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 To treat or not--to know or not 
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post To treat or not--to know or not
Hello friends,
My Tom has had a downturn. After being treated for a suspected UTI, I again found drops of blood in his depends. His GP (whom I really like and trust) initially thought about an ultrasound to check the bladder and prostate. However, after thought and discussion about what treatment would entail if we did find cancer, etc. he said he would not recommend any treatment (which would probably be painful and might further decrease his quality of life) therefore he didn't see the need to confirm or deny a diagnosis. But, of course, it's my decision. My question is two-fold. Tom is only 63 and while I do believe in a somewhat slow medicine approach, I might be willing to undertake a procedure if he could recover and have a decent quality of life (he is still fairly mobile and strong) for an EXTENDED period of time. I know many of your LOs have had major surgeries and done well--did age make any difference in your decisions?
Secondly, would knowing Tom's complete diagnosis make any difference in how we would treat him for quality of life issues? Thanks, KMP

Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC

Wed Oct 19, 2011 10:34 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: To treat or not--to know or not
I would not have the tests done for Coy. But he is 85, not 63! What a hard choice.

I don't know what to advise you, but I do want to send hugs to you as you struggle with this tough challenge. Whatever you decide will be "right."

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Wed Oct 19, 2011 11:15 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: To treat or not--to know or not
I think I would get the tests done as they are not painful tests. Then you'll have more information as to whether it's cancer or something else.

Wed Oct 19, 2011 12:52 pm

Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: To treat or not--to know or not
My husband was only 72, too young but not as young as yours. When he got the pneumonia that I decided not to treat, he had already lost most quality of life even had he returned to baseline which I thought he would not. I would think that quality of life now and projected would be more a factor than age.

Wed Oct 19, 2011 1:03 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: To treat or not--to know or not
Frank is 71, has no quality of life, so I know what I'd do for us, but 63 is young and you're the only one who can judge his quality of life. I might agree with Robin, knowing what is causing the problem might make it easier for you to weight the pros and cons and the "unknow". Good luck.

Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.

Wed Oct 19, 2011 2:47 pm

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: To treat or not--to know or not
How hard for you to have to make a decision like this…

But, I feel….as someone who will one day find himself in your husbands position….

that you….are concerned that you make the right decision…

I am thinking that the right decision….

Is the one you will make….

Please make one….

don't let Lewy control your lives….you and your husband control your lives….

I feel good you are there asking questions and making decisions….thank you

Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years

Wed Oct 19, 2011 2:58 pm

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: To treat or not--to know or not
Kathy, maybe to put your mind at rest a little. My 85 year old Dad has had several UTI's and has almost constant blood in his catheter bag. His prostate is grossly enlarged, but there is no cancer there. Dad gets a UTI almost every other week. At first, we were very concerned about the blood being there almost constantly (some days worse than others), but, though he is a little anemic, the blood in the urine does not seem to be causing him any major concern. Try not to worry - wait until the test results come back if that is what you decide to do. Then set out the plan of action. I hope Tom's situation turns out to be similar to Dads. Keep us updated
Ger x

cared for Dad who passed away on January 28th 2013 R.I.P.

Wed Oct 19, 2011 7:17 pm

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: To treat or not--to know or not
really tough decision.. and i agree with craig, what ever you choose will be the right one...

thinking of you both~~~

sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Wed Oct 19, 2011 7:48 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: To treat or not--to know or not
Kathy, you both are in my prayers.
Is there an obligation to move forward with treatment if you do the tests? Will tests provide enough new information to help you and the GP make future wiser decisions that could be less painful and invasive than surgery?
If you feel comfortable with the answers to those 2 questions, the tests sound reasonable.
You can do this. One step at a time. We are all behind you and pulling for you.
Hug to you,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Thu Oct 20, 2011 7:50 pm

Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: To treat or not--to know or not
Thank you all for your insightful replies. I have decided to have the ultrasound, which may or may not reveal anything, but certainly can't do any harm. Hopefully, it will help with other choices. I'll post again as things progress. Also, thank you for the good wishes.

Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC

Sat Oct 22, 2011 1:01 pm
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