Just DX - Gleason 3+5 = 8 - a bit worried...

So looks like I'm where I don't want to be, no offense, just was hoping for a negative biopsy.

My PSA has been going up about .5 over the past few years and last year my doc said it was time for a biopsy.
May 2011 - Age 48 - PSA 2.9 (been on propecia for years) - 12 core biopsy all negative.
Oct 2011 - Age 48 - PSA 3.3
March 2012 - Age 49 - PSA 4.3 after a course of antibiotics.
Had a pelvic MRI - found 2 small areas suspicious for cancer.
13 Core biopsy last Friday - 1 core, Gleason 3+5, 10% to 15% - all other cores normal.

This time the doctor went for the areas shown on the MRI along with normal spread.

I'm really shocked and worried about the Gleason 8! It's good that it's small from what I can tell and it seems to mostly be 3 (also good) but to jump to that 5 is really worrisome.

I'm seeing Dr. Catalona in Chicago - very well known surgeon and PC expert. We didn't get to speak much but he is recommending surgery (of course) and thinks since I'm young there is still a strong shot at a cure - also since it's small and he said more in the center, that's why it was hard to find. I was good with that until I re-read some of Dr. Walsh's book and some follow up on the internet - they all seem to lump anything above a 7 in the "8-10" group and don't seem to have very good odds at long term cure with just surgery. I like the idea of getting it out and knowing what's really going on, but if there's a darn good chance with a 5 in there that it's already elsewhere in my body, then maybe I should be looking at alternatives?

Although I really don't expect the numbers to change, I'm going to try to have my slides sent for a second opinion. I can't imagine there'd be a change, Dr. Catalona wouldn't be using a lab that wasn't on top of it.

I'm also supposed to schedule a bone scan and CT - so that should give me more information about where I am.

I'm just not liking that 8 and being lumped in with the 8-10 group and the worse odds, I guess I'm hoping the fact that it's one core and small % makes up for something.

Thanks for listening - I'm sure I'll have all sorts of questions as this goes on.

Hi Gadget,

Sorry about the dx. My docs all say to treat the very worst aspect, G8, and disregard the G3. They say it is usually worse than the dx and to treat it aggressively. I suggest that you seek out an oncologist that has treated a lot of 8,9,& 10's very effectively. No matter how good the surgeon, his job is probably limited and a top flight oncologist shoud be on board from the start.

Also take a look at HDR brachytherapy/IMRT. If there is a probability of failed surgery you will need radiation. If that is the case, why operate and expose yourself to the risk and side effects of surgery and radiation? Overall, radiation is more effective with high risk than surgery.

Get multiple opinions from experts on everything before doing anything.

As my medical oncologist said to me a few months ago a "Gleason 8 is a Gleason 8."  In November 2009 I underwent surgery -- results of the surgery could not have been better, that is clean margins, no seminal vessel involvement, one nerve bundle removed for good measure.  Very quick physical recovery from surgery.  Went diving off Vietnam three months later (to live is to dive). Yet 18 months later my PSA reappeared, and each monthly test saw a rise.    As things became clear last summer and fall, I realized I am today in the highest risk category, "successful surgery" notwithstanding.  In my case:

>  Gleason 8

>  Rising PSA 18 months out from surgery

>  Doubling time (last summer) of less than three months.

I am now doing radiation and hormones at Sloan Kettering in NY, but probability of this being the end of it is well under 50%.  I cannot do a controlled experiment on myself, but I surprised my wife by saying recently that if I had taken the radiation route two years ago, my situation today could not have been any worse. And I would have not undergone a life changing surgery, for her as well as me.

I would suggest very frank discussions with your providers about the long term implications of a Gleason 8.  Surgeons want to do surgery. I believe a Gleason 8 means there is a substantial risk of systemic disease despite a "successful" surgery.   I am not angry about my choice -- but I know more now than I did two years ago when I was making my decision (I had considered radiation).  As my oncologist said a "Gleason 8 is a Gleason 8."

Best wishes to you.  

NewspaperLover

 

Gadget, it seems to me that the tumor is a small % of the samples. Perhaps this will give you a good chance that surgery can get it all and you can be cured.
Although they are still discovering more about PC all the time, my understanding is that they have genetically analyzed PC and found that there are 24 different types - anything from "you'll die with it and not of it" to as aggressive as melanoma. Perhaps the 3+5 indicates a somewhat aggressive form that you have caught very early in its growth. Kudos for getting your butt in there and deciding to take care of it.

I promise you that once you decide on a course of action, you will be at a much greater state of peace than you are right now. Do your homework, decide on a treatment that is right for you, and then accept that you have made the right choice. You're going to get through this just fine.
You have my prayers for an excellent outcome.
Jeff

I was 7/8 had surgery 8 weeks ago tommorrow. Was told it went great, nodes and tissues clean. PSA at 6 and 7 weeks 4.69. One more test tuesday but meeting with Onocologist at 3pm.

I did not get a 2nd opinion even when urged. Trusted the Surgeon and hopefully it will all turn out ok.

1 pad a day and been way too long for an erection.

Good luck

I was G8 and choose to have RT+HT. So far so good. Just make sure it's your decision.

Ken

Some good news - I had my bone scan and CT scan - both came back negative :) I've sent my slides off to John's Hopkins for a second reading, just want to confirm that 8. Given that the scans were good and I only had 10% to 15% of one core, I'm crossing my fingers that it's all local and that's got me leaning heavily towards surgery.

As I understand it, my only decision at that point is, do I have them stop if there's lymph involvement? Apparently I can request that they check the lymph nodes at the start of surgery and stop if they find it's spread to them, or I can tell them to just go ahead - according to my Doctor, there is some benefit to having the prostate removed even if it's spread only to the lymph nodes. He says there's been some studies that show patients have a better prognosis with it removed and then have radiation - thoughts?

I'm probably leaning towards just getting it out - then I have other options and I'll know the full extent after a complete pathology.

I am still going to meet with an Oncologist to get a second opinion, but right now surgery seems to make the most sense given the rest of my stats - yes I'm an 8, but everything else is looking good.

DX @ 49 - 3+5=8
PSA 3.56
1 Core (10% - 15%) out of 13

Hi gadget,

Don't discount brachytherapy. My husband had surgery but thinking back we should have looked at brachytherapy more closely. I understand the need to have the cancer out of you, thats a very normal and human reaction. But, say, the worst happens and the surgery fails. The next place the cancer goes is to the prostatic bed. Then the normal thing is to move on to Plan B, salvage radiation to the prostate bed.

What brachytherapy gives you is plan A and plan B in one hit. It gives you the cure rates of surgery. However the radiation goes a few millimeters past the prostate capsule so it also radiates the prostate bed. It does this with less side effects than surgery.

The thing about cancer is that instinctively its bad and you want it out. But leaving it in and killing the cancer within the prostate inside you gives you the chance to treat the prostate like a vehicle to kill cancer cells that may have just escaped to the next stage, the prostate bed.

I just thought you may need to hear a different point of view, certainly at the time we heard people talk about brachytherapy and we discounted it for surgery instead because the side effects of surgery were not going to happen to us and the surgery would take all the cancer out. We have been lucky in the surgery but I think our original thinking was not as clear as it should have been.

Regards,
An

When I first saw Catalona back in January, he told me to quit taking propecia. It was obvious he hasn't changed his stance, in fact he said that's where we find the 8's and 9's is after long term use. He did seem surprised that mine was an 8 - he's the one that said my prostate felt "amazingly normal". At the time I didn't stop taking it - he had me try antibiotics and I didn't want to throw one more variable in there - if I had stopped my PSA was bound to go up just from not taking it and I figured if there was anything I doubted stopping propecia was going to fix it at this point.

Since my dx, I have stopped - really just ran out of the script and have been on the fence if I should refill or not. My only concern now is after being on it for years and keeping my prostate small, I don't want it to puff up after stopping if I'm going to have surgery - seems like smaller would be better to operate.

Honestly I go back and forth as to if it had any effect - there is no pc in my family, I eat healthy, and to show up with a 3+5 does make me question where that 5 came from - on the other hand it's very small so maybe it helped???

Hello, Gadget I will echo what Tudpock18 said.  Find a good cancer research center that does 3-dimensional CT simulation scan and "intensity modulated radiotherapy with photon based beams. IMRT. Given your stats I would think you would be a excellent candidate. I completed 44 treatments on Oct 4th and presently on Cassodex and Lurpron. The HT will continue for the next 2 or 3 years.   I feel fine, and always have.  No Side effects that prevents me continuing the quality of life I had before being dx'd. Well, except for the ED part. The radiation can concentrate on the prostate alone, or the surrounding areas which ever the Dr. recommends and do it with pin point accuracy by using the 3-dimensional CT simulation scan before each treatment.  Good Luck, with the treatment you choose, as I wasn't give those options.