Latest Doctor Visit and a real shocker PSA reading

Todd,

I hope that David will understand how much you and so many others care about David, as well as our other brothers here on HW.

He can accept or reject other opinions on his treatment choices, but he should not "kill the messengers". There are men on here who have great wisdom and experience on many facets of PC, and in my opinion exceed some doctor's knowledge. Your personal journey had to be one of greatest testimonies to HT.

This is a fight for our lives, not fights with each other. I guess if we don't want opinions on our personal choices, we shouldn't post hundreds of threads about them.

I certainly respect each man's right to choose his treatment, but not his right to accuse all of us of slamming him, when it is really just a bunch of caring guys expressing our opinions.

Goodlife

Todd, you close with "your friend always"??? You don't act like any friend of mine. I don't care what you believe or don't believe in my case, what you call bluntess, is just common rudeness. I have never judged any of your situation, even when I had my own opinions about your case. Why? It's not my place. This will be the last time I say this to you, so it either sinks in, or it doesn't. My onclogist (who I started seeing close to a year ago now), never had any hint or inclination of what I thought or didn't think about HT. That subject wasn't even in any chart, as my last treatment disaster was SRT, and there was no discussion with that with my RO. I went to this doctor neutral on purpose, and based on his evaluation of my entire case, he has made his recomendaations. That's it, the rest of it is in your imagination. And I am not bashing HT, you have made that an issue far more that was ever intended. I see that it works very well for a good number of men, I have no problem with it when its deemed the best treatment for someone. So, please, dont' put words in my mouth. I have never advised a single person here at HW not to go on HT. There are lots of bad side effects and health issues with HT, my doctor has explained them all to me, so don't make it sound like a walk in the park. For some men, the side effects are light, and for others, very serious. I don't understand your open hostility towards me, so from point on, I will not answer anything you direct at me. My support toward you, and everyone else here at HW, has always been unconditional. You are playing by different rules than me, so be it. I hope sincerely, that the Provenge gives you the desired results. Its a new treatment, so it will be interesting to see how it plays out wit some one with serious stats like yours. Good luck, and more importantly, good result.

goodlife, i have never said that everyone is slamming me, please don't put words in my mouth. There are 2-4 here, that consistently go overboard betweein expressing their opinions and trying to cram it down a person's throat. I have gotten a lot of good advice on a lot of subjects over the years here at HW, and have tried to give some back in return. But people have to respect the choices of others, if one is to truly support another person. It's my life I am talking about here, my cancer, my doctors, and my choices, and ultimately, my outcome depending on how this aggressive cancer plays out. but i never said "all", there are so many good caring people here, and there are also a few that go overboard. there is a lot of combined experience here, which we all share, but none of us our medical professionals. just because a few here don't agree with my doctor's advice at this juncture, doesn't mean i have a bad doctor. my doctor has shown a level of personal care that is so rare in this time and age. I am not a number to him, I am a person with a real name, and he has taken the time to really dig into what ails me, and he's constantly thinking of what is best for me under the circumstances.  his level of care, has already improved my daily quality of life.  between him and his nurse, they are in constant contact with me, to make sure eveyrthing is going alright, not many doctors will bother to do that.  and the entire time i have been with him, never been asked for a single penny, never been asked for a co-pay, it's as if money wasn't remotely the issue.  he allows me ample time, to ask whatever questions i want, whatever theories i am thinking through, and helps me work through any fears i am harboring.  that's a great doctor.  just because my path isn't following some other's paths here, doesn't mean its wrong.  it's right for me, and that is all that matters.  i love other opinions, but i don't like them when they are expressed with rudeness and agrogance or contempt.  no one would like that thrown at them.  i don't treat others that way, and i dont' expect to be treated that way.  fortunately, the vast majority here at HW are not like that.

david

david

Post Edited (Purgatory) : 4/15/2012 6:22:19 PM (GMT-6)

Gee, now my well wishers are wanting to decide when my own thread should or shouldn't be locked? What's the world coming to?
My problem isn't diverse opinions, there are ways about expressing one's opinion without coming across as rude, and the way is to say an opinion without being judgmental. BTW, I don't have a problem with anything you have said, Ms. Worry Wort.

Perhaps some of those with the harsher opinions would be better off to ignore this thread, or any other thread I start, that might be a better solution. What's that old expression? If you don't have anything nice to say, they don't say it.

david

Purgatory said...
But people have to respect the choices of others, if one is to truly support another person. It's my life I am talking about here, my cancer, my doctors, and my choices, and ultimately, my outcome depending on how this aggressive cancer plays out. but i never said "all", there are so many good caring people here, and there are also a few that go overboard. there is a lot of combined experience here, which we all share, but none of us our medical professionals. just because a few here don't agree with my doctor's advice at this juncture, doesn't mean i have a bad doctor.

david

David,

You are absolutely correct in that we are not medical professionals and should not be giving advice in specific cases about treatment. I don't know your doctor but have to assume that he is much better informed than I am about PCa so that is about the end of story about advice as far as I am concerned. But I honestly don't recall anyone suggesting you had a bad doctor? I simply believe that having second and third opinions is a good thing in most medical matters. Before I decided on any kind of treatment for PCa I got several opinions, and wound up totally rejecting the advice of my urologist who recommended a radical prostatectomy.

As for HT, everyone I consulted recommended it in my case, regardless of whether the initial treatment was radiation or prostatectomy. Whether it slows progressions, or increases survival time, only time will tell. But from where I stand, seemed like the best shot, but perhaps that decision was made with more faith than facts.

As for criticizing the decision of others, I subscribe to the old saying, "Before you criticize someone, walk a mile in their shoes. That way when you do criticize them you'll be
a mile away and you'll have their shoes."

San Carlos

David:

I will keep you in my prayers.

Bob

 

Thanks to the people here and others, I was able to see arguably the best uro oncologist in the nation. He has over 180 published scientific articles on one subject. Prostate Cancer!!! He is president of A.S.C.O. We talked in great deal about treatments. The good, the bad, the ugly. There was 1 common denominator. Barring the miracle of science finding a cure, Prostate Cancer is Hormonal. Prostate Cancer feeds on TESTOSTERONE!!!!!!!!!! His expert opinion was that I either have my boys cut off or I never go off of lupron again. Why? Because if I do I will die faster. I will be in pain. Because even being HRPCa a great deal of the cancer still is hormone sensitive. Nothing that you say makes sense David. Chemo for PCa is largely for QOL. I watched a friend die. He was HRPCa. Almost from the get go. He did round after round of several different types chemo. It ate him up. Every three weeks he would go to the infusion room. He would go through it and after completing the process he would be okay for a while and then the pain would come back. He would start again. It never ended. He never lost hope but he lost the fight in 2 years.


Do you get that I care about you......
Do you understand that it tears me up inside seeing you sit back and wait as your P.S.A. keeps climbing and nothing gets done.......

There are fantastic drugs out there zytiga, provenge, mdv 3100, tasquinimad, ipilumimab, xl 184 is coming out. and many many more and your doctor wants you to do chemo first.


I am sick inside about this and you say I am not acting like a friend.... What the @#$% ever.

Your Doctor is going against every rule in the book and you act like he is a god..... Forget it David..... I'm Done

A General Question Regarding True Friends:

Do true friends merely provide the sympathy one craves or do true friends also include the obvious truth (when it is obvious) even though the recipient will turn on such friends?

Are friends just for the purpose of saying "attaboy?"

Each of us has to answer that in his own way.

Put another way, I would hope when we look in the mirror, we like what we see.

Mel

A Note to 142:

Thank you very much for backtracking and leaving this thread open. You made a good decision, responding to the request.

You have listened to folks here and I appreciate it.

I know things have become heated, but the world did not end and this has also been one of the most interesting threads ever on HW (the number of responses validates that claim).

This thread contains many PC issues and also some philosophical issues.

I realize this must be nerve-wracking for you and at some point you might have to say enough, but I appreciate the longer leash.

So, again, thank you

Mel

 

good point squirm...it took me 3 times before I found the one I liked and I plan on sticking with them for now.  Its hard to find one that seems to have a general interest in the patient instead of his pocketbook.  I hate feeling like a number. 

Mel,

Don't thank me, thank David. He is accepting more undeserved flak here than anyone should, in my opinion.

I am skeptical that there are as many "obvious truths" in the world of PCa as you might want to believe. But that is not a discussion point.

 

Hi David,

My dad seems to be doing fine. WE have not done a PSA since October - six weeks after hormone shot when PSA went from 8.4 to 1. He did okay with the radiation but is living with the side effects of bowel urgency and urine frequency. But he was prepared for it and the side effects seem to be releasing a little less control over his life everyday. His docs told him not to do PSA until six months after radiation and he is waiting a little longer since his radiation ended at christmas time.

I think what I find most inspiring about you is that regardless of what you are going through you always ask how the other is... not everyone is that way in life although this forum and the people on it seem to try to follow your footsteps and seeing the kindness makes the rough things in life easier.

I will continue to follow your journey and keep you in my thoughts. take care - daughter

daughter, your dad is a lucky man! my only daughter is a real daddy's girl, even at age 30. she still expects, and gets a valentine stuffed monkey everyyear. she has been my voice of reason sometimes during my various cancer battles, as she is willing to think outside her own personal connection to her dad, and look at things objectively.

i hope your dad's next psa reading is a good one. the bowel urgency and urine frequency issues post radiation are unfortunately all too common. since i was on a catheter the entire time on radiation and for a full year after, i was not effected by the urinary part. but had some close calls, and still do on rare occcasions on the bowel part. trust me, i know where every clean public bathroom is located within 15 miles of where i live, lol. if i have to go, i have to go.

let us know his next reading, and telling him others are asking about him. wishing you and your dad the very best.

david

juliet, thank you, i think you got that point very well, lol.

to be honest, i never thought about the guy part of the equation. i am not a competivie person by nature, nor a hang out with the guys kind of guy either, so perhaps you are right, might be some male ego at work, the roosters pecking at each other.

you made me smile at least, that's not always easy

david