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6 years 5 months ago #45283 by Flamenco.
Sorry I finished my last post a bit abruptly as I am at work.I have had one very small recurrence shortly after Ist Turb, then clear until May last year when CIS was diagnosed. The bcg seems to have fixed that and at the last check all was good.
Diane

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6 years 5 months ago #45282 by dman
Flamenco, thanks for the reply. I live in San Francisco, California, and am being seen at UCSF. Re: your history, have you had any other recurrences besides your initial tumor?

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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6 years 5 months ago #45281 by Flamenco.
Hi Doug,
Just repeating what Catherine has already said, Welcome to the site. I understand your mind must be in a whirl with a diagnosis of a second type of cáncer, but you are absolutely in the right place here for up to date information, support, and advice. I was diagnosed T1G3, back in 2006, one tumour, treated post op with mytomycin, then a course of treatment with the same. Just to put your mind at ease a bit re the filling up of your bladder, they did that to me post op,which was pretty uncomfortable, but the course of follow up treatments involved the placing of a very small amount of liquid into an already emptied bladder, so not a problema. I have also had bcg treatment last year, and that also involved only a very small amount of liquid placed in the bladder.
I guess some of the members in the States will answer you shortly, but in the meantime it would probanbly be an idea to let them know where you are and where you are having your treatment.

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6 years 5 months ago #45280 by dman
Thank you, Catherine!

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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6 years 5 months ago #45279 by CatherineH
Hello Doug... Welcome to our forum. I am sorry to hear of your recent diagnosis. It must feel like being run over by the same truck twice at this point.

I will reply to your post more fully tomorrow, but it is very late here and I just want to say hello and welcome for now. There are some other members here who have had other types of cancer in addition to bc. I hope they will be able to read and reply to your post as well.

Best wishes... Catherine
Forum Moderator Team

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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6 years 5 months ago - 6 years 5 months ago #45274 by dman
I am a five-year lung cancer survivor who just learned incidentally a month ago (on my last clear PET scan; they ran one because they erroneously thought they saw some growth in my lung) that I have a second type of cancer in my bladder. I'm pretty overwhelmed by having to go through this a second time and am feeling a little uneasy that this could be the beginning of something even bigger. My urologist/surgeon found a 2 cm papillary tumor during a cystoscopy and I experienced my first TURBT about three weeks ago... I'm still having pain at the base of my urethra when I urinate, feels like a short spasm when I first start, but then eases up.

Monday my doctor informed me my tumor was Ta stage, but high grade. The pathology report doesn't convince me that it's a Ta and I'm wondering if it's really at the T1 stage and because she knew I'd be a little panicked that it was high-grade, she played it down a little: The report reads: "No definite lamina propria invasion is seen, but some areas of paradoxical differentiation are observed suspicious for superficial lamina propria invasion; however, this tissue is too cauterized to identify any definite invasion. In any case, no deep invasion is seen."

Because of the grade, I'm scheduled for 6 BCG treatments beginning September 12, and then maintenance doses, I think she said, once every month for three months (or one time every three months, can't remember)(?) My understanding is that not everyone responds to these, and am wondering if any members of the forum might know what the percentage of success is. My doctor also agreed when I asked her that high grade tumors will sometimes progress to muscle-invasive ones. I'm wondering how this can happen, if I'm getting a cystoscopy every three months... does this mean it will progress faster between cystoscopies? If so, I would think a cystoscopy every two months would be more effective even though they're certainly no fun.

Right now I'm flashing back to when I was first diagnosed with lung cancer and feeling pretty scared. I've started seeing a therapist to deal with these anxieties all over again, but it's hard to contain the uncertainty. Will be feeling like I have a handle on the disease when I go to bed at night, then wake up the nest morning, remember it, and have this feeling of doom. Is it unusual to have a solitary high grade superficial tumor? What can I expect from the BCG treatments? I have Wednesdays and Thursdays off, will be having them Wednesday ay 8:30 a.m., will I be able to return to work and be functional by Friday? Also, very important: how much do they fill your bladder up during the procedure? The most uncomfortable part of receiving the mitomycin tx after the TURBT was how full my bladder was... they had to keep giving me Fentanyl because I could barely handle the sensation that my bladder was about to explode! My doctor has assured me Monday there won't be as much fluid involved in a BCG treatment, and the catheter won't be clamped off, but, being a nurse, I'm not sure if I trust her 100% of the time. If my bladder is as full as it was after the surgery and the cath is not clamped, I'm definitely going to have a hard time holding it in...

Any advice or support you guys could give me would be much appreciated. I've kind of sunk into a depression here and am trying to dig my way out of it; felt like after receiving chemo and radiation for my lung five years ago, I'd paid my dues and was very lucky and I could go on with living a normal life. Everything's happening very fast and I'm trying my best to adjust to it all. I'm very glad forums like this exist...

Doug

Diagnosed with TaG3 8/26/13
Awaiting second TURBT 9/11/13

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