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DiVinci with possible Radiation following

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Posted 7/26/2010 8:21 PM (GMT 0)

Hello all. I am new here but I would like to ask a question. I have had the Divinci surgey and my doctor is recommending I now do the Radiation Therapy w/ hormone supression. My post-op PSA was a 0.01. I would like to ask you with knowledge or experience about the side effects of these two combined. I had a doctor tell me that I was at a higher risk of never having an unassisted erection, possible permanent incontinence and bowel leakage. My doctor that performed the DiVinci surgery thinks I am progressing well and that I will have few problems, (he does not do the radiation therapy). I would greatly appreciate any and all feedback. Thanks.

Posted 7/26/2010 8:26 PM (GMT 0)
There must be pieces missing to your puzzle here. What was your pathology report like post surgery? Based on the little bit of info you provided, it doesn't make sense that your doctor is wanting you to have radiation this soon? Especially since your first post surgery PSA was .01, basically as low as it can get.

Perhaps you could share the rest of your story.

I have been through both open surgery and salvage radiation, and you sure don't want to go the radiation route after surgery unless you absolutely need it.

Welcome here, though.

David in SC
Posted 7/26/2010 8:32 PM (GMT 0)
Purgatory is correct. Obviously your surgeon is basing his opinion on your port operative pathology result. Look at my history below in my signature. The obvious mitigating circumstance was the late stage 3 pathology.

But also look at my signature again, I am in remission after more than three years with that pathology, and I attribute adjuvant hormonal and radiation therapies for it. And my plumbing works fine. While on HT I had no erections, but all that came right back after stopping the therapy.

Just a thought to share...

Tony
Posted 7/26/2010 8:41 PM (GMT 0)
Tony, thats what I was suspecting, like some kind of stage 3 situation, margin problems, etc. Hopefully our new friend will post some additional info
Posted 7/26/2010 8:53 PM (GMT 0)
Regal,
Surgery is definitely going to have more side effects in year one. As time moves on that shifts a bit with radiation. But more direct to the posters case, if I am right about the staging, that the surgeon is laying caution that adjuvant radiation can hinder normal recovery from surgery. And that is very true. As any good radiation oncologist will tell you, you are always at your healthiest before being treated with radiation. Meaning, if you have current surgical recovery issues, adding radiation before a complete heal could leave a patient with a permanent condition. It's rare, but possible.

But it was not the case for me, however, and I thank all things good for that...

Tony
Posted 7/26/2010 9:06 PM (GMT 0)
Fallcrop,

It would seem that there is a bunch of info missing and unanswered questions that you should ask your doc.

My PSA was never undetectable after surgery, but we didn't start having conversations about SRT until it hit .63. My signature shows my stats and outcome from the surgery report.

As far as side effects I can only address those of surgery and IMRT. I had no incontinence issues from surgery and still don't coming up on 1 year. ED is still something I am working on but I am beginning to see signs that things are improving, albeit very slowly. I had no issues with IMRT other than a little urgency and fatigue towards the end that passed in about 3 weeks following completion.

I am not on HT as of yet, but they did find a MET recently and I will begin radiation on it tomorrow.

Hope this helps somewhat. But what you really need at this point is to list all of those questions that have come up about WHY and WHY NOW.

Best of luck to you,

Sonny
Posted 7/26/2010 9:16 PM (GMT 0)
I'm also a DaVinci + immediate radiation case. And my post-op PSA has been "undetectable" all along. In my case, the Urologist/Surgeon insisted on the radiation because I was a post-op Gleason 4+5 with multiple extra-capsular extensions and positive margins. Given the possibility that some "got out", it appeared, and still does appear, to have been a valid choice. I likely won't ever know the answer to that.

So you do need to check your post-op pathology report to see if there was an upped Gleason, extension, or lymph node / seminal vesticles involvement. If you don't have a copy, ask for one -

And yes, my radiation has set me back in the incontinence dept. from one pad a day at the start back to 2 - 3 per day now six weeks after. ED was guaranteed from the surgery, so nothing to worsen there.

Also, is the doctor who did the surgery the one who suggests the radiation?
Posted 7/26/2010 10:35 PM (GMT 0)
Fallcrop,
Your Gleason and post op PSA in itself doesn't warrant immediate radiation and HT. There must be other information in your pathology report that your doctor is basing his decision on. Please give us more info from your pathology report. Did you have positive margins? Extra prostatic extension?
Posted 7/27/2010 12:07 AM (GMT 0)
I can see why, if there were pos margins, and/or the gleason was higher when viewed post op through pathology, that they would suggest radiation. If you have good reason to believe that the cancer has escaped the prostate, then it makes sense that you'd want to radiate the prostate bed to stop it's spread and possibly save your life. My concern would be why the radiation AND the HT. Each of those two in and of themselves can cause problems, and unless your post op pathology was really crazy (bad), i'd be surprised that they would suggest having both. You post op pathology is what you need to see, and share here, if you want some experienced opinions by some very well studied patients (myself excluded).

I dont know what "regal" means about the "freeloaders".. I have seen very few people here state anything other than their most well intentioned opinions. So i'd take the comments of that user, both now and going forward, with a very big grain of something.
Posted 7/27/2010 2:56 AM (GMT 0)
First I want to Thank everyone for their input. Second, I am not very medical and just learning about all this so I am not sure how to answer some of the questions. But I will add more information. After the biopsy results were returned, they thought the cancer was all contained within the prostate. The biopsy showed 4 of the 12 sections positive. The doctor that did my biopsy (and later told me all the horror side effects) is not the doctor that did my surgery, I chose another surgeon that had much more experience. After the surgery, my prostate cancer surgeon told me that the pathology report showed the cancer was more advanced and there was some growth on the outside of my prostate. He also said that my cancer was very aggressive and the 0.01 could possibly multiply in a short time frame. He is recommeding the radiation to stop the possible regrowth.
Now for my Radiation Oncologist. He told me that he thought the radiation treatment would do better by adding the hormone treatment and according to a Johns Hopkins report posted in Prostate Disorders on June 9, 2010, he could be right. Link; http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders.
ED, I had no problems pre-surgery. At almost 2 months post surgery, I am having ED as predicted. My surgeon prescribed first Viagra then Cialis, with which I can achieve maybe a 50% erection. For my incontinence, I used one pad per day and using none now. I hope this information helps. Thanks again everyone.
Posted 7/27/2010 3:30 AM (GMT 0)
Your post-op pathology report will also report a Gleason score. That is important. Is it higher, lower than your biopsy?
The "growth outside" is what we mean when talking about "EPE" or Extra Prostatic Extension, as well as Extra Capsular Extension.
You need to get a copy of the pathology report, and a copy of the surgery report. My pathology report told me a lot of bad things, the surgical report was incomprehensible.

I think that the advice from the surgeon to have radiation carries more weight than the opinion of the doctor who diagnosed you, but that would be my non-professional opinion.
Posted 7/27/2010 4:06 AM (GMT 0)

Please read the article just posted by fogball. It contains most of the information you seek and is well documented.

JT

Posted 7/27/2010 4:45 AM (GMT 0)

John T said...
Please read the article just posted by fogball. It contains most of the information you seek and is well documented.

JT

John,
I missed that post can you link it?

Tony
Posted 7/27/2010 6:39 AM (GMT 0)
Fallcrop

After looking at your last post, your situation is very similar to mine, except I was 57 at diagnosis.  I'm now 2.5 years post surgery, 2 years post radiation, and 1+ years from my last hormone injection.  PSA last week - undetectable.  I haven't had the success with ED as others - my surgeon said that the radiation probably would destroy the nerves he spared.  However, my long range outlook is excellent, and I'll take that to the bank!  Hormones are still wearing off - ocasional "warm" flashes, so perhaps there is hope for the ED.  Do your research, as it looks like you're doing, and don't fear the additional radiation.  It's great that you have a secondary treatment option available.  Life is good!

Posted 7/27/2010 11:29 AM (GMT 0)
Fall, you've received some very good advice here. The fact that the cancer was "more advanced' than originally thought in and of itself doesn't necessarily mean anything unless you have the complete pathology. Cancer outside the gland is not uncommon. As someone else pointed, that is usually referred to as EPE (extraprostectic extension). However, that by itself does not necessitate radiation and HT as adjuvant therapies. You need to find out your exact stage: IIIa, IIIb, etc. as there can be significant difference between the two. If the cancer was found outside the prostate capsule, was it a single extension or multiple extensions? This would be stage IIIa. Stage IIIb means that the cancer was found further away from the capsule such as the seminal vesicles or bladder neck. Also the Gleason score is an important factor in considering adjuvant therapy so you need to get this information which is stated on the surgical pathology report. While I'm not doubting the doctor's recommendation about radiation and HT, it is important that you participate in the decision and not just "go along" with what you are being told.

Once you get that information, come back and share it with us and we'll do our best to help you understand it. I know it's all overwhelming but be assured that all of us have been where you are. We will help you as best we can (keeping in mind that we are not doctors).
Posted 7/27/2010 3:02 PM (GMT 0)
Radiation treatments for you might very well be inevitable..But it is very important that the HEALING from the surgery is allowed to progress undisturbed for as long as possible..

I would question the need for radiation or HT until your PSA starts moving up from undetectable..

I would question your U-doc why he thinks early radiation with a PSA of .01 is so important. Waiting until and IF it goes up to .05 or .1 should not make any difference with the final outcome..So nail him down on that point...The longer you heal, the better you will tolerate the radiation....
Posted 7/27/2010 3:19 PM (GMT 0)
Fairwind,
There is solid study evidence that adjuvant therapy (before a PSA rise) is more effective than salvage therapy (after PSA rises) in certain high risk cases. Typically in stage 3b or stage 4 cases.

Tony
Posted 7/27/2010 4:18 PM (GMT 0)
Who's fogball?
Posted 7/27/2010 4:36 PM (GMT 0)
Here is another link for an article on adjunct vs. salvage radiation posted a few weeks ago in another thread - it is a good read.


http://www.jnccn.org/content/8/2/228.full.pdf

Posted 7/28/2010 11:06 AM (GMT 0)
My doctor is a few hours away. I will see about getting a copy of the pathology report and the surgery report my next trip there. You all have given me lots of information for thought and questions I need to get answered. I thank all of you and will post more when I have it available.

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