My dad's story...questions

My Dad's urologist/surgeon also left his urethra due to time spent on the table because of adhesions. The doctor said the margins on the urethra were clear with no indication of cancer spread, so he had no qualms about leaving it. I'm not sure why your Dad's doctor wants to put your Dad through surgery when there is no indication that there is an immediate need to remove the urethra. Was there indication of cancer there when your Dad had his RC? I know you said he had some positive lymph nodes. Were they in the urethra area?

Recently, my Dad has experienced some problems that has led the uro to think Dad needs his urethra removed. However, I think that a biopsy of the tissue should be done, at the very least, before anything is removed. Dad is certainly not anxious to go under the knife again any time soon. From what I've been told, the removal of the urethra is a pretty painful procedure for the patient. Right now, we're in "watchful waiting" mode.

If I were you, I would ask the doctor why he wants to remove the urethra and what would most likely be the results if you did not remove it. There are people who are able to have a certain type of continent diversion and still use their urethra to void the same way as before the bladder was removed, so not everyone has the urethra removed, although I think most do as part of the RC.

Has anyone went through r/c and then later had to go back in to have a complete urethrectomy done?
Dad's urologist had said prior to the r/c that the entire urethra would probably have to come out, but that he did not want to do it at the same time as the r/c because it would add another 1 1/2 hrs on to the surgery and that the surgery was already traumatic enough. He said he would go back in - in about a month and do the urethrectomy on an outpatient basis and dad would just spend a day in the hospital. Has anyone else had this same occurrence of going back in later to remove the entire urethra? Is this common?

I would suggest that you get a copy of the pathology report. That way if you have further questions when you get home, you will have all the info. Sometimes it is hard to remember everything at the time.
My mom does fine on her own but we just check in her often. She still needs some help changing her bag. I would think you could continue to work for now.

Hi again,

As far as the bag and the paste etc. After the stents are removed if will be much cleaner, no mucous hanging around as it was when the stents were in. He will feel better that there out. Now the bag, you shouldn't have to use the paste at all, because the healing will help in time for a flater surface, it all goes back to normal and your area for the bag will be much better to work with. My husbands stands when changing it, for the first 6 weeks a stoma nurse was here to do it until he was able with no problem. Hollister is the bag we are using and prefer.
I can't answer any chemo questions but again from what I have read some fly thru it and others have minor side effects.
I venture to say your dad will be around for a long time, not to worry. He sounds like a wonderful dad who is loved dearly by his daughter.
Ginger Beane

Heenan,
I mentioned to you in a reply to your other post, that I have the same diversion as your dads.
I use a Holister pouch. What my Stormo Nurse did for me was to get me in contact with a distribution center of Holister items. I contacted them and they sent about 6 different types of pouches and 4 types of bags. They sent me two or three of each kind (they were free from the distributor) I tried several until I found the one that felt comfortable, easy to change, and lasted the longest before leaking.
I do not use any powders or pastes. I didn't even try either of them.

My insurance will pay for 20 pouches a month. I do not even come close to using that. I use one a week. When I get down to five left, I order the next twenty. The supply’s usually arrive in a day or two.

My stormo healed pretty well around the skin and I have had no problems since surgery. When I take my pouch off and I am in the shower, I scratch the itch on my skin that was under the pouch like a dog with fleas. Some times I may rub my knuckles against the stormo and it does bleed for a real short period of time. There is never blood in my bag after these rubbing instances (I have a clear bag to see my urine color and mucus. This is just me wanting to insure that I don't have visual problems with my urine).

My wife and I were able to learn how to change my pouch while I was in the hospital for the six days following surgery. My Stormo nurse had one or both of us change it with her watching. We were confident when I left to do it ourselves. Now, I change it myself. I do have my wife shave the hair each time I change pouches. I tried the shaving on my own, but had nick marks on my skin. The whole changing routine takes us about fifteen minutes (most of the time is spent showering too).

The next challenge after changing bags for me was being able to sleep with a tube connected from my stormo bag to a larger night bag. I got it down where I can sleep a full night (8 hours) with out waking. The tube just moves as I toss and turn from side to side.

Good luck to your dad.

Rick

I have posted "My dad's story"-it is on the newly diagnosed forum...please read.

Now I have questions. I will be going with dad to the urologist next week. At this point in time, does anyone have any recommendations as to what questions I should be asking?

I would like to know the grade of the nodes that tested positive - should I also ask the size?
I have read that you should ask if the following biomarkers were tested - p53, p21 and ki67 - what will these biomarkers tell me?
I have also read that it is important to know the "P" stage of the bladder cancer - should I ask that, and if so - I have not seen any graph that tells me what the different "P" stages are - I only see "T" stages?
What about vitamin B12 testing/deficiency? Should I start my dad on extra vitamin B12 right now?

Dad will have his final two stents removed when he sees the urologist. Will this help to make changing the bag easier and not so messy with drainage? They sent dad home with a Conva-Tech bag, now the home health care nurse is changing him to a Holister bag - any recommendations/pros/cons? How many bags/supplies do you keep on hand at all times? Do you constantly have to use the stomapaste and the stomapowder or will that decrease as time passes? Do the wounds around the stoma heal? My dad is very nervous about having to change the bag by himself - how long would be a reasonable amount of time to help him before he should be able to do it alone?

And - I am a CPA by trade - so I like to deal with facts and the details...based on my dad's story and the stats...any recommendations? Should I take a leave of absence and be with my dad for this tax season - do I need to take him on a vacation of a lifetime - or is he going to be around for many tax seasons to come and I am over-reacting? My dad is my hero - he has taught me so much about what it means to be a good person - to be honest, caring, hard working, and to love with all of your heart. It is because of my loving father that I am the woman I am today-my dad is strong and sensitive all in one package. He is one of the nicest and most caring men you would ever meet in your life. My big heart exists because of the love that he has filled it with for my entire life - and I am not ready to lose him...but I need to know - how likely is it that he will be around for many years to come? I know that no one can predict the future and I am not looking for a crystal ball - but any insight that anyone that is going through this or has gone through it in the past can give me is much appreciated. Thank you with all my love for my dad...Heenan