An Apology, and latest PSA Results

glad you are doing great, must be a great feeling.

Perhaps there was an unfortunate misunderstand vis-a-vis your perception of treatment choice as the people here are pretty much always supportive of individual choices.

Yeah, some us us here have "minor" problems compared to others here and elsewhere... for now :)

Glad you're back, Skeeter. Your friend would be welcome, too, if we can do anything for him.

Steve, welcome back. Glad to hear the great news on your tests but I'm really sorry about your friend. As PeterDA said, your friend is certainly welcome here and you know we have a lot of folks here with outstanding knowledge about advanced PCa.

Jim

gedman said...
Given the reason for your departure, I'd say that we owe you the apology (and not the other way around).

-Gedman

No, really I overreacted to what I perceived was an "anti-proton" agenda from a couple of folks whom I am sure were actually well-intended in their remarks. I just took them the wrong way, I think. Any way, it doesn't matter. The board now seems much more open to a wide variety of treatment options, which I believe is essential for the newly diagnosed to feel confident in deciding his particular plan of treatment. As before, if anyone has questions or concerns re proton beam therapy, I'm happy to share my experience.

Welcome Skeeter, Im glad that your back with us. Congrats on the good results. If there was only one treatment that worked all the time that would be no discussion. Unfortunately none of the treatments are perfect. Everyone wants to think that they have made the best decision.

Sorry about your friend I know it is difficult to see those young people without their Mom.

I know your a great support for your buddy with the monster PCa. Let him know that he is welcome here.

Stay in touch.

Cajun Jeff

Congrats on your success and hopes for many more low numbers.

Steve

Skeeter I would like to say “welcome,” and that your anecdotal comments about your treatment can be helpful to others.   Congratulation on your low PSA, which is as-expected.   As time goes by, reporting of your late-term radiation side effects, which tend to be different than the short-term side effects, will be particularly valued by those seeking direct feedback from a proton beam patient. In all fairness, if someone comments about the scarcity of results data on proton beam therapy, I hope that you won’t take this as an attack on your treatment decision.   I personally feel it is a justified word of “caution” to offer newcomers Nobody argues that PBT isn’t safe or effective; only whether it is more safe or effective than the much less costly treatment options.   And this particular point about healthcare costs and the burden of medical and private insurance rates which we all share a responsibility for conscientiously utilizing (don’t we?) is particularly poignant when discussing treatment costs of low-risk cases which may not have needed treatment at all. These seem like fair points of discussion without negative inferences about any individual’s personal treatment choices.   The discussion, as you have pointed out in your own words, should be about helping the next guy see the big picture.   It’s not about anyone looking through their rear-view mirror.

Steve
Good for you! Fear and suspicion of the unknown is a very human trait. Guys like you are helping validate newer treatments. Thanks for taking a chance!
Bob

Welcome back Steve and congrats on your success.

Another member that has gone MIA, A Yooper, turned me on to a great song by Jason Aldean called "The Only Way I Know". One phrase in the song that stuck out the most for me was "I'm sticking with the one in side of me". I always think of that phrase as OUR treatment plan that we chose.

I am happy your stuck with the one inside of you!

Bill from Florida

stixandstonz said...
Glad you have returned, great numbers and I hope you continue to do well. I am glad to have another proton advocate on the board.

Regards,
Kris

Kris this is not directed at you personally. Just my opinion: When a new person comes to this board seeking information and treatment options: when there is a shift from informative and information when discussing treatment choices to advocacy of a treatment, the poster runs the risk of his post making someone very uncomfortable. Again, just my opinion

Semper Fi
Walt

dowstrategy said...

stixandstonz said...
Glad you have returned, great numbers and I hope you continue to do well. I am glad to have another proton advocate on the board.

Regards,
Kris

Kris this is not directed at you personally. Just my opinion: When a new person comes to this board seeking information and treatment options: when there is a shift from informative and information when discussing treatment choices to advocacy of a treatment, the poster runs the risk of his post making someone very uncomfortable. Again, just my opinion

Semper Fi
Walt

I tend to agree with this. Information vs. advocacy may be a good dividing line.

There have been a few times where I've been rather distraught from things said here, especially during my treatment plan development. Statements saying I'd better do this or that, or my RO had better agree to whatever, then seeing the doc and him saying, "those well meaning folks are somewhat misinformed, or have incomplete information, or may not realize the biases involved in certain studies", and on, and on. So I'm left in a quandary. I like and (mostly) trust the guys here, most with personal experience, yet contradicting what my doc is telling me. Having challenged the doc, and appreciating the solidity of his reply, I end up trusting and going with the doc.

Now, the challenge process has benefits. If the doc had some squishy or utterly dismissive response, I might have been more nervous and/or wanted to change docs. But with a good response, I become more confident in the doc's advice.

It did, and still sometimes does, make me a little queasy and uncomfortable when folks here state flatly that for such and such a situation some treatment is definitely the right one. No one knows that. Not us. Not the doctors. People posting here only share an abstract of all the info for their case, and just their interpretation of it. The doctors have the patient's whole story. So, when someone posts a plan here that seems questionable, it's very possible it's just misunderstanding what the doc actually said and what will actually happen.

I think we're at our best when we share our experiences, perhaps suggest things to ask doctors, even including possible treatment options, and sometimes just to lend a sympathetic ear. I liked having some good questions to ask when I went in for appointments. This forum should help people, reduce stress, and provide some calm in the raging storm.

My $0.02 worth...

I like, Steve, have, at times, right or wrong, felt there is a bias here against Proton therapy, I do feel that when I give information on Proton therapy, I am advocating that it is a viable choice. But this is just information, I have never said someone should have this as a primary treatment. I am merely expressing my opinion as to it's validity as a good treatment. I don't want to hijack Steve's thread, just wanted to welcome him back. Maybe "advocate" is a charged word, for this I apologize.