The only truthful statistical % after reality hit ...

... for me, after reading loads of studies, seeing percentages thrown around by oncologists, urologists and patients, chances of living five years, 10 years, 20 years ... there's only ONE 100% truth.

I have a 100% chance of never being the same after this diagnosis and treatment.

It's that reality that really smacked me hard this week. All the rest is statistical minutia and guess work that doesn't mean a thing in light of the diagnosis. There are no other definitives when it comes to prostate cancer, at least for me.

Here's what I know: orgasms will never be the same, I may or may not (but probably) be able to get erections (depending if the surgeon can save nerves), and either way, sex won't be what it was - ever. Hell, sex may not even be possible; there's a chance and percentage for that, too. I'll have to wear a catheter for at least a week or two. I'll likely pee my pants for a while, I'll probably cough and piss myself a few times ... or maybe weeks ... or for months. I may have to wear pee pads for a while or a little longer. Well, fantastic!

But we're guys, right? We're told to 'man up', suck it up and live with it. Yeah, ok ... Since my diagnosis May 2, I've gone from denial to hope, from acceptance to pissed off and everything in between. I've listened to my urologist tell me he thinks my cancer is confined to the prostate gland, to hearing a radiological oncologist on Friday tell me I'll be lucky if it hasn't spread. I took an online test that gives me only a 20% chance of confinement to the prostate gland when I plug in my numbers. So apparently T2b doesn't mean anything, either.

I sent off my slides to Johns Hopkins, Dr. Epstein, last week. I'm told now that the news could get worse ... or better, but not much better ... considering 'better' with my numbers is relative. Good news? Nah, not much. 80% of my prostate has Gleason 3+4=7 adenocarcinoma, 9 of 12 cores; two cores are 3+3 Gleason 6, two cores benign. The radiologist doc was kind enough to remind me of that, even though I already knew it. But hey, I guess it's better than Gleason 8/9/10 or pancreas cancer. Next he says my prostate is HALF the size of a normal prostate. Well, how the hell did that happen? No one knows. Also, those sudden urges to pee that I had before my DRE and biopsies - totally gone now. I don't have that issue anymore. Pissing is back to normal. What that means, I have no clue and neither does anyone else I've talked to.

I've got a colorectal MRI, CatScan/bone scans being schedule to see if this cancer has spread. I thought I already had an MRI, but it was apparently just an ultrasound done with biopsy. Another PSA test was taken Friday and I'll get those results next week. But, get this ... the radiological oncologist Dr. David Pomerantz (the same guy who did Tony Caspino's radiation treatments) tells me that PSA going down means nothing. Really? Yes, really, he says. PSA going down doesn't mean the cancer is going away or risk is lowered. Apparently only PSA going up means anything ... ok, great, let me get my head around that, too. I'm 'intermediate risk," says Pomerantz. Risk? Risk of what? Dying? Living? Being diagnosed with cancer? That term 'intermediate risk' is laughable. I've already been diagnosed with cancer. Someone really needs to have that verbage changed.

The first week, I felt I had time an options and time, but now, not really. Both options - radiation treatments or radical prostatectomy - leave me with virtually the same issues and the only statistical % that's 100% truthful. Both treatments have similar complications and side effects. Dr. Pomerantz says both have equal success rates - no clear statistical advantage one over the other with cases like mine.

So, the dreaded decision. Doing radiation treatments for nine weeks, five days a week, just isn't my cup of tea. No, thanks. I asked Dr. Pomerantz what he would do if he were me, and he said he'd probably do the surgery. Well, that settled that. If the radiation doc opts for surgery, that sold me. I'll get a referral to surgical oncologist Dr. O. Alex Lasani, who Tony recommends in Vegas. So surgery it is. Hopefully my Humana insurance won't fight me opting for surgery over radiation. Thank God, the decision is decided.

And there you have it. Reality hit. There just aren't many choices when all is said and done, and the only statistic that makes any sense is that there's a 100% chance I'll never be the same again.

Thanks for listening.

With your stats surgery alone will cure you with high probability. Prostate cancer is the only human cancer that can be followed after its extirpation by a perfect tumor marker (i.e. PSA), so you will know the outcome of the surgery treatment. I had surgery with worse stats than yours and, sure, life will be different but not necessarily worse. I have never been incontinent (no different at all in that area), potency is 80% without any pills, orgasm is different but still pleasurable. I do not regret my treatment choice. You will be fine when all this is over in three months time.

Wade, yes, life changed with the moment of "the call". No doubt about it. You've got a great resource in your town with our brother Tony. All I want to add to the other comments is, make sure you're making the right decision FOR YOU. We can make suggestions about what paths to look down, in the name of due diligence, and yet, in the end, the decision is yours to make based on whatever factors are most important to you.

Just so you know, there are a lot of us, in this forum, who are largely side-effect free. There are no guarantees, beyond the one you started with: life is going to be different. The "c-word", when it is applied to us, changes us forever. I know I'm a different person than I was 18 months ago.

Wade, I'd echo what the others said. You will probably never be the same. That's true. You will be different. But that doesn't mean life will be worse. None of us are happy that we had to go through this, but as a result of diagnosis, I think most of us appreciate life so much more. I'll speak for myself , saying that I enjoy my family, my job, my vacations a lot more than I used to, I thank God every day for what I have. I still worry about my health, but I also have come to realize that I'll be able to handle whatever gets thrown at me, and so I handle stress, I won't say better, but I'll say a little less worse, and i continue to work on it.
Take a look at Halberts new thread on attitude, as it develops.

Hey, you have every right to be upset, nervous, even angry, right now. It's will pass. You'll be ok. Different, but you'll be ok, even good. I would venture to guess that every guy here, at one point or another, felt the same as you do,,with the same fears. I've met a lot of the guys here, face to face. It's inspiring to see how they have gone on with their lives, even embraced life more, after treatment.

You're gonna be ok.

Wadeb,

Go thru through process and various tests. Sometimes you get good news, not great, but good.

One reason, among many for me, to have surgery is the results of my 3T MRI. It found organ confined disease with no EPE, no seminal vesicle involvment, no lymph node involvment and no pelvic bone involvment.

Now, I do realize that this is not a definite and once my sugeon goes in, he can find something different. BUT, the 3T MRI could have found ALL of the above, thus directing my treatment protocol away from surgery. So, I am hopeful that I can be one of those lower percentage guys with my numbers that do have organ confined disease. They are out there or those percentages would be 0%.

Hang in there buddy.

J

I don't think your predicament is as dire as you write, and you have several other options besides the ones you mention.

I'm only a year out and can't offer first hand long term evaluations. There are others on this site who can provide positive long term evaluations.

However, I did not need the catheter you described, and sex is still possible and orgasms are not much different from pre treatment.

Are you already decided on surgery because you don't want a nine weeks, five times per week radiation regimen?

Other radiation therapies offer excellent results with many fewer treatments required. LDR (seeds) is a one time permanent implantation of radioactive seeds. The radioactivity decays over time so you are not permanently receiving radiation, or receive it a much lower dosage over time. HDR is a temporary insertion of highly radioactive pellets (the pellets remain in for a half an hour or so - a typical protocol is to do this with two separate insertions done a week apart. SBRT (Cyberknife type) is an external high radiation method done typically 5 X over the course of one or weeks. HDR and SBRT may be able to address cancer not confined, but not too far distant from the capsule, if you need to address that.

Your profile shows you're in Las Vegas - I don't know about providers there, but UCLA is not so far that you might not want to visit them for evaluations. They have excellent HDR and SBRT programs.

So you have choices, and a likely a better prognosis than you think.

Good luck.

"Yeah, we had cancer but so what?"

Well, by golly, I had never thought about it quite like that, but, for a lot of us, that really is a darn good way to look at it!

Thanks, Jim, for one heck of an insight!

Wade,
I had stats worse than yours and I'm just the same as I was before treatment, with the exception of no ejaculation, which I actually consider a benefit, no mess any more.
With radiation you have a better shot of having zero or minimal side effects.

stay strong my brother. There is a great chance that you will beat this disease and live a long happy life. Don't let all the craziness get you down. I read invasion of the prostate snatchers, it was a real good book. there was a quote that stated "prostate cancer saved my life." I know it's hard to think about all the positives that can come out of this. For me, I try to start the day thinking about three things I'm grateful for. Wish i had more to offer. A major part of this battle is mental. We don't share those stats like we do others.

Wade,

You are understandably confused and upset. Because of your current emotional state, this is really a terrible time for you to come to a life-changing decision. As others have said, the first misapprehension you have is that you do not of plenty of time to meet with more specialists, gather a lot more accurate information than you seem to have right now, consider what is important to you, and come to a more rational decision. Since you have an aversion to statistics, I won't throw at you all the data that runs counter to things you are saying, except to say that outcomes are the same whether one takes more or less than 3 months to make one's decision, even for high risk cases (and you are not high risk).

I do agree with you that 9 weeks of IMRT is, or should be, a thing of the past. Have you talked to CyberKnife of LV? If you can be treated at UCLA, I'd recommend talking to Drs King and Kamrava there about SBRT and HDR brachy. The nearest LDR brachy docs I could recommend are in the Bay area.

Wade

I was almost exactly in your shoes in October of 2013. The six weeks between my positive biopsy until my RALP was probably the most anxiety ridden period in my life. I am a healthcare professional and the more information I received in that period of time, the more perplexed I became. Given my circumstances I decided on surgery and have not regretted my decision.(at least as long as my ultra sensitive PSA remains .007)

You are correct. Your new normal will be different than what you are used to but I can tell you that there is a likely hood that post op problems will continue to improve; sometimes very slowly, but they do improve.

I am not going to sugar coat this whole thing, but you will get through it and what you are going through now, was for me, in retrospect , worse

Take in all of the information and opinions, make your decisions, and move on as best as you can.

Todd,

You've been through a lot. More than most of us.

Best to you.


Wade is still early in his process of discovery. Hopefully, he will come to the realization and appreciation that he has a condition that will likely respond well to treatment, and that he will likely be able to move on with his life with fewer changes and less upheaval than others have to go through, and he will be thankful for that.

Wade,

everyone has an opinion and all are valid.

frankly i see you looking at one fact of ""I'll never be the same"
that's true, but whatever you do, you will be better.

yours is low end and can be cured. so you are not going to be the stud you were, but you will be an alive man.

tell me what human being is the same person everyday of their lives.
at least you were given a chance,
take it and go on with your life.
life is never "being the same"

your life will only be a bit different, that's all.
it will better than you think.

get with the program. it is curable.