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Positive Margins... Follow up visit questions

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Posted 1/28/2017 12:37 PM (GMT -5)
I was first diagnosed in sept 2016... T2C, Gleason 7, PSA 2.84 age 54. Urologist said we caught it early... No need to worry. Had DaVinci surgery nov 2016. Following surgery was told that some positive margins. Also told final pathology showed 30% of prostate was covered with cancer. Final Gleason was still a 7, however, some cells were an 8. Just not enough to change the overall score.

I'm having my first PSA next week (11 weeks). (I insisted as early as possible) Obviously I'm concerned, feel that urologist and surgeon have underestimated situation up to this point. Would like some thoughts f on those who have been where I'm heading.

What do I need to get out of my doctor?
What about second opinions at this point?
Any other advice or though appreciated...

Maybe I'm overly concerned...

Dean
Posted 1/28/2017 12:51 PM (GMT -5)
Welcome to the forum Dean. That first PSA will be helpful in determining what to do next. Even if you are headed for additional treatment it likely would not occur before 3 months have passed anyway to allow you to heal from surgery. I insisted on 3 month PSA testing to get more data points and I'm glad I did. You might want to do the same.

You should post more details from both your biopsy and surgery pathology reports. It will help others with more knowledge than I get a better picture of where you are at this point.

How are you doing on ED and incontinence ?

Jon
Posted 1/28/2017 1:10 PM (GMT -5)
Welcome. I had surgery in Oct., 2016, and the first PSA was 6 weeks later. I just had blood drawn for my 3 month PSA yesterday.
11 weeks should give you and your doctor a good idea of things. However, a conservative doctor would probably wait 5-6 months for the next PSA. I'd say he wants to see how you are trending.

Salvage radiation could be next if needed. This forum has a lot of people who have been through this and have advice and information.

Keep us posted. Good luck.
Posted 1/28/2017 1:56 PM (GMT -5)

Welcome to the forum Dean. That first PSA will be helpful in determining what to do next. Even if you are headed for additional treatment it likely would not occur before 3 months have passed anyway to allow you to heal from surgery. I insisted on 3 month PSA testing to get more data points and I'm glad I did. You might want to do the same.

You should post more details from both your biopsy and surgery pathology reports. It will help others with more knowledge than I get a better picture of where you are at this point.

How are you doing on ED and incontinence ?

Jon said...


Thanks for the input. ED has not improved... Incontinence seemed to initially be improving, but now I seem to have sudden urgent need to go and is out of control by the time I get to facility. I think part of that may be that when I was home I was closer than work... But do seem to have it at home.

During my next appt (2/6) I'm getting all of the stats to make sure I post them for the panel.

Again, thanks!

Posted 1/28/2017 2:07 PM (GMT -5)
ED and continence do take time and lots of patience. It's really tough to not get frustrated.

Are you doing anything for the ED? Vacuum device and/or pills? If not you should talk with your doc about that too.
Posted 1/28/2017 3:12 PM (GMT -5)
Have not yet tried anything for ed... I'll talk to doc about it

In the past few days I've had two occurrences where I had something solid in my urine. Ever hear of that? First time I saw it in the pad and assumed it was not mine. Today felt it as I passed it and saw in toilet
Posted 1/28/2017 3:34 PM (GMT -5)
Likely a blood clot - did it look like one?

I had quite a few blood clots pass but they cleared up after few weeks. Odd sensation for sure. You are at about 10 weeks so it's possibility I guess but I'm just some random guy on the internet. Another thing to put on the list to talk to your doc about.
Posted 1/28/2017 5:18 PM (GMT -5)
Dean
I'm confused about the comment "some Gleason 8 cells" there is no such thing as Gleason 8 cells, a Gleason 8 score means all GRADE 4 cells, or less often, grade 3 and grade 5 cells.
Your Gleason 7 could be either 4+3 or 3+4. The former means more grade 4 than grade 3 cells (more aggressive cells), 3+4 means more grade 3 (not very ggresive) with some grade 4 cells. Maybe that's what he meant, 3+4?

You should clarify that. Also with positive margins, there is higher risk for recurrence. That does NOT mean that you definitely will recur, just like negative margins doesn't mean that you won't recur.

I would ask for a copy of the pathology report, and so what he recommends for follow up, and if he recommends any further treatment t this time. Also, ask if there was any evidence that some cancer escaped from the capsule

Post Edited (Pratoman) : 1/28/2017 3:22:46 PM (GMT-7)

Posted 1/28/2017 8:57 PM (GMT -5)
great response Prato...that was slippen right on "buy"...your medicos did in fact underestimate your case in happy talk...IMO..
Posted 1/29/2017 7:25 AM (GMT -5)
I would ask the surgeon the reason for the positive margins and the implications for prognosis and future treatments. The path report will be illuminating in that regard. I was stage t1c pre op and ended up t3b after surgery. Subsequent history is below. I was told that positive margin was where I had ECE at bladder neck which makes sense. Doc can't cut too close to bladder.
Bob
Posted 1/29/2017 7:50 AM (GMT -5)
"feel that urologist and surgeon have underestimated situation up to this point."

I tend to agree with your feeling here. G7 is NOT 'moderate' risk in my book, as G4 cancer cells are almost as nasty as they get and will cheerfully eat you if they are not all killed off.
Posted 1/29/2017 8:19 AM (GMT -5)
Hello.
Please know that sometimes takes a while for your PSA to bottom out. My first PSA after surgery was detectable. Two weeks later it was non-detectable (<0.1). My surgeon stated he has seen cases where it took almost 1/2 a year to get a "true" reading. The key is that the PSA keeps on going down with every retest. If it stays constant or starts to go up then you have to start thinking of plan "B".

Please know that even if there is some cancer left you have a lot of options. Most likely radiation or hormonal (or a combination of both). Some recent studies have indicated positive long term outcomes by also using chemo.
Posted 1/29/2017 8:32 AM (GMT -5)
My first PSA about six weeks post surgery was undetectable but due to a positive node I was moved to the next stage of treatment - hormone therapy (ADT) and then adjuvant radiation. Your positive margin might indicate you need additional intervention.

Also recommend you have your tissue samples submitted for the Decipher Test:
"Decipher predicts the likelihood of clinically useful endpoints:

High Grade Disease (Gleason Grade 4 or 5)
5 year metastasis
10 year prostate cancer specific mortality"
Posted 1/29/2017 10:19 AM (GMT -5)
"some positive margins" not a real assuring comment. Even the best surgeons have occasional positive margins... If you ever saw what the environment is like regarding prostate you would understand. But the "some" is very concerning to me. I can understand your anxiety regarding the upcoming PSA.

Your 30% involvement is also a significant number.

My Best to you.

Hero
Posted 1/29/2017 11:19 AM (GMT -5)
I agree that 30% of total involvement is significant...I think the 6 mos to settle down is more the surgeon trying to settle down a possible anxious patient...not Dr Who specifically...just generally speaking...What does bother me about the host of posts like this is the medico's not just being totally upfront with the patients...then again the forum itself and other forums are not exactly putting out all the correct information either...for various reasons...some which may match the medicos...some not...its a problem every where...communication and why we communicate the way we do and not the way we should...we are all "guilty" of this to my view...the game of telephone is played everywhere...with predictable results...when you spot the dots...elementary...as one fictional character put it...Again which is why the maxim of being your own self advocate...caveat emptor...challenging{not tempting} authority is where hopefully the paradigm is evolving...
Posted 1/29/2017 11:56 AM (GMT -5)
Thanks everyone! Really wish I'd known about this group right after my surgery... i spent a great deal of time trying to educate. I really feel like I should be able to pin down my surgeon to ask better questions this visit. I'll have my blood work done one day this week... so i'll know the PSA before my appointment, thanks to MyChart. Once I get the copy of the pathology and better specific answers, I'll update my stats. I know he's told me many of them already... but truthfully my mind was in a fog during that appointment. I thought I was going to get a catheter removed... didn't expect the other news.

Again... Thanks to all for sharing.

Dean
Posted 1/29/2017 4:55 PM (GMT -5)
Dean, where are you being treated if you don't mind my asking?
Posted 1/29/2017 7:49 PM (GMT -5)
St Elizabeth in the Cincinnati area.
Posted 1/29/2017 11:42 PM (GMT -5)
Thanks dean, I guess mychart is everywhere.
Posted 1/30/2017 4:13 PM (GMT -5)
Dean,

My surgeon was the same way. He didn't tell me squat unless I asked. I didn't know what to ask until I found HW, only then did I realize I was in some doo-doo. I would ask your surgeon if they can identify the gleason at the margin, and be sure to request the uPsa test. Also, see if he can request the Decipher test. It can give you some indication if you'll need SRT anytime soon. My insurance didn't pay the $4K, but Decipher wrote it off as part of some relationship with my doc. My Decipher was very low, but I was advised to start SRT from the surgeon and two RO's as my uPsa continuted to rise. No doubt because of my 2 margins and 50% involvement.
Posted 2/4/2017 7:24 AM (GMT -5)
Another quick follow-up.

1. Thanks for helping educate me to be more effective in my visit with my doctor on Monday. I feel very prepared.

2. Just got my PSA back on MyChart and it came back undetectable.

That was a welcome result.
Posted 2/4/2017 9:47 AM (GMT -5)

Dean said...
2. Just got my PSA back on MyChart and it came back undetectable.

Just what we were all hoping for. Take a deep breath, enjoy your weekend and the Superbowl. Now you can focus on those ED exercises.

Jon
Posted 2/4/2017 9:56 AM (GMT -5)
Congratulations on the PSA report dean, great news.
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