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Posted 4/17/2011 4:52 PM (GMT 0)
Ken,
I'm curious as to what your PSAs were like following surgery, how many you had before beginning radiation...also, how soon after surgery were you tested, and at what point did you decide to have adjuvant radiation versus salvage radiation? Did your urologist assist with the decision, or did you see a radiologist early on as your PSAs were changing? Thanks for the encouragement. I'm glad things are going so well for you these days.

davidg,
I appreciate your encouraging words as well,....it really seems like a waiting game that may not end for a long time...a little depressing...like waiting for another shoe to fall. It does, however, give me a strong feeling of empathy and compassion for others in the same boat.

Thanks both of you for responding and for your words of wisdom.

Post Edited (runner48) : 5/13/2011 4:04:32 PM (GMT-6)

Posted 4/17/2011 5:15 PM (GMT 0)

John:

My PSA remained undetectable <.01 after RP every three months until 18 months when it suddenly climbed to .13. My uro surg recommended RT as soon as possible. So I had 36 treatments at about the 18 month post surgery mark. My uro was very surprised as the post pathology report showed "clear".  Nope,  as after the RT failure I am now on HT for the last 6 months.  PSA began to climb and double quickly 8 months after RT  from .14 to 3.44 in a couple of months.  My PSA is currently <.04 and going for my next 3 month PSA in another week.  It's a trip man!

Jack

Posted 4/17/2011 5:17 PM (GMT 0)
JF-58,

Sorry to hear about your positive margin, but it's not the end of the world, and it doesn't automatically mean you'll need radiation. I had surgery in November and they found three positive margins. So far my PSA remains undetectable. My doctor and I are optimistic, and he's not recommending adjunctive therapy for me. He says that usually these cells don't survive.

The nomogram that Brampy referred you to is a really good one. I recommend that you get your pathology report and plug your numbers into the calculator. Your numbers look better than mine, and the nomogram showed that I have a 94 percent progression-free probabability after 10 years. This might buy you a lot of relief. It did me:

http://www.mskcc.org/mskcc/html/10088.cfm

Hang in there and don't get ahead of yourself with worry. Your numbers look good to me, despite the positive margin. I think your odds for going 20 years without a recurrence are excellent.

Jonathan
Posted 4/17/2011 5:23 PM (GMT 0)
I have nothing to add  to the excellent comments already made.

But reading this thread is really a compendium of all the emotions I felt.

Yes, your life definitely changes forever.

But you will find that you fear a lot of things, but most will not come to pass.

Good luck to all

Mel

Posted 4/17/2011 5:25 PM (GMT 0)
Jack,

Sounds like you're being put through the mill. Hope the hormone therapy continues to keep your PSA down. After 18 months it must have been shocking to have to face radiation and more worries. At least it's good though that your PSA decreased after the hormones right? Have to agree, it is a trip and not a fun one! Wish you the best on your next blood test. Let me know how you're doing.

Post Edited (runner48) : 5/13/2011 4:04:59 PM (GMT-6)

Posted 4/17/2011 7:21 PM (GMT 0)

My sincere apologies, John, as I ended up centring my last post around me and it's all about you right now.  The purpose of my post was to show you that PC and any treatment pathogy report can take a different direction in every individual case.  Post surgery pathology in my case would have indicated to me curative promise, so each person's bodily response to this nasty creature can be different.  You are only two weeks out of your surgery and your course may be very different from anyone else with the same data.  Settle in and continue to heal and monitor your results very closely.  Your data collection has already begun and with the best of luck the paper trail will be very light.

Jack

Posted 4/17/2011 7:52 PM (GMT 0)
no need to apologize Jack... we're all in this together. It helps to hear everyone's story. Keep sharing and I'd be interested to know what your next PSA shows. Good luck with your next test. I'll let you know about mine too.

Post Edited (runner48) : 5/13/2011 4:05:18 PM (GMT-6)

Posted 4/18/2011 3:11 AM (GMT 0)
John,

Just one more experience to chime in...

I had non-nerve sparing surgery...and a positive margin.  My PSA bounced around beween .04 and .09...then hit .2 five months after surgery.  I did RT with two Zoladex shots at that point.

My  Uro said to look at that more as residual disease than recurence.   The positive margin explained the PSA rise.  .2 seemed like a good decision point for me at the time -- so I went with the additional RT/HT theapy.

THis was 4 1/2 years ago and I'm doing fine.  I can even get a decent erection with Cialis --- sometimes without.

My guy told me when I was at your stage, "It's all about the PSA from here on out".   I think that was pretty good advice.  Hope yours stays low --- which it well could!

Good Luck!

Posted 4/18/2011 12:55 PM (GMT 0)
John,

It seems I misspoke, I went back and looked in my journal and my PSA was not rising when I started IMRT. I was tested one month after my RP and my PSA was .01.

My uro suggested I see an oncologist because of the positive margin and he suggested I see a radiologist. All three strongly suggested that I have IMRT. As I was having IMRT my PSA rose to .02 and then after, for about 2 years my PSA bounced between .03 and .04. For one year it stayed at .03 and now it bounces between .01 and .02.

I had my RP 11/3/06 and IMRT from 4/23/07 to 6/14/07. As a side note, in preparing for radiation I had a CAT scan and a small tumor was found in my right kidney, I had that removed 3/9/07. So ironically, if I didn't have the positive margin that tumor may not have been discovered until is was too late.

I believe four years ago doctors were more aggressive in suggesting adjuvant radiation then they are now. Many studies show that adjuvant radiation is slightly more successful than salvage radiation in preventing recurrence . But there are also studies saying that there is not much of an advantage at all. Go figure. That's prostate cancer in a nutshell - it's all a crap shoot.

Ken
Posted 4/18/2011 1:49 PM (GMT 0)
Ken,

Thanks for the feedback. It's really confusing to digest all this information right now. It seems some of you with the same pathology have gone in different directions with mostly the same results. I think waiting for at least the first PSA, which is about a month away, is all I can do right now. If it's not what it's supposed to be, I'll be seeing an oncologist and/or radiologist and go from there. On the other hand, if it's undetectable, I'll wait for the next one. I don't know what else to do but wait ...

Glad your PSA is in line these days...,

Post Edited (runner48) : 5/13/2011 4:05:44 PM (GMT-6)

Posted 4/18/2011 3:15 PM (GMT 0)
I would like to add that my final pathology slides were read by Dr. Epstein at JH and was informed that the adjacent cancer to my + margin(s) was Gleason 6.

That was “good news” according to a relative of mine, who is an MD and PhD, an Associate Professor of Oncology, Immunology and Urology at JH, and an associate of Epstein’s. He told me that according to a recent study at JH only 1 in 800 patients with similar pathology as mine had recurrence.
Posted 4/18/2011 8:09 PM (GMT 0)
John,
Thank you for asking. My first post-op PSA is at the end of this week.

My energy level has been good. I’ve used an elliptical trainer or treadmill almost every day since March 15th and I started lifting light dumb bells and weights (with surgeon’s clearance) 2 weeks ago. I’ve lost 6 lbs since my surgery on March 4th and a total of 16 lbs (10% of my body weight) since the beginning of the year.

I cannot complain about any QOL SE and I feel very fortunate and thankful for that. However, my enthusiasm for my recovery is somewhat tempered by anxiety over my upcoming PSA test.

Please stay in touch!
Posted 4/18/2011 8:44 PM (GMT 0)
diamonds,

Good luck this week with your result. Sounds as if you're doing great physically..

You are so right about the anxieties, but hopefully it will get easier...

Post Edited (runner48) : 5/13/2011 4:06:09 PM (GMT-6)

Posted 4/18/2011 10:12 PM (GMT 0)
I had Robotic surgery in March 2008. My path report reveal 2 positive margin site....... 1 in the apical section and 1 left peripheral section. My pre surgery psa was only 2.8 and I thought going into surgery that my odds were high for negative margins.... After surgery I was disappointed and question my doctor alot about radiation possibly being next. I was a gleason 6 and he was adamant about waiting things out and seeing where psa test go from here. Using the regular psa tests I have been undetectable for 3 years now and just had my last test in March 2011....

Gleason 6 gives one a good hope for staying undectecable post surgery. If one has a +SM after surgery and a gleason 6, you have a reasonable shot at staying undectacable. Once you get 7 and above, radiation becomes more a a consideration....

Pre Surgery psa 2.8
4 in 12 cores postive at biopsy 5 - 30 %
gleason6 (before and after)
Psa rose from 0.8 - 2.8 over 3 year 2005 - 2008
Posted 4/19/2011 1:16 AM (GMT 0)
woodstock, i go along with what your doctor is saying
Posted 4/19/2011 2:10 PM (GMT 0)
woodstock,

Thanks for sharing.. I'll know my first post-op PSA towards the end of June. The waiting game is hard though, but I am more hopeful especially when I hear news like yours...

Glad to hear you're doing so well..

Post Edited (runner48) : 5/13/2011 4:06:30 PM (GMT-6)

Posted 4/19/2011 2:32 PM (GMT 0)
Just saw the thread today on your positive margin. Want to offer you words of encouragment since I know how you feel. I had my Davinci Surgery in Aug. 2009 with a Gleason 7. After the lab report I heard the words from my Doctor that I had a positive margin. It was like a positive punch to the Stomach! I've not read all the suggestions on here but I would suggest that you get and read Dr. Patrick Walsh's book I believe titled Guide to surviving Prostate cancer. He has numerous encouraging words and advice on prostate cancer in general and several pages where he talks about positive margins. Of course you need to discuss with your Doctor but I'm taking the approach of 'wait and see' what if any thing happens. I started on a 3 month PSA testing schedule and am currently on a 6 month schedule. I just passed my 20 month post surgery PSA test with a score of 0! My doctor has suggested that if I would ever get a .2 on the PSA then we would look into salvage radiation. So in the meantime its in the back of my mind but doing very well. If you want to chatt on the phone sometime just let me know. I believe my email address is in my profile.

Best wishes!

 

Posted 4/19/2011 4:09 PM (GMT 0)
lewvino,

Thanks for responding and sharing your experience. I'm planning to get Dr. Walsh's book ..it's been recommended several times. I have read extensively but sounds like he covers explaining positive margins very well so I'm sure it will be very helpful. Patience is something I have to work on especially knowing it's going to be years of PSA checks. Living for today is probably the best way to deal with all this..sometimes easier said than done.

Continued good luck to you too!

Post Edited (runner48) : 5/13/2011 4:06:47 PM (GMT-6)

Posted 4/19/2011 10:03 PM (GMT 0)
I asked my doctor to see if he could get me to speak with the pathologist about my positive margin.. Surprisingly, he scheduled it for me right before my 1st post surgery appointment. It was very interesting and different for the pathologist, as he doesn't get many requests like that.
He explained in detail and showed me the slides of the positive margins..(read my entry above) I asked him what he thought my long term percentages were for a recurrence and he stated 50%. I informed my doctor of this and he thought it was much less, given a gleason 6 and stated I had a 70 - 80 % chance of no recurrence. His reasoning was that he sees alot more long term results than a pathologist. Keep in mid, my doctor has been wonderful and very approachable in all ways.

I know that anyone with a +SM has concerns, especially when the whole objective of surgery is to get it all !!! My doctor has stated that he has many patients that had +SM and have not had any issues... Keep in mind they be only 3 - 10 years out though... Still a good sign. Just want to give information to those (us) small group who have to deal with the positive margin issue.... I understand to worry that one goes through waiting for the doctor to walk in the waiting room with your follow up 6 month or 3 month psa results..... I have only had the regualr pas test....Not going ultra sensitive and not recommend by doctor... Hope to hear more from people with positive margins...We nee to hear more !!!!

Gleason 6 post and pre op...... 2.8 pre surgery psa.... 4 in 12 core positive 5 - 30 %

My pathology report stated Extraprostatic extension not identified... The pathologist told me thats because with nerve sparing, there is not enough specimen there to determine if thats is the case... Anyone else have that ???? My doctor mentioned that mine was organ confined.... How can they tell if its organ confine with a positive margin..... ANYONE HAVE AN ANSWER ?????
Posted 4/19/2011 11:55 PM (GMT 0)
Woodstock,

I think there are concerns with a positive margin for a few years, then after 5 or so, if I'm not mistaken, your chances are much less, which seems reasonable. The more I read the more confused I get some days. I have read parts of Dr. Patrick Walsh's book, just got it today..so have much more reading to do. According to other posters, if you have a Gleason 6, your odds are improved, but I'm not sure if that means the same thing if you have positive margins.


Thanks for responding,..and good luck to you Woodstock,
j

Post Edited (runner48) : 5/13/2011 4:07:10 PM (GMT-6)

Posted 4/20/2011 12:02 AM (GMT 0)
John:

Was looking at your stats again. With your original PSA, 2/12 positives, Gleason 6 confirmed and 10% involvement, I would expect you to pull a long string of zeros. Just my opinion, no guarantees or certainties with anything PC

Wish you the best on that first reading, I think that was my worse wait, waiting the full 3 months after surgery for the initial reading.

David in SC
Posted 4/20/2011 12:13 AM (GMT 0)
j

Post Edited (runner48) : 5/13/2011 4:07:37 PM (GMT-6)

Posted 4/20/2011 12:20 AM (GMT 0)
John, I usually avoid giving direct advice, unless asked, and you asked me what would I do. I am pT2c as well, but with an aggressive acting Gleason 7, with 4x the starting PSA you had, and extreme PSA velocity issues. If I were you, and this not remotely to be considered medical advice, just a personal opinion, I would wait. With your pathology, I would not be eager to jump the gun, I would, like I did, wait for recurrance to show its ugly head. You need to continue healing from your surgery, deal with whatever side effects you have, get your strength back, etc. This is a good time for doing all of that.

If you have BCR, it will be determined with 3 readings over the mark, so to speak. SRT is your last curative hope, if, and only if, your surgery fails, and let's hope and pray it doesn't.

The real call of course, is between you and your doctor. SRT was utter hell for me, and to boot, it didn't last 9 months before failing, but that is just based on my personal situation, not to be factored as normal or common. Hope this helps.

David in SC
Posted 4/21/2011 9:47 PM (GMT 0)
I know you want to explore all options even before your 3 month PSA. I did the same thing and asked many questions via e-mails to doctor and visit to Pathologist. They both said all you can do is wait and see when things "shake out".. Of course that is because of your good path report....less +SM... Stiil, we haven't got much of a reponse from our group regarding, how can it be organ confines and yet no extraprostaic extension or no extension into periostatic tissue?

I not one to comment on one's psa test, but if I were a betting man, I would say undectectable..... The nomograms you see are cumulative, so the longer you go the better it should get.... From my point of view, right after surgery, someones psa is about as low as it gets..... Keep us informed....Looking forward to hearing from you and my best of luck
Posted 4/21/2011 11:51 PM (GMT 0)
Thanks woodstock, . patience is key I think, since we will be playing the waiting game for years to come with this disease. Here's hoping for both of us...

Best of luck!
j

Post Edited (runner48) : 5/13/2011 4:08:00 PM (GMT-6)

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