked if I were Bill (and a couple of other folks). Not so much for the bladder cancer itself, but the treatment complications/issues experienced.

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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