Newly diagnosed, T1 mixed grade

8 years 3 months ago - 8 years 3 months ago #50199 by Alan
Replied by Alan on topic Newly diagnosed, T1 mixed grade
Sue,

You have a URO doing the "right" things. I remember asking my URO about the pathology. He personally read it (I have quite a doc-the BEST-he even read the CT Scan also as a backup where the radiologist didn't see the tumor). He said it might have been a grade 2 in the past but, took no chances. Anyway, a second TURB is often done. My mind was mush for a short time. Everyone deals with this in their own way so where I come from isn't necessarily the right or only way. I concluded as Catherine says it is one day at a time. Also, I simply decided what will be, will be(part of that is my faith but that is another subject).

Anyway, I am now 7.5 years out. Does it ever completely leave my mind? No. However, I try to live one day at a time and certainly enjoy each day MORE. You will put this behind you and be richer for it!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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8 years 3 months ago #50198 by GKLINE
Replied by GKLINE on topic Newly diagnosed, T1 mixed grade
Sue
You won't forget! It stays with you. But in a very different way.
Right now it is a Black cloud. In the years to come, it will be a victory over a bad enemy.
It has been seven years for me, but I come here just to check on people just like you. I was hit be the words "you have cancer" and it changed my life. Sometimes the fight was a source of inspiration and there were positives that came from this negative experience. I went through the full experience of diagnosis, TURB (twice) and finally Bladder Removal and recovery, without having this site to lean on. But the people here made me realize that life is still going on after bc. Yours will too.
And someday you will begin to forget about the Black cloud and the fear. But you will have changed for it.

And maybe you will come back and help someone who has that black cloud over them.
I have no idea what keeps me coming back here. BC is way in the rear view mirror and my life is certainly crazy busy..... But the people who respond here are wonderful. They are very human and they actually care. Imagine that!

Here's to hoping that that black cloud becomes a memory


George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 3 months ago #50197 by Smayco
Replied by Smayco on topic Newly diagnosed, T1 mixed grade
Catherine, you hit the nail on the head.....every day I wake up with a "black cloud" of Cancer hanging over me. I walk around all day thinking, "OMG, I have cancer. That happens to other people!" It's only been 3 very, very long weeks since I learned the news, so I'm hoping and praying that, like you, one day I may forget about it....

~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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8 years 3 months ago #50193 by CatherineH
Replied by CatherineH on topic Newly diagnosed, T1 mixed grade
Good morning, Sue... Yes, I have been cancer free since my surgery in February 2010. My cancer was not the same type as yours, but the protocol of surveillance is very much the same with diligent monitoring. As Diane said, the approaching date of our checkups brings back a bad case of the nerves but there are many days I forget bc... and it took quite a while for that to happen.

You are very astute to realize that many who become cancer free after various treatments do not stay on the forum. Most who come here are seeking information and support, especially in the beginning and over the course of the treatment. We are fine with that... get out there and get back into your life!

I keep coming back because I remember so vividly how lost I felt after diagnosis. I had never even had a UTI or thought about a urologist. I was viewed as the "healthy" one of my 5 other siblings. Every day my very first thought upon waking was a black cloud with the word "cancer" written on it. I didn't know anyone with bc and my family just wanted to think my surgery had cured me forever, but the more I read about bc, the scarier it sounded. All the stats on my tumor type were dismal.

Finally one day 8 months after my partial cystectomy, I found this forum while doing my daily internet searching for information on bc. I can without hesitation say the people here rescued me from a very dark place. So that's why I hang out here, to maybe be part of that lifeline for others. I've had to take a few breaks from the forum because sometimes I get overwhelmed (anxiety issues), but I try to hang in there. I am very thankful for the wonderful friends I have met here and the support I've received these past years.

You are now part of our family here... for as long as you choose to stay.

Best wishes... Catherine

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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8 years 3 months ago #50192 by GKLINE
Replied by GKLINE on topic Newly diagnosed, T1 mixed grade
Hello
I remember when I got the news........ I FREAKIN Freaked out!
I was all set to start makin plans for the end.
BUT I didn't!
I wanted to live............ And so did my Dr and my wife.
Even though I skipped the BCG treatment and went directly to RC(bladder removal)
I found this site to sound off.... And I found some really good listeners, and smartasses too.. I loved them all.
So here we are. Just like you. We are just on the other side of cancer.
And soon you will be too! I just have that feeling, you know? Please use this site to let it out and we will give you all the support and help we can.
We will also be glad to be a smart ass too (well, not all of us.... just me)

Best of luck! And Merry Christmas. Happy Holidays!

This is the season for Survivors

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 3 months ago #50189 by Flamenco.
Replied by Flamenco. on topic Newly diagnosed, T1 mixed grade
Hi, I had a recurrence in 2012 , this time there was evidence of CIS, so following a TURB I had treatment with BCG, and have not had any recurrences since then.
Diane

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