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Newly diagnosed. Very scared! I have a Turbt scheduled for Monday 6/5

1 year 6 months ago #53546 by Kaia
My doctor had planned to do the chemo wash during my blue light cystoscopy but he could not because once he got in there because the cancer was too deep. He explained that when they cut so deep, the chemo can seep out of the bladder into the rest of the body so we need to wait tolet the bladder heal first. I go back to the urologist tomorrow to have the stent removed and to get the next plan of action,

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1 year 6 months ago #53518 by DougG
Hang in there, John! The waiting IS the worst. Doug was 44 diagnosed and is now 60. Best wishes to you.

Anita
Forum Moderator
Caregiver

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1 year 6 months ago #53491 by seattlejohn
Thank you Jack for all the info! The waiting is really a difficult thing to endure but I've read so many strong stories on here already.

John

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1 year 6 months ago #53490 by Jack R
John,

It seems that you, like many (most?) of us, are given very little information when the time the doctor first says "Looks like you have bladder cancer". Truly, the doctor won't know much for sure until the pathology report and other test reports are in. But, as patients, we need to know more - otherwise we can worry ourselves sick if sent home with the word "cancer" and nothing more..

Below is a National Cancer Institute website that covers the full range of bladder cancers and treatment choices. Calling the tumor "cauliflower" is a good thing - it suggest a good chance that you have a low grade of cancer and that there are good treatment options. That website may raise questions for you to ask the doctor about your care, or help you understand what the doc says to you.

Too many of us are simply told "you have cancer" and we are left to think the worst. Think positive - you have received good advice so far, and will have the solid answers you need soon. Feel free to post any questions to the forum.

https://www.cancer.gov/types/bladder

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 T0

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1 year 6 months ago #53489 by seattlejohn
Thank you so much Cynthia. I am of course very afraid but I've been reading all the support on this site and I am very glad I found this forum to reach out to. I will definitely keep everyone updated.

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1 year 6 months ago #53488 by Cynthia
Take a big breath. BCG is the gold standard for high grade or frequently reoccurring bladder cancer you are correct about that. But it is only used when the bladder is fully healed never right after TURBT. Mitrocin is used right after a TURBT in order to make sure any cells disturbed do not reseed, two different things two different uses. You will not know if you need further treatment until your pathology comes back.
It sounds like you are right on track to getting answers. Know we are here for you as you go forward.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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