Help us prepare for post RP 1st PSA Appointment

[Egvb]

Hi everyone,

My 69 year old father is preparing for his forst PSA January 8th after RP early October.

His stats are in my BIO.

Given the positive margins, EPE and possible Cribriform pattern, I would like to come into this appointment with as much information and as empowered as possible to be his best advocate.

Question for all, could we be doing anything prior to his appointment with the surgeon that will give us more information to make the best decisions? Perhaps Decipher testing or a second opinion pathology done at John Hopkins or another center?

Also if anyone is being treated in Miami and would recommend a RO or MO I would love to receive those recommendations. He is currently being treated at University of Miami.

*** Also, 2.5 weeks post RP his primary doctor ordered a PSA by mistake aling woth other tests that he had to have done, and it was at 0.2, but I guess 2.5 weeks was too soon anyways.

Thank you.

[Justfor_]

His "by mistake" PSA looks good. 2.5 weeks at a 3.5 days max PSA half life, decays his pre surgery PSA of 7.3 to 1/32 or 0.23. By your next test it will be at the limit of detectability. One piece of advice though. Insist on PSA reporting to, at least, two decimal places (three decimal places even better).

[Egvb in reply to Justfor_]

Thank you for your reply and recommendations. What is normally considered undetectable at the 3 month mark? 0.1-0.2 would be BCR?

[Justfor_ in reply to Egvb]

Anything preceded by the less than "<" sign. BUT, <0.1 is grossly deceiving. Aim for <0.01 or <0.02 depending on the lab's analytical precision. Best of all <0.01x for a lab reporting to the thousands.

[Egvb in reply to Justfor_]

Thank you very much.

[street-air in reply to Egvb]

it is more about the change over time. If for example he gets a 0.05 the surgeon is likely to say dont worry, we will test again and see if it is going up down or sideways. If it doesnt change from test to test then they will he satisfied. Cancer grows without treatment, after all.

[ManuteBol1 in reply to Egvb]

If you get an ultrasensitive PSA test from Quest, the threshold is <0.02. I’d recommend a uPSA from Labcorp (if you are in the U.S.), as their threshold is <0.006. Believe it or not, there is plenty of recurrence probability information in those low thresholds in many cases. Don’t be deceived by docs or others that say there isn’t.

[ManuteBol1 in reply to Egvb]

If you had 0.1-0.2 at the 3 month mark, that wouldn’t be classified as BCR. It would be persistent PSA. There are plenty of studies that show how the shorter term (most are done over the first 3 years) recurrence odds shift if your 3 or 6 month PSA is in various buckets below 0.03. The probability differences for recurrence in those buckets are stark. However, the trend in the PSA is also important. For example, if you start at 0.015 after three months and it sits there for two years, maybe it is just benign tissue left behind. But if you start at 0.015 and then go to 0.018 in 6 months then 0.020 three months after that, cancer probably remains. I’d like to see more longer term studies (like 7+ years) done on recurrence odds given various uPSA levels 3 months after surgery, but those are harder to find. In my case, I’m <0.006 after a year, but I was a 4+3 and had some cribiform component and possible small positive margins, so I’m always leery that the disease is still lurking.

[Egvb in reply to ManuteBol1]

Thank you for such valuable information! My father is 3+4 but also has a Cribiform component I believe (Pathology says presents cribiform morphology, but then says no cribiform glands present - surgeon didn’t mention anything so I’ve put it on my list of questions for next appointment. Also a 1mm margin present.

[ManuteBol1 in reply to Egvb]

I noticed that it seemed conflicting about the cribiform in what you had typed. Cribiform just increases the odds of recurrence, as you probably know. Not a slam dunk for anything. Just an adverse finding. I’m sure there are plenty of cribiform dudes walking around 20 years later with no recurrence.

[ManuteBol1 in reply to Egvb]

AI says……learn something new everyday

"Cribriform morphology" refers to the overall architectural pattern of a tumor under a microscope, characterized by a "sieve-like" appearance with multiple small holes or spaces within a continuous sheet of cells, while "cribriform glands" specifically describes individual glandular structures within a tumor that exhibit this cribriform morphology, meaning they have multiple small lumens within their cellular mass; essentially, cribriform morphology describes the overall pattern, while cribriform glands are individual components of that pattern, often used in the context of prostate cancer diagnosis

[T911]

I was treated in Miami. Very happy with Miami Cancer Institute at Baptist Health. Started my journey at Moffitt Cancer Center in Tampa and after going to visit RO Dr Weiss in Miami for a second opinion immediately switched my care to him and his team. Couldn't be happier with the care I received there and the facility itself. Know other people being treated there for other cancers as well and all say the same.

[Egvb in reply to T911]

Thank you. I know people with other cancers that have been treated at MCI too, and have been very happy with their care. I will look into Dr.Weiss as I want to make sure if radiation is the next step we have gotten second opinions and are truly happy with our choice of RO.

[dmt1121]

I didn't see his Gleason score. That is helpful to know because it drives some of your decision making.

[Egvb in reply to dmt1121]

3+4=7

[dmt1121]

This is typically between low and high grade disease. I can depend when it is diagnosed and how it is treated. If aggressively treated, it can be curable, but I am not sure this is true in his case, based on his history.

[NanoMRI]

To prepare, IMO you need to choose a PSA value you will rely on as best indicator, and for years going forward. I and some others, certainly not all, rely on <0.010. My value after my RP was 0.051 and we accepted cancer remained, had spread. I share this fully recognizing there are varying opinions and disparities on the use of ultrasenstive testing and the definition of BCR. My third treatment, salvage lymph node surgery, confirmed six cancerous pelvic lymph nodes at uPSA 0.13 . IMO relying on values of <0.2 and <0.1 and the term term undetectable are dangerously misleading. If the test result suggests cancer remains several more confirmation tests are warranted. I would use 30 day intervals.

Regarding your dads test at 2.5 weeks - this is not too soon - you get a value to consider. Based on half-life calculations the pre RP PSA of 7.3 would reduce to around .2 in this timeframe. As we know one test is not enough. If you are anxious (I would be) you can order your own ultrasensitive PSA test via a service such as RequestATest or WalkInLab. They use LabCorp with values reporting to thousands. You could get your dad tested Monday and have result Tuesday. Based on half-life calculations you do not need to wait any longer for nadir; certainly not until January. I hope this helps. All the best for your family!

[Egvb in reply to NanoMRI]

Thank you so much for all this valuable information and well wishes!

[j-o-h-n]

Greetings Egvb,

Bring a pad and a pen and document conversations or bring along a tape recorder (ask questions). Search our HU history file that contains past posts that probably mention doctors in Miami. You're a wonderful daughter acting as his caregiver. As you know most men are not fond of dealing with doctors, hospital or anything remotely medical. Give your dear Dad our regards and keep posting here and if possible keep updating his bio.

Good Luck, Good Health and Good Humor.

j-o-h-n

[ManuteBol1 in reply to j-o-h-n]

If she brings a tape recorder, half the visit will be explaining what it is to the doctor if he’s under 45.

[j-o-h-n in reply to ManuteBol1]

How freaking true you are.

Answer: a new type of cell phone....

(Note: Since I talk so much I tell people that my mother once told me that as a baby I was vaccinated with a phonograph needle. No laughter, smile or reaction since most people don't know what a phonograph is (was)) p.s. I'm 88.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Tall_Allen]

There's nothing to know before he gets his first PSA. Take it from there.

[Egvb in reply to Tall_Allen]

Happy New Year to everyone!

My Dad just had his first “official” PSA post RP, result was <0.04 , just uploaded in his portal. We will meet (and I mean WE is he lets me attend) in 2 days.

Given his T3a, Cribriform morphology and 1mm positive margin (more info in BIO) anything comes to mind that we should be addressing in this meeting?

[Justfor_ in reply to Egvb]

<0.04 doesn't provide much information at this stage. A lab drilling down to <0.01 or better <0.006 or <0.003 would have been more appropriate.

[Tall_Allen in reply to Egvb]

Great news!