Taking charge: How to be a proactive patient

Tips and suggestions for dealing with medical professionals and managing your illness and overall health.


Why no hematuria when cancer reappears.

  • By joyus · New reply December 8, 2013
  • 4 replies
  • maybe i am wrong, but why is there almost always symptoms when BC is first diagnosed. Blood, urinary problems etc, yet when the tumor returns, there are almost never any symptoms. thanks ...

Misplaced Information

  • By joybob1 · New reply December 7, 2013
  • 5 replies
  • I saw posted about some type of garment you can wear while swimming and I lost the address. My husband really likes to swim and as I remember there was a company who makes something to go around your ...

Access to Blue Light Cystoscopy

  • By BCAN_Staff · New reply December 7, 2013
  • 7 replies
  • Over the past few days, you may have heard about the issue regarding reimbursement of blue light cystoscopy. As all of you know, there are very few treatments and innovations for bladder cancer. It is ...

Ladies with IP

  • By Mema12 · New reply December 7, 2013
  • 4 replies
  • Question for the ladies with Indiana Pouch. Are we able to wear Shapewear briefs ...


  • By terragni · New reply December 6, 2013
  • 7 replies
  • well guys going down to mass general today-will see the stoma nurse a 2 and I guess begin the dietary regimen that they prescribe-a little nervous as to be expected-seems more difficult on Rosie, been ...

bladder preservation therapy

  • By mik_ey · New reply December 6, 2013
  • 6 replies
  • Has anybody here had bladder preservation therapy? Just want some feedback as to how it works, what are the side affects, and how it went for you individually ...

Need immediate help!!!

  • By Reallystillalive · New reply December 5, 2013
  • 7 replies
  • http://www.savebladdercancertreatment.co m/ Go to this link to contact your representatives! Beginning Jan. 2014 they are combining payment for the Cysview and blue light cystoscopy into one payment which ...

Concerning Ketogenic Diets

  • By jimmy1936 · New reply December 5, 2013
  • 2 replies
  • At the time I experienced gross hematuria and was diagnosed with T1G3 Bladder Cancer with one 3 cm tumor I had been on a Ketogenic diet for 8 weeks and had lost 30 lbs. I was on a medically supervised ...

1st Cysto post BCG/Celebrex/Curcumin 9/20

  • By Dnwlkr · New reply December 3, 2013
  • 27 replies
  • On Friday, 9/20, I will have my 1st Cysto after 6 weeks of BCG and taking Celebrex and Curcumin concurrently as well as riding my bike for 20 minutes a day for the last few months. Also added some fruits ...

recovery room after cistectomy/prostomy

  • By amerdude · New reply December 2, 2013
  • 10 replies
  • one day left. how much pain when you wake up. anyone ...

Evidence Based Prevention

  • By Robpele · Posted December 1, 2013
  • 0 replies
  • For most of us, I think, no matter what the stage or grade of our cancer preventing recurrance is our main concern. It is also possibly the thing we have the most control over, if we knew what would help ...

Just a question on BCG treatments.

  • By rockyroad12 · New reply November 27, 2013
  • 4 replies
  • I am sure this has been posted before, but I was wondering the protocol for bcg treatments and cysto,s This is my story. I had 2 ta tumor found, 1 high grade, one was nothing. had it removed, mytomycin ...

Looking to Start a Local Group in Israel

  • By gostrovitz · New reply November 27, 2013
  • 8 replies
  • Shalom, I live in Jerusalem and I would like to contact other members of the network who live in Israel. Perhaps we can get together. We probably share some of the same doctors and hospitals and as we ...


  • By jameses · New reply November 26, 2013
  • 12 replies
  • How common is it for the urologist to 'nick' the bladder when performing a cystoscopy? Has anyone knowledge of this happening? If so what is the prognosis for a full recovery ...

protective Stoma Guard

  • By 2putt · New reply November 26, 2013
  • 13 replies
  • Belt line is directly over my Stoma is there any device made to protect the Stoma ...

Everything you always wanted to know about chemo-Questions for oncologist?

  • By robin5 · New reply November 25, 2013
  • 12 replies
  • We meet with an oncologist at Sloan Monday afternoon for the first time. This is to find out about Tom's upcoming chemo (gem/cis) prior to his kidney/ureter removal. This is new for us.- we've never met ...


  • By bceagle57 · New reply November 23, 2013
  • 2 replies
  • After my successful second BCG treatment the stage 1 cancer was clear. I get my next check up in early January. However I picked up a bladder area infection that antibiotics haven't been able to cure ...

When the cancer cell is first 'born'...

  • By got_shirts · New reply November 22, 2013
  • 15 replies
  • for what it's worth, and i don't know if this is TRUE or NOT, let me tell you what one of the urology surgeons said to me regarding the 'start' of each bladder cancer diagnosis. when i started to bring ...

Home from hospital - kidney draining like crazy

  • By jd-the-strat-man · New reply November 22, 2013
  • 4 replies
  • I am home, stents in both kidneys and they are producing urine like crazy. I will have to have the longer stents put in soon, my doc doesn't want to wait too long in case these could come out. I'm on ...

One Kidney and taking supplements??

  • By avalan · New reply November 21, 2013
  • 12 replies
  • Does anyone know about taking supplements/vitamins when they only have one kidney? Also how often do you get a blood test done to check remaining kidney? I was wondering if you can take too much Vit C ...

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