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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.
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At UCLA I had 6 months of ADT and Erleada then surgery then 6 more months of these meds for my gleason 9 locally advanced. That was 3 years ago. Studies have indicated that I may be event free for 41 months from the beginning of treatment. I think that this aggressive treatment was good for me. I had side effects from the meds but they were tolerable. My doctor has advised me that the cancer will not kill me and I think that he was thinking of me driving the freeways in LA. It was part of his bedside manner
You're way ahead of me, but I feel your pain re waiting mode.
It's awful. Getting the MRI, then waiting to see if anything's been detected.
Getting the biopsy, then waiting to see if there's cancer there at all.
Waiting for surgery...
The only things to do are to think about it & not think about it.
Think about it in terms of being informed about the next steps. Learn what you can, both from guys here and from YouTube videos from other patients and some urologists.
Just don't get ahead of yourself. Only research the very next step that you're waiting to be booked in for.
No point in researching things that may not apply to you.
Worry is a waste of imagination.
The rest of the time, do things that make you smile & forget about health issues until they tap you on the shoulder again.
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1 ReactionI’m 10 months post surgery. Gleason 4+3. Questionable margins. PSA was in the mid 30s going into surgery. Have been undetectable on my three PSA tests since surgery. The first test I had was a Quest labs test that was < 0.02. I didn’t like the threshold being that high, so I switched to the LabCorp test, which has a threshold of less than 0.006. I’ve been undetectable on the two LabCorp test that I’ve had so far. I know that some big cancer centers, including the mayo clinic, don’t like testing anything with thresholds below 0.1. I don’t believe in this philosophy at all. I want to know if somethings growing in me so I can make plans and get appointments ahead of time. I understand that they can’t detect anything well on the PSMA PET Scan until the PSA is above a certain threshold. But, with possible positive margins, I have a pretty good ideas as to where the cancer might be if it grows back. And with all the delays of getting appointments, want to have my ducks in a row if it does come back. Having said that, I also know that having a very low threshold test and being below that threshold puts me in a good place for now.
The waiting is awful between the tests. However, I also know that I’m in a better place than I could be. I’ve done all the recurrence nomograms and know what my odds are of recurrence. They are definitely higher than 50% in the next ten years.
To answer your real question, have people been in this DMZ and then never had an occurrence? The answer is absolutely. I would also say that the guys that do not have a recurrence are very much under-sampled on these forums. You might see somebody post something like “it’s my three-year anniversary of being undetectable“ or something like that, but that’s about it if they’re in a good place. However, if you go detectable, of course you’re going to go to these boards and report it. I know I will.
So, consider yourself lucky so far. It may stay that way. It may not. But, such as the world we live in now for the rest of our lives. I hope I’m sitting here worrying about my test and 10 years and still seeing it undetectable.
Good luck to you.
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4 ReactionsOne can’t control if it goes into remission or comes back. It’s in Gods hands I believe. My agent Orange prostate cancer was in remission 52 years after exposure.
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3 ReactionsWhere are you getting treated? Do you have a Genito urinary Oncologist as your team lead? The fact that you are undetectable makes adding the other drugs questionable but a GU doctor would know best. ADT has a lot of negative side effects, you do want to defer them as long as possible.
Problem is you are likely to have reoccurrence due to your complex case, it’s probably just a matter of time. If you catch it right away, then going on ADT can stop it from growing and spreading. For now you have a few years without ADT which is something you would appreciate if you were on it. So many people wish they could just get off of it because the side effects drive them nuts. Getting your doctor to put you on monthly PSA tests would at least allow you to catch it as soon as a reoccurrence happens.
I did go 3.5 years after the prostatectomy without any drugs before it reoccurred, but my case did not involve any complications such as yours did. I found out 12 years later I had BRCA2 so that’s why it keeps coming back. If they had known that in the beginning, they probably would’ve put me on ADT.
Don’t know if there any Mayo clinics in your area, but doctors there would be able to treat you to keep you optimally healthy for a long time.
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1 ReactionMy surgeon in presurgical meeting said that surgery was cure 25 percent of the time. That’s likely you. Don t fret thank. God But don t stop blood testing
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1 ReactionOne small correction: I think you’ve got a decimal place error. PSA is generally considered to be less than 0.01 ng/mL at the Mayo Clinic and at Northwestern medicine in Chicago where I get my care.
Good luck on your journey.
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1 ReactionCongratulations on having undetectable PSA I’m not a medical expert mind you but generally speaking that’s a very positive sign, especially in light of the fact that you had a Gleason eight score and ECE. Let’s hope and pray that it stays that way!
I recommend that you consider asking your doctor for a Decipher genetic test. I have one ordered and I’m looking forward to it providing me with more information about my risk assessment for recurrence and early mortality. Here’s a link for more information.
https://decipherbio.com/decipher-prostate/patients/decipher-prostate-overview/
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1 ReactionThat’s interesting. All the guys on the Reddit boards that go to Mayo say Mayo won’t test for less than 0.1 because of patient anxiety as well as the fact they won’t treat it further until it goes above 0.1 anyway.
This is one reason I stay off the Reddit boards. There’s so much misinformation. I go right to the source. Look at page 3 under the category interpretation.
https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog?testId=64061
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