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Posted 1/14/2011 10:03 PM (GMT 0)
Greetings.

I've been more lurking than contributing, but I wish all my friends here the best.

I thought I'd give you guys (girls) a quick update. It is apparently more of an urgent matter to treat my pca than my wife and I thought. I will be under going davinci surgery maybe as soon as February (2011).

Since I last posted, my psa has been on the rise, the last one before my second biopsy in November 2010 was 8.0.

My second biopsy last November 2010 revealed that I now have 2 positive cores, one a 3+3=6, 3% and the other a 3+4=7, 20% DRE reveal nothing extraordinary, weight about 30 grams(?)

The uro told me at this point given my age, 55, that active surveillance is done and treatment is needed.

Went for another second opinion yesterday, this time at Northwestern Mem. Hospital in the Chicago area with Dr. Robert Nadler, who seems like a very nice fellow, and I felt really comfortable with him. He has about 500 RP under his belt. We talked about all options, radiation, seeds, IMRT, everything. He spent over an hour with me, and wasn't pushing any one kind of treatment.

He also personally performed his own DRE, and wanted to do a psa to see where that was at. They'd have results by Friday or Monday.

My wife and I were going to think about things when the phone rang last evening and it was Nadler's nurse telling me that the results came back from their lab and that my PSA was now at 12! My wife and I were going to do a little traveling for our 20th anniversary in March, and then when we got back, address this pca thing.

It seems that that has now sort of changed. It was recommended that some treatment begin ASAP. So for me I think it is daVinci. Yesterday was a very ****ed up day with more than a few tears.

It still seems really odd to me that I feel great now, but after treatment, I'll be left in worse physical shape at least for the short term, yet (possibly) cured of this plague.

In the whole scheme of things, it's not the pca, or treatment that is bugging or scaring me. It's the drag I feel I've been to my loving wife. The nicer she is, and she has been an absolute angel and support for me, the worse I feel she is being cheated out of a life that should not include this BS. I've been real down about this. She's just a great person, and I'm willing to bet if all of you were in the same room as her that she'd be inclined to do what she could to help out each of you in some way. She's just like that.

I only hope that I've made her happy and made her smile and laugh during our 20 years together.

She encourages me that we will get through this together. I was looking forward to traveling with her before all this, but her comment is we will have lots of time to travel and be together.

I'm determined to do this right, heal fast, do everything I'm told. Today is Friday and I plan on drinking a few more belgian beers than I usually do and toast my wife.

All the best.

W-O
Posted 1/14/2011 10:09 PM (GMT 0)
Which did he do first DRE or blood draw? If he did DRE first, find another doctor.
Posted 1/14/2011 10:14 PM (GMT 0)
you beat me to it Gordy - a DRE before the PSA will elevate the reading - also , would have been better for you if planned to have 2-3 days of abstinance prior to the bloodwork - anything affecting the prostate will have an effect on the reading.

wishing you all the best in your search for the BEST treatment for you.
BRONSON
Posted 1/14/2011 10:16 PM (GMT 0)
W-O -- in the initial freak out of having PC i also felt like i cheated my wife out of the life she should have had.  you see, i'm 14 years older and she agreed to no kids years ago.  we were together 19 years when i was diagnosed and i was 54.

it's a year later now.  i'm finished with treatment and we are more in love than ever.  her Dad thanked me for being such a great husband to his only daughter.

you know it could have been the other way around with illness, and i hope i could be half as supportive as she has been to me.  take care of yourself and get well cool !

ed

Posted 1/14/2011 10:22 PM (GMT 0)
You know, I asked about the before or after thing myself, and was told that it would only make a difference if you did the DRE a day BEFORE getting the PSA.

If you get the DRE, and then 20 minutes later get the blood draw, it should make no difference. I tested this out before my second biopsy, getting the blood work first, then the dre. The results were the same as some of my previous ones done dre first.

What is more of a concern to me is how much variance there could be from lab to lab, thus my reading from last November of 8 at Rush Med. Center in Chicago, gone up to 12 when having it done at Northwestern Mem. Hosp. in Chicago this past week.

W-O
Posted 1/14/2011 10:33 PM (GMT 0)
Don't panic over the last PSA of 12..You have had a biopsy and at least one DRE , possibly two, before this test and that's sure to elevate the reading..

While surgery may indeed be your best option, (I chose it) if I had to do it again, knowing what I know now, I think I would choose radiation, and would travel if necessary to be treated with a combination of seeds and IGRT..

I have come to believe that the "cure" rate is virtually the same and the side-effect and complication risk is considerably less with radiation when performed at the state-of-the-art level..I think that being left impotent would be a disaster in your case, let alone incontinent, and the surgeons, good as many of them are, tend to minimize these risks when they make their presentations..Few men undergo surgery without some degree of ED (impotence) afterwords...So choose your doctors carefully...
Posted 1/14/2011 10:37 PM (GMT 0)
Wigged-out, Welcome you have had time to process what you want to do about the situation. With the rise usually that is an indicator that it is time to act. What rode you take is the decision that only you and your wife can make.

Best of luck. You made a statement that you felt great. I will tell you that many of us have had not symptoms at all and like you I never felt better physically and then the Dr called and messed up my day saying "you have cancer" Man.. Cant say I was supprosed but sure hated to here that news.

Do keep us posted on your choice when when things are going to happen..

Cajun jeff
Posted 1/14/2011 11:09 PM (GMT 0)
W-O,
In one sense, you are a very lucky guy. You have a wife who loves you and takes her vows seriously. This, unfortuantely, is sometimes what marriage is all about. You may have an opportunity to pay it back sometime in the future. Thank God, I was blessed with a wife like yours in my time of need.
If I read your post correctly, you have some G4 cancer cells present. You must not fool around with them and if I was you, I'd want them gone. I personally chose surgery because I wanted radiation to remain as a backup, but Fairwind makes a good point in that we are not told all the side effects.
I'm sure you have already read Dr. Patrick Walsh's book, "Surviving Prostate Cancer". If not, I highly recommend it. Now is the time to get yourself physically, mentally, and spiritually ready for whatever treatment you decide upon.
Please keep us in the loop. I wish you success and wellness.

peace
Posted 1/15/2011 12:09 AM (GMT 0)
wigged,
You sound like a great husband and partner. You're right, shed the tears and take care of business. You will be fine. We deal with one thing at a time. Sounds like your wife is amazing. This will bring you closer. The ED thing can be taken care of afterwards. You will have a great sex life again. get it gone and taken caare of. You've done your homework. savour this time...and have LOTS of sex.
Paul
Posted 1/15/2011 5:04 AM (GMT 0)
Hey wigged-out
I am in the area and saw the same doc
if you'd like to chat about it - let me know
Posted 1/15/2011 9:31 AM (GMT 0)
Hey thanks for the replies and encouragement.

A few things helped pushed my decision: Went from one core positive to two in a year, with even more cancer in the second core. A psa that is going the wrong way. The doc at Northwestern informed me of something called "velocity".

I was under the impression that a "normal" psa level is about 4, but apparently, at least with this doc, a psa of anything over 1 is considered suspicious.

sfigato- I'm going to take you up on your offer. Thanks.

W-O
Posted 1/15/2011 12:17 PM (GMT 0)
Do read at the very top of the forum page herein, English Alf posted what to expect with surgery or similar concept and be prepared for such, it is very well written. Then after contemplating that, re-contemplate perhaps the brachy + IMRT method and the very very very likely lesser side effects and issues. Remember neither is a guarantee. Best to you, it is a one time choice event, choose after alot of contemplation so you don't beat yourself up, years after. Don't be mislead by the first doc that claims 'cured' either. I got many opinions then saw it very clearly that I was a used car coming in for repairs (lol).
Posted 1/15/2011 12:25 PM (GMT 0)
Wigged-out

Try this email address:

sfigato at healingwell dot net
Posted 1/15/2011 6:24 PM (GMT 0)

Wigged

I had my surgery 10 years ago just after our 25th anniversary.  Based on where prostrate cancer was, I knew normal love making wouldn't be in the cards and so did my wife.

She said something before the surgery and many many times since, the alternate to the doing something and not doing anything wasn't an option.

My uncles all had it 3 died of PC - one at 54, 58 & 62.  They found mine at 50  -  2+3 = 5 with 40%  PSA went from 5.2 to 6.8 in 4 months

I tried various option for ED from pharm to shots and not use the pump and rings.   Our love live isn't as crazy as it was before but still good.

I am having the AUS AMS 800 installed on Friday 1/21/2011 at Cleveland Clinic to fix the plumbing leaks and she will be with me for that.

If anything our marriage is stronger.

Wigged, don't rush into anything but make certain you have a GOOD urologist who knows his limitations as well as you.  If you feel uncomfortable, find another.

My Urologist, which I have now, used to install the AMS 800 but didn't do enough of them to feel comfortable so he sent me to Cleveland Clinic where a Dr Montague will be doing it.

Good Luck and Talk with your wife.

Posted 1/15/2011 6:29 PM (GMT 0)
tv: good luck on your upcoming AUS surgery, I hope it does all it suppose to do for you
Posted 1/15/2011 8:06 PM (GMT 0)
I fully agree with Red Nighthawk:

"In one sense, you are a very lucky guy. You have a wife who loves you and takes her vows seriously."

It doesn't always work out that way, and you guys who have wives (girlfriends, significant others) who stayed with you have no idea how lucky you are. No idea.

Zen9
Posted 1/15/2011 8:23 PM (GMT 0)
Sorry to hear that you had to go to the next round in this battle. Once you are done with the decisions anxiety will be less and lets hope you are done after this round. Most are. At least you have educated yourself so you won't just be stepping off a cliff. Still the decision is big ,I think. Good luck and enjoy that beer, I think I will open an IPA for myself and drink it in your suport, that's how nice I am.
good Luck!
Ron
Posted 1/15/2011 8:23 PM (GMT 0)
Let me clarify a few things that I think learned talking with various MD's, Uro, and this forum that helped form my decision.

If there was just a door number one, the decision would be a no-brainer. But in our (you and I) have multiple choices, and if successful, each has about the same outcome, albeit with the "choose your side affect" factor.

If I did nothing, it was pretty much unanimous that I could live for 10 years (to 65) and maybe start developing real problems. There seems to be a consensus that making it 15 years (70), good chance of being sick or planning a funeral. Again this is if I did NOTHING, which is not an option.

Plan B- Surgery, radiation, seeds. From what I have learned, IF I was in my 60's or 70's, radiation might be fine given the total year out come. Radiation for me at 55 could come with a price, well, actually a few. Doing radiation first would make surgery if needed later more difficult. I also have a huge family history of colon cancer, and one of the dangers of radiation is the possibility of curing one cancer only to open up a can of worms with the introduction of a new cancer. In addition, some of the radiation therapies take eight weeks, and are a five day a week thing. Add to that the side effects of the treatment itself. The upside is that I still would have my second favorite organ, cooked medium-rare in spots, and probably be a full functioning sexual being.

Seeds I feel the same about, radiation. Again the main thing is that window of doing surgery AFTER (in the event of a recurrence) closes just a bit more.

Surgery- extreme. Well aware of the ED, incontinence, and so on, but I think I may have a good chance of recovery since I'm in pretty good mental and physical shape now. I could still do radiation if the need arrises when I'm in my 70's, and then if I make it for another 15-20 years....well, I think I'll have had a pretty good life.

Again, these are just my ramblings. Things would be maybe easier to decide if I was 65, 75, 85, or beyond. Some times being younger-ish makes things tough to decide.

Speaking of good life, I've found a new sense of "don't waste time". Do things. Fix the things that are broken, relationships, house, make the things you want to make. I'm very much into art and am trying to paint, draw, video, photograph, whatever. And most of all to let the person or persons who you love, know that you love them. No one can hear that to much. I extend that to my new-ish found family, you on this forum.I real wish you all the good healing in a speedy way.

Thanks for your replies.

W-O

Peace and love.
Posted 1/15/2011 9:54 PM (GMT 0)
W-O,
It is obvious you have given this much thought and are comfortable with your decision to have surgery. Now you should devote some time to finding the absolute best surgeon in your area, even outside your area. This is so important it can't be stressed enough. I personally had to leave my Uro/surgeon because he admitted to having done only 40 davinci robotics in the previous two years. I found a few surgeons who had done over 1,000 and that is what you should do. It can make all the difference in the outcome. All surgeons are not equal.

Good luck and keep us in the loop.

peace.
Posted 1/16/2011 3:22 AM (GMT 0)
Wigged,

Welcome to forum. Sorry you are here. As you've already discovered, there is a wealth of experience and empathy here. The PCa "brotherhood" as been helpful to me, and I'm sure you will benefit as well.

Last Fall I went through the same decision process that you're experiencing. I am a bit older than you, but still young enough to have chosen da Vinci over radiation because I wanted to keep my options open. My father was treated with radiation at age 75. We all have the same disease, but seem to recover differently from treatment. There is no perfect solution for PCa.

Anyway, to the point. Having a supportive wife is a blessing. You'll likely find that going through this together will strengthen your marriage. I understand you feeling like you are letting her down. I had the same feelings. Our wives are more realistic. Love goes far beyond this ugly affliction.

Hang in there.
Posted 1/17/2011 12:40 AM (GMT 0)
Hey sfigato,

I think you need to enable your email feature in the forum in order for me to contact you.

I look forward to hearing from you.

W-O
Posted 1/17/2011 1:04 AM (GMT 0)
And regarding life with marriage, pca, and beyond.

My wife and I have a wonderful relationship that I suppose like a lot of marriages starts with the usual non-stop sex life. Over the years, this has become less of a center-piece for us. It became real apparent real soon that our love and passion was mostly that we love and are passionate being together not just as husband and wife, but best friends.

Call me nuts, but a pleasant AM could involve cuddling, touching, and the occasional fart under the covers that still after 20 years of marriage makes us laugh till one of us has tears.

We do have enough things to fool around with that we could open our own ****o shop. Not that important though. Just thought I'd brag...

We both love to laugh and be together. Period. This is why I don't really give a crap about how all this will iron out in the sex department, but in any event it won't alter the love and passion we have for each other as husband and wife. Dick is all in the mind. Sure I'd like to be where I was when I was 24. But that's not the end all for me.

I hope that my words here help to make you think that in the end it is the caring, love and concern from you wives, partners, significant others. Laughter makes me hot. The world which seems full of crap now, needs to laugh and smile more. And understand. Work with the other side.

I wish you all happiness, and please laugh no matter how much it may hurt. In some weird way, this is the keggle of life.

Now it's back to putting on some funny weird women clothing to make my wife smile or better yet, laugh. Email me if you'd like pictures, I'm guessing I won't get many requests, and please note that I'm kidding about the pictures.

Wishing you at least a smile.

Your W-O one.
Posted 1/17/2011 2:03 AM (GMT 0)
Try checking my profile now: [email protected]

wigged-out said...
Hey sfigato,

I think you need to enable your email feature in the forum in order for me to contact you.

I look forward to hearing from you.

W-O

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