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Calling all pT3 Club or "The Horse Has Left The Barn Boys"

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Prostate Cancer
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Posted 2/23/2016 1:08 PM (GMT -6)
Micah68,
I understand your concern as do most here.
You are at 0.03, which is a long ways from recurrence. 0.2 or maybe 0.3 is the standard for recurrence.
I'm betting most specialists wouldn't change your treatment yet.
You really should wait a bit and have another PSA test performed.
Then if it is still rising, take a breath and go ask your doc/specialist what to do.
My numbers are similar to yours(except I'm a 4+5), and I chose not to start the ultra-sensitive test simply bc it just causes angst.
Posted 2/23/2016 7:15 PM (GMT -6)
I got an email from JEKNY wanting to join our pT3 Club. Well, he probably didn't really want to join like all of us here but I added him to our list of members. He said he is an occasional poster. He sent me his numbers and it looks like he does qualify to join our club, so his application has been approved. Welcome aboard!

Everyone say hi JEKNY!!!

Bill from Florida



Here is JEKNY's numbers:

Age 55 when diagnosed May 2008

Biopsy 5/08 2 of 12 cores positive

Gleason 6 3+3 Stage T1c

DaVinci RP 7/31/08

Post Op visit 8/7/08 Catheter removed,

Pathology Gleason 7 4+3 Stage T3A

Extraprostatic extension: Present (right mid, right base and bladder neck area) Seminal Vesicles: Negative; Peripheral resection margin: Focally positive.

PSA < .05 2008 -2010 6 month surveillances

PSA jumps to .1 2/2012 went to MSKCC in NYC 5/2012 PSA .7 They recommend wait till PSA .2 before Salvage Radiation. Reach .2 1/2014

Salvage Radiation 3/2014-4/2014 (39 Treatments)

PSA <.05 30 days post radiation.

PSA .1-8/2014,

PSA .4- 2/2015,

PSA .6- 8/2015,

PSA .8- 2/2016

Oncologist wants another PSA in May 2016, MSKCC said to call when I reached a PSA 1.0
Posted 2/23/2016 7:30 PM (GMT -6)
Hey brother Micah, How have you been?

Sorry to see you are slowly on the rise again. I can't help you for advice but maybe some of the others can. I am sitting at <0.06 and I am happy but I haven't been through what you have already been through. If it was me, I would just continue to watch it like you have been told. My doctor said he would like to see a consistent rise before acting, but again, I am way behind you in treatment.

Good luck, I hope you get some input from some of the guys and maybe a referral to a doctor in your area.

Anyone out there have favorite PC Specialist in the Indianapolis/Nashville/St. Louis/Cincinnati area?

Bill from Florida cool
Posted 3/7/2016 12:29 PM (GMT -6)
Big Mac ,

JEKNY's story is scarily similar to mine.

But I wouldn't wait any longer for treatment. You've proven to have failed so move forward.

The doubling time is long so it's not aggressive but why not do the treatment you will eventually need?

Besides Afaik earlier treatment may slightly reduce chance of mets.

If I could do it again, I would have insisted on ADT pre radiation.

I'd rather face an increase in side effects than the chance of recurrence.

Dave
Posted 3/15/2016 6:36 PM (GMT -6)
Thought I would bump this thread to the top to celebrate Mike and Bob's latest results.

Congrats guys.

Just look for the thread in the search box in the right hand corner of the screen reading "Google Custom Search"


Bill from Florida cool
Posted 3/16/2016 1:11 AM (GMT -6)
club member as pt3b.
just updated my profile.
Posted 3/16/2016 1:14 AM (GMT -6)
my profile didnt go through!!!

club member as pt3b.
just updated my profile.

Age – 64 at dx apr 2015
apr 2015 psa 10.517 Gleason 3 +3 = 6
mri apr 15 ca stage t3b, sv involved
bone scan- negative
HT started 10 may 15 lorelin 11.25 3 monthly.
pre radiation psa 0.5
Imrt 40 sessions june 15
6 nov psa .003. 6 months ht completed. advised 3 monthly psa
22 feb psa .003
no significant SEs except hot flashes continuing
Posted 3/16/2016 6:21 AM (GMT -6)
Great job Monty!

You must be very happy with the results after your nearly 1 year fight.

You signature came thru fine.

Time to celebrate!!!!!

Bill from Florida cool
Posted 3/25/2016 4:34 PM (GMT -6)
First post surgery PSA test. .05.

Discussing ART in the next 3 to 6 months.
Posted 3/26/2016 3:30 PM (GMT -6)
There will be strength in numbers let me be ONE of the many a part of the whole. pT3a
Posted 3/31/2016 9:57 AM (GMT -6)
Fourth post surgery PSA test came back today. Exactly 19 month since the surgery day. PSA <.05 this time also. Anxiety is the same the day of the test each time. How many tests are needed before you will not have this PSA anxiety?
Posted 3/31/2016 12:02 PM (GMT -6)
Anxiety probably never stops for our group, but your numbers look great so enjoy!
Bob
Posted 4/1/2016 8:32 PM (GMT -6)
Fly with me, I added you to our club, welcome aboard! Sounds like you are having a battle with this crap. You are not alone any more.

Whenever you want to add something to to this thread, ask a question or just vent, go to the Google search in the top right side of this page and type in pT3 club to find this thread and add a post.

I am not on HW as much lately but someone will come to your rescue.

Gemlin, Congrats on your PSA results. No the anxiety doesn't go away like Bob said. We are all in a holding pattern in this group. I have been holding at 0.06 now for awhile. I just hope it STAYS THERE!

Bill from Florida cool
Posted 5/7/2016 12:38 PM (GMT -6)
Hi all -

Just recently qualified for this group - will have first PSA in a few weeks --
Posted 5/7/2016 2:11 PM (GMT -6)
FYI - Interesting information - I input my information and it comes out to me having a 96% chance of living 15 years post surgery - Nothing was stated about additional treatments, RT or Hormones. For me, something to think about as 15 years brings me out to 84 years old!


Our post-radical prostatectomy nomogram can be used by patients after their surgical treatment for prostate cancer. Using a dynamic statistical formula, this nomogram predicts the probability of remaining cancer recurrence-free at two, five, seven, and ten years following surgery. This nomogram also predicts 15-year cancer-specific survival, meaning the likelihood that you will NOT die of prostate cancer within 15 years following surgery.

post-radical prostatectomy nomogram Link

https://www.mskcc.org/nomograms/prostate/post-op
Posted 5/7/2016 2:55 PM (GMT -6)
Bobby Mac, thank you for sharing the link. I entered my values and the result was 97% to live 15 more years! So your positive margins and 2 positive lymph nodes just means 1% less probability compared to my (better) post surgery pathology. Hopefully we both will live longer and die from something else than prostate cancer. Until further notice just measure the PSA and have belief in the future.
Posted 5/7/2016 3:13 PM (GMT -6)
Gemlin -

If you look at the study/report that analyzes the data - positive seminal vesicles lower that percentage by the most of any other attribute.

Bobby Mac
Posted 5/7/2016 3:28 PM (GMT -6)
Hey Bobby Mac, Welcome to our club and sorry you had to join us!

Hopefully we will have a few other members chime in.

I see you had your surgery 4/20/16. I was on a Caribbean cruise at the same time. I know it was no vacation for you. Oh we will always remember the day of our surgery.

Good luck and as you can see, you are not alone in this journey!

Bill from Florida cool
Posted 5/8/2016 7:35 AM (GMT -6)
May I join this club? I am still new to all of this, but I was told I have "high risk" prostate cancer. Here is what I know so far:
Age 58
Diagnosed Feb, 2016
Gleason 8 (4+4), Pelvic CT positive lymph node, negative bone scan
Surgery April 18, 2016 (DaVinci, still wearing Depends)
Pathology T3aN1 report stated one lymph node was 100% cancer
Ductal cancer, surgeon stated he did not get all of it
First post surgery PSA will be on May 18, 2016
First appointments with Radiologist and Oncologist May 8 and 10.
Posted 5/8/2016 12:43 PM (GMT -6)
Another new member of our club, Dr Who, welcome aboard!

Good luck with your first post-op PSA. I hope your side effects of the surgery are brief. I was in Depends for over 18 months before going back under the knife by having an AUS installed to end the incontinence.

Look up this thread in the search bar in the top right corner of this page if you have any questions or you just want to vent. We'll be here for you down the road.

Bill from Florida cool
Posted 5/8/2016 3:16 PM (GMT -6)
All for one and one for all! With a great group like this perhaps there is a reason to be optimistic!
Posted 5/8/2016 3:27 PM (GMT -6)
Dr Who-

That's the spirit!

Bobby Mac
Posted 5/8/2016 6:26 PM (GMT -6)
Dr Who,

Misery LOVES company! yeah yeah yeah

Bill from Florida cool
Posted 6/9/2016 8:57 AM (GMT -6)
Gemlin suggested I join this group PT3a (ECE) - 7% involvement, gleason 7 = 3 plus 4
Posted 6/24/2016 6:38 AM (GMT -6)
Newtopc,

I added you to the club. Sorry I missed your post, I am not a daily visitor to HW any more. I just stopped in today and saw your post.

If you have any comments or concerns, just look for this thread and add to it, someone will come along and join in.

It looks like you are a seasoned Healing Well member so you know the routine.

Bill from Florida cool
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