Prostate Cancer Survivors

 

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

 

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MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

FYI - Interesting information - I input my information and it comes out to me having a 96% chance of living 15 years post surgery - Nothing was stated about additional treatments, RT or Hormones. For me, something to think about as 15 years brings me out to 84 years old!


Our post-radical prostatectomy nomogram can be used by patients after their surgical treatment for prostate cancer. Using a dynamic statistical formula, this nomogram predicts the probability of remaining cancer recurrence-free at two, five, seven, and ten years following surgery. This nomogram also predicts 15-year cancer-specific survival, meaning the likelihood that you will NOT die of prostate cancer within 15 years following surgery.

post-radical prostatectomy nomogram Link

https://www.mskcc.org/nomograms/prostate/post-op

Bobby Mac

Re: MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

Good find Bobby. Even better the prediction is good.

An observation I have is the maximum 100ng/ml for PSA. This follows with other sources that indicate most cancers are found with PSA well below 100. The link to men with pT3b Nx Mx pathology vs post op PSA also shows this trend: PSA >50 is rare in many PCa scenarios. Is it that PSA >100 generally means there isn't a better story to tell? Or is it there isn't enough men in this group to have good data?

Re: MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

GW -

Not sure what the answer is? I would guess that they don't have enough of a sample of >100.

Re: MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

I think there are a couple of messages that come from this nomogram:

If you have clinically localized prostate cancer the likelihood of dying from this disease in the next 15 years is very low.

If you have low risk prostate cancer the likelihood of having Extra Capsular Extension is much higher than you might imagine.

Example: 65 years old, PSA 10, 5 cores out of 16 positive with gleason 6 disease. This man would qualify for low risk prostate cancer yet he has a 50% chance of having ECE. I don't know of any Urologist that is telling men with these kind of #'s that if they have surgery they will only have a 50% chance of cure.

Fred

Re: MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

Fred, I'm in 100% agreement there. I've been asking docs about the MRI and if they see any reason to suspect ECE, and while the answers are all, no... the answers seem a bit vague, as if while they don't see evidence for ECE, they also don't see convincing evidence against. And we know a biopsy doesn't provide any clues, either.

What I have found - note I am not an expert by any means, the PCa learning curve is steep and there aren't any formal classes on it - is that it's only after RP can a doc actually begin to understand the scope of the disease in most men: pathology of margins the big indicator.

Does the uro doc puncture the urethra when doing biopsies, especially near the bladder interface? Can a biopsy pathologist tell if the core is near the bladder? Or is this info communicated by notes? What about the seminal area?

I just wish these docs would spend a bit more time discussing the issue rather than being a blank slate. Then again, there's probably not a lot they can say with certainty until it's all over and done with; i.e., RP post op pathology is in.

Re: MEMORIAL SLOAN NOMOGRAM - PROSTATE CANCER SURVIVAL

GW, I fully agree that doctors should be more informative whether they think we need to know those little details or not. Some of us would like much more detail even knowing it won't effect any outcome. It is just nice to know the details - at least for us engineer types. It is not that we are in judgment of anyone's knowledge but I find it a lot easier to go in confident and at ease when I at least know the reasons behind things being done to me and just what is being done. Some of those details are kept from us because what they have to do to you, especially during surgery is probably pretty brutal and could be interpreted as uncaring actions. I would still rather know the details than to have to use my imagination which is probably mostly in error. I often think this site would be a good knowledge base for a doctor to monitor. It would give a better insight to what his/her patients are feeling and going through. I don't suppose they would volunteer any answers to questions on the site but that would be a nice touch. Just like not knowing the real state of the cancer till after pathology has had a chance to butcher our sacred body parts, we mostly don't know what questions to ask until after it is over. Jon.

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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