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I just found about about a month ago that I have invasive bladder cancer. I am at MD Anderson in Houston. The team of doctors wanted me to do MVAC chemo then have the bladder removed. I am a 41 year old male and this has been so overwhelming for me and my family. I just need some support through all of this. I guess I just want to know how life will be without my bladder. Not sure what type of reconstruction I will have...have not gotten that far yet.
Cancer Surgery Incontinence Anxiety Hernia Hematuria Pain Neobladder Heart attack Stent Bladder cancer
Hello,
Sorry to hear about the diagnosois. By the end of today I know you will hear from alot of people who can give you support and guidance. My Dad is 73 and is going to have a RC done Sept 14th with Dr Kumat, also at MD Anderson, Houston. You are at the top Hospital for Bladder Cancer. It is best to hear from people in your situation, and what they have done to get the best care for this. I know it is overwhelming, and scary, But there are things you can do to treat it, and depending on what grade and stage, they will come up with a plan. Stay positive and your in the right place for support.
i did MVAC high dose clinical trial neo adjunvant, and had my RC one month ago.
i am 43
all has worked out well, and i have a new neo bladder.
so....don't sweat it
you can beat this....i did
any questions....let me know
stay calm
david
WOW...thanks so much. If you can do so can I. I am otherwise in perfect health. Looks like the cancer has not spread any place other than the bladder but I guess when they go to do my surgery they will know for sure...right? All CT scans were clear. David...did you have chemo before and after your RC or just before??
Thanks!
David B.
Hi,
Welcome to the family. You are in good hands at MDA several of our members are going there for care. I'm sure you will hear from some of them. I was diagnosed with BC in '95 and had
BCG and many TURBs for 7 1/2 years. In '03 I had a radical cystectomy and neobladder. 6 years and cancer free, doing well. I am now 65. I do everything now that I did before. I may do it a little differently and a little slower, but then again I'm also a "little" older. I wish you all the best. LiveStrong!!
Keith
Hi David, Life without a bladder. I can't say how it will be for you as each of us have different though similar experiences. I've found it to be frustrating and funny sometimes at the same time. I have the neo and am comfortable with that decision. Incontinence has been something of problem. Daytime is not so bad and hasn't been much of a problem except for a sneeze or a laugh will cause an occasional dribble. So I wear guards in my underwear to manage that problem. Nighttimes were a bit worse. I'm a sound sleeper so its been difficult to train myself to get up to void in the middle of the night. An alarm clocked helped but it wakes my wife, although wetting the bed tends to wake her up too. I'm getting better at managing nighttime incontinence. And life is getting better as I adjust. I hope Doc has talked to you abour sex life and the changes you may experience. If not make sure and ask. I wish you well and good luck.
Tag
Hello and glad to see you found us here. I had the RC surgery 9-20-07. I have the outside bag. I had 3 cycles of chemo before I had my bladder removed. I just had some repair surgery done this past Monday for a hernia behind my stoma. I live a normal life and it will be much better now that I have all this repair surgery behind me. I love my bag--it was a life-saver and I am now 50 years old. I go back in a few weeks for a check-up from the surgery and then back in Sept. for my 2 year check-up.--------LINDA
i did chemo first....neoadjutive
that is procol for mvac clinical trial at dana farber
they consider long term survival rates much higher especially in younger patients by this method,
i lost my hair and was tired, but otherwise ate and kept weight.
Hi David,
Welcome to our BCan family. My urologist is Colin Dinney at MDA. When I first went to him and didn't know if I would need surgery or not, he said he would suggest a neo because of my life style and age(62...not nearly as young as you are). I am presently doing BCG maintenance with quarterly cystoscopes and have been all clear so far. But, everyone that I talk to who is on "the other side" of the surgery seem to be very happy with their cancer free lives no matter what kind of diversion they have. Let us know how you do with your chemo so we can be here for you through this.
Lynda
Hey:
Welcome to the community! I am 47 years old and had my RC on July 22nd. I had no option but the ileal conduit - outside bag. It's been a little over two weeks and I have no complaints. My goal was to be cancer-free so the bag represents life to me.I am amazed how simple it is - can't see it under tight clothing - pretty easy to change out. So - so far so good. I had robotic/laproscopic surgery and virtually no pain and a short recovery.
Let us know how we can help - Veronica
Hey David, first take comfort in knowing that they can get this cancer out of your life. Also know that you are in one of the world's best cancer facilities especially for urology. They will also treat you very well. It is a big change, a major surgery, but as long as you are at MDA, you will be fine. That is where I will have mine if, probably when, I need it. They will help you and your wife with what ever you need. Life will be the way it was, except temporarily different (did that makes sense). many young guys have been in your position. It's not what I would pick for a vacation, but you will be OK.
Hey David, yesterday there was quite a discussion about the joys of bags(and thermos bottles). Take a look That's what I'm talking about whwn I say frustrating but funny at the same time
Tag
Hi David
Welcome to our community.
I was diagnosed with invasive bladder cancer exactly a year ago at age 41 and went through a radical cystectomy last september.
I am doing excellent and I am back to normal. I have no incontinence issues and ao everything I want to do. (I ran 16 miles yesterday preparing for Chicago marathon...my muscles are a bit sore today).
Its good news that your CT is clear and you are in great hands.
Anna
anna ...you are the s__t......
god you are such a inspiration to us all.....
you made me way stronger as you will here...
god bless you
Hi David,
I'm glad you found this place. It was a huge help to me.
I am 54..I had my RC with Neo Bladder in January of this year. I am now back to riding my bike, playing golf (in fact I am hitting the ball a little farther) and basically doing anything I used to do.
They gave me the option of having chemo before surgery but that would have delayed the surgery for 3 months or more and I wanted the cancer out.
Fortunately all the pathology during and after surgery was clear so I did not need any post operative chemo either.
Best of Luck....you are at a great Cancer Center
Thanks so much for your positive responses. I have hope now! After my diagnosis, I was totally shocked. Not one time did my urologist think I had cancer. I am the one who demanded he take a scope of my bladder.....he was shocked too. He said bladder cancer usually occurs in much older people who smoke. Well from looking at this website that is not the case. I agree there needs to be more awareness. This whole experience has changed our lives already. I will never ever take one day for granted. It's just very scary to think cancer is in your body. Thanks again.....David
David, Just wanted to welcome you. Best of luck... keep trying to think positive and keep in touch...
michelle
Hi David,
I was fairly young, 44, when first diagnosed. My Dr. also told me I was too young and it took 8 months until I literally diagnosed myself via the internet and demanded a cysto.
This is a group group of people with all sorts of life experiences, living with r/c, etc. We support and hep each other I really believe I am now a better person having gone through this journery. Welcome!
Tom in Michigan
Welcome David~
I strongly encourage you to Play the lottery!
how Lucky you are......
You found our site
and,
I am jealous... you found MD Anderson!
You will find such a wealth of information here.
We will walk with you on your journey and try and give you a few shortcuts.
Hang in there, this is not the end but a new beginning!
so many times I hear of people whose urologists just don;t want to be serious about BC. SO let me give you the other side of the story. I was 44, Hx. of chronic cyctitis, started to have frequency, figured same old prblem, I'll see my doc if it does not get better.. I was 44, one night I filled the toilet ups with blood. Looked like a horror movie. My first thought was that there is definitely something wrong. Went to ER. Really nice lady do did all that is typically done in an ER. Then she sat down with me and told me all the things it could be and then said, BUT, it could also be cancer. She arranged for all kinds of test and made arrangement for me to see the uro around. All at 2 AM. Two days later the uro immediately checked for blood in urine, did a cytology and also did a scope. Yup, huge tumor. He didn;t guess, he diagnosed. The next day he did the TURB, biopsies, etc. Three days later he called me in and we talked. He told me everything. That was over 17 years ago. Everyone took me seriously and got on top of the cancer really quick. Any doc who thinks cancer is for young smokers should be changing tires at a Wal-Mart somewhere.
I whole heartedly agree Cheyenne!
i was being followed by an urologist because I had a kidney stone in jan 07 and then went back to him in april 07 due to UTI's.
In feb 08 I had a urine test that came back positive for microscopic hematuria, white bloodcells and bacteria. He put me on antiobiotic and again I was tested and it came back with the same bacteriaand hematuria, repeated the test and more antibiotics.
In april I sqaw him and when I asked him if he thought my recurrent UTIs that didn't seem to be resolved by antibiotics was anything malignant he just shook his head and said "that would be highly unlikely, by the way you don't smoke do you". I said no and he told me he didn't think I needed a cysto because he was in my bladder jan 07 when he removed my stent (after lithotrypsy).
A week later I discovered gross hematuria and called the office. His nurse said that if I wanted to talk to the doctor I would have to make another appointment and that "blood in the urine looks worse than it is".
Four months later I finally had the cysto after a week of gross hematuria. (but not without first having to convince the nurses that indeed I wasn't having my period)
I am all for educating our primary care physcians but it is a bit disheartening that some of our urologists needs to be educated as well.
Anna
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