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Need help...Please

10 years 7 months ago #30502 by stevegrimes14
Hi TGlaze,

You have a difficult situation on your hands. Pat has the right advise, and of course we all feel for you. Learn as much as you can as quickly as you can. It will serve you well down the line. Bless you for your concern and care.


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10 years 7 months ago #30276 by dukel
Hi T. I surely do not have the wisdom to give you the info Pat
did. Thank God there are people like her on this site.
I can echo what George said tho.
My heart also goes out to you and your uncle.

How does the saying go?
I was crying about having no shoes, when i met a man with no feet.

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10 years 7 months ago - 10 years 7 months ago #30271 by GKLINE
Please take Pat's advice. She knows that every situation is different. Go to a Bladder cancer specialist who can think through the whole process and come up with a solution.
What worked for the rest of us is very different for you.
Our hearts go out to you.

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
09/09/09...New Hip
New Man! [/size]

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10 years 7 months ago #30268 by Patricia
Hi T,
This is a difficult one. If he cannot be complient with the demands of a diversion he will have to have someone who will come in and take care of him every day. The simpliest diversion is the ileal conduit but it has to be changed and cared for. I would not let them do a neobladder on him or an Indiana Pouch as he would have to train them and if they do not work properly which is often the case he will have leakage or backup into the kidneys (which also can happen with the ileal conduit) and he will have to catherize himself. I can assure you that noone will be able to do that or will want to do it unless they're
a stoma nurse and they are far and few between as well as expensive. He will get some weeks of at home care but if he cannot learn how to take care of the area and change it himself he will need someone who can do it for him.
I don't know where you are located but i would suggest you contact Dr. Mark Shoenberg of Johns Hopkins for some advise. Sometimes with an older patient who cannot be complient with a diversion...even with muscle invasive they go in and completely re-Turb it and remove all margins. They have to be continually monitored..every 3 months..but there have been cases of even a T2a regressing to a lower stage. This is still only being done at a few MAJOR cancer centers and by Top surgeons. I don't think a local uro would have the skill to do it truthfully.
You'll notice Dr. Schoenberg has an email address
I think chemo and radiation would just make his life unbearable.
And cystectomy is not an easy operation. Being in great prior health it takes at least 6 to 8 weeks to start feeling better and he would probably have to be put in a rehab center for that period of time.
I wish you the best.

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10 years 7 months ago #30267 by tglaze
Hello to all,
I have a situation that i really need some help with. I take care of my uncle who will be 71 next week. He has mental retardation, (not real bad just his mind is at id say that of a 10 or 11 year old) He is still very smart considering. He has lived in the same place his whole life and the whole community loves him to death. My delima is that he was just diagnosed with stage 2, high level bladder cancer. He went in and had a I believe its called a TUR about 2 weeks ago and they removed 2 tumors. but the pathology report came back that it is in the muscle. Now the urologist is pushing for the radical cycestomy, stating that radiation and chemo are the next option. My uncle has sugar and high blood pressure and he does live alone. I just go in every day and cook his meals for hime and clean and that kind of stuff. This dicsion would be much easier if i were making it for myself (not saying it would be easy) Just that it is really hard to make sure it is the right decsion for him is what is hard. What i am tring to fugure out is what is the quality of life and the care needed after such a major surgury. I really dont want to put him through such a major thing and have him scared to death just to have to put him in a nursing home for him to die from depression. at the same time I know there is No way he could handle chemo. He is very active and gets into everything. If anyone here could give me some insight as to what to do I would love to hear any ideas. Im just tring to look out for him and do what is best for him without making him suffer anymore than he has to. Well thanks for listening.

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