Hi. I've been following the forum in behalf of my dad since June and wondering your thoughts. He was diagnosed with 2c Gleason 7 (4+3) and had RP June 2018. Recovered excellently and no incontinence and back to sport etc. 6 week PSA 0.08 and 3 month 0.08 and 4.5 months 0.08. Oncologist and surgeon not willing to treat immediately for persistent PSA despite one positive margin in apex as no lymph nodes or seminal involvement and would rather monitor PSA. WE know radiation and ADT are likely but when should we insist we start in your opinions? the surgeon thinks if it increases over 0.1 whereas the oncologist is more reserved and says around 0.16 if it rises at all. We at are on 6 week tests and if he is 0.08 at the next one, the suggest moving to 3 month tests. Appreciate thoughts of anyone in the situation! Such a helpful forum for me and my dad, thank you!
post PSA persistent PSA: Hi. I've been... - Prostate Cancer N...
Sounds like the doctors are on this. I was Gleason 8 (4+4) age 62. Had DaVinci removal June 2016. Total continence right after catheter pulled. First was 0.024 . Next was 0.042. PSA persistent. I DID have seminal involvement. 3 months AFTER RP (38 radation sessions) came out of that at 0.080. So doubling IN/during radiation. My doubling time since RP average is 4.2 months. Some faster, some slower. Now 1.7 two plus years later. MO did 3 body scans unable to locate the cause of the rise. For you as long as there is no PSA movement I wouldn't do anything but observation. Radiation for me gave me issues like irritable bowel. Still ok though.
I was just part of a trial for GA68-PSMA. It located my metastasis. I meet with my oncologist on Monday. I'm sure ADT/chemo is starting quickly.
Observation is good. Best to you for being a great daughter! Best to your dad on this journey.
Thank you so much for your reply. Best of luck to you on your journey too. So much learning to do but there seems to be many options out there, just difficult to know when and what is best. positive thoughts to you and finding a cure to this.
For me it was hard to find why my PSA was rising. Very fast doubling time but staying very low in value. Ask about the best scans options before radiation? Be nice to know where dads PSA hot spot is and radiate there . Targeting. If regular body scan doesn't locate it ask about Axumin. My GA68-PSMA was a trial at UCSF. Both these scans are highly sensitive to finding low PSA hot spots. Read up on them. Unfortunately for me (but good too) my GA68-PSMA found mine metastasized to the lungs. The journey goes on!!
That's really helpful, thank you. I'll certainly read into it. I'm hoping as we know where the positive margin is and at the moment no movement in PSA, the cells lie where we expect them from the pathology. They mentioned benign tissue from never sparing but I'm not sure I believe that! Great news that you've located your metastasis though and now you can target it. Keep positive and best of luck with your appointment this week.
Show this study to whomever said it may be benign tissue. It shows that for men who had insignificant amounts (<5%) of low grade PC (and therefore, any prostate tissue left behind was likely to be benign), 99.4% of them had NO detectable PSA at 3 months to 6 years after prostatectomy . PSA from benign sources vanishes quickly:
He should be talking to a radiation oncologist rather than a urologist about this. ROs are the ones who deal with salvage radiation successes and failures. uros don't know what happens to such patients.
With a positive margin, a GS 4+3, and a persistent PSA, he is certainly (98% chance) headed for biochemical recurrence. This was found in the following study:
It has also been found that waiting until PSA reaches 0.2 had outcomes that were twice as bad:
You may also wish to investigate:
What was the length of the positive margin?
What was the Gleason score AT the margin?
Thanks a lot. Yes we meet with the radiation oncologist and surgeon every 6 weeks so we have been seeing both since surgery. The positive margin as small- can't remember the figure but under the figure they would immediately act. They didn't mention a Gleason score and just mention that there is a chance that prostate cells are in the surrounding tissue at the apex but its not clear whether its benign or if cancer, what grade etc. and want PSA to lead. He has a range of 3+3, 3+4 and 4+3 cells apparently and one side was nerve sparing as it wasnt that extensive on one side compared to the other which was closer to the nerve and a decision made by surgeon to remove as it was too risky to leave ( Path report revealed the nerve taken was in fact clear but I still think the surgeon was right to take it as he couldn't tell with such proximity). We absolutely expect radiation but we have been told that 0.08 and PSA that isn't rising, we could be using a weapon that essentially isn't best used until at least 0.1 and we see movement. We would rather treat sooner rather than later but I suppose every 6 week appointments gives us some comfort that we hopefully will know it's on the move before it's too rapid an increase...
Thank you for the links- really helpful. Will read up on it and look at the report for the exact size of the margin.
Sorry to hear about your dad's predicament. It's disappointing as well as worrying when you'd probably hoped that the surgery alone would have cured the disease. I can only write from experience of being in a similar position.
Firstly, it's good to know that your dad's cancer is still potentially "curable" or at least may not cause premature death.
I understand that your dad is in a dilemma and it is very anxiety provoking to simply not know what's going on. It would be really good if you both knew for sure that the PSA was benign, but I don't think you'll ever really know that. It might be better in some respects if you definitely knew it was malignant, then you could get on with doing something about it. It's being in your current limbo that's worst.
It might be good if you were to have a plan, i.e. a goal or target to fix your minds on. I have read in various places that a PSA of 0.2 is considered a "biochemical recurrence", but that it's not a good idea to let it get that high before doing something about it. Therefore a plan could be that you take action if and when it gets to 0.16, as has been suggested to you. This gives you something to "know" whereas not knowing is the worst.
In the meantime, if the PSA isn't rising or isn't rising that fast, then consider having the tests less frequently, certainly 3 monthly or even six monthly. They are very anxiety provoking. Don't let test results dominate your experience.
Something else you might try, inspired by my urologist, is to draw a graph (e.g. using MS Excel) of PSA level against time of PSA levels so far then project the graph forwards to see when 0.16 might be reached. Not particularly useful at the moment because there are insufficient readings, but with time will become more useful.
In the meantime, it could be helpful for you both to consider that your dad is "in remission". Cancer does change people and even if "cured", you still think of it coming back. When you get new symptoms however slight and which previously you may have just ignored you tend to think is this it again?
Being in remission means, that for the time being, you're OK and you can get on with your life as best you can, making the most of it. This is preferable to simply "waiting" for the next test result, waiting til it comes back.
Physicians are very good at diagnosing and treating, statistics and technical information is useful for generally knowing what the chances of things are. Neither are very good at catering for individual needs and for dealing with the psycho-social aspects of living with cancer. You need to take as much care of that aspect as the physical.
Take care of your dad and yourself.
you're exactly right, it's just an exhausting process isn't it. He describes living with cancer as "boring" as it's always on your mind even if you're currently able to do all the activities you used to. It's the psychological toll that's tough. Your ideas are so helpful and once we get a couple more readings, I will certainly suggest a graph to him and I can already see how this might help by giving him some kind of idea as to what to expect. We are planning on going to 3 months if the next test shows no movement but it's a fine balance isn't it. For now, he would be delighted to be told to go away for longer than 6 weeks and be able to plan stuff which you can't do at the moment with such regular tests and unknown outcomes. They've mentioned anything over 0.1 will trigger discussions of what next so I'm hoping they are 'on it' in regards to the treatment and trust that they know the best way to proceed. Thank you for your very kind thoughts and practical suggestions as it's exactly how he feels. Best of luck to you too and I wish you well.
Yes, it does tend to be there lurking at the back of your mind. I've found practising "mindfulness" techniques helps. Focussing on the here and now, being absorbed in what you're doing rather than letting thoughts of "what its" creeping in.
It might be worth you looking it up.
It's always a good idea to listen to a clinical oncologist, especially if he/she specializes in prostate, or is experienced in dealing with it. Rad Oncologists want to go with their specialty of course. Typically >0.2 is considered chemical recurrence, so I don't know if it's time to consider further treatment. My lab doesn't even give results under 0.1! That is "undetectable."
To spread much, cancers need to be able to trigger growth of new blood vessels to supply the tumor. Quite often when the PSA is around 0.1, the cancer stops growing or slows right down, possibly because it can't get the extra blood supply. I have two friends this has happened to.
So it is possible that his PSA will sit there for a long time or grow very slowly.
I hope that is what happens.
By the way, how old is he?
As a subnote to my PSA above ..mine in 3 months (doubled) went from 0.092 to 0.191. Blowing right through the 0.1 slow down as mentioned ..
You just don't know.?
I met with my medical oncologist today. We discussed the findings of my metastasis to both lungs as I said from a GA68 PSMA scan a week ago Friday. It is THE ONLY place I have metastasis. I have over 10+ nodules. Largest 9mm then they get smaller. PSA the first of this month 1.7 !!
Watch the doubling time. I have a great medical oncologist who works side by side with my radiologist. Also I am close to UCSF. I will be going back there for a second opinion within the next two weeks. It seems what the GA68 "sees" there is no conventional scan here that does. Most conventional scans don't see nodules on the lungs until after one centimeter. Dilemma for my oncologist is he doesn't know if and when ,or how, they are growing! He only has conventional to work with...
Alot to research always. I keep a question page on my desktop. I find something it goes there for me to ask next appointment. Today was a page and a half! I asked everyone one. 35 minutes later we were done . Don't be afraid to ask anything!. If you get an answer from the doctor and you don't understand it ..ask him to explain it in a different way.
Thank you. Sounds like your scan has been really helpful to you so best of luck that you can get on top of this early. Lots of research all the time coming out. We will look at the doubling time as we know that's more important than the figure as a marker of aggression.
Keep me posted and thanks again!
update. He has another test today and it's 0.09. In 6 months it's gone up 0.01. They said this is within tolerance of the test and we still need to wait for another increase in December before acting. likely radiation in January but they appear to be calm about this. I guess I am too as it's such a small increase.
I am in the same boat
posted this a few weeks ago
Any advice, opinion or insight would be greatly appreciated
Questions regarding the when(s), how and where(s) of SRT as my uPSA levels have started to rise post-op RP after 2 years.
A big issue is finding the right health insurance plan in case I need treatment in the coming year which is the issue for guys under 65 and medicare. This means I need to know a few options going forward and if the health insurance plan covers them. Hoping for no treatment in the coming year.
A friend of mine just got treated at Stanford with ADT then SRT with a post-op RP uPSA level of 0.05 after 4 years. Blind shotgun prostate bed and lymph node radiation since nothing showed on MRI imaging.
Is blind shotgun radiation preferred over waiting for higher PSA levels, positive imaging locations and targeted radiation?
My uPSA was first detectable at 17 months (with b vitamin supplements being used).
These b vitamin supplements were subsequently eliminated with uPSA being detected again at 26 months post-op RP
I am 60 years old
Ultrasensitive PSA test results - 17 months clean post op RP until positive at 22 months
Radical Prostatectomy 11/19/2015 with Gleason 3+4 at age 56
uPSA test result history
12/20/19 12/13/19 12/6/19 12/4/19 7/15/19
0.010 0.012 0.011 0.011 <0.006
4/3/19 11/29/18 11/16/18 9/21/18 7/16/18 4/30/18
0.008 0.007 0.009 0.007 0.007 <0.006
2/24/18 1/8/18 11/14/17 10/11/17 9/16/17 9/15/17
<0.006 0.008 <0.006 <0.006 0.009 0.010
6/5/17 3/3/17 12/1/16 8/29/16 5/4/16 1/14/15
<0.006 <0.015 <0.015 <0.015 <0.015 <0.02
my medical history is as follows
Genomic Health Decipher test score 0.22 below-average risk, 0 to 1 scale
Genomic Health Decipher test predicts metastasis risk and longevity for 5, 7 and 10 years out.
11/19/2015 Radical Prostatectomy UCSF Dr Peter Carroll da Vinci robotic surgery
Synoptic Comment for Prostate Tumors
- Type of tumor: Small acinar adenocarcinoma.
- Location of tumor: Single tumor. Left posterolateral midgland and base (1.2 cc; slides B10-12).
- Estimated volume of tumor: 1.2 cc.
- Gleason score: 3+4=7; primary pattern 3, secondary pattern 4.
- Estimated volume > Gleason pattern 3: 10%.
- Involvement of capsule: Tumor invades capsule: left posterior midgland (slides B10, B11).
- Extraprostatic extension: None.
- Margin status for tumor: No tumor at ink, but tumor into capsule is less than 0.1 mm from ink; slide B11.
- Margin status for benign prostate glands: No benign glands present at inked excision margins.
- High-grade prostatic intraepithelial neoplasia (HGPIN): Present, extensive.
- Tumor involvement of seminal vesicle: No tumor.
- Perineural infiltration: Present.
- Lymphovascular invasion: None.
- Lymph node status: Negative; total number of nodes examined: 1.
- AJCC/UICC stage: pT2aN0.
Johns Hopkins (Epstein) pathology 10/13/2015
Gleason Score: 3+4=7
2 cores (60% + 20%) (30% Gleason pattern 4)
Kaiser pathology, 9/1/2015
Gleason Score: 3+4=7
NUMBER CORES INVOLVED/TOTAL NUMBER CORES: 2 / 14
TOTAL CARCINOMA LENGTH: 10 mm
PSA 3.2 6/10/2014
PSA 4.8 6/8/2015
PSA 4.4 8/10/2015 (free PSA 7%)
PSA 5.0 9/28/2015 (free PSA 8%)
A) PROSTATE, RIGHT APEX, NEEDLE BIOPSY
-- ATYPICAL SMALL ACINAR PROLIFERATION
-- TOTAL SPECIMEN LENGTH, 44 MM
B) PROSTATE, RIGHT MID, NEEDLE BIOPSY
-- FOCAL HIGH GRADE PROSTATIC INTRAEPITHELIAL
-- TOTAL SPECIMEN LENGTH, 30 MM
C) PROSTATE, RIGHT BASE, NEEDLE BIOPSY
-- FOCAL HIGH GRADE PROSTATIC INTRAEPITHELIAL NEOPLASIA
-- TOTAL SPECIMEN LENGTH, 23 MM
D) PROSTATE, LEFT APEX, NEEDLE BIOPSY
-- BENIGN PROSTATIC GLANDS AND STROMA, 43 MM
E) PROSTATE, LEFT MID, NEEDLE BIOPSY
-- BENIGN PROSTATIC GLANDS AND STROMA, 22 MM
F) PROSTATE, LEFT BASE
ADENOCARCINOMA, GLEASON GRADE 3+4 = 7
ADENOCARCINOMA INVOLVES 2 OF 2 CORES AND 10 MM OF 30 MM
The first involved core from the left base contains 3 mm of Gleason grade 3+3=6 adenocarcinoma and the adenocarcinoma is located 6 mm from the presumed peripheral edge (see note).
The total core length is 17 mm.
The second involved core from the left base contains 7 mm of adenocarcinoma. Greater than 6 mm of the adenocarcinoma is Gleason grade 3 and less than 1 mm is Gleason grade 4. The Gleason grade 4
adenocarcinoma is located approximately 2 mm from the presumed peripheral edge (see note).
The total core length is 13 mm.
NO PERINEURAL INVASION IDENTIFIED