A Woman in the Medical profession told me yesterday that in Israel the Doctors are creating Bladders outside the body and will be installing them in people soon So the message is to follow Israel on Bladder Cancer as they are working on the cure for this horrible disease Not cure but best alternative for victims.
Drainman, Welcome to our forum. I also went through the bladder sparing protocol. I did mine at MGH in Boston under the doctors that originated the protocol. Twenty trips to chemo and forty to radiation over seven months. Mine came back with a vengeance and I had a Radical Cystectomy less than a year of finishing the protocol. Unfortunately it has left me with intestinal problems as well as neurological, radiation is the gift that keeps on giving. For some the protocol works but it is a crap shoot and if you lose it can leave you with problems you deal with for the rest of your life that could have been avoided by just going to Radical Cystectomy straight off. Hopefully one day blc survivors will be offered enhanced choices that don’t hold such potential downsides. Having said that glad to see you doing well.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
I had a 3.7 centimeter Tumor which was T2 stage two grade three.I am also a disabled veteran and the VA did save my life because I chose to keep my bladder and prostate after I had the Tumor removed I did the five weeks max dose and two weeks deadly dose cisplatim.I also did thirty seven days of radiation.My Oncologist was Doctor Shenong Wu who really kept me alive.as for your spasms they will get better in time believe it or not the cialis medicine will increase your blood flow to that area and heal you faster.As for the feeling sick like throw up I took over the counter Nausene which you can buy over the counter at Rite aid and that worked better then anything else.you still have a long way to go but your body will adjust and heal.Your life will never be what it was before so you have to re adjust your thinking and remain physically strong.Stay out of the bed and work hard and keep your body moving.You will find many people will not be of help to you so you will just need to help yourself.
I had my tumor removed yesterday morning and they also completed a stint from my left kidney to my bladder as the tumor was very close to the ureter opening. Bleeding wasn't to bad but they made me stay over at the VA as I live 100 miles from there.
I did come home with a Foley catheter which will be removed in 5 days.
The biggest issues noted so far is that I have having big time spasms that just about knock me to the floor. They gave me oxybutynin to help with the spasms and phenazopyridine to relax my bladder, but spasms are still pretty severe. If I lay back on a reclined position or lay down I don't get the spasms, but they want me to be walking around as much as possible. I have been pretty sick to my stomach from meds but I don't know which is the culprit so I am just gonna keep taking them.
Doctors comments were that it was attached not via a stump but rather an area about the size of a quarter was involved. He did state it was pretty deep in his opinion. I will have no knowledge of the biopsies until my appointment on June 6th. I will report back then.
From what I've read on this forum, recovery (and pain) varies. Seems like some guys bounce back in a couple of days. For me, after my 1st TURB, as another poster has said, it was like "peeing razor blades" for a couple of days. Fortunately, they gave me a few days of pain killers and something for spasms. I guess the urethra could have been cut/scratched toward the business end. After a couple of days, it was only teeth-gritting discomfort to get things flowing, and the pain diminished over the next week. They didn't tell me to watch out for clotting, but some posters have had serious pain when flow got blocked. So I figure if you can't go, let the medical team know. It also took about a week to feel like I was getting back to normal after my 2nd TURB. I was given fewer and lesser potency pain killers and Pyridium. (I couldn't tell if the over-the-counter Pyridium helped or not.) Pain during the 2nd go-round seemed more related to bladder spasms than to issues with the urethra. Good luck, Stu
7/18 Gross hematuria
8/18 TURBT, papillary urothelial carcinoma, T1 LG
12/18 TURB, benign urothelial mucosa, features consistent with cystitis cystica
9/19 TURBT, HG papillary urothelial carcinoma, noninvasive