New guy, new story, new questions...

Thanks Wendy for all you do...
Do note, I have also sent you a private email.

My surgeon is sought out by those in this part of the state who are much wealthier than I am. I felt fortunate to have him as my doctor...due to the personal relationship between him and my MD.

That said...things can still go wrong and I have wondered exactly what took place in the OR.

As stated, my initial visit to his office was a whirlwind trip. I did not go in expecting to be told I had cancer since I am so healthy, and felt extremely well...except for the bleeding.

Right now, this morning, which is two-weeks to the day since they did the transurethral, I feel 100%. There is no visible blood in my urine, no soreness in my stomach. My only discomfort is a slight burn with urination, and a sort of sting now and then internally. True, I'm still weak from all that took place, plus the time flat on my back in bed.

The excessive bleeding did bring up questions.
My surgeon makes his hospital rounds before 6AM, my procedure was Wednesday evening...then to the recovery room where I stayed until 1PM Thursday when I finally received a room. That day is very foggy with the double dose on anesthesia and follow-up pain relievers.

Friday morning I asked him about the so-called one-and-one-half-hour procedure and the one day in and then go home... The doctor stated that after he got inside...he found I was "a mess". Thus requiring much more cutting/removal that he had anticipated.

The loss of blood and resulting weakness would require a couple of extra days in the hospital to assure my blood count was back to normal.

I then asked why...when he did the scope at his office he had told me there were "a couple of tumors", but he did tell me they were big enough that there was no doubt I needed the transurethral.

He simply replied that it, the bladder tumors, was worse than he had thought.

He wanted me to go home for two-weeks, gain my strength,
then return to have the remaining 20% removed...this time with a lazer.

Then the biopsy revealed the T2 and required total removal.

He did of course advise me to seek an additional opinion...and as stated, I go to his office tomorrow ( 7 June ) to do our Q&A thing about removing the entire bladder.

So, this is where I am asking all who are willing...
to advise me from your own experiences and knowledge,
what are the major ( and minor ) things I should discuss with him ?

It would seem, considering my physical condition situation at this moment, that I have a few weeks at least to make sure I do this properly.

"Not an easy road", as you have stated Wendy, and of course a confusing one for me at this point as I really have little to go on to know what I am really facing.

Using part of my intestine to form a 'pouch' brings up all the negative thoughts of bowel "training" I guess we could say...and the issue of control of the 'new' pouch, leaking, wet nights if not during the day, and the big issue for an old man who is still sexually active at 61...and with a prostrate that is in perfect condition... !!! What I read here and there always states the prostrate is removed with the bladder... this does cause me to wonder of course, but would suppose the doc will explain all that to me tomorrow.

But, I am open to your opinions guys...

And, yes, even with all these questions and the whole situation still being so new... I am remaining positive !

Hi, Welcome to the forum....sorry about meeting under the circumstance, though.

I saw Chris mentioned the bladder sparing protocol, known as combined modalities (of TUR+chemo+radiation). This approach is for very select cases, preferably people who have only one tumor. Same with partial cystectomy, the tumor should be on the dome of the bladder, but the recurrence rate is so high this is almost never done.

It looks like the whole wazoo needs to go, I'm sorry to say...but there is certainly life after bladder removal, I see it all the time. Not that it's an easy road, because it is not. But being in good shape will go a very long way to helping this experience be as easy as possible. I hope!

I don't like hearing about the blood loss, something went wrong there. If you are not too far away, MDAnderson is tops in the country when it comes to uro-oncology. Dr. Kamat is an advisor to WebCafe and an invaluable help to all of us and this website.

Make sure you get yourself to a good doctor for that surgery.
Take care,
Wendy

Thanks guys...
That's why I'm here,
to learn what might help me get through this easier...or easiest...
and hopefully, when my situation starts to get better I really do intend to see if I can't assist others.

I have already asked the doctor if I can perhaps visit with some younger men who are 'shocked' with the thought of having cancer. My hospital stay was way beyond the ordinary...so maybe I can at least help relieve them of their apprehension.

Short version:
I went in on 23 May being told they were going to 'scrape' the tumors out, I'd spend the night and go home. I did realize there would be follow-up scope work, etc.

Well, after the initial one-1/2-hours, they were still cutting so they say. Then to recovery/post-op, before being assigned to a room.

Excessive bleeding would not stop I am told after I reached post-op, so they then took me back into the operating room ( AFTER bringing me back around ) for another SIX HOURS. I lost four pints of blood, or at least that's what they put back in me. So, that, and the second anesthesia...really screwed me up.

I giggle now...but my scrotum was also pre-op "scrubbed" a second time to the point I lost the entire top layers of skin...like a severe 'road-rash' scrape. Ouch !

I was in a room at the hospital for five days after the surgery, and on the fifth day at home I could at last touch my buddies without grimacing... ;D

I've been home a week now, did ten push-ups this morning first time, no problem. Yesterday and today, did two-minutes on the stair stepper...don't want to overdo this guys, but, I intend to build my strength back so when I go back in...I won't be so weak. I really don't like this short-winded stuff.

BTW, first story was,
they still only removed 80% of the tumors because my bladder was in bad shape. So, I was to come home for two-weeks and then return to have the remaining 20% removed.

Then the biopsy revealed the T2 which meant complete removal.

Good news is,
Liver, kidneys, prostrate, heart, lungs, everything according to EKG, CT Scan, X-rays, blood tests, etc. all...show to be in great condition.

The bone scan is to be scheduled after the meeting with the doctor Thursday PM. Giggle here...he doesn't really know me...and I could tell by the way he talked...he is expecting to give me the big pep talk about emotions and cancer and dah, dah, dah.

Zachery-
You nailed it.
I have been shot twice (minor wounds), and cut four times ( a couple were serious), but with all six situations I took their weapon away from them and brought them in... My wife would say just about the same thing as the lady with the book... she has seen worse. Hope you guys take these comments right, sometimes this stuff sounds a bit like a bragging young boy, but it did take place. Please do not compare me to those TV show whacko's...

Rosemary, I am in Texas.

Christopher,
I will read the Mann article and much more...
just getting started here and still learning some of the terminology, etc.

Again, thanks to all.
And for those looking and not posting,
whether it is this post or others, the quicker you sign in and start talking and asking questions, the sooner you'll feel better about the big picture.

No offence to those have bigger problems than I do...
but seems to me, each of us, no matter what we have been diagnosed with...it could be so much worse.

Think lung cancer, brain tumors, etc.
Seems to me, most of us still have years ahead of us with loved ones.
We all have friends who did not come home from war...
We have friends right here at home who have already passed with too short of lives... my dad is 92, a bit weak now, and walks slow, but by golly he is still here and honery as ever. ( Pure blood Irish )

My girl says dinner is ready,
I'll check back with you in the morning...

And, THANKS AGAIN !

Sorry to hear about the diagnosis being T2 and not just superficial.. although you are right, it could be a lot worse. Just FYI - there are several people on this board that opted for a bladder sparing course of treatment with a T2 diagnosis.

The treatment can consist of either a partial cystectomy or a TURB and/or radiation/chemotherapy. I'm not sure if your particular case would warrant exploring this option... I think a fellow named Mike Mann (on this board) sucessfully treated a T2 with radiation and hasn't had a recurrance for 8 years or so.

I'm not advising this course of action, but it is something to be aware of.. maybe Wendy has more info?

Good luck

As Dr. Stein told me, and as I've repeated here several times, sometimes it's just "bad luck."

I'll be following your story closely--you definitely seem like the type who can send cancer whimpering into the corner.

Your good luck, of course, is to have a terrific wife (my good luck as well), and your other good luck is that you've found this site.

By the way, here's a terrific story in today's news:

www.boston.com/news/local/massachusetts/articles/2007/06/05/graying_duo_keep_passenger_in_check/

A 65-year-old former police commander and a retired marine captain subdued an unruly and erratic passenger on a Minneapolis-to-Boston flight. During the fracas, the retired police commander's wife kept reading her book. "Bob's been shot at. He's been stabbed. He's taken knives away. He knows how to handle those situations. I figured he would go up there and step on somebody's neck, and that would be the end of it. I knew how that situation would end. I didn't know how the book would end."

That's one of the greatest lines I've ever read.... you sound like you could be one of those guys....



Zach

Wow, D, what a story! It sounds like you were doing everything right and then the whole bottom fell out.

By the way, do you live in the States? This might be an important piece of the puzzle for us to know in order to help.......

There are lots of T2's hanging around here, so you should be able to get plenty of support.

Let us know how the consult goes with the Urologist.

Take care,
Rosemary