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BCG .. the good bad and ugly

2 years 7 months ago #51051 by jroza1
My 3rd is tomorrow. It has been relatively easy, but I still really hate the catheter. I have them numb me, mainly because I want the first hours of peeing to happen while Im numb.

my side effects have been restricted to flu like symptoms for about 5 days after each treatment.

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2 years 7 months ago #51050 by Razorbacktusk
well 1 more to go #6 and have had relatively zero issues

before i started i had LOTS of anxiety and apprehension, well after 5 and 1 day from 6th ..

all that was totally unfounded. it was basically a breeze.

so to anyone reading this who has yet to start BCG .. take to heart.

I have no idea if my experience was normal or rare!! BUUUt seams that most folks with "Normal" stuff will not post or even come to the forum, while those who have issues do come here and post ..

i call it the "firefighter syndrome" no one pays attention until theirs
a fire.

Feb 1st 2016 TUR grade 2, removed were 2 tumors and many tiny nodes, the 2 large ones were 3.5cm
BCG maintenance in progress

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2 years 8 months ago #50938 by sara.anne
I would like to strangle whoever came up with that "five" year deal on cancer survival!! Five years is just that. Five years. Think it is a convenient number to work with. Yes, the longer you go without a recurrence, the better it is, but there is no "magic' milestone. Five years is often used with breast cancer and lung cancer also.

My urologist says that I will be seeing him once a year FOREVER. I an 8 years out and very grateful for every one.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 8 months ago #50937 by Razorbacktusk
in googling this site and the web i keep seeing a "5 year" time table for bladder survivors, what exactly does this mean? after diagnosis, it takes up to 5 years to be declared clear or cancer still progressing???

what is the survival rate past 5 years? and recurrence... and yes i saw lots of stats and charts but few made any sense...

do we have to go for chk ups every year after the 5 year plan?

and yes i understand that each case is special in its own criterion, so what do we do just live life and keep a chk on any possible recurrence? "Yes" and if a recurrence after 5,8,10,15,20 years what then ?? remove the growth and BCG again?

My Doc did abbreviate the possible scenario, if BCG dont work after a possible 2nd BCG X6 then he said its bladder removal time.


and i read where there are a few options for that such as creating a bladder...

BUT main question is how long do bladder cancer survivors survive after diagnosis? can we trudge thought it and keep it at bay or are we just delaying the inevitable?

Feb 1st 2016 TUR grade 2, removed were 2 tumors and many tiny nodes, the 2 large ones were 3.5cm
BCG maintenance in progress

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2 years 8 months ago #50935 by Razorbacktusk
i keep reading where you guys have pain and other issues .... just got done with 3rd of 6 BCG [1st set]

talked to my nurses doc only there for major stuff, both ladies said they can report very few issues with BCGs and bladder issues, and this clinic in looking into the office has a whole wall of clients folders.

Ive had zero issues with the caths and symptoms, only symptom is fatigue and its not to bad, and seams like it enhances my leg neurological disorder,

you guys will reply "just wait" well i hope the next 3 are just as easy as first 3,

and ive also made some elixirs to boost my immune system, a combo of TEA = green tea, yerba mate, fresh garlic, Tumeric, Ginger, cayenne, black pepper, dark brown sugar or honey, and by the TBL spoon Black strap molasses, honey, apple cider vinegar, Cayenne, Tumeric.

Feb 1st 2016 TUR grade 2, removed were 2 tumors and many tiny nodes, the 2 large ones were 3.5cm
BCG maintenance in progress

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2 years 8 months ago #50930 by badblad
I have not commented lately. Sorry to ignore you all. Background on me starts 3 years ago with T1 low grade tumor removed. About 8 months later cysto showed a small tumor which I chose to have "burnt" off in the office. About a year later another tumor showed up during cysto. Surgically removed and it was T1 High Grade. The scary kind. Very unusual to go from Low to High Grade. Then started BCG. Did the initial 6 followed by series of 3's. They are all painful but Number 14 was very nasty. Fever, chills and a lot of urinary pain. I was given the choice to skip #15, but my mind set was that I want the cancer to be gone so I did it anyway. Number 15 was a stinker. Same fever and pain. I had it done in December and it is now end of March and I still have awful pain most of the time when I urinate. I am willing to tolerate the discomfort if the cancer is gone. I want to keep this bladder. Next cysto in one week. We will see what is going on.

I have been cancer free for a year. It is just discomfort. I am good .
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