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Cath out, pads on, path in-Gleason 9

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Posted 8/22/2011 12:33 PM (GMT 0)
This was last Tuesday, but I wanted to think about it for a while before I posted. Not sure how I feel at this point. The Surgeon was optimistic and said best outcome accomplished. He is a great guy and I like him alot, but while he was talking, all I could hear was-gleason 9, gleason 9 over and over again. Here is the path rpt.
size 71g 5.5x5.0x5.0 cm (I dont get it, biopsy path said much larger)
Gleason upgraded to 5+4=9
right lobe 50-70%, left lobe 10-15%
EPE-Present, Focally, right periprostatic adipose tissue
SVI-Neg
Margins:
Invasive tumor cells extend to right cercumferential surgical margin
Poximal base (bladder) urethral surgical margin indeterminate-Really?
LVI-Neg
Perineural Invasion-Present
LN-Neg
pT3apN0Mx

Stage from 2 to 3 now. This seems pretty mixed to me. I think my road just got some more curves and is longer than hoped for. My doc wants me to start RT once I get the incontinence under control.

I am just a little dissappointed as I think my expectations were to high. I was hoping for the doc to say "You're done unless future psa's say otherwise".

What is your opinion on my path rpt? Thx.
Posted 8/22/2011 12:54 PM (GMT 0)
Sorry to hear you didn't get the path report you had wished. Plently of guys here have been in your shoes. Since you have time to consider your next move, if it were me, I would look around for some second opinions, maybe from MD Anderson or another famous cancer center. Some people with similiar path reports start HT then go with RT. I would definately look for an aggressive approach. I am sure some of the G8 and G9 guys will weight in with their experience. I wish you the best in your next steps, pretty soon you will be one of the "been there, done that" guys giving advice to the new guys. Hang in there and take some deep breaths.
Ron
Posted 8/22/2011 1:05 PM (GMT 0)
Startech,

I still consider myself a newbie around here, and seem to be asking for info/help more than offering it. So really don't have any deep wisdom to share, but the good news is you got it out, the very important step. Now you know what you are dealing with. That is the main reason I chose surgical removal over other treatments.

I too did not get the path results that I expected, although at lower levels than yours. I am in the process of digging deeper into the information to get a better understanding. 

#1, get a 2nd opinion from one of the "best" regularly recommended here. It helps confirm what you've been told so you cane make decisions with more confidence. Getting the right treatment is the priority.

Keeping you in the thoughts and prayers.

 

Posted 8/22/2011 1:10 PM (GMT 0)
 

Hey Startech,

So sorry your path report was not what you expected. At least you have this forum and will find all the advice and recommendations you will need to best make your treatment decisions going forward.  If I remember right you are in Texas and have so many good cancer centers to search out for the best treatments.

Good luck and we are all pulling for you to beat this.

Terry

Posted 8/22/2011 1:30 PM (GMT 0)
Startech:
I know this is not what you wanted to hear/see. You now move forward. My thinking is that with a biopsy G8, psa 49, your path stats are actually better than might be expected. That is a right lobe that is mostly tumor and a significant tumor on the left. I am guessing that you have radiation in your near future. Psa will tell the tale. We are fortunate to have such a monitor for our disease, rather than waiting for symptoms or shooting in the dark (almost literally when using radiation).
For pre and post surgery this is a reasonable path finding and allows hope for the future. Maximum vigilance will be in your cards.
Posted 8/22/2011 1:30 PM (GMT 0)
Hi Startech,

Sorry to hear your news. We're in similar situations. When I discovered after surgery that I went from G7 to G9, there was a bit of shock, to say the least. Then when I found out my post-op PSA was undetectable, I elected to wait for further therapy until after my PSA started to rise, just in case I was one of the rare lottery winners. Some articles suggest that waiting for RT should have the same effectiveness as immediate RT if your post-op PSA is < 0.01, so long as you start RT somewhere between .05 and .1.

When I saw my PSA go to .01 after seven months, and then to .03 two months later I decided it was time to move, regardless of whether the ultra-sensitive test could be showing PSA from benign tissue. My positive margins status put me in much greater likelihood of recurrence, and several oncologists urged me to go for HT + RT. I start the RT today, in fact. I'm not sure I would recommend my approach to others, but it was "fun" while it lasted. Just hope I didn't let some mets get a foothold that otherwise would have been zapped.

I hope your recovery goes well. I know how dismal things can be some time when you've got G9, but remember that you there is still a chance for a cure, and there are many great advances just over the horizon, so there is much reason for hope.

Nellie
Posted 8/22/2011 1:39 PM (GMT 0)
Startech,

Man I just have to say it sure sucks to get an upgraded post surgical report but it is what it is. Now what, If I had that answer I would be a rich man. Get knowledge, second opinion, find a wizard Doc that really specializes in PCa. As Knotreel (a friend of mine) mentioned a famed Cancer Center would be a good start. MD Anderson is known around the world.

There are many G9 guys here on HW and I am sure they are going to jump in shortly. Don't despair know your buddies here on HW are here to listen and bounce thought for you.

Cajun Jeff
Posted 8/22/2011 2:13 PM (GMT 0)
Startech,

I am a G9, but a 4+5, so you'll be a bit worse than me in the "aggressive" category.

The path was ugly (you have substantially more % involvement than I did), but as far as EPE, I had multiple points. That said, I would say we were pretty close to the same. Based on the 4+5 and EPE, I went to IGRT as adjuvant without waiting for a PSA rise. I suspect your Uro will suggest the same thing.

As to the size - with the ultrasound at your biopsy, it is a rough estimate. From the path report they weighed and measured.

T2 to T3 - not uncommon to have a change, as that diagnosis stage is based only on what can be seen with tests, and the path is definitive.

We all hope for better. I was prepared for a G 4+4, and that added 5 just put in stone what I was afraid of. My EPE was extensive, so I'm not surprised that it got out into my system. RT may hold better prospects for success for you, with the lesser EPE. 

Can't offer suggestions, not being a doc, but I'll offer my experience if you have questions.

Posted 8/22/2011 2:26 PM (GMT 0)
Startech,

Relative to the possibilities (high PSA, G9) I think your surgery had a very successful outcome. You could have easily had SVI and positive nodes, or worse.

I am also 51 years old. I had a very high PSA of 54.9. Patholgy: upgraded to G9 (5+4) T3b .. SV invaded but 14 lymph nodes clean .. negative margins. For me it was a no-brainer to do HT+RT when I had sufficiently healed and was totally dry. You probably should consider the same approach. Also, I am receiving lymph node radiation despite the clean pathology report. My radiation oncologist thought the risk was too high to not do the lymph node radiation. He also wants me on HT for 3 years total ... sigh. I am still undecided about the total length of time on HT. My one year anniversary on HT is in October.

Posted 8/22/2011 2:39 PM (GMT 0)
Startech, you and I are in pretty much in the same boat but I knew I was G-9 right after the original biopsy..I remember that phone-call well...

I was lucky enough to find an expert, aggressive, radiation oncologist who had access to the latest equipment (Varian RapidArc) who treated me as if the radiation was my primary treatment..I was continent right from the start after surgery so they were able to start the radiation about 3 months after the surgery..Two years (they say) of HT is part of my treatment...

You might be able to start HT fairly soon to clamp down on the PC while you recover from the surgery....If you have not yet consulted with a Medical Oncologist, now might be a good time to do so..

One of the problems I had, my urologist, radiation oncologist, medical oncologist were all at loggerheads with each other and I had to play referee..In the end, the job got done...It's still a work in progress...

Best of luck to you...
Posted 8/22/2011 3:29 PM (GMT 0)
Startech,

None of of would want to hear that news. You are moving forward though. Just maybe not taking the path you wanted. Best of luck to you.
Posted 8/22/2011 4:26 PM (GMT 0)
Fairwind,

That summarizes my radiation oncologist's position -- consider radiation + HT as the primary therapy for a hisk risk patient.

Posted 8/22/2011 6:09 PM (GMT 0)
Startech,

I remembered that you had your surgery on Aug 5th (four days after mine) and I was waiting to hear your results. Now I understand why I had not seen them. I'm sorry that the results did not come back as favorable as you hoped. Unfortunately I can't offer you any advice as my situation is different, however, I will offer you all my prayers that you will find the right treatment and resources to fully conquer this ugly disease. This is just the beginning and I have faith that you will prevail. Good luck and keep us updated on your journey.
Posted 8/22/2011 9:30 PM (GMT 0)
Remember the words, remember the feelings. Wish there was some magic word to say.

I personally just decided from day one that I was going to live each day to the fullest until I couldn't. Travel whenever I can, spend time with my family as much as I can, go to the GFMPH gatherings, whatever I have the opportunity to do. No sitting home saying "oh I can't, I have Pc."

I have elected to gamble on the Ht/Rt. So far, after 27 months it has been a good one. If I hit .05, I have the oncologist ready to go.

Life is good. I am enjoying it, and let the Pc be darned !

Good luck on your journey. Come to Rochester next month and meet a bunch of guys who also have decided to live life to the fullest. You won't be sorry.
Posted 8/22/2011 9:54 PM (GMT 0)
Starttech, Sorry about your pathology report, I'm sure you were hoping for better news. Your uro will recommend salvage radiation in combination with HT. Right now you should concentrate on healing from surgery before you can start RT. Make sure you consult with a good PCa oncologist for when to start your next treatment. I wish you the best.
Posted 8/22/2011 10:41 PM (GMT 0)
Thank you for all of the kind and encouraging responses. Looks like I joined a pretty cool club, though none of us really want to be in it.
Riviere-I like the way you think and was hoping I have the option to wait and see. I support your decision and reasoning. Hoping for the best for you and that it has not spread.

Southern Comfort-My doc did not mention HT, so I am going to get a 2nd opinion. 4 months at a time seems the way to go. Hang in there.

Fairwind- Agreed, looking for more docs now, thanks

BDcyclist- Thanks for thinking of me. We will get through this. Hope you are well.

Good Life- Great attitude. I have been considering it and will make a decision in a couple of weeks. Thanks.

Again, thanks to all- This is why HW is probably the best place to be for those who are affected by PCa. I am very appreciative of you all and wish the best for each and every one of you.

Current plan is to find some more opinions about adjuvent therapy. Figure the logistics of some things also.

Kegel, Kegel, Kegel
Posted 8/22/2011 11:54 PM (GMT 0)
Startech, none of us here have any words that will take away the fear you have at this time. I'm sorry for your path report. I still clearly remember the shock and fear that I felt at that time. I remember coming home, going out to my workshop, and crying like a baby for a long time. I thought my life was essentially over. I was mistaken.

My uro doc understood what I was feeling, and would call me at home from his home, and answer my jillion questions. We spent hours on the phone.

The bottom line is that, while I am, and will always be high risk, a year later I have hope for a normal lifespan. I do not know if I will, in fact, live to be 85......probably not, but that's not my immediate goal.

I am a 4+5, and that's never a good thing, but I am attacking my cancer with everything that current technology has to offer. My first step was an open radical prostatectomy. After my recovery, I began hormone therapy. Neither of these decisions were easy, but once made, I've had no regrets.

HT is tough, but tolerable. You can do this, but I highly encourage you to reach out to others who have walked the same journey. This group On this forum is an eclectic group, but they are good people. Right now, the biggest challenge is gathering enough of the right data to enable you to make the decisions that are right for you.

Ultimately you will have place your trust in a medical professional. There are many good ones. At this point, you really need a urological oncologist. I can recommend Dr Oliver Sartor at Tulane University in New Orleans.

If you need to talk to someone on the phone, then by all means, reach out. There is a large group of us that have met, and talk with each other regularly. I'm available.

I wish you the very best, and you are in my prayers.

K
Posted 8/23/2011 12:21 AM (GMT 0)
Thanks for sharing your story and the encouragement Kbota. Congrats on the continence and 0 club. It is a roller coaster for me right now, but I am maning up.
Posted 8/23/2011 12:56 AM (GMT 0)
Startech,
Similar circumstances. Gleason 4+5. open surgery January 2008. Noted psa detectability June 2010 (0.06). Had salvage radiation January 2011 with psa 0.08. Most recent psa <0.05. No advice to give, but I would check to see what your first post operative psa is. My thoughts: if first psa is detectable, would strongly consider adjuvant treatment. If not detectable, get your second opinion. Only you can make that decision. Best of luck to you.
Bill
Posted 8/23/2011 3:19 AM (GMT 0)
Startech, really sorry to hear of your Path upgrade. Ditto all previous comments, especially getting another opinion. It's easy to say this, but try and stay positive. Stay in touch with us all.
Posted 8/23/2011 11:24 AM (GMT 0)
Hey Startech

As Douglas Adams said in Hitchhiker's Guide, "Don't panic."
Except for that minor, pesky, little 9 thing our pathology reports are similar. PSA 23, PNI Extensive EPE 70% one side, 5% other pT3aN0Mx both nerves gone....

At two years out, my PSA is still <0.01. I had my incontinence fixed and feel so good I am thinking about getting that other issue fixed.

You did what you could to fix this problem. Your job now is to keep on track and not let everything else fall apart. Eat right, exercise, cut the grass, clean out the rain gutters, lay in the grass at night and watch for Perseid stragglers. You know... Life.

It's not he best pathology report but at least you able to read it.
Good luck to you.
Clear skies.
Jeff
Posted 8/23/2011 12:26 PM (GMT 0)
Thanks Jeff, maybe I will get lucky with my first psa and join your club.
Posted 8/23/2011 1:02 PM (GMT 0)
Startech,

When you get more than one PSA test with no increases you  have a good chance of having no further problems.  Just get back to your recovery and think positive.  When are you scheduled for your first PSA?  I will save your seat for you in the 0 club.  My first test is on the 30th. (I am thinking positive)

Terry

Posted 8/23/2011 1:23 PM (GMT 0)
If I remember correctly, at the end of October. My doc said it does not matter before then. Yeah, lets hope I get to take that seat.
Posted 8/23/2011 1:28 PM (GMT 0)
Startech, you've gotten some great responses from some very knowledgeable guys, and guys who've been down the road you're traveling.  I wish you all the best, and as many guys have pointed out here on HW, tremendous progress is being made in fighting this disease, so the future looks bright in that regard.  Here's hoping your first post-op PSA looks really good. 
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