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Questions on Grandfather

13 years 6 months ago #6182 by Shaggy
Pat - Sorry I have been gone so long. Grandpa is up visiting now as a matter of fact. I am waiting until my Aunt comes up to get him to ask the rest of the questions as he just kind of goes with the flow anymore. He had 1 week of radiation left the last time I saw him, but he appears much more frail and lathargic now. He appears to be eating quite well, so that is good. Hopefully he'll do as he so often does and just perk up one day and be back to his old self.

I'll let you know if I get any more info on the idea of a different strain.


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13 years 7 months ago #5913 by Patricia
Hi Chris....glad you had a positive experience with Cleveland...they're really on top of all things urological. I'm wondering about the "strain" he's referring to....did he happen to say squamal cell or anything of that nature?..Just curious. Pat

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13 years 7 months ago #5887 by Shaggy
Thought that I'd give a short update. When I first got here I was in "panic" mode, trying to learn as much as I could in the shortest amount of time possible. From what I could figure, time was of the essence.

After some good discussions with Patricia, (Thanks) my grandfather went in to see another Dr. (Gilligan) at the Cleveland Clinic. This Dr. has been very honest, and very optimistic it sounds like. He sounded very surprised by the previous Dr.s ideas, especially when he asked what else was wrong with him and he said nothing! I do miss not being there in person, but I know that my Aunt is asking all of the questions that she can to get all of the answers that we need. Radiation has ended, and it seems to be going well. It sounds as if they are waiting 2 weeks for him to heal up some from the radiation, and this Dr. is recommending that he go through some chemo sometime in the future. Not sure what one yet, but hopefully he'll have another appointment next week with his options. This Dr. is not sure how the Dr. that did his surgery for bladder stones missed this cancer!! Only thing I'm not sure of is that this Dr. seems to think that this BC is something of an unusual strain. Not sure why that is right now, just what I have been told.

This new Dr. has put me in better spirits, as well as the rest of the family I believe. Hopefully Grandpa feels the same way!

Thanks for all of the support!

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13 years 7 months ago #5516 by Patricia
I hate to even reply here because we have three cases of total mismanagement by unqualified physicians...and Melodie your grandmother is amazing...how she made it through is anybodys guess. The bottom line is with the older patient most qualified surgeons want to go the least invasive route to preserve some quality of life for the patient. I find that it takes a lot of time to do the research...but a start is to contact your major cancer centers first and if there is not one near you or your not willing to travel..then contact your major hospitals...pull up the physicians list and see if there is anyone who specializes in bladder cancer. I happen to live in a major city where there is absolutely noone who has done an Internal pouch of any kind. The big bucks is in Prostate cancer.
And i fully understand not being able to talk an 80 yr old out of anything or even suggest that you might actually have some knowledge. Being a caregiver can be just as grueling as the surgery on the patient. My own father ignored his cardiologists claims that he could control his symptoms with medications and went for the by-pass surgery. It didn't go well...he had to be reopened immediately after he got to ICU as he was pouring out blood through one of his tubes...they stroked him out twice plus a pulmonary embolism...then they intubated him for 11 days. His new wife walked out on him and i became primary caregiver to part man part vegetable. They kept him alive but he went from a re-hab facility to a psychiatric facility to an Alzheimers unit.....and the story continues but you don't need to hear that.
I guess sometimes you just can't make a difference but you've tried.

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13 years 7 months ago #5514 by Melodie
Shaggy and Harleygirl,

Just throwing my two cents in in regard to the aged going thru tough surgery. My mother-in-law has lived with bladder cancer for 35 years now. Years ago at age 52 she was dx and told to have her bladder removed, she refushed and did chemo, the type where they injected the bladder with some drug and they would scrape the bladder. She had superficial cancer but this treatment went on for years in an effort to spare her bladder. Finally at age 79, about 8 years ago the doc. told her there was nothing left he could do but remove the bladder.

I didn't think anything of it at the time because I wasn't closely tied in on her surgery plan, but surprised now to know that her doc. at her age wanted to give her a neobladder rather than a ilieum conduit, (bag on the side). She was a strong woman and he felt she could handle the surgery. Twice during the surgery she almost died as her heart stopped and so they cut short the time in the OR....so they actually got the neobladder constructed and in but did not have time to get it connected properly to the urethera....consequently, although she had a new bladder, she had no way to control contience. They doctor wanted her to return later so he could finish the job, thinking she would have a better qualty of life but she refused. After she left the hospital she was in so much pain she regreted the surgery and had a very difficult time adjusting to her new situation. Some of us in the family thought she had given up as she would barely eat or drink, or walk or even talk. Finally, after a month, she decidied to turn things around. Since then she uses Depends and has to change them every two hours....day or nite. She seldom complains about her situation and is still very much a go getter, even now at 87. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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13 years 7 months ago #5513 by Shaggy
Thanks Harleygirl.  I don't think that he'll have the surgery at all.  He has said that he doesn't want it, and that he doesn't feel that he can survive a majory surgery such as that, although he is in pretty good shape for a man of his age.  So basically my quest now is to figure out how to stop the spread if possible, and give him as much time as possible here with us, and hope that he is as pain free as possible.  And you're right on finding the right person.  My aunt asked the Hospital who specialized in Bladder cancer there, and, well...we don't have a "Specialist".  To me, that is not good.  So we are going to try to figure a few things out as he continues his radiation, and hopefully find someone to take another look at him with some fresh ideas.

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