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

Denied Blue Light Cystoscopy?

By BCAN_Larry · New reply 4:46 pm
Discussion in Taking charge: How to be a proactive patient · 22 replies
Good Day Everyone, I am taking a very informal survey among members of this community and have a question to ask you... Have you ever requested that your (or your loved one's) doctor perform a blue light ...

My Journey, May 22, 2013

By GIPE · New reply 4:31 pm
Journal · 1 reply
I have had my 4th BCG treatment on May 20th. I haven't really had any issues with it. Maybe a little tired, but that's it. I have 2 more to go before my re biopsy. I have been juicing 5/7 nights a week...carrots ...

I'm already scared

By MindiJean · New reply 4:30 pm
Discussion in Life after radical cystectomy · 12 replies
And surgery isn't even scheduled yet. I have a consultation with a hernia surgeon on July 18. Apparently I will be in the hospital "multiple nights". I hear this surgeon is amazing. Might be able to do ...

Now know what hath for me, that TURBT #3

By ReadyToBeSoAlive · New reply 4:22 pm
Journal · 6 replies
It has been just 8 months since initial dx of primary diffuse CIS of the entire bladder and trigone. it's been 3 of these TURBTs taking 30 biopsies from my bladder, and we've gone through 12 BCG treatments--it ...

Why we do this!!!

By KevinMI · New reply 4:20 pm
Journal · 2 replies
I had my RC with Neo for my T1G3 tumor in Nov. 2012 and am currently cancer free. The fear before the surgery and the recovery after the surgery were not easy. But neither of these were worse than the ...

Stage IV Metas'd and MVAC

By Marfa · New reply 3:37 pm
Discussion in Metastatic bladder cancer · 2 replies
Hi. My husband had an RC and Prostatectomy(sp?)last fall, and went for his 1st CT scan at end of Feb. The doc wanted him back in 2 mos time instead of 3 mos, as a lymph node was a "smidge" too large 1.1 ...

A NEW CURE FOR THE COMMON HEADACHE

By Katuha · New reply 3:34 pm
Journal · 4 replies
HOW THE COMMON HEADACHE is cured in other parts of the world. (Don’t try this at home without the services of a tribal witchdoctor.) https://www.facebook.com/photo.php?v=645 972798762208&set=vb.639258229433665&type ...

Candidate for Chemo??

By willsmomma · New reply 3:10 pm
Discussion in Metastatic bladder cancer · 11 replies
My father is 78 years old. Had a RC on April 23rd. Pathology report came back and determined that the lymph nodes are positive. Since we have not discussed these results with him (appt on June 4th with ...

Thank you all

By Englishwife · New reply 2:54 pm
Discussion in Living with invasive bladder cancer · 12 replies
Well I have finally plucked up the courage to post on this site, I am quite used to forum posting but usually for nicer times mostly holidays. First can I just say that my heart goes out to everybody ...

Post BCG Cystscope

By kapm · New reply 2:20 pm
Discussion in Living with non-invasive bladder cancer · 6 replies
Just a note on my path. Finished first series of BCG treatments, and finally had my cystoscope today and the news was good. Now I wait ( don't you just hate that word ) another 3 months and return for ...

Lost our battle

By jaxmad13 · New reply 2:04 pm
Discussion in Metastatic bladder cancer · 61 replies
It is with a heavy heart that I let you all know that my husband of 29 years (we were together 34 years) passed away, from this terrible disease, on May 4, 2013 at 2:15 a.m. He fought for 9 months with ...

Going for 4th TURBT

By Bnelsonr · New reply 2:01 pm
Discussion in Taking charge: How to be a proactive patient · 3 replies
I found this site a few day ago. 69 year old male. It sure is nice to read a forum that keeps a positive outlook instead of doom & gloom. My Low grade bladder cancer was found in March 2012. 1st TURBT ...

Clinical Trial to Select

By momo82 · Posted 1:41 pm
Discussion in Metastatic bladder cancer · 0 replies
Really having a hard time helping my 32 year old husband select a clinical trial. He has had a progression after Cis/Gem showing increase in a couple of his lung tumor mets. Originally his response was ...

Exciting news: New drug and clinical trial for CIS

By ReadyToBeSoAlive · New reply 1:40 pm
Discussion in Living with non-invasive bladder cancer · 3 replies
My uro only mentioned the SmartPatient site to me today.. already I see there is a new transurethral intraves. immunotherapy drug TMX-101 (Imiquimod) and clinical trial: https://www.smartpatients.com/trials/NCT ...

Side Effects – what side effects? “Take the pill.”

By Katuha · New reply 1:30 pm
Journal · 7 replies
This is a “real” list of potential actual side effects of an inexpensive little nearly-unknown drug called Gabapentin that was prescribed for me to alleviate urethral pain when I first got BC. My wife ...

Good Info on Non-Muscle Invasive

By Bine22 · New reply 1:16 pm
Journal · 9 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 ...

Meet Zach

By Katuha · New reply 12:41 pm
Journal · 9 replies
You will cry many happy tears when you meet this inspirational young man who teaches us by example how to fight terminal cancer. Make them "happy tears." Zach shows us what it means to live life with ...

Two-way neph tube? Please explain!

By robin5 · New reply 12:36 pm
Discussion in Life after radical cystectomy · 4 replies
Tom had the nephroureteroscopy yesterday at Sloan for the blockage where his ureter meets his ileal conduit. They were able to do the brush biopsy and get the tube through his kidney into his ileal conduit ...

Newby needs direction

By Dnwlkr · New reply 12:20 pm
Discussion in Newly diagnosed · 6 replies
I had a TURBT (not sure if that is what it is called)cyscoscopy in Jan 2013 and he found a very low grade tumor the size of the end of my thumb (his words). Last week he found a 4 mm growth I am waiting ...

Who is scheduled and waiting for an upcoming RC

By JD_the_strat_man · New reply 11:35 am
Discussion in Taking charge: How to be a proactive patient · 9 replies
I know there are several besides myself scheduled for an upcoming RC. I thought it may be nice to share our feelings, fears, questions or maybe we can all just freak-out together. I am scheduled for 6-5-13 ...

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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.