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Posted 3/11/2013 3:35 PM (GMT 0)

Hi all,

New to this forum. Looking for a little advice from anyone with some to offer.

I'm 43 and a father of 3 (13,11,6). I had an LRP 7 weeks ago. So far my recovery has been good - I was back at work after 4 weeks and pad free after 6 weeks. My PSA was 6.3 when I was diagnosed last October (without symptoms). My father also had PC. It was believed I only had a small tumour but following the histology it was discovered to be a lot larger and more aggressive that they had thought. My Gleason score was/is 6/4 (7 I'm told?). Anyway, my post-op PSA level came back 0.019 which is good. Next one should be even lower?

To be honest, I don't know a lot about the Gleason score etc. I see all you guys have detailed numbers showing the locations and extent of your various biopsies etc. I've never received or discussed any of these numbers from my doctor? Maybe I should ask more questions  idea  

Also, I'm a bit worried that my sexual function is not returning as quick as I would like! I have 'urges' blush but no 'response' confused . Very frustrating....  shakehead I was prescribed 10mg Cialis twice a week to keep the blood flowing in that area.

Any advice, suggestions, etc most welcome.

Best regards to all

Kieran

Posted 3/11/2013 4:05 PM (GMT 0)
Kieran - take a deep breath, you have lots of time to recover.

The Gleason and post-op biospy should be discussed with the doctor/surgeon and he should have the results. Gleason scores are usually represented as A+B = Score, A being the predominant abnormal cell type, B being the subordinate type.

Sexual function will do as as it wants, not much to change it but give time for recovery. you have 2+ years clock time for recovery time before you can't expect much change.

Cialis in my mind is a good palliative treatment, not sure about the science behind blood-flow logic, as there always is blood flowing in the area nourishing tissues. I think it help feel good/normal and doesn't hurt recovery so why not.

you are pad free, which is great, try to get more info on the surgery results , that's most important as it will help determine if you can expect to avoid further treatment for PCa

good luck, you sound like you are doing great, be patient with your recovery and do follow on the results of the surgery
Posted 3/11/2013 4:06 PM (GMT 0)
Hi Kieran. Welcome to HW.  You will get a lot of information and support here.  You can (and should) get a copy of  your pathology report from your doctor, and ask him to explain it to you.  From that, you will get information about how much cancer they found, where the cancer was located, whether it appears to have been fully contained, the Gleason score, etc.  It is important to know and understand this stuff, as it has an impact on the likehihood of recurrence and what, if anything, more you may need to do.  In terms of ED recovery, it takes time.  How much time varies, but after 7 weeks I would not have much expectations.  A year or more is not at all uncommon.  For now, I would follow a rehabilitation protocol, in consultation with your doctor.  It sounds like you are doing some of that already, with the Cialis.   Best wishes with the recovery and -- I hope -- a cancer-free future.  Medved
Posted 3/11/2013 4:14 PM (GMT 0)
Kieran,

Welcome to the forum. Nobody wants to be here but we're glad you came.

Let me start by saying you are doing well for seven weeks out. That is a good PSA score and, you are right, the next one should be lower. It takes a while to work its way out and the 6/7 week test will usually be higher than the one at three months (which is the one to look at, really.)

What you said about your Gleason score is a bit of a jumble. It sounds like you probably went from Gleason 6(3+3) before surgery (based on you biopsy) to a Gleason 7(3+4) or 7(4+3) after surgery (based on your post-op pathology). You doctor can print you a copy of that report and we will be glad to help you read it (although only your doctor(s) can really advise you about it.)

It would be helpful to know whether it as a 3+4 or a 4+3 since that makes quite a difference even though both are Gleason 7 scores. There are basically three types of cells that are called prostate cancer when they are seen during microscopic examination of biopsy samples -- types 3, 4, and 5 -- the Gleason score is the sum of the numbers representing the two most prevalent types. Gleason 7(3+4) would be mostly type three cells with a smaller amount of the more-aggressive type four cells. Gleason 9(4+5) is mostly type four with a smaller amount of the very worrisome type five. That score was my post-op surprise.

There are other things on your post-op pathology report we can help you understand. Whether the cancer penetrated the capsule or appears in the surgical margins is important.

As for your ED it is very very typical at a month and a half after surgery to have nothing going on there. Even if the surgery goes perfectly the nerves get jostled and stretched and they need a while to sulk and then recover. Most men will get back to (their new) normal within two years although things can continue to improve for another two years after that. When the doctor finds a bit more cancer than he expects then he may need to get into the nerves to try to get it all out and recovery can take longer and be less certain. You might talk to your doctor about a vacuum pump and/or injections to keep the tissues stretched if your ED goes on for a long time (more than a month or two from this point.) We have a very active group of injectors here on the forum. Look for "trimix" in thread titles -- it's what lots of us use.

Good Luck. Welcome. Keep us updated as you get more information.
Posted 3/11/2013 4:24 PM (GMT 0)

Sfigato, Medved and Peter,

Thank you so much for taking the time to reply. You have given me a lot of reassurance with your replies.

I'll get my pathology report from the doc. My surgeon is sending it to my family doctor so I'll pick it up there. All I know is that I was a Gleason 6 based on the biopsy and ended up a 7, as they found some aggressive stuff within the gland.

Will let you know regardless. Thanks again for making me feel better  :-)

Kieran

Posted 3/11/2013 4:53 PM (GMT 0)
Kieran - welcome to our corner of the world. Sorry you need to be here but it's a great place to be.

Sounds like you're doing great. It takes a long time to recover so give your body time to heal and you'll be fine.

Take some time out to enjoy life.

Keep us updated on your progress.
All the best,
Andrew
Posted 3/11/2013 5:05 PM (GMT 0)
Welcome Kieran,
The part of the "7" that is classified as "4" will be what the surgeon will regard as aggressive, but 0.019 suggests the surgery has got it out.

There a few other guys here diagnosed and operated on in their early 40s, (I was 48) not much consolation, but it can help to know you're not the only one.

Well done with getting back to work and being pad-free.
Keeping the blood flowing with something like cialis is usually a good thing, but although I had no ED most guys here have had it and few have got much response as early as 7 weeks out. But it's important to keep "exercising" and not just on your own either (Even though I have little ED - I get a much better response with my wife than alone).

It's never wrong to ask questions - my docs have all agreed with me when I have said that I woukld alwasys feel that I had asked one question too many than onwe too few. Not quite sure what questions are needed at present, as that PSA score you got is a pretty good answer to the most important question at this stage. (0.019 entitles you to join what we call the zero club - a true zero is a bit of an elusive concept with PCa)
Posted 3/11/2013 5:15 PM (GMT 0)
Kieran - welcome to our place, you'll find lots of help, information and support from the guys (and gals) here!

Congratulations on the success of your treatment! First and foremost, a PSA of 0.019 is fantastic! 2nd on the list of the "big-3" is that you're continent - another "hell yeah!" On the ED front, I'll let others that have gone down that path chime in as they will be the expert/experienced help - but from everything I've garnered you're about where it is expected to be. You're not that far out from surgery, so be patient - KEEP TRYING! - and it will all work out.

Continued best wishes for more success and more ZERO's!!!
Posted 3/11/2013 8:49 PM (GMT 0)
Thanks guys for all your help. I'll be in touch when I get the report.
My wife tells me I was 3+4 (she can read upside-down!)
Posted 3/11/2013 11:34 PM (GMT 0)
Your golden man,now ease up ,just eat well, moderation in all things, exercise from here on out " its an inside shower" Dr. George Sheahan, circa 1970. And enjoy your family and your life …..
Posted 3/12/2013 8:15 AM (GMT 0)
Thanks man, great advice. Well put.
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