We have seen too many people on this forum that are no longer here because they wanted to "save their bladder"
I am not trying to change your mind except to say that bc is a VERY aggressive type of cancer. Once it leaves the bladder muscle, it is almost unstoppable. It heads to the lungs, brain, lymph nodes and bones.
My Dr says there are two types of cancer. The turtle and the squirrel.
bc is a squirrel and is almost impossible to stop once it is outside the bladder.
If it is any consolation, I am a nerve sparing survivor of RC.
I had a great surgeon that had done many of these before me and I experienced very few side effects. That is not to say that I breezed through without having any discomfort.
This is a BIG surgery and a long recovery period and you have to be careful during recovery. Watch out for infection and eat and drink what the Dr orders.
I still have issues with incontinence at night but I live a crazy life.
I work a full time Jeep dealers job and I play golf, ski and race a sports car.
I make no excuses for my physical limitations and bathroom needs.
If you have really good Dr's and they are giving you their advice to remove that bladder....... follow it and get it out of there!!!! It's an ugly organ and it has failed you. Yes, it is a BIG decision and it is not easy. But these people are not giving you a sell job..... They are trying to save your husband's life.
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
New Man! [/size]
Thanks Cynthia and Webgurl for the thoughts,experiences and encouragement. We have a robotic RC scheduled next week and last night received more encouraging information about bladder preservation. sends my head spinning, and understand the frustration coming from my husband. We just want to be sure we have weighed all the choices before we do anything. At the end of the day it is my husband's choice and of course will support him either way but it is a difficult decision to make. You want the best guarantee that the cancer will not return and there really are no 100% guarantees with either treatment. With doctors on both side of the treatment table it makes it even more difficult.
As a survivor that didn't need a diversion I appreciate your joining us as you never know, things can change in this disease for anyone! Welcome and there are many that need your sage and timely observations!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
3 years 4 months ago - 3 years 4 months ago#52293by Webgurl
I too just found this forum and am excited! I am a stage 4 childhood cancer survivor and have experienced all kinds of things since I was diagnosed at age 3. I am now 44 years old.
Cynthia is correct: You want to ensure whichever surgical oncologist is performing the surgery has a lot of experience. I was born and raised in Las Vegas but have had every one of my 18 surgeries in California. I had a urostomy bag from the age of 3-19. They converted me to an Indiana Pouch because the urostomy was allowing "reflux" and my kidneys started to become affected.
My 72-year-old uncle had bladder cancer and they saved his. Unfortunately, he now has a leaky bladder and has to wear Depends daily. Not to mention, he's up/down every 2 hours at night with the feeling of having to pee. This has left him exhausted and has limited his activities.
One thing about having a neobladder where you catheterize, your intestines/colon have to be viable AND your husband will need to cath himself every time he urinates. This requires extreme hygiene. I have found if I don't wash my hands before/after I cath myself, I am highly prone to urinary infections. Since I went to my original urologist-oncologist to convert my urostomy bag into an Indiana Pouch, I had many complications and numerous surgeries to fix it. He just didn't have enough experience to do it!
I have a very active life, work full-time, and love to travel. The sex thing is another vital thing to consider since your husband is only 58. I know we as women can take it or leave it as we get older but men are highly sensitive about the subject and lack of performance. Sorry to go there, but my hubby is dealing with ED right now himself and it's been a BIG issue with him (he's older than me). If your husband did have a neo-bladder they might be able to secure that part of his manhood.
After having both a urostomy and Indiana Pouch, I have to say I freaking love my Indiana Pouch! I too have disposable catheters I carry to get rid of in public restrooms and work. The Indiana Pouch is way less cumbersome to me than wearing the urostomy bag. I had so many issues growing up with that thing but I know the appliances have come a long way.
I always read my doctors' credentials and where they did their residency. The surgeon who fixed my Indiana Pouch after its issues, Dr. Thomas Ahlering, studied under Dr. Skinner (who was involved in creating the Indiana Pouch). I can't rave enough about Dr. Thomas Ahlering (UCI Medical Center, Irvine, CA). I know it's not in your home state but that man has saved countless lives and performed thousands of surgeries on both men and women. It might be worth just visiting him for a second opinion. He uses the DaVinci robot for prostate cancer at a successful rate and is a urologist-oncologist. He's amazing!
Best wishes to you and your husband. I know it is stressful. The worst part is about the 9 days post-op but after that.....all good.
Happy to help!
Last edit: 3 years 4 months ago by Cynthia. Reason: For safety reasons we do not allow personal information.
Sorry you have to be here but welcome to our forum. If anyone can understand where you two are coming from it is me. I really really did not want an RC I just knew there had to be another way. Massachusetts General Hospital in Boston is the Mecca of the bladder preservation protocol where a great deal of the research on the topic was done. That is where I went through my treatment under thier protocol. It started in October and ended in May with 40 trips to radiation and 20 to infusion. My bladder cancer returned by October of that year and after BCG that failed I had a salvage RC at University Of Chicago in May as I was able to find a surgeon who specializes in urinary reconstruction following radiation. I lost my ureathia as the cancer had spreadI but I can honestly say the RC was easier in a way than the protocol. Since then I have had two more surgeries associated with scar tissue and years of physical therapy due to a stroke like event that affected my right leg all they feel were post radiation related. I am not saying that bladder preservation is a bad thing if it works but it does leave you with less options if it doesn't.
The reason they do not wait to do an RC following an invasive diognosis is that once it has shown itself to be aggressive is because it has shown itself to be aggressive. Also as good as modern pathology is they can not do a bottom line this is it pathology until they have the entire bladder and close lympnodes to do so. What they need to see is microscopic and can not be seen on a Pet or CT scan.
As for not knowing what type of diversion you will have until surgery that is normal. Until they get in there they will not know what they are dealing with. The vast majority get their diversion of choice is the good news but they wouldn't be doing thier jobs if they didn't prepare you just in case.
Looking back I now realize I was more focused on saving my bladder than surviving the cancer the real enemy. I have a full normal life since my RC and I can honestly say it does not keep me from doing
anything I want to do. I am not trying to discourage you pursuing bladder sparing but understand it is not a free ride and needs to be done under experienced hands.
I hope this has helped a little. Have you talked to his surgeon about nerve sparing surgery to preserve sexual function? And make sure they do a high volume of RC's for example my local guy did three or four a year the one that did mine did three to five a week.
Don't forget we are here if you need us
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