Newly diagnosed (6/19/09)

Amen George

You have come to the right place for information and inclusion in the club. There are some truly great people on this site. Some are very tehnical and understand the medical jargon very well.
Some of us are much like yourself. You and I have the same kind of story. Diagnosis; Very Scary and lots of questions....Then Surgery schedule; No time to think about it, and very little in the way of support. That is where we can help. You are fortunate to have found this site before the surgery, so you can have your questions answered.
As for the surgeons choice of not doing a neo bladder... ask him. What are the reasons for Not going for a neo. At this point you may feel sort of at the mercy of the Surgeon because you are still reeling from the news of cancer. But, now is the time to stand up for yourself and ask the simplest of questions...WHY?
You are about to embark on a long journey and I hope you have a great caregiver who can take charge... of you.. and the medical personel. Always remember that the caregiver is going through the same trauma as you, only worse..they can't always feel better as time passes. They hurt every day and every time they see you in pain. make sure you find the way to let them relieve the pressure they feel every day.
Keep us posted onyour journey, and ask, ask ask if you have questions.
George

Larry,

Sorry about your diagnosis but very glad you found us!

As has been mentioned, a second opinion and re-TURBT is very important to get from a cancer center that deals with bladder cancer on a daily basis.

The reasoning is that you want someone to do this surgery that does it very, very frequently. The more experience the doctors (and the whole surgical team) have, the better the outcomes for the patients.

I also had muscle invasive bladder cancer and had the cystoprostatectomy in October of 2008. I got the neobladder and there are pros and cons. One thing to note is that when I asked your very question back in September, the responses I got indicated that almost everyone was very happy with the diversion they got. That's good news because it does mean that more than likely, no matter which option is possible based on your circumstances, you will most likely be happy with it and be able to get back to doing everything you did prior to the surgery. The three primary options are neobladder (new bladder made from a segment of your intestine and hooked up to the original plumbing), an Indiana pouch (new bladder made from a segment of your intestine and hooked up to a stoma that is sometimes hidden in your navel or near it) that you use a catheter to drain as needed, or an ileal conduit (no new bladder, shortest surgery time, and you have a stoma that you connect the external bag to).

With either option, you do everything from sky-diving to scuba-diving and everything in between.

With regard to the prostate part of things, you also want a highly skilled surgeon for that because you will want nerve-sparing surgery. With nerve-sparing, you have a high probability of regaining normal erectile function anywhere between a few weeks but possibly as long as three years after surgery. They have options available to make things work while you are waiting for the nerves to kick back in and do things normally so it's not like you have to wait until it does normally.

Since you mentioned stromal invasion, the nerve sparing surgery may be more complex than normal so that is why you want a top bladder/prostate surgeon on your team.

Feel free to ask anything and everything that comes to your mind. You do want to move fast but local urologists usually do not do many of these surgeries in a year.

Mike

Larry...glad you found us. Are you presently having to go through the VA system? And where are you located? Can you get a second opinion outside of the VA system?

Here's an article written by one of the top uro/surgeons in the country...he also did my second TURB..Dr. Herr

www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XMT-4KS3W13-J&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_
urlVersion=0&_userid=10&md5=7d29e784561f6c0f37968d7e5cfe1b57

As you can see it takes a team of very qualified pathologists.
Many uro's don't know how to do anything but an ileal conduit not that thats a bad option..many have chosen it or because of location of tumor/tumors thats their only option. But it would be nice to have a choice and certainly a surgeon who performs this very specialized surgery all the time.
I'm sure many of the guys will pop in here soon.
Pat

Sorry to have to welcome you to the group, but now that you are here there is lots to absorb.

Oh, and you will probably find this thread getting moved to a little better spot.

I am a 64 yr old male and have had a RC w/neobladder in March /08. While every procedure has pros and cons, only a neo will let you urinate relatively normally. It does take more break in time than the other methods but the outcome is great. However, until they get in to actually go to work you will not know if they can do that. Kind of a "boots on the ground" thing.

Also one of the first things you will want to do RIGHT NOW!!!!! is to get a second opinion and exam from a major oncology center.

Take a look through some of the very recent threads here and thru the BLC info tab. These have recently been covered and I would urge you to begin absorbing them .

We have lots of experience here so don't hesitate to ask.

LeeH

Last month they took a tumor via/scope from my bladder. After (the biopsy,and ct scan)
i][b]High grade papolary urothelial carcinoma with stomal invasion and invasion of muscularis propria[/b][/i
I was told bladder and prostate must go, this was verified with an oncologist Friday.
My big question has anyone had this dilema, my urologist advises the bag instead of the Neo-Bladder (from what I have read there are pros and cons on both).
A little info on me:
56 year young Marine Vet-minimal Viet-Nam, about 7 months in Thailand @ the Rose Garden.
Married having raised 3 daughters, with 2 daughters at home, 13 and 10 years old.
Hopefully returning to my construction job.
My surgery is scheduled for July 24 and am currently on Medical leave from work. Any help Ya'll can give about this

Long Scarey Journey and Battle We Have Embarked Upon

will be greatly appreciated by me and my Family.

P.S. Thanks to Patrica for directing me to this site.