Hello I am new here...

CT scan does not show node involvment...if it did they wouldn't have to take so many out to be tested..........

MZ after my TUR I was kind of out of it but no pain as you are mentioning. My left ureater was blocked therfore my left kidney was not functioning. Well later that night one of my Dr's residents came in and said I had to go back in OR the next day to put stent in. The last thing I wanted to hear after my Dr was in that morning telling me I needed the stent and also he thought from what he saw my tumor got into the muscle and he was right. Well this time the stent worked and besides peeing red for for a couple more days no pain just the same old burning sensation and after this procedure I was amazed I stayed awake the whole day and got to enjoy the company I had that day. I was discharged the next day and was told my urine would clear up and it did. As far as your lymph nodes you are not going to know until you have the CT scan of chest and Bone Scan these are the tests that determine if the cancer has spread to anyother organs or lymphnodes according to my Dr. I was a nervous wreck waiting for these results but I just kept as busy as possible trying to focus positive and keep my mind from wondering. I got my results 1/13 and the cancer did not spread to either thank God. I am a stage T2 and my treatment plan is posted under this topic. Having support and trying to focus positive is key in trying to beat this disease. Best Wishes. Joe

MZ.....i never had any pain after my TURB's....my guess is you have an infection from the cath being in so long. I don't know why some doctors do that...there's no precedence for it unless your bleeding and it does seem very arbitrary among the uro's??? My surgeon at Memorial Sloan took the cath out l5 mins after i woke up...my urine was clear...no need to keep it in. Your symptoms sound like cystitis to me...Call your doctor and get on an antibiotic and pyridium for the pain.
You say your doctor does 2 neobladders a week........on how many women? Just ask...ask him for a list of the women so you can contact them to see how its working for them. I know you don't want to second guess......but its your life....get whats right for you. God gave you the ability to ask questions. Pat

Mz
Your last post reminds me of how these diseases can cluster round families. I lost my sister to lung cancer at 38 in 2000 and my dad to bladder cancer three years later. So I know a bit about baggage! In fact, I think it was these to events that funnelled me down a more aggressive treatment path for my illness which was ongoing throughout all that. Anyway, I deal with it. It sounds like you guys are in similar territory.

Your question regarding pain is probably one for the women on here. But in my 14 years there's been no "typical" pain pattern after scopes and resections. I've had the no pain then loads that you describe and also no pain at all...the list goes on.

Some of the ways in which I dealt with the feelings of helplessness during my treatment were nutrition and counselling. They made me feel I was taking an active part in my treatment rather than being a passive "victim" of this horrible disease. There's lots of great stuff on here to inspire you and ask anything you like.

All the best to you

Tim

Hi
Sorry your here we are the same age I will be 42 this year and had surgery last August.If you have any questions,fears, worries at all please free to PM me.
The pain you describe is familiar I ended up having to self cath whilst waiting for surgery and got awful cramps.
You are going through such a scarey time I found the waiting for treatment to begin deciding what to do bit the hardest of all.I ended up with an ostomy which isnt great but is now just part of me.We adapt so quickly and whatever happens quickly becomes normal however freaky it would have seemed a few months previously.
You have found a fantastic support network here I can honestly say its kept me sane over the last few months and I have so many virtual friends.Its often the only place I can voice my real feelings and fears.Family and friends have been fantastic but they worry and I fell i have to put on my brave face for them.
Take care be gentle with yourself choose clinicians to treat you that you like you will be seeing a lot of them and need to trust them implicitly and like I said if I can help get in touch I usually pop online at least once a day.
Love Claire x

Hi - thanks for the support and input...

I has a scope done the 12th of Dec and urologist saw nothing. Next scope on 1/29 found a 2.5 cm. Not sure I believe it wasn't missed in 1st scope, but in any regards. The Dr in Madison said this cancer has a very high grade and architecture demanding very aggressive measures. It had a blood supply. The urologist I had said he went through much of the deep muscle to get it all. Madison Dr said bladder sparing is not an option, todays surgery is to get clean margins and see what he can use for diversion. I simply want to get to disease free and on with my life...

My husband is indeed supportive. We were baptized together 2 weeks before we wed and our marriage is founded on faith and best friendship. He lost his Mom to breast cancer and his Dad to brain cancer so he is dealing with some very heavy stuff. I was left by my previous spouse just 10 days after I had surgery for breast cancer so I guess my baggage is significant as well. As it is, we are committed to getting thru this and will take in stride what has to be to get disease free.

The Madison Dr does 2 neobladders a week at University of Wisconsin Madison. Based on his experience and the UW listing on the top 40 hospitals. I am confident in the current course of treatment. I will go crazy if I perpetually 2nd guess the cancer, the Dr and my choices. And yes, the info out there is astounding and overwhelming. I have limited myself to seeking info only from well recognized sources, and remind myself medicine is a "practice" altogether. Then I pray and give it to God so I can find some peace.

I am also supposed to have a bone scan, PET, chest CT scans. And they plan to take nodes when the bladder comes out.

Also I was wondering if how I feel physically is normal...After the initial surgery they gave me morphine as they said I was having pain from contractions post op ( which I don't even remember). But after that and until the cath was taken out 10 days later - I felt great and mostly pain free. Then they took out the cath - I am in more pain than before the surgery and struggling to pee again. I am tender all across the low part between my hip bones unlike before. I had a baby without so much as a tylenol and have a high tolerance for pain so I am wondering what is with this.

Thank you again for the input and support. You are all on my prayer list everyday and I'll keep posting .