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Biopsy if in early stage of Dementia

Posted , 5 users are following.

jwrhn1951
jwrhn1951

I'm 65 male, PSA has been around 7-8 for past few years but went to 10 between March and May. I refused biopsy when it was 8 saying if it ever got to 10 I'd get one. I've been scheduled for one in a few weeks.

I have been diagnosed with early stage dementia caused primarily by a TBI, additionaly I had genetic testing within the last year for iron overload and was found to have a genetic mutation the greatly increases the probability that I will get Parkinson's, ALS or Altzheimer's...the old brain is not in the best shape smile.

I have young wife and boy and girl 9 & 10 and therefore the quality of life while I still have the mental capacity to enjoy it is far more important to me than the quanity...I'd rather be dead than go on for years with the brain of a one year old and put my family through that.

I've decided to monitor my mental status but not have biopsies or treatment for the prostrate (or any other medical condition that might come up).

I would be curious if anyone else has been a similar situation and how they handled it.

I've decided

 

2 likes, 6 replies

6 Replies

  • elementalist
    elementalist jwrhn1951

    Posted

    Well, for ease of use, I am going to assume (my apologies for that) that your name is John, based on your user name. I do not have a similar situation, other than I have prostate cancer. I am with you on the decision of rejection of treatment. Live your life to the fullest that you are able to with the best health that you can. My last PSA reading was ~120 or so and falling. Since my diagnosis in January of this year, I had yet to see or hear of someone with a PSA greater than I had initially when they tested me. It was 9,708. Now, I believe it was dudley, in this thread, who told me of someone with a PSA of greater than 23,000. Wow! I say that sort of tongue-in-cheek, because I don't know if 23,000 merits a "wow!", I really don't. I do know one thing, that I am not alone, because the Drs. don't really seem to know either. So, I would strongly support you in your decision and your desire to have quality time with your family. I am trying to get myself into a similar situation. Currently I am living in a home and I am trying to sell it. The problem is that this place is really not configured very well for a family. It has been used for more than 10 years as a supportive living home and now as a rooming house. I had to cease the other business last year, but not because I was aware that I had cancer. I just didn't feel that I could keep on with it, and all of the trials that come with running a place like I was, and taking care of sick people. Anyway, I can't go live in our family home until I sell this one, and it doesn't appear as though that will take place quickly. I am just a couple of years younger than you, born in '54, and I desperately want to be in the company of my loved ones, my children, my wife, etc. I hope and pray for your continued strength and that you will maintain mental clarity long into the future. You didn't say in your post whether or not you have been diagnosed with PCA, so I am assuming you haven't, and that is why you wish to hold off on the biopsy. Biopsies are notorious for releasing cancer into the rest of an otherwise healthy body. My prayers are with you sir, and I say I thnk you are making the right decisions. Bye for now.
    • elementalist
      elementalist

      Posted

      Sorry, John, I did not mean dudley in this "thread". I meant in this "forum". He seems to be fairly active here. Cheers.
    • Dudley71081
      Dudley71081 elementalist

      Posted

      Hello John ,

      Without trawling through a considerable number of Posts I cannot be 100% sure, but I think it was Carl,  who having mentioned the 23000 PSA reading that EleMan refers to,  in another thread,  would be the stand out Guy to provide counsel and support to you.

      Knowing what little I do,  I would nonetheless venture that in your particular case the rigours of diagnosis/treatment,  if indeed you have got PC,  plus the side-effects of that treatnent ... might be the straw that could break the camel's back in being able to deal with your life in general as it now is.

      If you can put it out of your mind and In view of your general health status , there would seem to be considerable wholistic benefit in not pursuing investigations into PC.  

      In my case,  I ignored indicators and mild symptoms for about 8 years.   And given life over,  I would do it again.   Now,  post treatment and a relatively poor comparison to what I once was,  I look back and think  ' I am glad I did that '.  

      When due to unignorable symptoms I ultimately fronted up for treatment my Urologist commented that he thought I'd had PC for the past 20 years anyway.  

      So, what the hay?  

      Yes life is precious,  but so is the quality of it and if I were in your particular shoes, I would not be impairing that quality further by pursuing the possibility of PC.

      My heart goes out to both yourself and Elementalist.  Hang in there Guys! I pray for your comfort and consolation through the difficult times you are facing.

      With Best Regards

      Dudley

    • david41094
      david41094 Dudley71081

      Posted

      I am curious to read your post Dudley. Have you changed your position? I always thought you were an advocate of early treatment yet your post suggests otherwise. I hope you are not too down - your side effects should be improving soon.

      In answer to John (if that is his name), I would definitely not consider a biopsy at this stage. After two months I am still in some discomfort from mine and it now looks like I need a template biopsy - I feel that they will have taken out so much of my prostate that they might as well remove it!

      All the best.

    • Dudley71081
      Dudley71081 david41094

      Posted

      Hello again David,

      In short,   yes I have.  An exchange between Carl and myself might possibly have escaped your notice;  but we debated this and I was lucky to receive from him reference to various articles,  together with His interpretation of some points therein that definitely melded my previously fluid,  but albeit  B& W boundaries,  into various shades of grey.  

      Although I am not entirely a born-again W&W,  if you were to invite me to tea,  I would definitely eat a slice of the pie you might have in mind.  

      Being an occasional participant in this Forum has definitely broadened my perceptions beyond the Briti-cised Australian Public Health Service's  ( albeit  faultlessly motivated and well-meaning ) paternalistic and occasionally blinkered/ Draconian overviews.  I acknowledge that I was not able to receive these arguments with equanimity from yourself and in good faith proffer an apology which I hope you will accept.  Had you had M.D. After your name,  I think things might well have been different. ( Which only goes to show what Paternalism-fodder I really am ! ).

      It's good to hear from you David.  I am very pleased to know you also have permitted yourself to drift into a grey zone.  If you absolutely need it,  then  imperfect as it is, treatment is the only thing which will keep you alive.  And like all of us,  you are damned if you do and you are damned if you don't.   It is simply a matter of the unknowable,  i. e. to what degree.   I  wish you all the very best.   Go well.

      With Kind Regards,

      Dudley

       

  • jwrhn1951
    jwrhn1951

    Posted

    Actually its Joe.

    Just wanted to thank everyone for their understanding and support. Was on another site and everyone there was telling me dont worry maybe they will find a cure for the dementia and I should get a biopsy, one questioned why I was even posting and opined I was an idiot with a death wish. Obviously none of those folks had ever met or cared for anyone with end stage dementia which is a much crueler death, espically on the family, than any cancer I have ever seen..

    I am glad to learn I'm not the only one that values quality over quanity of life. 

    Thanks again for the kind words of support.

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