Prostate Cancer Survivors

 

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

 

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Re: MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

- a bit off thread -

Jon,

I'm a bit angry about this whole deal - and I'm afraid it's leaking into my text. I'm pissed at my first uro doc, I and a bit pissed at the second, but finally getting comfortable with my third. Though his mention of the possibility I'll have a second negative with a saturation biopsy at a PSA of 83 and the current level of pain I am going thru right now makes me contemplate whether my comfort level with him is fully justified. I can't tell if I need to pee or poop and in-between hourly urges it hurts. This 20 core is much worse than my 12 core was. And brutal is a good description of the difference. Pretty sure some reading this understand.

I've spoken with a doc who does come into these boards to read our stories. Gives him a perspective he'd otherwise miss. I suspect that may be one of the reasons he is open to discussion and willing to give feedback and answer questions he can. One thought that keeps coming into mind when dealing with this, is that attitude is 90% of the fight, so the docs try to keep it positive. To do that, sometimes the truth (the fact outcomes are so variable) needs to be kept in the background. And we're lead to calculators with lots of happy faces or biased to the up side. E.g., this thread: HT or RT seems like pretty common treatments, why are they left out? Do those treatments then generally point to a more worrisome cancer, a lower survival? I don't know the answer, but the owners of the page should say why they limit who should try the calculator; if for no other reason than to keep folk like me from assuming the worst... or, maybe they did somewhere in the fine print and I stopped reading too soon.

The one question I think we'd all ask is: will I be better off ignoring the cancer, or not. To RP or Not to RP: That is the question. The question medical science simply can't answer today.

Then there's the personal perspective. This is more a rant...

I haven't really been living the past few years due to fear of the future. I would have chosen to remove the gland just to have that fear removed. They do it minimally to reduce the effects of severe BPH; but when I asked for that option my doc laughed at me. Why? Because I couldn't communicate the issues I was having. How does a guy know he is peeing slowly? A urinal contest at a bar - that's how I finally figured out my flow was a fraction of others. And to think how many docs I complained to about dribbling, all said it was normal. But for a few minutes? So even the docs didn't listen. And now, years later, I still have issues that leave that fear intact: worse, the information reinforces my fears.

Yep - this whole thing makes me angry.

Re: MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

GW,
The more you read and understand the less angry you will become. Cancer is unpredictable with the information we know now. In a few more years when good DNA analysis is available, then a Doctor will be able to say with some certainty as to how the cancer will behave. The way it is done now is to look at the shape of cancer cells to see how deformed they are and use that to guess as to how bad the cancer is and what will happen. Not the best system and the reason why oncologists sometimes get surprised; pleasantly and unpleasantly.

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