Joining a forum I never I dreamed I\'d be joining

DougG
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13 years 7 months ago #33662 by DougG

Replied by DougG on topic Joining a forum I never I dreamed I\'d be joining

Kimberly,
Welcome to the website. Please join us on Sunday evening at 8 PM EST in the Chat Room. Each Sunday evening for an hour, the chat room is open. It is a good place to ask questions and get a quick response. Hope to see you then.
Anita (Doug's wife)

Anita
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Alan
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13 years 7 months ago - 13 years 7 months ago #33661 by Alan

Replied by Alan on topic Joining a forum I never I dreamed I\'d be joining

Kimberly,

Sounds like you have been put into good hands. I had gross hematuria and treated for an infection 1st by my GP and after a week with still microscopic hematuria referred to a URO in a group that specializes in BC. Your CT scan was a good move to help rule out other involvement besides the bladder and cystos while not a fun event I find them more "uncomfortable" than anything. Not to bore you with my case, just posting to let you know while everyone is different yours is a common scenario. Responding more to your why?

BCG entered my life after the URO called and reported high grade (G3). I remember asking why which for me lasted about 1 day, and still wonder how as I never have smoked or been exposed to the other industrial agents that have known causation. There was a relative (uncle) pass at age 92 from BC that he had for years. I still believe this is part of it but, not enough research. You are certainly entitled to take more time on why! My post is just to say for me it happened and I can't go back and let's fight this forgetting about why. The good news as the group will post, this is a treatable disease. Lot's of good info on this site and ANY question will usually elicit a fairly quick response. While Mike and Patricia aren't MD's I respect them as if they were for their wealth of info.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

Last edit: 13 years 7 months ago by Alan.

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mmc
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Mike

13 years 7 months ago #33659 by mmc

Replied by mmc on topic Joining a forum I never I dreamed I\'d be joining

Kimbery,

That damn cello! Leading cause of bladder cancer ya' know... Must be the vibrations or something. OK, maybe not so funny but it was an attempt to make you smile.

Glad you found us here and glad that it is Ta. Sorry about high grade. The follow up TURBT is the absolute right thing to do. Your urologist is following protocol. Often times, initial TURBTs are understaged. Sometimes they don't get clean margins all the way around. In any case, the follow up helps to make sure they got it all and that the staging is correct.

Hopefully, you've found some of the good links to information on BCG. Dr. Lamm is the top guy in the country in terms of BCG research. It's worth reading his stuff. After the six weeks, you'll be on a maintenance dose periodically (most likely). This has a very high efficacy rate.

Welcome to the club!

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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Kimberly
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13 years 7 months ago #33657 by Kimberly

Joining a forum I never I dreamed I\'d be joining was created by Kimberly

Hi everyone--
I am a 49-year old female, fitness instructor, erstwhile competitive cyclist, and cellist, happily married with one loving cat. I just had TURBT on Tuesday and they found a Ta tumor (good) that was high grade (not good). My doctor is recommending a follow-up TURBT in about six weeks with a six-week course of BCG. I'll be joining the frequent flyer program of cystoscopies after that.

One month ago, I was playing my cello at music camp. Three weeks ago, I had a CT scan that showed a "mass in my bladder." Two weeks ago, I had my first cystoscopy. Last week, I had the TURBT.

I noticed blood in my urine in July, and the scary thing is that it may have been going on for a year or so, and I was attributing it to menstrual spotting. When the source of July's blood was undisputable, I had a urinalysis and was put on a course of antibiotics to treat a UTI, despite my protests that I was having none of the symptoms of a UTI. When I returned home from my music camp, the blood returned much more heavily, and the doctor sent me for the CT.

The range of emotions has been a roller coaster ride, nearly equal to the speed of the physical events. My friends and family have been incredibly supportive. I know that by catching this early, it is incredibly treatable. Still, I can't help wondering how and why I got this?

I look forward to the support available on this board. I've read some of your stories and posts and it's good to know that I am not alone. I just never thought I'd be joining a forum like this.

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