Easrly Morning thoughts---update on Bob

Andrea,
It sounds like this group of Doctors are a little more connected than your last group.. it would be great if your dad could just get these lung spots zapped and he would be okay. I believe that a neo can be changed to a outside bag. The thing is it is probably another big surgery. I remember asking our surgeon about that possibility if we tried the neo and didn't like it for whatever reason. If you were here in the states at the Cleveland Clinic or another major facility I would go for the outside bag when he is better. Actually he has the same thing only inside since it isn't working at all at this point. I guess its just been one big mess for all of you, I would certainly like to see something go really right for him now..my husband has the outside bag, no incontinence whatsoever. He is 66,
Your biggest obstacle seems to be mis-information, wrong information, or none at all or after the fact. I no nothing about the medical situation in Canada, or how its run. My wish for your family is it all turns around to positive experiences from now on. I know as a Caregiver you have to be on top of all of it every minute, its a hard job, watching to make sure everyone else is doing there job!!
tAKE CARE AND i WILL KEEP YOU IN MY PRAYERS. Ginger

Hello Everyone, I see I'm a little behind! I'm glad that Mom has been keeping you up-to-date on everything that has been going on with dad though.

Our visit to the GRRCC on Tuesday was quite enlightening, and my entire family came out with a more positive attitude. The oncologist we saw was lovely, and she has referred dad to "her" thoracic surgeon and is also bringing his case forward to a pathologist at the facility as she would like dads biopsies reviewed. I wouldn't say she seemed overly impressed with the pathology report from here in Guelph...almost a little "red flag" went off when she discussed that. There was no comparison between the original tumours from Dad's bladder and the "metastases" which surprised her, only a comment that with the history, the tumours in the lungs are "consistent" with metastatic bladder cancer. It sounded wishy-washy to me, I'm glad it sounded the same to her.

Anyway, she felt that if indeed the cancer was only in two spots of the lungs, that they may be able to removed (the tumours only), and then dad could be given chemo. She is happy with how he is doing, he's gained >20 lbs since being home for the last two months, and is looking good. So, we should expect an appt by the end of next week with the surgeon to discuss all of this. Dad seems keen to do it...wants the cancer out!

I didn't make it to the urologist appt the other day, although wish I had in a way. He just seems like he doesn't know how to explain things to laypeople that's for sure. So he did the scoping yesterday, said there is some scar tissue that he can remove. I had asked dad to ask about the sphincter replacement (I think that is what Zach had done) and the procedure for that, and whether it would be covered by our Ontario Hospital Insurance Plan, but he forgot. If the scar tissue is really what is causing the pain, then it would be nice to get rid of it...and I don't think leaking more is that big an issue...I really don't think dad has any control at all. Ultimately though, we'd like to get that fixed, especially if there is a good likelihood of dad surviving the lung cancer....I wouldn't want him to undergo too much now until we know about that, but we were even wondering if there is a way to convert his neobladder to a pouch, or just make a conduit out of it and give him a bag...whether that would at least get rid of the leaking and make dad more comfortable. Anyway, I guess we'll discuss that as it comes!!

Ultimately, we are all in a slightly better place after dad's appt at the GRRCC...even if they are only able to offer palliative care, it seems like the place to be. The people were lovely. Certainly a more "team" oriented atmosphere where the doctors and nurses work together and try not to undermine each other...that will be refreshing!!

Thank you all again for your support. This has certainly been a difficult time! We are so happy we found this site, it has been immensely helpful to discuss this with people that have been through this (although I think most of you have had far better experiences, which is very good!!).

Anyway, thanks again!! andrea

Hi Harry and Margot,Lorrie,

Chemo started for me just 5-6 weeks after RC...it was no picnic. I wore "good nites" for the better part of the 4 monthes. The diruretics seemed to zap my continence. That and being too weak to move. The week off of chemo I was ok for a few days. Just a week or so out of chemo and it was night and day difference. Hope it goes that ways for you guys too.
In my prayers, Holly

Hi Lorrie - Harry had his surgery on 10/1 so is right there on the same time line as Bob. He too continues to wear pads during the day and a diaper at night. He has most of his incontinence problems at night and laying down. He's resorted to taking a nap sitting up in the recliner to combat the daytime leakage. There is no way he can "hold" it 3 hours at this point. He is currently receiving chemo, which I think also factors into the incontinence problem, so we are hopeful that after that he'll see some improvement. Harry hasn't mentioned the groin pain, although he is dealing with a lot of the chemo side effects at the moment...I pray that both see some improvement with the incontinence. I know everybody is different, so it is hard to compare, but hopefully with time the incontinence will improve. Harry has mentioned more than once he is going to discuss "Zach's equipment" (that Zach has written about on the site)with his doctor, if this persists after the chemo is completed...that may be an option to look into. Margot

Hello Lorrie

Where did you husband have his surgery? I had mine in Hamilton and was happy with the way things were done. No real complaints. I'm 7 weeks post-op (bladder R/C) and all has healed good, still trying to get the leaking under control, can last about an hour. We go see the chemo doc this week to start the next treatment stage

Bob just got home from the hospital after having another scope.( I just cringe when I hear the words scope & penis in the same sentence). Anyhow, the DR. says that he has scar tissue in the penis which is causing the pain. He claims that he can remove the scar tissue but it will make him 'leak' more. LEAK MORE!!!!! HELLO!!!!! The man is totally incontinent now! What now? Any thoughts? Has anyone else gone through this & would you mind sharing your experience?