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@bens1 I think your exactly right. I like all the comments. I appreciate everyone's input. But as you say, it inspires me to go dig deeper. I also make a list of all my concerns and questions and take that to my Dr visit. I am not holding anyone accountable on this site. I just like the straight up responses. My wife's cancer Facebook page wanted positive information only. I didn't find anyone coming on the site with a wish to degrade anyone. But it was all feel good stuff. Someone would come on and ask how everyone slept. ?? I think an extra button like "not helpful" might flag those for the moderator to review.
Replies to "@bens1 I think your exactly right. I like all the comments. I appreciate everyone's input. But..."
@tuckerp Funny how you mention the GBM site, with only positive comments allowed.
My friend’s son had GBM and was being treated in Houston (not MD Anderson, but the ‘other’ cancer hospital whose name escapes me) by an Asian doctor with a very heavy accent. He was a very clinical type, never joked and rarely smiled.
When my friend’s son asked him what the next steps would be after radiation, he looked at him and said ‘You be dead in 14 months no matter what you do’…
The kid was stunned but immediately went to the chief of radiology and fired the doctor over the comment. He was quickly reassigned another clinician.
Don’t know what happened to the first doc, but c’mon man, give your patients HOPE at the very least!! Perhaps some comments on the forum come off that way to some individuals - a hard truth they simply cannot accept?? My friend’s son certainly couldn’t accept it and he fought like hell; he lasted 18 months - 4 months more than predicted.
Don’t know if this was a pyrrhic victory for him because those 4 extra months were the absolute worst…
Phil
@tuckerp I'm sorry for everything the two of you went through. Some cancers genuinely are like that.
The challenge for ours is that treatments have changed so fast that no one's quite sure what our prognosis is any more: some, like my initial medical team, err on the side of avoiding false hope, and give too negative an outlook (I believed in 2021 that I might not even be alive by 2026, and my family and I had to deal with processing that). Other oncologists believe we've reached a point where oligometastatic prostate cancer might even be "curable" (really, long-term remission), while polymetastatic prostate cancer might be manageable indefinitely as new treatments keep emerging.
So unlike some other types of advanced cancer, we do genuinely have hope now, but not certainty (or even clarity). Advanced prostate cancer treatment is crossing a threshold: some oncologists and urologists are hesitating until they can be sure the new treatment practices aren't just a flash in the pan and give give durable results, while others are leaping through with both feet into a future that's still hazy.
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It actually is probably better for everyone if you see a post that violates the guidelines just to click on the three dots at the bottom right and report the post to a moderator.