Newly Diagnosed- Invasive bladder cancer

Hi
I agree with everyone else if its bothering you get a second opinion otherwise for evermore you will be thinking did we do the right thing.
I was diagnosed with grade three and initially stage 2 bladder cancer in the summer.I had surgery at the end of August and the path results confirmed the high grade but put me stage 3a.For various reasons I ended up with an external bag.Its not ideal but I really havent had many problems with it and I am not aware of it most of the time.I have had to have chemotherapy which has stopped being active but I am sure if I hadnt had the chemo I would be doing everything I did before.I am 41 with three young children so am normally very active.
Your husband is lucky that they think they can use his urethra and do a neo bladder.It sounds as if the team looking after him know their stuff and their credentials are certainly good.This time between diagnosis and treatment starting is really hard I found it the worst bit and ended up using sleeping tablets and getting myself into a real state.You need to be able to trust your clinicians and feel confident that they have your husbands best interests at heart once you feel you can do that and treatment starts I am sure you will feel loads better,
Take care this a traumatic time for you also.It will do your husband so much good knowing that you are there for him I couldnt have coped without my husbands constant love and reassurance.
Good luck and I am sure he will be fine whatever you decide to do.
Love Claire x

go online to the sites near you in Minn....i.e. Mayo....see who specializes in cystectomy ..read their bio....call...find out how many they do...and go from there. Most men do famously with the neo-bladder...it takes a little work...gotta work those muscles...and it takes time. With the internal pouch like i have..Indiana Pouch...my stoma is where my navel was and its pretty easy to do....you just have to let it know whos boss. I go 3 l2 to 4 hours during the day and 6 to 8 hrs at night...its no big deal and i've yet to have an infection in 4 yrs.....they put a valve in there to prevent any refllux back up the urethra. The one thing i find very important and my doctor said..if you can afford it never re-use a catheter. He wrote a prescription for the caths and my insurance paid 80% of the cost......that is until Medicare......they're idiots....they have old guidelines and haven't a clue and they are impossible to deal with. I re-scheduled my surgery 3 times....i was terrified......make an informed decision...its your life. If you need to travel to have the surgery do it.....you can find someone locally to follow up. Pat

Thanks everyone.........
I am going to find out who to go to for a second opinion...my husband says he doesn't care..he just wants to to get the cancer out. We live in Mn and so far I have not had any recommendations as who to go to. His surgery has been scheduled for 2/1. so we only have 2 weeks. Mayo is here- in Rochester- we live in the Twin Cities...The University of MN is here as is Abbot Northwestern. So do you just ask for the best Uro-oncologist. My husband and I have also been beeating around the bush about his sex life afterwards. The Dr just kind of breezed by the subject and said it will never be the same and there is a 50/50 chance his function might return but that he can have Viagra or injections... So many questions so little time. I guess also I do not get the advantage necessarily of having the neo bladder- Lots more recovery- lots more chance for infection and possible self cath for the rest of your life.
Sorry I am just venting...

Definately for your own piece of mind get a second and even third opinion. If your insurance allows second and third opinions see a top surgeon at one of the major cancer centers. Get on Travelocity and get a last minute weekend deal...most centers also have hotels that give you a discount and believe it or not they will get you in quickly and around your schedule. Wendy is right...there are a lot of options out there. If its Stage 3 it still may be contained in the bladder...they will only know once they get in there and test the nodes. The neo-bladder works great for men but if it has gone outside the bladder the options change and they would then change to an internal pouch. Make sure they are doing nerve sparing surgery...most major centers do now. I don't know what part of the country you are in but i can suggest some great places to go...Memorial Sloan in NYC..USC/Norris....Indiana University Med Center...Johns Hopkins. I would name the one in Texas but they are not so accomodating as the others. Pat

Always follow your instincts. The fact your stomach is nagging you and you're nauseous about everything tells me you should definitely schedule a second opinion. But be prepared, what if the new uro is one of those who are recommending pre-op chemo for invasive bladder cancer? This is a controversial area of uro-oncology and doctors have widely varying ideas of what's best. In such a situation people get third opinions.

Take care,
Wendy

I also was diagnosed with invasive, agressive, type 3 in July, and had a cystectomy. Before surgery, I felt like I really needed a second opinion, just for my own peace of mind. Unfortunately, second doc, an oncologist, agreed with the urologist, so I had the operation in late August.
I agree with Sam, get a second opinion so you won't spend years wondering if you did the right thing. Tell the new doc what you want, they will try to get you in quickly for a consult. I am 57, and still can remember the apprehension I felt, but am doing well and was able to do light work and walking about 4 days after being home from the hospital. FYI, I have an external pouch, and the idea of sleeping 7+hrs. without waking is okay. Also, I play golf, bike, and am pretty active, and the external pouch has not slowed me down. The nerve sparing prostrate removal also went well. You are in my thoughts and prayers as you go through this ordeal, but I have faith that you will emerge healthy. God Bless.

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