Forum

× Welcome click the New Topic button to post

How did u find out?

9 years 1 month ago #33667 by Melodie
Lena,

I know you must be anxious and frightened when there are so many "unknowns" but I agree with Mike, it's best if you can somehow calm yourself. You were smart to find this website and information is power...keep that thought in mind and it will help you with making some tough decisions.

My first real and strongest fear came when I found blood in my urine on 2/14/07; I had been having issues with frequency, urgency, and pressure for a few weeks prior. Not long afterwards I had a cysto done and when the doctor asked if I wanted to look at the monitor, I saw a red, nasty looking piece of cauliflower looking tissue where I knew my bladder was suppose to be pink...I knew it was cancer. This past July I celebrated three years of being cancer free, after doing chemo and having had my bladder removed and an Indy Pouch made. I feel very blessed and if your mother needs treatment, I wish your mom the same blessings in her futue.

You may want to check my website for info., link located below my name; I got an Indy at age 56 but there is some info. about the Ileal on there also.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

Please Log in or Create an account to join the conversation.

9 years 1 month ago #33638 by mmc
Lena
If your mom gave permission for the doc to talk to you just ask him about the redness and about the cytology. A little redness is different from CIS and could be any kind of irritation.

If you don't relax a bit your mom is going to be waiting outside ER with you having a breakdown. She probably doesn't need that right now so if not for your own sake then calm down for her sake.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

9 years 1 month ago #33637 by DougG
Lena,

The cytology takes a while to come back, so they probably didn't have those results yet. I usually don't get those results for a week. Ask your mother if she has heard back on that yet.

Doug

Anita
Forum Moderator
Caregiver

Please Log in or Create an account to join the conversation.

9 years 1 month ago #33636 by lena
thanks a lot for the reply,
they did not allow me to enter the room when they were doing cystoscopy , now my mother says the dr told her that its alittle bit red .I don't know because after that i asked the dr and he didnt mentionand he told me that he could not see anything and he is almost certain its nothing serious and he ordered a ct scan just to make sure. I am a little bit confused because he also didnot tell me the result of the cytology. I think that maybe my mother told them not to tell the truth to me. what is your opinion???

Please Log in or Create an account to join the conversation.

9 years 1 month ago #33634 by Humpy
My first indication was blood in the urine. Not a little pink, but MAJOR hemorrhage!!!!!!!
Went to local Uro.
Did TURB, didn't even think it was cancer.
5 days later,
it was cancer, and very aggressive at that.
He wanted to "try" BCG.
Sought second opinion at U of M Ann Arbor.
Was told my type of cancer wouldn't even be receptive to BCG.
Opted for RC/Neobladder.
Fast forward 1 year 3 months. Doing great, just had an operation (3rd time) for scar tissue at Neo to urethra connection. Doc was pretty confident that this one just might do the job. I hope so. Still cath every other day. He thinks I might be able to quit that in six weeks, if everything goes as planned.
This may sound stupid, but I am soooooo glad I didn't go down the BCG road. It sounds like a lot of agony, and life is no different with a Neo bladder.

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

Please Log in or Create an account to join the conversation.

9 years 1 month ago #33631 by mmc
I was having UTIs over a period of a year or so. Just took antibiotics. Finally asked my doc for a urology referral. He did a cystoscopy in the office and saw a small red area. He told me I needed to get a biopsy but I was leaving for a trip to the philippes the next day so we scheduled it for right after I got back.

He did the TURBT and it turned out to be CIS, which is an aggressive form of bladder cancer. That was followed by CT scan.

Started BCG but reacted bad so had to switch to mitomycin instillations. Went almost two years before I started having blood clots in my urine while on a business trip. Went home early and he saw me the next day. He didn't see anything by he took urine samples as well ( from kidneys directly and from bladder).

Cytology came back positive and he thought it had gone to both kidneys.

I then went to univ of Colorado and then to MD Anderson for a second and third opinion. Got another cystoscopy at unv of CO and they saw it and biopsied it and it was muscle invasive.
Got my bladder out and replaced with a neobladder and have been cancer free for a year and nine months now.

Your mom's doctor is doing the right things. Nothing seen in cysto then run some more tests to see what may be the problem.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 1574 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: LouB
Yesterday Total Opened: 0 Yesterday Total Answered: 0
Total Posts: 52795 Total Subjects: 6870 Total Users: 8448
Powered by Kunena Forum