Newly diagnosed also - dont' know what to expect yet (first post too)

So don't take my word for it...I did say "it seems". Look on unreliable sources like Clevaland Clinic and Mayo. Nor did I say side effects are permanent...they still exist . To think that major surgery like radical prostatectomy and /or radiation represent minor glitches in life is to hide your head in the sand. Not to say that they should not be done or cannot be curative, but there are side effects and they are life altering....you know" your life will be different from now on".

Cooper, I agree with Allen on a whole host of things on this thread. Namely:

1. Your pathology is "probably" correct. But, "probably" does not cut it for me. Why don't you just go to Epstein or Bostwick and get it right! In fact, Dr. Epstein says that 3 out of 1000 men who are diagnosed with PCa don't have it at all. This is likely not you but...you sure don't want to be one of those three guys who goes for an unnecessary radical treatment!

2. Your urologist does not seem fully informed about the options available to you as a favorable intermediate risk guy. That's not totally surprising as I guess it's too much to expect a urologist to know everything. However, it behooves you (if you want to do this right) to contact doctors who specialize in HDR Brachy, SBRT and LDR Brachy. These have equal cure rates to the options your urologist discussed but with a lower chance of onerous side effects. We can help you with references if you want them.

3. The statement about surgical and radiation SE's being the same after 5-10 years is simply incorrect according to widely published data. They MAY be the same but...the odds are that the radiation options will give you a lower chance of ED and incontinence.

Jim

P. S. I hope your uro did not definitely say that your cancer was "genetic". It may be genetic or may not...he certainly cannot say that with certainty based on what he has seen.

Rectal toxicity is the biggie for me. Hence the use of hydrogel spacers by some ROs these days..you can look it up.

I will only share my personal experience. I chose surgery, and came out without significant side effects. I drip a little occasionally, with no discernible pattern. No big deal. 8 months after surgery, I have no ED, with 'good enough' erections without pills, and with daily 5 mg cialis I have really good erections whenever required.

No one is going to convince me that I'm an outlier. Here's what my surgeon told me when we had the SE effect conversation before surgery...and before I decided on surgery. As I recall the conversation, he said that for patients with uncomplicated surgeries (no issues with taking partial nerve bundles, for example), he has seen patients generally move "down 1 step on the ED ladder". So, if you have no issues at all, then 1 step down could be occasional minor inconvenience type issues after. If you need drugs every time, to even have a chance, then you're looking at needing pumps/shots after. And similar outcomes regarding continence.

Historically, there has been a belief that radiation therapies can lead to issues many years down the road, which is why surgery was recommended for men under 60 who would otherwise live more than 20 years. Those protocols are somewhat going away because of improvements in focusing the beams, etc. That being said, some of the newer radiation therapies haven't been around long enough to have 20 years of comparative data. And before I get slammed for saying that, I'm aware there are some good 10 year studies that suggest nothing is going on after 10 years, which sounds really good for the next 10 years.

Cooper, in the end this is a highly personal decision that each of us make based on our own mix of knowledge, intuition, family or friend history, and who knows what. There are, ultimately no right or wrong answers. Your answer is the one that works for you, and you're willing to accept whatever outcome you get. If you're not sure you can handle the 'worst case' outcome, then maybe you're not ready to decide.

OK people. After all the talk about second opinions...no, let's say Bostwick or Epstein opinions, I assume each of these labs have published papers in which the opinion of the pathology by a single person...not someone in the group...but Epstein himself for example...has been shown to be in disagreement with another outside pathologist , but in agreement with the final pathology after radical prostatectomy. Where and when? Cite the publications. Do they reflect the common wisdom that surgical pathology upgrades the other pathology 30% of the time , I think that's the figure. or are their evaluations not subject to that upgrading?

Can I suggest we have this discussion on a separate thread, rather than gumming up the works for our newly diagnosed poster? I'm not saying it's not important information, but given how everyone's head is spinning after getting diagnosed, I don't see the benefit for him by talking about this here...

Cooper, Dunno, something isn't right.
First of all, the number one thing you need to know is that you don't always get all f your options from the urologist that diagnosed you. It's up to you yo learn, and take control. You may well be a candidate for AS at some institutions. You also are probably (I'm not a doctor) a candidate for brachytherapy (seeds), and SBRT (like Cyberknife. You have many options.
My Dr told me nobody in my area did Brachy anymore. I did my own research and found it couldn't be further from the truth. So listen man, take control, darn it, don't take the Drs word for it as gospel.

Also, everyone is different, but the vast majority of guys have 3 priorities in this order...
1. Cure
2. Continence
3. No ED

YIU HAVE A GREAT CHANCE OF CURE.
I believe that in the hands of a good, HIGHLY Experienced surgeon, the chances of you being fully continent are high.
ED can be more of a struggle for some guys, but the pills often take care of that.

Make sure you consult with at least one experienced surgeon, and at least one, really 2, experienced radiologists.

There is life after Prostate cancer, do the work, don't just listen to the doctors.

Tall Allen said...
cooper-

Once again - the second opinion must be from Bostwick or Epstein - they are the gold standard. This is because even in big hospitals like Emory, the pathologists must be able to read all kinds of tissue and fluid samples from every kind of disease. They will never be as good at reading prostate tissue as someone who only does that. They are the ones who wrote the book. Just tell your urologists to overnight the slides to one of those labs - you might have to pay about $200 out of pocket if your insurance doesn't cover it. It's worth it.

Your doctor is not well-informed as to all your options, which is why you need to be. You will have to make the effort to go out and interview doctors that specialize in all the other treatments that Jim mentioned. Then you will be able to make a good decision for yourself. This will take some time and some effort on your part.

Thanks for the nudge on this. I had called the urologist today and asked about a 2nd opinion but I had not picked up on the choices of Bostwick or Epstein. Alas - a side effect of the head injury I got while in the service is not remembering things.

This afternoon I contact Bostwick and within a few hours they sent me a sheet explaining what was needed. I'll see if I can forward it to the urologist to see if what they are asking for is possible. I have no idea of the costs yet.

Not to stray off of topic too far here, but speaking of costs: is prostate cancer where they have to kill or remove the prostrate something that would require expensive medications for years afterwards? Just curious on that part as I have a long road before I on the downhill side of this. Thanks everyone...

Cooper, you're either low or low-intermediate risk, which means you're probably "once and done": treat it, and then a PSA every 3 months for a year or two, then every 6 months for another year or two, then annually after that.

Now, if the axe drops and things go crazy down the road, then who knows? The odds of that happening with your initial stats are vanishingly low.

Cooper,

I think any therapy you choose is likely to be highly curative, but I did want to correct your numbers. For "favorable intermediate risk" (GS 3+4) men like yourself, I am looking at the following rates of 5-year biochemical recurrence-free survival from recently published data at some top institutions:

Surgery: 86% (Thomas Ahlering,UCIrvine)
SBRT: 93.5% (Alan Katz)
HDR Brachy: 94.4% (John Hayes, GammaWest)
LDR Brachy: 90% (Jay Ciezki, Cleveland Clinic)
IMRT: 86.9% for all intermediate risk (SUNY Downstate Medical Center)
(I can't find in my files the IMRT cancer control rates for GS 3+4 broken out separately, but they are likely to be better.)

Dr. Ahlering is one of the top, highest volume robotic prostate surgeons in the country.

This is why it's always important to get opinions from doctors in each specialty. It is unreasonable to expect that a doctor in one specialty will really keep up on the other specialties.

- Allen

Cooper, I went back to work 3 weeks after RALP. In retrospect, it was too early, it was probably at least a month after I went back that I really felt able to do most things. My job isn't particularly strenuous, but it has it's times. It's very individual, listening to you body and paying attention to what it's telling you.

If you're like me, and sitting around just isn't in your nature, then (particularly in winter time), the time off will drive you nuts. I mostly went back to work because of how awful daytime TV is.

Had mine removed on a Thursday and went back to work 10 days later with no issues. I work in IT and push a mouse and I am not having any issues. Just a bit of leaking. If had to stay home much longer I would have gone crazy. Once the cath was removed, I improved almost over night. In December I start 8 weeks of radiation and I plan to work all the way though it. Go back to work when you feel up to it and not before.