Connect
One year past prostatectomy, in waiting mode.
A year ago I had my prostatectomy- Gleason 8, age 71. Path report indicated ECE, but surgeon removed lymph nodes, seminal vesicles and bundled nerves. Essentially, it was the whole roto rooter job to remove all potential new landing zones. Have had three PSA checks in three month intervals since then, all undetectable.
This is a strange place to be. They won't give you radiation or ADT until there is evidence of spread, but with ECE there is probably some micro-metatastisis going on where the prostate used to be and that no one can see. I'm wondering if others have been in this DMZ-like state, but then went on to never have a recurrence. Does that ever happen? Visit this discussion board and you would reach the conclusion it doesn't. Everyone here discusses their on-going ordeals with ADT, radiation, or other treatment. I feel like I am waiting for the inevitable, and in a strange way, almost wish I could get it over with rather than have this hanging over my head, if that even makes any sense. How do you wrap your head around this? Being in this sort of no-man's land can really play games with your head. The psychological impact is something I never really thought about when all of this began a year ago. Now, it's all I think about. Thank you.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Not quite sure what you mean by .01. The standard for undetectable is a PSA below .1. Where does .01 fit in at those institutions?
That link doesn’t work. Do you have another one?
My PSA last month at Mayo was < 0.1 they have never used the ultra-sensitive test for my post RALP PSA tests. Probably to prevent anxiety and because I had negative margins and no EPE. and the fact that BCR is considered at 0.2. I was going to ask for the ultra sensitive test but my anxiety is bad enough so I going to ride with the regular PSA test
-
Like -
Helpful -
Hug
2 ReactionsI just clicked on the link and it opened right up. Undetectable according to Mayo Clinic is defined as
0.01 ng / mL. Same with Northwestern Medicine in Chicgao
Here is the link again. It opened on my IPad and IPhone.
https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog?testId=64061
The National Institute of Health still defines undetectable as less than 0.1 ng/ mL which is a ten times higher threshold.
Strange. I clicked on the first link I got errors twice, a page of invalid link info, now it goes through without an error, as does the second one you posted. Might have been a momentary glitch at Mayo or here, but everything else is going through without a problem here.
I guess if you don’t have an ultra sensitive test then < .1 is as low as it goes, so that’s determined to be undetectable.
Definitely a contradiction in values.
Thanks for this link. It is very helpful to see what they really do.
We need to play the long game.
RP at 72, postop pathology confirmed G 9 w/ EPE (margins, lymph nodes, seminal vesicles clear).
However, 1st 90 day PSA .19, which is called Persistent PSA as opposed to recurrence or BCR (no matter).
Radiation Oncologist txd short term ADT 4 mos, with almost 2 mos of radiation daily to the whole prostate area (WPRT) and pelvic lymph nodes.
1 yr post tx, PSA undetectable at Quest Labs sensitivity of < .02. Now 74 yrs old.
So I am grateful, but dread each 3 month uPSA test.
The Drs used to tx our high Gleason and EPE (or ECE) with immediate Radiation and ADT (adjuvant therapy).
Now they prefer to wait about 6 mos for prostate area to recover from surgery, and initiate tx at or around .2 (which level also allows possible detection by PSMA PET scan).
Many thoughts and comments; almost too many for msg board, but...
Your next tx, which might be years off ?, would be the Salvage Treatment protocol.
While the probability of our G 9 or 8 NOT recurring is small, I would have been happy with a period of years before I needed "Step 2".
Now I worry about what comes next for me as step 3 (have an idea, but do not like prospect).
There is a theory that seems to have evolved that removing the prostate, or mother ship, in the absence of discernable metastases, may delay BCR (or the need never arises).
So "keeping your powder dry" seems like is a good place to be to me.
PSA testing level is an interesting conundrum.
A Salvage Treatment friend at Johns Hopkins is being tested to the .1 level. My JH Rad Onc is testing me with the uPSA. Another RP friend receives the "Super low" testing to 3 digits.
Yes, I share your desire to know if my PSA rises at all, and above the < .02 level.
But I don't know why.
My layman understanding is that the Drs do not treat at less than .2 currently.
So if my PSA rises to, say, .03, I will "lose my shit", but i do not think that there is a tx protocol at that level.
I sometimes wonder if I should test only to .1 since ignorance (as opposed to stupidity) is bliss. But I am sure that I will not change.
My friend with the ultra low testing (my words) goes nuts when his PSA fluctuates from .006 to .007. Really ! ?
So my thought is to try to take solace in the "undetectable " reading and know that there is a Salvage Treatment available when needed. Maybe there will be something new or improved if we can get a few more undetectable years behind us.
I think that we need to embrace our current low PSA numbers and, as difficult as it is to do, enjoy the time we have w/o treatment. Have confidence that there is a next step.
I see so many on this site fighting with 3rd, 4th and more stages of treatment and try to embrace the blessing that is my current status.
Best to all.
-
Like -
Helpful -
Hug
6 ReactionsIt will be a year next month since I had my prostectemy. I’m 72. Gleason 9, extra scapular, etc. I just had my 4th PSA test and still < 0.01. Doctor is very encouraged. Will now get tested in 6 months. He made it clear that the two milestones are 5 years and 10 years. There certainly is a lot of mental anguish, knowing that the next test could be a red flag. I’ve made some dietary changes and continue to exercise(although I’m limited right now as I just had a total knee replacement). I’m enjoying every day. Try and be thankful you are undetectable. Enjoy each day. If and when there are changes in your health, take them on with the same determination you presently have. As I have learned, PC treatments have come a long way and it’s not necessarily a death sentence. I too, worry about the future, but have found enjoying the present has been better for my physical AND mental well being. Best wishes. Health and happiness. 🤞🙏🏻
-
Like -
Helpful -
Hug
9 ReactionsThank you for sharing your thoughts on this. What is BRCA2?
Sounds like the radiologists did a superb job getting you down to .02. I'm certainly no expert, but it seems to me that kind of result has bought you what could be lots of time.