Bladder Cancer Advocacy Network Support Community

The Bladder Cancer Advocacy Network Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Kidneys

By jitterbugsandy · New reply 4:57 am
Journal · 3 replies
By jitterbugsandy Reply 892605 Today at 1:48 pm Report post I came looking for someone with my problem. Had a radical cystectomy in Jan. I am 61 and haven't quit bleeding mildly since. Everything has ...

New to this group

By kjreber49 · New reply 4:53 am
Journal · 9 replies
Hi I found out in March I had bladder cancer. I have had 4 rounds of chem and will have 2 more. I was told even if the tumor shrinks I will have to have my bladder removed and I am so scared. I have a ...

Entereg - anybody had this during RC?

By JD_the_strat_man · New reply 4:43 am
Discussion in Taking charge: How to be a proactive patient · 1 reply
According my surgeon, he has been using Entereg for 2 years now and with it, you do not need the NG tube. I've heard bad things about the NG and this seems to be a good alternative. I'd like to hear from ...

Urine being blocked in pouch

By Mike15 · New reply 4:37 am
Journal · 6 replies
I finally found a pouch that I thought worked for me but I am now reconsidering. I chose a Cymed pouch with an inegrated thin washer. It is comfortable and, since I also apply Skin Tac adhesive, it doesn't ...

RC and Tummy Tuck Surgery being done at the same time!

By snettie · New reply 4:37 am
Discussion in Life after radical cystectomy · 2 replies
Well my Friends, when I first posted that my surgeon was considering doing a tummy tuck at the same time as the RC I asked it anyone had ever heard of it or, indeed had it. The majority of replies where ...

IP Pressure?

By maryla · New reply 2:25 am
Discussion in Life after radical cystectomy · 2 replies
Hi all, I have been having pain and pressure in my IP. I just had a lasix renal scan today and everything is fine. However, not sure why I'm still having this pain and pressure? If anyone has had this ...

CLErie Picnic

By Tamlin · New reply 1:52 am
Discussion in Raising awareness · 8 replies
Several of us from Northeast Ohio and Northwest PA are working on a bladder cancer get together in our area and would like to invite all that want to attend. Thanks to Calypsois for the information and ...

NOTICE! CLErie Picnic-Presque Isle St. Prk-PA,OH Survivors & Beyond Invited

By calypsois · New reply 12:30 am
Discussion in Taking charge: How to be a proactive patient · 10 replies
CLErie Picnic Bladder Cancer Friends and Supporters NE Ohio, NW Pennsylvania, W. New York, SE Ontario & Beyond - Presque Isle State Park - Shelter #1 Erie, PA - - Saturday, June 1, 2013 - - Noon 'till ...

Talking About Cancer at Work

By RachelIdon · New reply yesterday at 11:39 pm
Journal · 2 replies
http://www.1uponcancer.com/2013/05/24/ta lking-about-cancer-at-work/ Have a nice holiday weekend if you see this before Tuesday and have a great week if you see this post later. Rachel ...

DOCTOR CALLED: I AM CANCER FREE!!!!

By ReadyToBeSoAlive · New reply yesterday at 11:16 pm
Journal · 25 replies
No CIS found in bladder, prostate or anywhere in upper tract. BCG Worked!! Just office cystos from here forward. This is the best prognostatic present I could ever receive. With love, and more hope Don ...

Good Info on Non-Muscle Invasive

By Bine22 · New reply yesterday at 11:04 pm
Journal · 15 replies
Just wanted to share this website for those that don't know about Up-to-Date. And it is dated May 2013. We have our fingers crossed as Jim goes for his his 3rd cystoscope post BCG today. http://www.uptodate.com/contents/bladder ...

So what about my pipes?

By graycy · New reply yesterday at 10:56 pm
Discussion in Life after radical cystectomy · 15 replies
So after nearly a year of living with a bag, it all boils down to a plumbing question. Being of a practical mind, and having been present during enough plumbing catastrophes to last a life time, what ...

Frustrated after my BCG followup

By gk105 · New reply yesterday at 10:31 pm
Discussion in Living with non-invasive bladder cancer · 12 replies
Yesterday, after 2 sleepless nights, I went in to my uro office for post BCG 3mo follow up. He said he could do the cysto and biopsy in his office and FISH test. My uro said everything looked good and ...

Bladder Cancer recurrence after BCG

By AtlantaGirl · New reply yesterday at 8:50 pm
Discussion in Newly diagnosed · 47 replies
I am starting BCG next week and am curious about the flu type side effects etc. and if people are unable to complete because of difficulties. I am an engineer so I love facts and statistics. I also am ...

How is CIS of the ureters diagnosed?

By rustycinders · New reply yesterday at 8:41 pm
Discussion in Newly diagnosed · 11 replies
We have three cancers: CIS of the bladder (Tis), exophytic papillary carcinoma, high grade (TaHG) and CIS of the prostatic urethra (Tis pu). How is CIS of the ureters diagnosed ...

Chemotherapy Side Effects

By jgw49 · New reply yesterday at 8:03 pm
Discussion in Life after radical cystectomy · 1 reply
Hello My name is John. I had my RC 1/11/13 after dealing with infections for two months I have been doing well with my ostomy. In early April I started my chemotherapy (three months with 8 infusions of ...

oozing from incision sight?

By sweet28546 · New reply yesterday at 7:41 pm
Journal · 7 replies
I have a pretty decent size incision from under my belly button down and while in the hospital it oozed and they kept it covered. Now being home it oozed a little for the first few days and starting yesterday ...

Prep for RC/ Just off the Press

By Keith1 · New reply yesterday at 6:45 pm
Discussion in Taking charge: How to be a proactive patient · 17 replies
I don't know if this has been brought up here yet. I am just passing the word along. I have spent hours on the phone with a newly diagnosed man who is having an RC on June 6th. I told him that the prep ...

Another RC patient -Maidan on the mend !

By snettie · New reply yesterday at 6:34 pm
Journal · 9 replies
I have received a message that I was asked would I relay to you. Maidan is recovering really well following her operation on Monday god bless her, the digestive system is already up and running and she ...

Sex after RC- if under 18 please do not read

By Spitfirenb · New reply yesterday at 6:13 pm
Discussion in Life after radical cystectomy · 17 replies
I would like to find out more about sex after having an RC. I am a 42 year male 5 weeks post RC and have a Neo with nerve sparing done. Maybe at 20-30% erection and no change to % after using 100mg of ...

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About this community

The Bladder Cancer Advocacy Network Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Bladder Cancer Advocacy Network, an Inspire trusted partner.