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tinytown7 a question of diversions
I am posting this here as it was posted in the blog area and will not get the attention it deserves.
New to this site 49 year old male from michigan looking for insight on what sugery to choose and what prblems are associated with them
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 Society10 Replies-
Hi, tinytown!
I am thinking about you. I am 4 weeks ahead of you; just had my RC six weeks ago. I, too, have kept a pretty positive attitude and have a lot of support from family and friends. I am a female with the external bag as my diversion, though. Anyway, I was glad to see you are a patient person as I feel that is an important characteristic as you heal over the next several weeks. I hope you aren’t struggling too much with the transition to solid foods.
Best of luck to you and keep in touch with this forum. No matter how much support you hae, it is the people on this board that truly understand what you are going through.
Diagnosed Stage 3 March 09.
RC August 09 at MD Anderson, TX
Ileal Conduit (Bag Lady)
Age 52
There is a ways to go before you get back to normal or what will be a new normal with that neo.
I am about 18 months into my neo now and still improving. Remember, if something doesn’t seem right or it seems to take too long or some other symptom that is a problem for you, let us know.
Chances are one or all of us have had it
Lee H
yea thanks for your response i do beleive ill be ok through all this i’ve had a pretty positive attitude so far and a lot of support from family and friends and i am pretty patient so we’ll be ok if theres any thing i can think of to help others going through the same thing i will post it again thank every one for listening and being supportive see ya all soon
Yay for Tinytown!!!! I hope things go well and that you will share some of your experiences and you go through the learning process of dealing with and training the neobladder.
Also, post all the questions you can think of. A lot of us here have been through what you are going through and can share our experiences. They aren’t all the same so you do get some diversity in that there are different things that are pretty much “normal”.
Keep doing your kegels regularly as that will help with the continence thing. If being wet at night ticks you off then consider condom catheters occasionally. Down side of them is that it’s so nice you may put off night time continence training indefinately. That can be a real down side but may every now and then wouldn’t be so bad.
It does take a while to get control during the day so try not to get too frustrated (although it is normal be frustrated).
Best of luck on your recovery. Glad the surgery went well.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Just to let you know i heard from tinytown7 and he is now 14 days out from a successful neobladder surgery at the U. of Chicago.
Continued success…you made a good decision.
Pat
Hello tinytown, Glad you are with us, too bad for you. We are truly a Weird bunch. Soon, you will be too. You will love our warped sense of the world.
I cannot express the need for a second opinion by a urologist that KNOWS Bladder cancer. Run…Do NOT walk.. to the nearist urology oncology bladder specialist. I too, come from a very small town, and thought I was lost in a sea of small hospitalitis.
What you need is an ASSEMBLY LINE WORKER to take care of you. Your doctor should be a person who can do this job in his sleep he has done it so many times! My surgeon did not give me a choice of diversions. He said he would choose the best one for my situation when he was in doing his Plumbing work.
I have a neo bladder; It has it’s own issues, as they all do. But I have easily learned to live with them. And work on them. I am soooo happy to be here writing to you either way they fixed my pipes. You need a great surgeon and you deserve the best. I thought my surgeon in Albany N.Y. was unfamilier with such specialties, but he informed me that he was trained for years at M D Anderson. End of search. He’s done this surgery at least 500 times. He stopped counting. You need and deserve a surgeon like this.
Take it from me. If a used car (and new) salesman got the best, so can you! Don’t let them treat you like a number either. Let them know who you are and let them know you have a LOT to live for! They want to do their best when they know you have a zest for life. I saw my surgeons notes, and he made mention of my “Refuse To Lose Attitude” I firmly believe he took that extra step because I demanded so much from him.
Please follow my Father in Laws rules of surgery ( he lives in a tiny town in Mich; Linden)
1) Get a GREAT Positive ATTITUDE
2) Get a great Surgeon
3) Get a Great Anesthesialogist
4) Get a Great Nursing and Post op Care
5) Get Your family Involved.. Don’t push them away. They need you as much you need them! Don’t push them away! Bring them in big time!6) Get to know this site and these people! They have been there and they do not Judge. They help, and they are there for you!
Sorry for the Crushing word count! :ohmy: :ohmy: :ohmy:
George Kline
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]
Tinytown7
Welcome! Sorry you have to battle cancer but if so, you have come to a forum which has lots of info., encouragement, support and best wishes to help you negotiate your way through the cancer experience.
I am 58 and got an Indiana Pouch two years ago…fortunate as I had an excellent medical team and this diversion has been great for me. There aren’t many guys who choose the Indy but those who have, seemed to be happy with it. You might want to check out my website that gives details about my experience with the Indy Pouch, and also I have a drop down box that offers information on Rick’s experience with the bag. He too, is doing very well with his diversion. Unfortunately, I don’t have any info. on the neo.
Anyway, you just have to go to my signature box on lower left to find the link. I hope you find some of the info. informative and encouraging.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
TinyTown7,
Glad you found us. Feel free to ask more questions directly.
My invasive bladder cancer was diagnosed in Sept 08 and my RC and neobladder was Oct 9th, 2008. Since I previously had non-invasive and knew there was a chance it could come back, I spent A LOT of time researching different options.
My first choice was neobladder, second choice Indiana pouch, and last choice ileal conduit.
I wanted as close to normal as possible. You never know for sure what you will get until the surgery starts and they see what they have to work with.
I can tell you that I asked people on this forum and for the most part, people are happy with whatever diversion they got. I think part of that is everyone thinks it will be worse than it really is.
One thing is very important about this surgery. I would venture to say it is the MOST important thing about this surgery. Get it done at a highly reputed “bladder cancer” center. You don’t want a local urologist or general cancer center. You want a surgeon that does this day in and day out. The experience and skill of the surgeon is critical to fewer complications, higher success rates, and lower recurrences. Sounds pretty important, doesn’t it?
Be careful of strip mall cancer centers or generalists. It’s not just the surgeon, it is also the nursing care post-op so you want a whole team that deals with RC and various diversionary techniques on a daily basis. there is a reason that people from all over the world go to these top centers.
I wish you the best of luck in your surgery and please do keep us informed of your progress and ask any follow up questions you may have.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hello tinytown7,
Welcome to the forum and sorry to read of your diagnosis.
I was diagnosed with invasive bladder cancer in July 2007 and my general urologist in my local small town hospital recommended RC.
After researching on many web sites it became obvious that for such radical surgery a second opinion was necessary.
I found a Urology specialist in another city a few hours away from were I live in Holland and set up an appointment within a week. The diagnosis was the same which I had expected although I felt secure in the fact that this hospital and Urology team performed far more of these surgeries.
Survival outcomes do vary because of the skill factors of the hospital surgeons and after care nursing.
My advice to you would be to seek out a second opinion with a hospital that specializes in bladder cancer. Pat has recommended specialists in your area; please get on the phone today and make an appointment.
I can not express enough that choosing a specialist will improve your survival chances. My original urologist was surprised to find out later that my surgeon had removed 29 lymph nodes as he only removed up to an average of ten. Well I am so please he did as 17 of them were positive. So I would still have positive nodes inside of me if I had remained with my original Urologist.
Diversion option choosing I guess is the hardest decision before surgery because firstly you have a choice.
How do you choose the correct one for you?
For me it was a case of replacing the one I had for the nearest duplicate and I chose the neo bladder.
There is a wealth of information here from forum members on diversion options and positive and negatives of them all.
Tinytown7 you have a lot of decisions to make, I wish you well in the coming weeks. Have a look around the site and read the experiences from others on the forum section and please feel free to ask any questions and post in the invasive section for quick replies.
Kind Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumHi Tinytown….glad you came over to the forum. Many guys will step in here to discuss diversions. But l sound like a broken record i know but you really need a qualified second opinion….Cancer Centers of America do not have lots of experience with bladder cancer and the surgery involved. You’re in Michigan and there is an excellent physician who works with bladder cancer..Dr. Jason Gee
http://www.urology.wisc.edu/faculty/gee.shtmlThe Cleveland Clinic another resource which sits on the border of Mich and is tops in urology….Dr. Stephen Campbell
http://my.clevelandclinic.org/staff_directory/7/Staff_6257.aspx
or Dr. Stephenson
http://my.clevelandclinic.org/staff_directory/7/Staff_6758.aspx
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