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I finally caved and registered!!

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Posted 10/5/2012 6:37 PM (GMT 0)
I just had to! Thank God for this forum!  I have been stalking since March and I have learned so much here from all of you..Thankyou!!!

Hubby had Davinci 5.30.12..He is 56 years old. All went well..he is almost totally continent although beer is an issue on the weekend ;)..No complications from surgery etc..He went back to work asap after surgery and all is good.  He has had 2 PSA's since surgery.  The first at 6weeks and one just yesterday..Both <.04..that is the lowest there lab goes..(yeah! for zeros!!)

I finally registered b/c we are absolutely torn about what to do next..Due to the positive margins (see signature) both the surgeon and radiologist (met him yesterday before appt. with surgeon) want hubby to have adjuvant radiation.. They are leaving the decision up to him..but they strongly suggest it..My problem is my cognitive mind is being very resistant.  I have been scouring the internet, this forum, bought two books, everything I could even before hubby went to see the urologist (also his surgeon)back in April..So I am well aware of the debate/conflicting evidence over doing adjuvant radiation vs waiting for the PSA to bump and start SRT imediately.  I just can't get through my head that this is really going to make a difference in outcome vs waiting. I am full aware of all the possible side effects that go along with this treatment and I am not against radiation.  Although I must say I am very leary of it and know that it kills everything, not just cancer...and down the road..maybe a few years..worse problems could arise for hubby b/c of it.  I also am finding more and more articles on positive margins: just b/c you have them doesn't always mean reoccurrence..This is a very gray area and truthfully I feel like I did after he was biopsied..I know it's great that the PSA is undetectable..for now..maybe for a long long time..maybe not..but the wind has been taken out of my sails now.  I can't get on the same page as the docs for this radiation so soon..especially when so many articles say that lots of men are radiated unnecessarily..OUCH!!

I'm hoping that your feedback will 'click' something for us and make this decision easier..Hubby has to go back in 6 weeks..the surgeon wants him to heal some more and see where he's at..he isn't totally 100% continent yet..still a little leakage sometimes when he moves suddenly..and yeah the beer thing lol..

BTW what are the side effects for radiation as far as ED and continence? The ED is still an issue but I'm not worried about that right now..one thing at a time..I don't think Hubby has wrapped his head around what has happened in the last 4 months let alone put the heat on for that!!

Thanx in advance!

PHEW!!!!!!!!!  So glad I registered..Finally!!! Looking forward to learning more and contributing to help others too!

 

Posted 10/5/2012 6:45 PM (GMT 0)
Welcome and thanks for joining. Other more experienced members will chime in. I just wanted to welcome you.

Best of luck with your decision. There are not a lot of easy or clear cut ones with this disease.
Posted 10/5/2012 6:50 PM (GMT 0)
^ I know and thanx for the welcome..that's what kills me about this..there are no definitive answers...I am a cold hearted facts girl..and it's blowing my mind noone can look us in the eye and say "If this..then that..for SURE"..ugh...
Posted 10/5/2012 7:01 PM (GMT 0)
Welcome RG. You've picked a good time to end your lurker status :-). I had similar numbers and we proceeded as if the cancer had escaped--there was a 60% chance after all. I believe it doesn't pay to *****foot around with cancer; hit it hard now. So far it's paid off for me and I suffer from very treatable ED and have never been incontinent. I can't tell you what will happen in the future but I do know I have a better chance of being around to find out :-).

The best to you both!

ed
Posted 10/5/2012 7:02 PM (GMT 0)
Rivergirl,
I too wish to welcome you. I am afraid I can't offer advice. I don't know anything about it. I am afraid I am a lifer. Others will chime in but welcome and I am glad your hubby is doing good.
Posted 10/5/2012 7:02 PM (GMT 0)
Rivergirl,
I too wish to welcome you. I am afraid I can't offer advice. I don't know anything about it. I am afraid I am a lifer. Others will chime in but welcome and I am glad your hubby is doing good.
Posted 10/5/2012 7:03 PM (GMT 0)
The positive margins are worrisome...But the two <0.04 tests are very good news...Radiation treatment may provide an insurance policy but it's an expensive one in both terms of money and possible side-effects...It will lock in his incontinence and impotence right where they are now. There may even be a little back-sliding, so you want the post-surgery healing process to be as long as possible before radiation starts IF radiation starts...But you don't want things to get out of hand either..So if you want the absolute best chance of survival, start radiation ASAP. But if quality of life issues are equally important, you could have a PSA test every 3 months for the next year and wait until you have solid evidence that radiation is needed, always keeping in mind the positive margins..I'm not a doctor and this is just my opinion....
Posted 10/5/2012 7:07 PM (GMT 0)

Rivergirl,

Unfortunately, there are no absolutes when it comes to PCa. Everyone is different; the cancer appears in different places within the prostate, the cancer will be at different volumes from person to person, some will have positive margins after surgery and some will not, and there are different varieties of prostate cancer, some very aggressive and some that are indolent.

Unfortunately, medical science has not yet crossed that bridge where the doctor can make a definitive conclusion on what treatments will result in a "cure" for a given patient (but they're getting close).

Like your hubby, I am unsure if and when I will need radiation therapy. But when that decision time comes, I want to be sure that a recurrence is underway.

In case you hadn't found it in your research, here is a good article on describing what positive margins are and how they might occur after surgery: http://myprostatedoc.blogspot.com/2011/05/positive-margins-after-prostatectomy.html

Posted 10/5/2012 7:12 PM (GMT 0)
Welcome.... Looks like you are well on your way on the research front. I don't have a lot to add but just say Good Luck! Both my wife and I are facts people too and I know how you feel. This may come down to your personal feelings. If you stay on top of it and have a good plan in place you could pull the trigger if there is a jump and not loose too much time.
Just don't sit back and get too comfortable.
All the best.
Posted 10/5/2012 7:17 PM (GMT 0)
Since you are getting some of your answers, all I can do is say Welcome to the Forum and am glad you finally uncloaked (I prefer that to stalking) Glad you did decide to come out of the shadows, thanks for sharing, stick around in the light now.
Posted 10/5/2012 7:19 PM (GMT 0)
I knew I'd get great feed back...BTW I forgot to mention Hubby's PSA at surgery was 4.2....I need to try and add that to my signature...

It seems to me that you either have the mentality to 'hit it hard' as F8 suggests or 'get it when you need it' as HD Rider stated...there is no in between. All I want is for Hubby to be confident in his decision..and not to second guess when that time comes...

*HD Rider I already found that article-just today in fact! THanx for posting it though..and btw Hubby has Harleys and I swear that was one of the deciding factors he wanted surgery so soon..so he wouldn't miss out on the whole summer riding! You boys...
Posted 10/5/2012 7:21 PM (GMT 0)
Welcome to HW. I am an adjuvant RT guy, but it was based on my G4+5, multiple EPE, lots of positive margins report. about the time I was trying to decide, Walsh had just come out finally supporting adjuvant RT in cases just like mine.It was supposed to improve my odds from abysmal to really bad.

That is the big problem. Did RT mprove things for me? At 3 years out I am alive, some suspected bone mets, my PSA is 5.2 and rising at a 3 month doubling time, and I've just started Lupron. Maybe I am doing much better than I would have been otherwise. Maybe not, but there is no re-do, so I'll just presume that it was a good choice.

RT will impact continence. I had gotten down to one pad per day before we started, but worsened to 3 late in RT. Now I am back down to 1 - 2 per day, 3 rarely. Some complain of it as a short term issue.

ED - They took the nerves on both sides, so that is not much of a discussion. I have learned to like Trimix injections, and my compounding pharmacist has worked wonders in the battle with the insurance company. May I suggest that he discuss getting on at least a cycle of daily/weekly pills (Cialis, Levitra, Viagra) with his uro or GP? Dr. Mulhall will tell us to get started at rehab doses early, and you are already past that point (read his book if you have not already - Saving Your Sex Life). Even if sex seems distant, the purpose of the pills is to keep things from "falling off", as it were.

The long term issues from RT have been permanent fatigue (bad during RT, got better, but remains to a degree), radiation cystitis (some urethra bleeding that started 18 months out from RT), and continuing colo-rectal issues due to radiation damage to some surgical scars from the past.

Let's see, I did mention I'm still alive?

Posted 10/5/2012 7:25 PM (GMT 0)
I was also 56 at diagnosis - PSA and free PSA both 7.?, don't remember off hand.
Posted 10/5/2012 7:36 PM (GMT 0)
^ 142 I've been folowing your posts...or should I say STALKING lol...My heart goes out to you for having to endure what you do...it amazes me how you can remain so positive...very uplifting for us all...the urinary issues and fatigue worry me the most...the ED yeah but in the scheme of things it is the least of my worries...I am not happy with the situation but I'd rather have him alive..and I didn't realize that radiation 'freezes' you where you are in progression...that s*cks...def something to take into consideration..At times I get angry about things that have been taken away from me since this all started..but then I realize I'm being selfish and wuickly remind myself what hubby is feeling...not comparable by any means..I am OK with things...Life is a box of chocolates...you never know what you're going to get...it does s*ck though...
Posted 10/5/2012 7:38 PM (GMT 0)
..Just wanted to say I am leaving for the boat now..will be back on Sunday afternoon and check in then..I just didn't want anyone to think I posted an ditched everyone..thanx for the feedback!!! will discuss with hubby tonight..!

Have a great weekend all..!!!

:)
Posted 10/5/2012 8:58 PM (GMT 0)
Read this.

http://urology.jhu.edu/newsletter/prostate_cancer410.php

I would not do SRT until/if your husband has a rising PSA.  If your Gleason score was 4+3 or higher I would do it without waiting.

 

Posted 10/5/2012 9:03 PM (GMT 0)
Chris -- couldn't you find anything more current cool ?

ed

 

Posted 10/6/2012 12:42 AM (GMT 0)
I had a Gleason 9 with negative margins. Even so, many oncologists push for adjuvant radiation, maybe adjuvant HT, and some even adjuvant chemo.

My surgeon at Cleveland Clinic told me that the current thinking then was to wait until PSA rose. Because I took 8 months to achieve continence, I decided to wait.

I did 3 month ultra sensitive PSA testing, which remained at <.01 for 15 months, then slowly stated to climb. At 3 years it hit .06, and I initiated IGRT, at a a point much lower than many, but I felt that .05 was the BCR trip point.

There are no hard and fast rules in this game. Many doctors feel they have to recommend adjuvant treatments for liability reasons, but the hard data does not really prove much. Each case is different, so it is hard to say what would transpire if you didn't do adjuvant, or what will transpire if you do it.

I have begun to look at my treatment selections as time extenders. I got 3 years from surgery. Hopefully I can get 3 or 4 years from the radiation. At that time, I will most likely do HT, and continue until the HT stops working. Hopefully by then, the Zytigas or MDV 3100 drugs will be perfected. As a Gleason 9, I have concluded I will never be cancer free.

With your husbands numbers, I would probably consider waiting, but there are those that think I am crazy for waiting with a Gleason 9, so my opinion is suspect.

So glad you came out of the shadows and joined us. Sorry you won't find absolute hard answers. Google is a wonderful tool, and you can read volumes of data, but in the end, you and your husband will have to follow your hearts.

Good luck to both of you.
Posted 10/6/2012 4:03 AM (GMT 0)
River girl,
Glad you decided to join. This is a great place for information, and a terrific place for support. It is also a place where you can vent, share good news, share bad news, or anything you would like. I am truly sorry that you have to be here with us.

I'm a big believer in several opinions and definitely not rushing into anything. Dont be afraid to take your time to make the right decision.

Wishing you lots of luck in your journey.

Zimac
Posted 10/6/2012 12:01 PM (GMT 0)
Hi all. I am sitting here on our boat. It is pooring rain. Yuck! Hopefully it will clear up soon. I have lots to do today...! Thank you all for posting. I am very grateful for all your input. It's funny bc when I look to see who posted I feel like I know u--I've been lurking so long!

I don't know how to go back a page from this phone lol bc I already started a reply-- but one member mentioned that some surgeons recommend radiation for liability purposes. Can someone expand on that thought?

I must say I feel so much better now that I feel I have friends who are going they the same thing. It makes a difference. !!
Posted 10/6/2012 12:05 PM (GMT 0)
River Girl

Welcome to our family.

I agree with my dear friend Zimac - take your time.

Hugs

Bud

We will beat this crap
Posted 10/6/2012 1:50 PM (GMT 0)
Welcome RG! It was Goodlife that mentioned the liability and I whole heartily agree with his post as I made the exact same decision as he, even though I did not know it until a few month ago. I am a G9 also with indeterminate margins.

Throughout this journey, you will be faced with many decisions/paths to consider. Your husband is very lucky to have a wife that is ready to get down, and learn about all the different options and their consequences. And you seem to be the type that won't start taking short cuts. You already probably know there are no right or wrong answers, as everyone is unique. I am sure you understand there are no "do overs".

RE Goodlifes statement: I felt the exact same thing about my Onco's pushing ART and AHT with Zytiga after surgery. With the explanation that it was the safest bet (without regard to my QOL), it would indemnify them and boost their success history to share with new prospective patients. I don't think my Surgeon and I would agree what the definition of success is.
Did he cure me of Cancer?-dunno yet
Am I continent?-nope
Do I have ED?-Yep
But you can bet your bottom dollar I am on the plus side of his chart cause I have not died from PCa.....yet.

I thought long and hard about ART vs SRT. I could not justify ART because my findings found the difference in survival minimum. The only thing I did not consider, and you should, is the location of the margins.

Now prepare to read all those that believe their Drs. are God and you should do whatever they say...
Posted 10/6/2012 2:14 PM (GMT 0)
River Girl,
Sorry you have to be here, but welcome. I am an adjuvant RT guy and it wasn't too bad. Unlike your husband, I am a higher risk Gleason 9. While I had negative margins, my thought was that if there were any cells left, I wanted to kill them now. My Rad Onc directed me to the SWOG studies, which I read and think are good science. Here is a link http://www.jurology.com/article/S0022-5347(08)03059-0/abstract. Good luck with whatever choice you make.
Posted 10/6/2012 5:25 PM (GMT 0)
Rivergirl,

Sorry to hear it rained on your boat outing but I still envy you a bit. I am always happier if I get out and get rained on than if I just stay home.

As for your research, it sounds like you have reached that dreadful place where the science shows costs and benefits on both sides of the issue and you and your husband have to just decide. I've been there. I hate it too. It is easier when the science gives you a clear, unambiguous answer -- then you know what you should do. But when you wind up perched on top of the fence without so much as a breeze then you have to look at other factors.

My post-op pathology was worse than your husband's (GS 9 4+5, positive margins) so the decision to go with adjuvant HT and ART was easier but there are still some people who would wait. Even with my pathology there is a 30 percent chance I would do OK for eight to ten years and, if that didn't work out, then we could do the radiation and hormones later. But 30% isn't very good odds and I haven't been liking my luck lately, so when I look at a treatment that raises those odds to 85-90 percent that sounds pretty good. If I did decide to wait then, with salvage radiation and hormones and whatever, I could probably get back those other 55 percentage points and come to the end with the same odds. But during that time I would have been a prostate cancer hobbiest -- always tinkering with this treatment or that -- and never getting that good long look at prostate cancer in my rear-view mirror. It's worth something to me to get a bit more of a lead on it.

But of course, like it says on the passenger-side mirror of my car: "Objects in the Rear-View Mirror may be Closer than they Appear."
Posted 10/6/2012 7:45 PM (GMT 0)
Welcome.
Yes, positive margins are not a good sign, but even though I'm no doctor or expert, I'd reckon that with a 3+4 score after surgery and then a 0.04 PSA I think you would be okay to wait.
I'd look at it like this: The positive margins are a clue to what might happen, the 0.04 is evidence of what is actually happening, which is not much.

I too was 3+4 after surgery AND I had seminal vesicle invasion AND my first PSA was only down to 0.1, yet despite that my uro said it was still okay to wait to see what the PSA did next.
I waited about three months and then the next PSA had gone up to 0.4 and so I did have to do SRT, but, had my PSA not gone up, then we would just have carried on testing and waiting to see if it did go up.

Not sure which beer he's drinking, but try one with less alcohol in it. In Holland where I live most of the famous brands do a beer with 2.5% or so, as well as the normal 5% stuff. Also try pouring it badly so that you lose more bubbles. or just drink less and drink it more slowly!

All the best
Alf
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