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Newly diagnosed today
Hi Don’t know if anyone is online right now and not sure how to use this, but I’m looking for some feedback on bladder cancer. I had my TURBST on thursday and just today my urologist said it was invasive into the muscle and that he suggest removing and reconstruction of the bladder. Hit me like a ton of bricks. I’ve made appt for another opinion in Columbia Pres Hsp in NYC and have an appt with an onoclogist this week. Any thoughts, ideas, suggestions would really be welcomed and hope I can chat with someone who might be going through this also. Thanks….Sharon
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7 Replies
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Sharon
A lot of us here have been through this same diagnosis. It is a HUGE wall of emotions. But like many on this site, I had the same diagnosis and I am still here and doing fine. “Just as you will be.”You are so welcome here. Thanks for coming to this site… BEFORE you went through all of the steps to recovery.
There is a protocol anda step program to recovery. Mike made a flow chart of Bladder cancer steps a few years ago. I hope they find a permanant place for it on this site. It really makes sense of the steps to recovery.Good luck and we are here if you need us.
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]
Sharon, It seemed to me that medical things are complicated and difficult to understand. I took notes. This slows the doc down and it gave me stuff to surf on the internet. Then when your notes and internet surfing don’t seem clear, we are here. Lean on us. That’s what we are here for.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
None of us ever forget the hurricane of emotions that hit us when we are told the words you heard today. I heard them August 6th 2004 and I am still here to talk about it and live a pretty good life if I have to say so myself.
I have an Indiana pouch I use a catheter passed painlessly trough a stoma in my navel several times a day. If I didn’t tell anyone they would never know and the only thing that has changed in my life is the way I empty the urine from my body. There are basically three different types of diversions done and I am sure you will learn more about them in the coming days.
If you are in New York City Sloan Kettering has a very well-known bladder cancer program and they come highly recommended. It is important that you find someone who does a lot of this type of surgery studies show that the more they do the better your outcome is likely to be.
Take a list of questions to your doctors with you and someone you trust to take notes. If you don’t you will probably not be able to remember so much information given in a short time. Ask them about the different type of diversions they do and if they can be done in your particular case. If you have concerns about body image, sexuality or how any of this will affect your life ask questions.
Do not be reading everything on the internet about bladder cancer as most of it is dependent on your personal diagnosis and you can easily scare yourself with information that does not apply to your situation.
Most anything you are facing many of us have faced before you and we will happy to share our thoughts with you and be here for you. We may not have all the answers but we are pretty good at knowing what the questions are to ask in most case. I am sorry you have to be here but know that you are not alone in this.
Keep posting and take this a day at a time.
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 Society
Thanks for your reply. Feel lost tonite. I have an appt with an oncologist on Thurs and next Tues going for nuclear bone scan and next Thurs meeting within Dr. Scherr at Columbia Pres for an opinion. He specializes in robotic surgery and seems to have all the right credentials and experience. He has a great website if you’re interested. Let.s see what he has to say. Fortunately I work,at a Hsp,on,Long Island as a secretary so I have access to several avenues of referrals. But as far as the surgery I’m pretty sure I’llmgo,into the city. Tonite I’m pretty tired of talking about it with all those calling on the phone. But it’s good to,know I’m loved and supported. And so my journey begins and thank you for being here also.
Hello Sharon… I’m so sorry you have received such devastating news. I know your world has been turned upside down and you are feeling scared and numb. If you have had time to read around in the forum, you will see that there are many who have been right where you are right now. I know that doesn’t make it any easier when it is YOUR diagnosis, but as Sara Anne pointed out, there are also many success stories here.
Cynthia, the founder of this website and President of ABLCS, had bladder removal surgery several years ago and is a warrior for this cause, as are some of our other regular posters.
Welcome to the forum, but am so sorry you had to find us. Ask anything on your mind… there are no bladder-related questions off limits here.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Sharon,
Sorry to hear about your diagnosis. I had my bladder out and got my replacement (made from my intestine) almost four years ago.
As Sara Anne said, get to a top bladder cancer center for the 2nd opinion. You want a urologist who does more than 50 a year MINIMUM. AND you want one who does them for women with high frequency.
Most often, the Indiana Pouch is the best option for women. Neobladders are done for women and many have lots of success with them but they also have much less success statistically than men.
One reason is that women have a shorter urethra. This can cause problems with continence. Also, there are often other complications which can mean you would have to catheterize yourself either intermittently or long term. There is increased risk of infection just due to plain old anatomy and it is a pain to catheterize your self when you are female. With an Indiana Pouch, they create a new bladder but rather than connecting it to your urethra they create a hidden stoma in your belly button. Then you use a catheter to drain it. It does mean you will pee standing up and that has emotional implications from other women seeing coming out of a stall.
Lots to learn but the key is getting to the top place. MSK is a great choice. Do not pick a surgeon for this based on personality. Pick him/her based on experience. Lots of studies support this but I’m guessing you don’t want to be reading lots of studies.
We are here for you!
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.
Oh, Sharon. What a blow!! You have a lot to deal with right now. And there are others on this Forum you will hear from who have dealt with it SUCCESSFULLY!!
You have done exactly the right thing in arranging for a second opinion. I am not sure exactly what the line-up
for bladder cancer is, but I do know that MSK is one of the top in the country. You want to be treated by someone who deals with LOTS of bladder cancer cases; many urologist do mostly prostates, and that is NOT your problem :laugh: ! Also, one who has treated many women with bladder cancer.I know that Cynthia will be responding to you. She is a real pioneer in this area and knows what NOT to do.
Feel free to ask any questions you may have and we will try to help you.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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