Just Diagnosed

4 years 5 months ago #52436 by bacibear
Just Diagnosed was created by bacibear
I am a 64 year old male, have never smoked, and in otherwise good health. I had not spent overnight in a hospital since third grade...until last week.
I have been urinating blood for about a year and it got to the point where it was the color of dark red wine. Upon my insistence, I was referred to a urologist. He performed a cystoscopy, told me there was a bloody cyst in my bladder and scheduled to see me in three months. Three months later, because my urine had not changed color, he scheduled me to have the cyst removed in as an out patient. They diagnosed me with a "Invasive high grade papillary urothelel carcinoma, with muscularis invasion identified". The urologist treatment at UCLA, where the bladder will be removed laparoscopicly and a section of my bowels will be used to make a bladder. I just got approval for a consult with the surgeon. Everything else lay ahead.

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4 years 5 months ago #52437 by sara.anne
Replied by sara.anne on topic Just Diagnosed
So sorry to see you here!

Stories such as yours make me so angry. Yes, there are MANY possible causes for urinary blood, but one of them is bladder cancer!! It is often difficult to find the cause, but that doesn't mean that doctors shouldn't try. It probably would not have made a difference, but one wonders what the result might have been had you been referred to a urologist when the bleeding first appeared. (My father had blood in his urine ONCE. Turned out to be kidney cancer...thank goodness the doctor sent him to a specialist right away.)

You will be in good hands at UCLA....a university medical center is the place to be. I assume from your description that you will be having a neobladder?

Here is a very good discussion of the main types of diversions currently used that you may want to read so that you can formulate questions for the surgeon:

my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

Will you be having chemo prior to the surgery? After the surgery?
These are other questions you might want to ask.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 5 months ago #52438 by bacibear
Replied by bacibear on topic Just Diagnosed
Thanks for your advice. I will lookup the questions to ask on the link you supplied. I do not know if I will get chemo before the operation but I will bring up the topic with my Urologist. One distressing piece of news I received yesterday is that I have to wait until January 8th. just to get the initial one hour consult with the surgeon. I want this procedure done before it spreads to my Ureters.

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4 years 5 months ago #52441 by sara.anne
Replied by sara.anne on topic Just Diagnosed
While you really are anxious, a few weeks won't make much of a difference. I, too, was told right before the holidays that we needed to "do a scope." Unfortunately people are all trying to get anything done they can before the end of the year and they start a new insurance deductible, so the docs really get booked up.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 years 5 months ago #52443 by GKLINE
Replied by GKLINE on topic Just Diagnosed
A YEAR ? REALLY ?

Thank God you were vigilent about getting something done..... Or you wouldnt be writing this post.

So you are going to get a neo bladder...... I have one. It has been good to me even with it's quirks. I hope you know that you will continue to lead a normal life after recovery. The operation is Major surgery and the recovery is lengthy and you must be careful of infection. But you will be able to lead an active life afterward.

I was 53 when I was diagnosed. Non Smoker( aside from the celebratory cigar) and had never seen the inside of a hospital room (but a well known emergency room attender)
and always active. And then BAM! blood in my urine and an astute Dr had me at a urologist in 2 days for a scope.

I'm not a Dr but I also get mad when I hear that you spent a YEAR with that much blood coming out. Even I would have had someone take a look and check it out.

Sheesh

Glad you are here

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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4 years 5 months ago - 4 years 5 months ago #52447 by Alan
Replied by Alan on topic Just Diagnosed
Welcome. Enclosed is a file with questions to ask, at the risk of too many questions and confusion. Also, some are too involved and not pertinent as you are further down the road in your journey. It can augment or add a few things you may not think of. George is a wealth of information also!

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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