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Newly diagnosed, T1 mixed grade

4 years 6 months ago #50187 by Smayco
Catherine--thank you for your words of encouragement. I take it that you've been cancer free since 2010?

Diane--thank you as well. I take it yours never came back? If it did, did it ever progress?

There's another Forum and it seems like everyone on there has had progression. However, I'm thinking that many of those who don't recur or progress, and are actually cured after BCG, leave the board at some point and "forget" all about BC.

Diagnosed 12/1/15
First TURBT 12/8/15
T1, "predominantly low grade, some high grade areas"
Second TURBT 12/29/15
BCG Jan-Mar 2016
4/25/16--All Clear!
Next cysto 7/25/16

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4 years 6 months ago #50186 by Flamenco.
Hi Sue, I was diagnosed with a 3.5cm T1 high grade in 2006 and am still here and clear at the moment.I am looking forward to Christmas, which is something I never imagined I would be doing nine years down the line after diagnosis.As time goes by the ability to accept and cope with things becomes part of life, but Catherine is spot on with her advice to focus on living each day- my motto is "make every day count".There are still times when the C word creeps in to your mind , especially when it is getting close to check up time, but it becomes easier as time goes on. In the early days I found going to the gym helped- I felt I was doing something to help my body kick the bc.And coming on to this site definitely helps - not just for the information , but for the great support from others who have been in the same boat.
Diane

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4 years 6 months ago - 4 years 6 months ago #50184 by CatherineH
Hello Sue... Welcome to our forum. It's always a huge blow to hear that diagnosis for the first time. It does take some time to come to terms with it and the changes it brings into your life. The better side of your situation is that it is mostly T1, but any hint of high grade needs to be addressed which your uro is doing.

We have several members here who have been through treatment for high-grade diagnoses. I'm sure you will hear from some of them soon. As you said, you already know that it can come back, and that it could even mean losing your bladder at some point in the future. If possible, don't let your mind take you any further than either of those outcomes. Bladder cancer is very treatable and your uro is on target with doing a 2nd TURBT followed by the BCG.

It is a learned skill, but taking things one day, one week, or even one month at a time is helpful. I was the same way in the beginning with jumping to the worst possible scenario. That was almost six years ago, but the folks here have helped me stay focused on living each day, and NOT to let bc take my mind hostage. It takes a while to adjust to that, but you will get there. Hopefully we can help along the way.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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4 years 6 months ago #50179 by Smayco
Hello all, I'm new here; this is my first post.

I went to see my PCP in November only because I kept seeing foam in my urine. He sent me for a kidney ultrasound and they found a 4cm bladder tumor. I was diagnosed with BC on 12/15; it turned out to be T1, "mostly low grade, some high grade areas".

After all the reading, worrying, and thinking I've been doing these last few weeks, I think I've come to terms with a) having cancer, b) possibly having it come back, and even c) having it progress to where I need a new bladder. However, I'm freaking out over the possibility that it could become even worse than that.

My Uro is treating this as though it were high grade, so with a 2nd TURBT and a course of BCG, my understanding is that my chances of survival are quite good, but I'm still very worried. Any stories of encouragement would be greatly appreciated!

~Sue

Diagnosed 12/1/15
First TURBT 12/8/15
T1, "predominantly low grade, some high grade areas"
Second TURBT 12/29/15
BCG Jan-Mar 2016
4/25/16--All Clear!
Next cysto 7/25/16

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