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 Cancer treatment 
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Joined: Thu Jan 18, 2007 11:38 pm
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Post Cancer treatment
Hi everyone,
Something has just developed and I thought I'd write and get some feedback. My sister took my father to the docter to check on a skin cancer - which they were going to remove under a local in the office. While there they discovered a growth in his mouth which is of great concern to the doctor. My sister explained that Dad had LBD and that he can't be given narcotic pain killers and/or go under general anesthesia. The drs response was we'll see when we get the results of the biopsy. My sister told him no surgery under a general. My dad is in the last stages of LBD - he was just diagnosed in Oct. but he has physically declined in the last year. The only thing he does for himself is eat - he gets around a little but it is usually shakey and falls are more frequent. It is my belief that if they do surgery he won't recover and what quality of life he now enjoys will be gone. He is happy in his world. Most likely after surgery he would go to a nursing home and that would probably be it. If the cancer is slow growing what would be the point of doing the surgery and if you do the surgery and he ends up totally incapacitated what would be the point in that. Are we out of line? Have we considered everything? I feel a little lost.

Thanks,
Kani

Not really sure what topic this should go under.


Wed Nov 07, 2007 1:14 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Your decision to forego treatment sounds reasonable. Still makes sense to get a biopsy.

Has your father made his wishes known with regard to: feeding tube, intubation, brain donation??


Wed Nov 07, 2007 1:46 pm
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Joined: Thu Jan 18, 2007 11:38 pm
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robin,
Yes we know what he wants regarding feeding tubes etc. The brain thing though he didn't ever discuss, by the time we knew what he had, he no longer could make any of those decisions. Thanks for the feedback.

Kani


Wed Nov 07, 2007 3:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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The next of kin can also sign him up for brain donation.


Wed Nov 07, 2007 4:39 pm
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Joined: Mon Jan 15, 2007 12:00 pm
Posts: 25
Location: Washington state
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Hi Kani,
My mother had an operation to remove a non malignant growth on her tongue. She was 89 at the time and she and my dad wanted the operation. (Her mother had died of throat ca or something in that area). At the time of the surgery she was having short term memory loss, but had a wonderful quality of life and was enjoying hers. She had a major stroke 6 days after the operation and never regained her speech, lost her sense of balance so she was fearful of walking anywhere and her mental status declined greatly. She lived for 7 years after that and obviously suffered from some sort of dementia but we could never tell because she couldn't speak to us, or even respond reliably to yes and no questions.
My father is 95 with LBD and with what I know about the danger of the anesthesia and general danger of any surgery at his age I would certainly not want a surgery for even a slow growing malignant tumor, but that is just my opinion. My thoughts are with you and your family for the decision you're being asked to make.
Rita


Thu Nov 08, 2007 11:02 am
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Joined: Tue Aug 28, 2007 7:58 am
Posts: 33
Location: Pennsylvania
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Hi Kani,
I wrote this a few weeks ago.

It's been the month from hell. It started with a UTI which ended up being caused by Mom's Lymphoma. Turns out the tumor has grown quite large and was blocking the urethra (please note I'm not very good with medical terms, I spell em as I hear em but I think you'll know what I'm talking about ) which was causing the kidney to fill with all kinds of fun stuff and in turn causing the UTI's. They decided to put a stent in so they could get rid of all the junk in the kidney, also it would keep the urethra open so no more UTI's. After the initial procedure Mom went into septic shock, we thought we lost her. She did pull through but it was a week long hospital stay, raging fevers, up and down blood pressure. She has lost 10 lbs and is now down to about 96, she can no longer walk and is confined to a wheelchair and to top it off her dementia is so much worse. Last night I asked her if she knew my name and she answered "No, I'm sorry I don't". I wanted to cry. Instead I told her my name (same as hers by the way) and went on to other things. We can't treat the cancer, no way I'm putting her through chemo, radiation or any other drug that can mess with her mind. She can't take it. We have decided as a family to keep her as comfortable as possible and keep trying to work with her as far as the walking, weight and memory go. They say they will have to change the stent (or stint, never could figure that one out either) in the end of Dec or beginning of Jan but it won't be so traumatic and she won't need to go under. We'll see about that when the time comes.

She has not recovered mentally at all, has only been worse. Her weight as of Sunday was 94. I believe she is nearing the end and I do believe that going under anesthesia for the placement of the stint played a major part in her decline. So I do understand how you feel. I am sorry. There is no "right" answer.
Patty


Thu Nov 08, 2007 1:22 pm
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Joined: Tue Jun 26, 2007 2:29 am
Posts: 85
Location: Jacksonville, Florida
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When the biopsy comes back, there will be some indication of the aggressiveness of the cancer. Get a copy of the biopsy and talk with a pathologist about the prognosis. They can be quite helpful in explaining what will happen if you don't have the surgery. You also have to get a second opinion. It sounds like this doctor has decided to operate, no matter what you think. You can say no and probably should. Just get as much info as possible, so you don't beat yourself up as things progress.

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Linda
Father has LBD, lives 400 miles away


Sun Nov 11, 2007 9:15 am
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Patty,
Talk to the doctor about your current and future options with pain
management so that you understand the choices available to the doctor,
and also so the doctor understands your wishes and those of the patient.
I am sorry that this is happening to your Mother but I think not treating the cancer is best for your Mom , I know if it were me and I had to decided for my Mom I would think the same from the way you describe your Mother. Good Luck!


Sun Nov 11, 2007 6:44 pm

Joined: Thu Jan 18, 2007 11:38 pm
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Hi everyone,
I've appreciated all the information and advice I've received thus far. Today my dad saw the radiation oncologist - a very nice doctor and I will say concerned physician, when I told him my dad had lbd he admitted he knew nothing about it and took the time to contact my dad's neurologist for more information. Anyway he would like to do radiation - says there is a 85-90 cure rate and that if we do nothing it will quickly start to erode the soft palate and that will be very painful. They are doing a cat scan tomorrow, if it proves to be more involved than we thought we will not proceed, if it is in the beginning stages we'll try. It is a 15 minute treatment for 7 weeks. He feels confident that it will work and that dad will do well. I have my doubts but at any time Dad can't tolerate a procedure it stops and then we will manage pain and involve hospice. I feel torn - I'm not sure I'm doing the right thing but I also don't want him to suffer if that isn't necessary. I also feel that I am swimming against a very strong current to even ask questions is to rock the boat, although this doc was happy that family at least cared enough to ask questions. I hate this disease isn't it enough that our loves one suffer with it but that they also suffer with any number of other problems. I also hate that it seems like you spend a lot of time trying to educate people about it - all the dementias are lumped together.

Kani


Wed Nov 14, 2007 8:23 pm
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Kani0621 wrote:
Today my dad saw the radiation oncologist -
Kani


Hi Kani, Glad you were able to get the appointment behind you and now you know what you are dealing with, at least with the radiation there is no surgery involved and if it will give some quality of life to you Dad thats the best. Sounds to me you are doing the best you know how to and thats what counts, I wish your Dad well with the CT and I will hope for the best outcome, I was impressed when you said the Dr took the time to call the Neuro.


Wed Nov 14, 2007 9:02 pm

Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Kani,
That all sounds very positive. Best wishes to you and your father.
Robin


Thu Nov 15, 2007 12:48 am
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Joined: Thu Jan 18, 2007 11:38 pm
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Hi everyone,
Well another hiccup. My dad did not tolerate the ct scan very well. It seems he was unable to lie flat because of his stooped position and rigidity. They were able to complete it but not without a lot of pain for my dad. This is my concern how is he going to be able to tolerate treatment for 5x a week for 7 weeks? we are also having trouble finding transportation to and from and I'm concerned at what point treatment will up his anxiety level and cause new behavior problems. After about a year things are looking up in that area. And if that should become a problem what would happen if his behavior would cause him to have to leave the facility. I've asked the doctor to look for alternative treatments that probably won't cure the cancer but could possibly slow it down, control it somewhat and provide him some some level of comfort for awhile. The treatment would also have to be done only once or twice. I'm praying that he comes up with something.

Kani


Fri Nov 16, 2007 2:06 pm
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Joined: Wed May 30, 2007 12:09 pm
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Hi Kani,

My mother has the same problem of not being able to lie on her back. When she had the MRI it was very difficult. On doctors visits they can never get her to lay flat on the table...very difficult to get her on the table..This is causing a BIG problem in her sleeping position as she has only 1 and that is propped up on her side...Her ear gets sore from laying on it all the time. I wondered if anyone else had that problem.

I hope the best for your dad Kani....

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Fri Nov 16, 2007 4:33 pm
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