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Just diagnosed

3 years 2 months ago #51405 by LillianG
Well, it sounds like we have the same Ta HG diagnosis. We are two of the lucky ones who got diagnosed at the Ta (non-invasive) stage. Our odds of beating this wretched beast are very favorable.

All I can say is make sure that you like your urologist and his staff, because you will be seeing them a lot. The BCG treatments are not much fun, but they are very doable. I've had 10 treatments so far, and other than some minor discomfort for a few hours after each treatment, I can't complain. I've remained 'All Clear' since my first TURBT, which was more than a year ago, so I feel confident that the treatments are working.

It's much easier said than done, but try to relax and get back into the fun part of your life and live in the present. Try to stop worrying about the future, and take it one day at a time.

Take care of you,
LillianG

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.
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3 years 2 months ago #51401 by jroza1
One other thing... I usually ask for the lidocaine gel when they do the catheter. It doesn't really do much for the catheter, but it helps with the first void after the BCG has been inside for 2 hours. AZO is your friend. It's ok to cry when it burns and scream...Don't feel weak if you need T3 or any other pain relief. This doesn't have to be made intentionally unpleasant.
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3 years 2 months ago - 3 years 2 months ago #51400 by jroza1
It's not for everyone, but I had a few edibles when I got my diagnosis too (turns out may reduce risk...) . The catheters are not that painful and only the repetition is what sucks, but as lousy as this sounds, you start to get used to it. My doctor put it in perspective for me. He said, "Josh, there are lot of really terrible horrific cancers out there. Some have terrible consequence, painful treatment, and some where you will wish for death - this isn't one of them. There usually is little to no spread if you keep up on treatments and preventive care, like scopes. You will die one day, but it is really doubtful it's going to be from this. So - if you had to get cancer, this isn't that bad and if you had to catch it, now is the time you want to. Plan to continue along with your life and every few months for the next year and a half you will have to come back and see me or a nurse for a few minutes of unpleasantness."

I also have a neighbor that just went through Prostate cancer and 2 friends in the middle of treatment for colo-rectal. I have never been more thankful to have bladder cancer - as crazy as that sounds. In the end - little changes in our lives other than we need to be vigilant and get scoped and pay attention to our urine, again, as crazy as that sounds.
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3 years 2 months ago #51397 by Lupenbill
Thanks for the encouragement. Today was way better than yesterday got out and did some yardwork spent some time with my lovely wife in the sun. And had a few laughs and smiles. I think that has done me more good than anything else.I do know it's going to take a while for me to except the fact that I am not invincible which is how I have always lived my life. As I learn to be more comfortable with this I do know that this is not going to change my life much a few more appointments a little more discomfort and God willing that will be all.
Lupenbill
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3 years 2 months ago #51392 by Jack R
Lupenbill,

That is a great diagnosis; if it has to be cancer, you could not have asked for better. Once all this sinks in, it will start to become more comfortable. If you have a sleepless night or two in the meantime, everyone here will likely understand.

Ta - Bladder cancer that is noninvasive papillary carcinoma has the best outcomes and is easiest to treat. You will see more of your urology team than you would like, but you will want to. Your highly achievable goal now is beat the Ta and retain your bladder.

My diagnosis is similar to your with cis added, and prior kidney issues. Once I settled on a plan and a back-up plan, the road ahead became clear and acceptable.

I am going to beat the Ta-cis cancer and keep my bladder - I will go along with the treatments and maintain my life as close to normal as possible while the fight is on.
I know that the cancer will come back, I just don't know when , so I will always be ready to accept additional treatment.

I will keep informed of any changes in stage. IF the cancer begins to approach invasive, I want enough warning to remove the bladder lose the cancer while it is confined to the bladder.

Having accepted this plan of action, I can sleep at night. I don't have to worry about every little bump in the road (like my first recurrence of cancer a few months after BCG treatment) because I am focused on the safety net of bladder removal.

I have read the success stories of life after radical cystectomy by others here. Not my first choice, but I can go that route if necessary. Life has been full of changes and surprises so far - how hard can one more change be ?

I hope you find some comfort in facing the challenge that has been presented to you. For me, knowing where I am going keeps me in control and ready to face whatever happens next.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis
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3 years 2 months ago - 3 years 2 months ago #51390 by DougG
Lupenbill,

What things did you enjoy before you were diagnosed? Try to focus on those things and get back to enjoying life! That's what it is all about, right? I realize you may feel lousy right now, but find something little to enjoy -- go to a movie or out for ice cream. Get around some people who lift your spirits. Doug said to listen to some rock and roll! Hang in there. It will get better.

Anita
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