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.8 PSA and just diagnosed Gleason 8

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Posted 10/24/2015 1:48 PM (GMT 0)
"Cannot do surgery if do radion first" is not true. Salvage radical prostatectomy after RT is possible but have adverse events, which are increased compared to primary surgery because of the risk of fibrosis and poor wound healing due to the radiation.

There is no consensus regarding the optimal treatment of men with high-risk PCa. I also selected surgery but I was (only) a G7. I still think it was the right decision for me. Provided that the tumour has low volume, is not fixed to the pelvic wall, and there is no invasion of the urethral sphincter, RP is a reasonable treatment even for G8.

Fact is that patients with high-grade tumours confined to the prostate have a good prognosis after RP. One of the reasons to opt for surgery is the high rate of downgrading between the biopsy Gleason score and the Gleason score.
Posted 10/24/2015 1:51 PM (GMT 0)
It was a relief for me when I decided on a treatment and like you I thought surgery was the best route. You'll do fine - it appears you are in very good hands.
Posted 10/24/2015 4:04 PM (GMT 0)
Wishing you much luck with the surgery. I hope they are able to get every bit of it, and your path report is clean. Please have clear and reasonable expectations for the surgery - I'd say that for every treatment decision. And be prepared to start penile rehab early. In fact, using daily ED meds starting before the surgery may be helpful.

BTW - how many surgeries has this surgeon done and what is his positive margin rate? I'm glad he's taking out some lymph nodes while he's in there - I hope they are negative.

- Allen
Posted 10/26/2015 2:08 AM (GMT 0)
Thanks Allen, this surgeon is one of the pioneers of robotic surgery for prostate and is the one that the other drs. go to to learn the procedure. He does 8-10 a week and is probably up to about 5000 now. The Urology Center of Alabama is supposed to be one of the best so feel like I am in good hands. After looking at my biopsy he would not promise me he could spare the nerves, said he would try to do the ones on one side but not the other. Also is getting more lymph nodes than he normally gets. Anyway I am thinking positive and the wife told him to get all the nerves LOL.

Some one had mentioned you can do surgery after radiation and he did say you could but it was much more complicated and the outcome was not always good.
Posted 10/26/2015 3:23 AM (GMT 0)
He sounds very qualified.

Since you asked...Surgery is difficult but not impossible after radiation. However, a better approach for local salvage is more radiation - they have used both brachytherapy and SBRT for that purpose. Sometimes they use cryotherapy for that. Often, after radiation, the recurrence is not local - but then there was no treatment that might have been curative from surgery or radiation. If the cancer is well contained within the prostate, surgery and radiation are equally effective. If the cancer has spread into the prostate bed and pelvic LNs, initial radiation has the advantage. One should never go into surgery with the thought that salvage radiation is a piece of cake - it isn't - and the SEs are much worse than for primary radiation.

When they take out a lot of pelvic lymph nodes (called extended pelvic lymph node dissection or ePLND) there are two concerns that you should understand at the outset. The first is that even if they remove 20-30 LNs, they may not be removing them all, and the ones that are left may be harboring cancer. The other concern is the risk of lymphocele and lymphedema. I trust your surgeon explained all of this to you. Radiation can be used to treat the entire pelvic lymph node area from the outset, but it carries greater risk of bowel toxicity.
Posted 10/26/2015 11:41 AM (GMT 0)
You're getting good advice here about seeking additional opinions. Do read the Newly Diagnosed sticky thread at the top of the board, especially about getting your slides read at Bostwick or Epstein labs. Your PSA seems incredibly low for a Gleason 8. It's possible you are lower or higher.

There is a subtype of high Gleason, low PSA men who present this way via symptoms or via digital rectal exam rather than PSA. My husband was one of them (GL 9, PSA 3.38 and had a lot of blood in his urine). Your urologist was skilled enough to suspect cancer by the digital exam. Here's a general article about high Gleason, low PSA situations if in fact you are high Gleason, low PSA:

http://urologytimes.modernmedicine.com/urology-times/news/modernmedicine/modern-medicine-news/low-psa-predicts-poor-prognosis-high-grade-pr?page=full

MD Anderson in Houston has done research on high Gleason, low PSA men. It might be worth getting your second opinion there with a prostate oncologist. It doesn't mean you would have to get treated there, but they could lay out all your options. But do get your slides read at Bostwick or Epstein first for a second look since, as everyone is pointing out, your numbers seem very unusual.

For what it's worth, my husband had abdominal surgery (not hernia) six months before diagnosis. While a highly experienced robotic surgeon at Memorial Sloan Kettering was "leaning" towards surgery, he said he would have a specialist in open prostate surgery on hand. My husband booked a surgery date, but we decided to get another opinion. That led my husband away from surgery to hormone and radiation therapy and has had very good urinary control so far, something tricky to come by with surgery, but it takes time and work. High Gleason 8s and 9 often wind up getting radiation and hormone treatment fairly soon after robotic surgery anyway because with those scores "the horse has left the barn." This is all the more reason to have your slides read at Bostwick or Epstein.

It's great that you have such an experienced surgeon nearby since you plan to go that route from the sound of it. When considering options, do compare apples to apples--other Gleason 8s or Gleason 9s. It's possible some of the men you know who had the surgery had lower Gleason scores, a whole different ballgame. But since you asked for opinions, you can see there are lots of people suggesting that you get a second opinion as well from either a prostate or radiation oncologist to weigh all your options.
Posted 10/26/2015 1:43 PM (GMT 0)
If you go to the link below, click on "Survivor Stories" then scroll down. You will see pulldown options. Pull down Gleason 8, then pull down a PSA range from 1.0-2.9. Pull down 3.0-3.9 also. All these will be close to your own profile. This will give you a list personal stories of diagnosis, treatment, and outcomes for people who presented with a high Gleason, low PSA. Some had surgery, some radiation+ADT, some brachy+radiation+ADT, some with surgery then radiation and ADT. The survivor stories will give you apple-to-apple comparisons. You might want to also do the same for GLEASON 9 and low PSAs, also a horse-out-of-the barn category

http://www.yananow.org/query_stories.php#topoflist

Again, get your slides looked at again in case you're a Gleason 7, which means a better chance that your cancer is still contained in the prostate and surgery might be the way to go.
Posted 10/27/2015 10:30 PM (GMT 0)
Thanks for all the suggestions. They have asked for the slides at UAB to have someone else look at them also. Dr Tully did say I was just barely an 8 in 2 cells. He also was using what he said was a newer scale also which went to 5. I was 3s and 4s of course all way over my head so really appreciate all the info.
Posted 12/10/2015 3:02 AM (GMT 0)
Ok, had my surgery last week. Initial follow up today seemed good. Said cancer had penetrated the prostate wall in one place but all margins were clear. Did have some in seminal visicals but they were removed. Lymph node pathology was all negative. Dr. said basically I was cured or should be. But since mine was not normal he wanted me to agree to the Mayo clinic Genetic Decipher Prostate Cancer test. Which would give us a better indication than PSA on having radiation therapy followup. So far all is good and so glad to have that catheter out even if I do have to wear pads for awhile. Those robots are good, very little soreness from the surgery. Praying everything continues to do well. Oh and I did say send the stuff to Mayo Clinic for the decipher.
Posted 12/10/2015 3:36 AM (GMT 0)
Welcome to the other side! I'm not a surgery guy so I can't comment on the pathology, but glad it sounds positive and it's great to know you're feeling good. I wish you tons of good luck with continued recovery and the results from Mayo. Please keep us posted!
Posted 12/11/2015 3:26 PM (GMT 0)
Thanks I am hoping everything continues so well. Almost feel guilty because I never felt bad and all seems to going so well. Will probably go back in to work on Monday.
Posted 12/12/2015 3:46 PM (GMT 0)
On the other hand I think my "john thomas" has almost gone into hiding!!! Sometimes have to look just to find it!
Posted 12/12/2015 3:50 PM (GMT 0)
red, yeah, that happens. Have you started taking cialis daily? It helps bring hiim back.
Posted 12/12/2015 4:34 PM (GMT 0)
Have not started the cialis yet. not sure if I should start right away or wait until stuff heals a little more. Only had the cath out for 3 days. How soon after surgery should one start the cialis?
Posted 12/12/2015 5:05 PM (GMT 0)
I'd say you can start anytime now. What it does is help increase blood flow in the area--it will also help with the continence issues. You might be surprised. I had my first partial erection about 3-4 days after catheter out.
Posted 12/13/2015 4:01 AM (GMT 0)
Thanks, may get started then, tired of him looking like a turtle trying to decide if he wants to come out or not. Amazing how short 6-7 inches becomes ( at least that is what I remember). 6 inches is the width of a dollar bill right?
Posted 12/29/2015 11:21 PM (GMT 0)
How long did your incontinence last after the surgery? I am over 3 weeks out and still have to wear a Maxi-pad during the day. lying or sitting I am ok but standing just drains whenever it wants to.
Posted 12/30/2015 1:00 AM (GMT 0)
Redsea, this is nothing to worry about. 3 weeks is not a lot of time. And for pretty much all of us, more leaks when standing than sitting and more leaks when sitting than lying down

I took about 5 weeks to not be wearing anything, and even then i leaked occasionally. At 3 months i was good but not perfect, doc said it would continue to improve and he was right. At 6 months much better

Patience is a valuable commodity when it comes to continence after surgery
Posted 12/30/2015 1:06 AM (GMT 0)

redsea said...
How long did your incontinence last after the surgery? I am over 3 weeks out and still have to wear a Maxi-pad during the day. lying or sitting I am ok but standing just drains whenever it wants to.

I was just like you are now for several months, more like 6, and still had trouble for at least a year. Mostly OK and rarely wear any kind of pad now, but not 100%. My surgeon (I went to Smith up at Vanderbilt(Nashville) but also strongly considered your guy in AL) insisted my recovery was prolonged because my prostate was so big (107gm). I researched that and it seems to be accurate. So, you may get better much sooner than I did, a lot of guys do.

May you have a rapid recovery in all ways!

Bill in MS
Posted 12/30/2015 8:55 PM (GMT 0)
Thanks guys. Really tired of pads and wetness so glad to hear there is hope.
Posted 12/30/2015 9:36 PM (GMT 0)

Somebody said...

Urinary control returns in 3 phrases:
Phase I – You are dry when lying down at night.
Phase II – You are dry when walking around.
Phase III – You are dry when you get up from a seated position.


... and don't forget to do the pelvic exercises (Kegels).
Posted 12/30/2015 10:23 PM (GMT 0)
redsea....is 'little redsea' coming out of hiding yet?
Posted 12/30/2015 10:53 PM (GMT 0)
Dr. Tully did my surgery on 08/14. He's a little quiet but extremely good. Asked him how many surgeries he had done and it was well over half of the total for the practice. When rehab time comes, they also will dispense low dosage sildenafil (Viagra) for daily use. As best as I can remember, it's about $80 for a 30 day supply. Plus you can take up to five a day when the time comes you feel up to a little "action".
Posted 1/4/2016 2:33 AM (GMT 0)
Hi Halbert, little redsea is peeking out a little more but certainly not his robust sefl!! thanks.
Posted 1/27/2016 3:15 PM (GMT 0)
OK, had the follow up visit and results from my Genetic Decipher test. Turns out I am a "high risk" for metastasis within 5 years (43.9%) which is 7.3 times the average. Recommended starting early salvage radiation which gives a 77.5% chance of No metastasis in 5 years and 76.6% chance of none in 10 years. I will meet with our Radiation Dr. here to determine a plan of action and timeline. guessing will start in April or May.
Still using 2-3 pads a day depending on how active I am during the day. Nights are fine.
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