Newly diagnosed. Overwhelmed with information, terms, and lingo.

2 months 1 week ago - 2 months 1 week ago #62136 by amram3
Thanks, for the link about urinary diversion.

I read the report and all the advantages and disadvantages of each type of diversion operation.  But I would really like to hear some 'real life' experiences of those who had to make that choice, why they made the choice they did, and if they now feel they made the correct choice or not. 

Assuming the dr. says I can choose which diversion I would like to go with (Ileal, Indiana Pouch, Neobladder) , I want to have as much information as possible before choosing.

Thanks in advance for sharing!

Ken
T2 N0
TURBT 03/24
Invasive high-grade papillary urothelial carcinoma
Abdomen/Pelvis CT Scan 4/24: No lymphadenopathy by size criteria. No distant metastatic in the abdomen and pelvis disease identified

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2 months 1 week ago - 2 months 1 week ago #62132 by Alan
Welcome amran3,

Looking at your post it looks like your URO is taking all the steps and doing all of the right tests to diagnose things. One thing I have learned is to wait until all of the data is in. Especially on a biopsy, although it sounds pretty certain it is bladder cancer. If your URO is stacked up timewise perhaps you can ask to put you on a wait list to take a cancellation, as I too would want the TURB to be done quickly. Also, if you ever have any doubts, a second opinion is often done adding fresh eyes and more times than not, it corroborates the initial DX.

Scared? We all were. Remember that this is a cancer that is beatable and treatable. Go ahead and read up on bladder cancer (including stages and bladder 101) at the top of the forum.  Mentally, it sounds like the URO is prepping you for the possibility on a cystectomy. I am linking a site from the Cleveland Clinic so you can at least understand what that can include:  Urinary Diversion: What Is It, Types & Surgery Options (clevelandclinic.org)  .  There is time to worry about that later. Let's see what the biopsy says. If it comes to that, there are many that have posted or monitored this board and doing well.

Ask away as you go. 

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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2 months 1 week ago #62131 by amram3
Several weeks ago, seemingly out of the blue, I saw that my urine was light pink.  Later that same day, my urine no longer pink, but dark red, and I passed a large blood clot!  This totally scared the heck out of me!  No idea what was going on, and never had any issue like this before.

Got together with my dr. on a telehealth call the next day, who scheduled a CT scan.   

The 2nd day after the initial episode, there was no longer any discoloration in my urine that I could see.  

CT scan confirmed a mass on my bladder: "Bladder is not well distended, but there is abnormal thickening of the anterior wall with an irregular appearing mass extending into the bladder lumen. This mass is difficult to measure given the irregular margins, but measures approximately 4.3 x 6.2 x 2.9 cm."

Then to the urologist for a cystoscopy a week later: "Mucosal abnormalities: 5cm posterior bladder mass - multinodular and broad based with surrounding CIS. Based on the size there there is concern for muscle invasion which may require cystectomy."

So she said the next step is a TURBT, which is scheduled for March 20th (why does it take so long??).

That's all the information I have right now.  Skimming through some of the posts here, frankly, is scaring the heck out of me.  I'm a small business owner, I've been pretty healthy all my life (I'm 63), never been in the hospital for anything serious.  And now it looks like my life is going to drastically change very soon.  I just really don't know what to expect.  And hoping this doesn't somehow kill me.  I've got a lot of stuff left to do.  

Ken
T2 N0
TURBT 03/24
Invasive high-grade papillary urothelial carcinoma
Abdomen/Pelvis CT Scan 4/24: No lymphadenopathy by size criteria. No distant metastatic in the abdomen and pelvis disease identified

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