Gleason 9 survival?

Welcome to HW.

The G9 guys will be along soon. Not a horrible pathology report. A few things you don't like to see, but time will tell.

Sounds like you're recovering. The hernia has to be slowing you down. Keep walking and before you know, you'll be able to ride again.

Survive? You'll be fine. The next thing you need is that post-op PSA, which will tell how successful the surgery was. It's possible the surgeon got it all, but you'll have to wait to find out for sure.

Even if you need more treatment, you've got a lot of options, so working on healing.

Andrew

Skypilot56 said...
Hi just was wondering if any body had some stats similar to mine and how they are doing? Thanks

2002. Psa. .08
2014. Psa. 3.8
2016. Psa. 19
3-08-2017 RP Mayo Clinic Rochester, Mn
Pathology Report: Gleason 9, both seminal vessels and one nerve cancerous and removed, negative on margins, 35 lymph nodes removed no cancer, tumor was pt3b. Prostrate 45 grams
Doing very well with incontinence, lots of walking helped greatly
4-20-2017 Incarcerated Umbilical Hernia Repair
Back on road to recovery walking very little as I am pretty sore

I'm 61 cross country skier, snowshoer, runner, and biker can't wait to get back on my bike.

As Lapilot asked, how is your PSA doing post op? I imagine results(for guys like us) are all over the place, but my pathology was as bad or worse than yours, with G9, SV+ and I also had a positive margin. I was not real thrilled with that pathology when I got it after surgery. However, it is over 3 years later and I am still here, have not even yet "needed" further treatment. So far so good. Although, many people in our boat go ahead and get extra treatment well before any advance in their numbers indicate they definitely should, and I can't say they are wrong. But my doc was of the view we should wait for some new evidence before we started down a more aggressive path, and I have gone along with his advice. who knows? But it is apparent many of us Hi risk guys can do quite well, certainly with the addition of HT and RT when needed.

Thanks Everybody, I'll find out my psa in June

Welcome to the club no one wants to be in from another g9er, pt3b. We are all in a battle against aggressive cancer. After my pathology my surgeon at Johns Hopkins said " it's crapty" and "you'll be fighting it for the rest of your life" . Not what I'd hoped to hear. 3 1/2 years later I'm still here with no symptoms but lots of treatment history. Expecting an axumin scan in next 30 days to find out why PSA is rising.....again. ( 😡)! The fight goes on!
Bob

I always liked the song skypilot from the 60's so have used it for many years. And yes I'm a pilot but just general aviation.
Larry

You will be just fine with that DX but yes a lifetime of treatment may be in store. however, you still have a chance for a cure or at least a very long remission period. My DX is stage 4 albeit not a G-9 and I am fine. Used to the meds now.
I do not agree with the last Poster that "you are dying and it's a matter of time" As Jim Morrison quoted " We are all dying the minute we were born" so hold your head up and beat the crap out of this monster

The doctors are pretty confident that they got it all but of course we don't know that right now. I'm looking forward to psa in June n yet I'm not as I'm sure you can understand.

Larry

Hi Skypilot,
I have been meaning to respond to your post but quite frankly I don't have anything close to answering your question about G9 survival. I could give you the stats that physicians use but those really are just statistics. Everybody who has been diagnosed to this disease has their own unique case and there really is no way to know how long any of us is going to survive. I depends on so many things in addition to gleason score. Did you have distant mets when you were diagnosed? What is your general health? Your emotional health? These are just a few things that you could consider. Also, do you have any other co morbidities such as cardiac disease. All of these things and more play a part on how long you will survive. Many on this site have thrived for years. Wish I could be more help.

Sky,

Welcome to the forum, and sorry that you've joined the club. My numbers, age and active lifestyle are all similar to yours so I can relate...and maybe offer some food for thought.

First, let me echo what a few guys have already written - be prepared to be your own best advocate. I've been blessed to have great medical resources and have received great care. But...even the best PCa minds differ on some fundamental issues. You must educate yourself, weigh the advice and alternatives and be active in deciding your treatment options.

I was lucky enough to have had a robotic surgeon who has done more of these surgeries than anyone in the world. As a result (I believe) I had little or no surgical complications and I healed quickly including a fast resumption of my very active lifestyle. 6 weeks post op I visited with him and his advice was, based in large part on an undetectable PSA, to do nothing more "until the cancer returns". He explained that with positive margins and a Gleason 9 that it was likely to return eventually but that it might not, so he was not in favor of any additional treatment at that point. Initially I was relieved, but the more I thought about it the less satisfied I was with watching and waiting - under my circumstances. So...read everything that I could (Dr. Patrick Walsh's book is a great resource) and sought out 3 additional opinions.

At the end of the day, 2 of the 3 additional opinions recommended radiation, supplemented by 6 months of ADT, to begin as soon as I was healed from the surgery. So...that left me tied 2-2 (counting my surgeon). My decision then was based on my mindset regarding the future. IF the cancer were to return sometime in the future, then I personally would be more regretful of having not done everything possible now to have prevented that day.

So last September I began radiation treatment and a 6 month course of ADT. I've had no significant side effects from the radiation - just an overactive bladder that should resolve itself as time goes on. The ADT on the other hand has been a little more challenging. Hot flashes, diminished energy and no libido...but I knew all this going in so it wasn't unexpected and is not intolerable. The radiation ended in December and my last monthly ADT shot was in February so I am eager for a return to a normal T level.

Since the post op PSA test I've had 2 subsequent tests and both showed no detectable PSA. Odds are that this would have been the case even if I had done nothing, but as I wrote earlier my decision was based more on the future and my mind set toward it.

Going into surgery I thought that was my last, and only, decision that I would be making about my treatment. Had my Gleason stayed at the pre-op 7 (4+3) or if my margins had been negative than I would have gladly followed my surgeon's recommendation. But...circumstances changed and I had to adapt to them. I'm confident that I made the right decision for me (regardless of how things play out). Educate yourself now while you are healing so that you'll be prepared to do what is best for you when the time comes.

Gene

Thanks I'll have to look for that book. Yep just waiting till I can prop the old t-craft n get up for a ride! Gotta get rehealed back up from this darn hernia surgery then I should be good waiting for that 1st psa test in June n the snow tomorrow up here in northern Minnesota!! LOL

Larry

The matter of time statement...again reminds...of Roy Batty and Deckards interface{apt phrasing dat} at the buildings edge...I get it's { zrobsters statement} genesis...I dispute its revelation...the statement is ok as long as you don't make it a lifetime friend....in the meantime stay active in retirement and faith...or the robbery could be a self inflicted loop{which you personally close}...A to Z...go the A to O{omega} route instead...a digit on the thumb in the upper right corner of my opinion will rid you of any gibberish you may perceive...good luck....