I had a similar diagnosis in June 2010. T1 high grade. Been through initial rounds of 6 BCG treatments, then the cysto which was negative. Started next round of 3 treatments yesterday. My doc who is one of the top cancer uro's in the US - according to people here, has a plan: if even a scintilla of a tumor re-occurs in the T1, the bladder goes. He is monitoring me closely. I have to have faith in his judgement and considerable experience. He seems optimistic about this course of action. That being said, it's scary. What have you decided to do? Have any of your heath providers offered suggestions about monitoring your other organs?
Hi Lori, I am new to blogging and posting. In fact this is the first time I am answering a question. My Mom has bladder cancer. She was first diagnosed seven years ago. Her bladder cancer was found by accident during her routine physical exam. Red Blood Cells were found in her urine, she had no symptoms. A tumor was found in her bladder and removed by the Urologist. She had local treatments to the bladder. She goes to the Urologist and has her bladder checked once a year and for seven years has had no problems until a couple of months ago. She started having terrible vaginal and rectal burning. Her first call was to the Urologist who ordered a Urinalysis, it came back negative. Then she saw her regular physician who referred her to the GYN who found nothing and referred her to a Proctologist who found nothing. No reason for the burning. Mom NEVER complains and knew something wasn't right. So even though she wasn't scheduled for her yearly Urology visit for two more months she called and made an appt for ASAP. I think even the Urologist was surprised to find a growth in her bladder after being clear for seven years. She is scheduled to have her bladder removed Aug 30th. So, when you say your Urologist is taking care of your bladder....well, I say you can't count on even that! And the Urologist doesn't feel that the vaginal and rectal burning are related. But says we need to take care of what we do know, and that is that the bladder needs to be removed. Thank God the CT Scan, bone scan and chest x ray are all negative. Good luck!
Welcome--I am so glad you found us. I am also fairly new to BC having been dx in January of this year. I have had three TURBs and one six week round of BCG, which did not work for me. I am meeting with the surgeon today to discuss removing my bladder.
Your questions are good and I will be interested in the answers. There are many people here that have been on their BC journey that will share their knowledge and experiences with you. I would be a basket case if it were not for this website. Someone said, your web friends----is like having a whole waiting room of friends cheering you on and pulling for you.
Hi Lori, I hope you have gone, or will go for a second opinion at a cancer center.
Please do not put your life in the hands of your local Urologist.
I was T1G3 as well. My local Uro wanted to try BCG.
I went to UM Ann Arbor for a second opinion. They said BCG wasn't an option.
RC was the only way they could guarantee life. G3 is nothing to mess with.
Your need to address this while it is still T1.
RC is not the end of the world. I am almost a year and a half post RC, and life is good.
Others may dispute me on this, but I will believe, until proven otherwise, that the cancer was removed with my bladder.
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
Hello. I am new to this site and to bladder cancer. Was dx. on 2/18/10 with T1, High Grade. I had TURBT then again 2 weeks later as pathologist thought it may be muscle invasive which it was not (Thank God). I start BCG on 4/14.
My main area of concern is that High Grade cancer has a 50% chance of reoccurance in the bladder or in another organ. My urologist will be watching my bladder but WHO WILL LOOK OUT FOR MY OTHER ORGANS? What do you do to ascertain that the other organs are not affected? I need to know that I am doing all that I can to protect all parts of my body. Please help.
On another note, I am so happy that there are finally people I can talk to. The lack of awareness for bladder cancer is deplorable. I will do my part to make changes and have an easier journey for others seeking education, treatment and companionship.