HealingWell
Search Close Search
☰

Looking for thoughts after prostectomy

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/29/2023 12:35 AM (GMT 0)
Mark,

I may have missed it...where are you in upstate NY? I have a daughter who lives in Rochester, and is one of the PACU nurses at Highland.
Posted 7/29/2023 2:25 AM (GMT 0)
Mark, what was the highest Gleason score found in your biopsy? I assume it was G6 (3+3); otherwise I cannot fathom why your surgeon didn't sample a single lymph node. Even with a G6 biopsy, not sampling even the sentinel lymph node (the node that lymph exiting the prostate encounters first) seems like, frankly, laziness.

Except for the small positive margin, the pT2 path staging coupled with a low tumor burden is excellent.

**IF** your PSA goes up in your next few readings, I would talk to your docs about having the Decipher test done on your RP tissue to determine the risk of mets within 5 years based on your cancer's RNA.

I'll be the dissenter here and predict that your 12-week PSA will not be significantly lower than the 8-week reading, given that the half-life of PSA is 2-3 days (do the math starting with your pre-surgery PSA of 4.2). Depending on the next reading, your doc will give you your PSA-testing schedule for the immediate future. Like all of us post-RP men, you'll be monitoring your PSA. Even though PSA is an imperfect tool for detecting cancer, we are fortunate that after surgery it becomes an exquisite indicator of what's going on regarding the growth of any cancer (and any fragments of healthy prostate tissue) left behind.

Please keep up posted. I wish you all the best,

Djin
Posted 7/29/2023 12:04 PM (GMT 0)
Safe bet Djin, keep in mind that Prato said 0.05 is the lowest value that MSK reports.
Posted 7/29/2023 12:13 PM (GMT 0)
Here's what I experienced with using a surgeon and hospital some distance from my home for my RALP:

Following the surgery, I only saw my surgeon one or two times. After that, I had my follow up with a local, small town urologist, who did the PSA in his office. I had regular visits (every 6 months) with him until I moved away 18 months after the surgery. At that point, I consulted with a urologist where I live now, and he saw me annually until I reached the 5 year mark. He retired about then, and since then I'm having my family practice doctor order the PSA as part of my annual blood work. If I ever have a change, then I will get a referral to an oncologist.

Mark, if your PSA goes undetectable (<), then unless you really enjoy your trips down to NYC, there is, IMO, no reason to keep going there for follow up. Your GP can handle ordering your PSA every 6 months, and eventually annually.
Posted 7/29/2023 1:07 PM (GMT 0)

Mumbo said...
Safe bet Djin, keep in mind that Prato said 0.05 is the lowest value that MSK reports.

Mumbo, I'm thinking that the lowest value would be <0.05, with the less-than sign, just like all other PSA tests that I'm familiar with, in which case 0.05 would represent a measurable concentration rather than "undetectable."

I go for my next blood draw for my uPSA test early next month at my doc's practice. Although my blood is sent out to a nearly Labcorp facility for their uPSA test (<0.006 undetectable), all his other patients use an in-house Labcorp assay that goes down to 0.05. I'll ask him if it reports undetectable with the < sign (although MSK could be using a different assay, of course).

My take-away from the literature on BCR risk based on one's post-op nadir is that <0.01 is best, 0.01-0.03 good, and above 0.03 less good. Of course, one's nadir often occurs several months after surgery. My feeling here, however, is that if the 0.05 represents a measurable amount--as opposed to the test's undetectable--it's on the high side, statistically/prognostically speaking. I'll also ask my uro if he sees a different incidence of BCR for his patients who are above vs. below 0.05 on their first post-op test. I could be wrong on this.

Djin
Posted 7/29/2023 4:13 PM (GMT 0)

Pratoman said...
Mark, I would add just a couple of things to the solid replies you have already received.

Important to note... MSKCC uses a cutoff of <.05. Meaning, that their test/assay, does not detect any PSA below .05. So, I just cannot help but wonder if someone in the lab or someone entering the result into the computer/portal left the < sign off by mistake and you are really <.05, meaning undetectable by MSKCC standards. Might be worth asking someone to double check with the lab. Or you can wait until your next PSA. Honestly, if I was showing detectable PSA after surgery, I would want testing done every 3 months. With that said, I'm not clear on when you had your PSA tested and got the .05 result. If it was 3 - 6 weeks after surgery, it might not mean anything,

I asked my RO at MSK why they use .05 as cutoff when more sensitive tests are available, and he replied that they don't consider anything below .05 to be meaningful.

Only other thing I can add, is that at 10 weeks, I think it's very early in the game for erectile function to return. It can take up to 2 years to get to the best you will get

Good luck, stick around, and keep us posted

Thank you Pratoman. That is good info to have I will ask them if it was just a typo. It would make sense if that is their cut off. It would also alleviate a bit of worry. That may be why he said he doesn’t need to see me for six months.

After reading many threads on here I do see that I am very early in the game to have a definite answer on the ED. I will still go see their sexual health crew next month and see what they say. I’m sure much of my concern is just normal at the beginning of the process. You all are helping me see that and it’s reassuring. Sucks but at least all that I’m feeling and going through is normal and somewhat mild compared to some. Thank you again and I will be around for the long haul. I’ll keep updates coming.
Posted 7/29/2023 5:09 PM (GMT 0)

DjinTonic said...

Mumbo said...
Safe bet Djin, keep in mind that Prato said 0.05 is the lowest value that MSK reports.

Mumbo, I'm thinking that the lowest value would be <0.05, with the less-than sign, just like all other PSA tests that I'm familiar with, in which case 0.05 would represent a measurable concentration rather than "undetectable."

I go for my next blood draw for my uPSA test early next month at my doc's practice. Although my blood is sent out to a nearly Labcorp facility for their uPSA test (<0.006 undetectable), all his other patients use an in-house Labcorp assay that goes down to 0.05. I'll ask him if it reports undetectable with the < sign (although MSK could be using a different assay, of course).

My take-away from the literature on BCR risk based on one's post-op nadir is that <0.01 is best, 0.01-0.03 good, and above 0.03 less good. Of course, one's nadir often occurs several months after surgery. My feeling here, however, is that if the 0.05 represents a measurable amount--as opposed to the test's undetectable--it's on the high side, statistically/prognostically speaking. I'll also ask my uro if he sees a different incidence of BCR for his patients who are above vs. below 0.05 on their first post-op test. I could be wrong on this.

Djin

Djin thank you again for writing. My highest Gleason was a 3+4. I posted my MRI and pathology in an earlier post but it’s aways back and lots of reading. I had asked why they didn’t do anything with the lymph nodes and he told me he didn’t see anything that made him think he should do anything with them. He did mention nicking a nerve bundle but he said it was very slight. I tried to attach a photo of the pre op report because they drew the core locations etc on it but couldn’t.

I have sent a message to them via the portal for clarification on the last PSA result. If the cut off is .05 then I’m hoping it was supposed to have a < in front of it. My wife recalls him saying that by their standards my PSA was undetectable. I questioned that and he said that tests measuring less than that are not reliable or necessary. I’m hoping I am just misinterpreting this all. The message they sent me does say 0.05 not <0.05. I’m looking to see if I have the actual report. I’m not the best on the portal.

If it is truly .05 then I will ask about a three month re check rather than a 6 month. Thank you all for your knowledge. It gets me to ask the important questions and I appreciate it.
Posted 7/29/2023 5:15 PM (GMT 0)

halbert said...
Mark,

I may have missed it...where are you in upstate NY? I have a daughter who lives in Rochester, and is one of the PACU nurses at Highland.



Halbert I am in a small town called Constable, NY. We are about 1 hour north of Plattsburgh NY. Way upstate. Rochester is about 4.5 hours from us.
Posted 7/29/2023 6:40 PM (GMT 0)
Mark,

Got it! I'll have to look at a map. Just recalling what I know, I can see why Burlington VT would be the nearest big place....
Posted 7/29/2023 8:47 PM (GMT 0)
Mark, I'm not saying you have anything to worry about now; rather, I'm of the school that thinks the more information one has about one's particular status, the better. More important than one's post-op actual (low) PSA number is one's trend. If one's PSA remains stable over the years, it really doesn't matter what that (low) number is.

A good number of men have their Gleason score upgraded after surgery, after the whole prostate is examined. From what I've seen here at the Forum, perhaps 50% of men with G6 biopsies have a surgeon who routinely takes no lymph nodes for a man with a G6 biopsy. That's OK if he turns out to be a true G6, but if his post-op report comes back with the finding of pattern 4 or 5 cancer (G7 and up), he misses out on information that was literally there for the taking. We now know that risk for metastases (low, average, high) cuts across all Gleason scores (G6 itself can't metastasize, but some G6 men have cancer that can produce higher-grade lesions that can form mets). As the Gleason score increases, the percentage of men in each of the three risk categories shifts upward (I was lucky in having a G9 cancer that tested low risk for mets with the Decipher test, since the majority of G9 men are intermediate- or high-risk).

So yes, there is a difference between 0.05 and <0.05, because the latter might mean your actual PSA might be much lower, e.g. 0.005 (or 0.049, which is essentially 0.05)--you just don't know! I think you'll have a much better idea after your second PSA test: even with test inaccuracies and the small fluctuations that are common (the amount of PSA we are producing probably fluctuates), after a few data points the picture clears.

Djin

Post Edited (DjinTonic) : 7/29/2023 12:50:23 PM (GMT-8)

Posted 7/29/2023 9:46 PM (GMT 0)
I don't think I've seen anyone post it, so I will. This link takes you to a "nomogram" that allows you to enter your information, and it will estimate chances of a recurrence at different intervals (5 years, 10 years).
https://www.mskcc.org/nomograms/prostate/post_op
Posted 7/30/2023 12:05 AM (GMT 0)
I was one of the post-surgery upgrades. I was G6, with 3 positive cores all in one quadrant. I ended up G3+4, with multifocal lesions across all 4 quadrants.

And, no lymph node excision, and I got undetectable at 3 months and have been there ever since.
Posted 7/30/2023 1:42 AM (GMT 0)

halbert said...
I was one of the post-surgery upgrades. I was G6, with 3 positive cores all in one quadrant. I ended up G3+4, with multifocal lesions across all 4 quadrants.

And, no lymph node excision, and I got undetectable at 3 months and have been there ever since.

I was the reverse case: after a G10 biopsy my surgeon did frozen sections during surgery (all came back clear of cancer) and removed 16 nodes, all negative. It's all a numbers game regarding statistics. I had a very good outcome, but my surgeon was prepared for the worst. We all have to play the cards we are dealt; however, IMO there is nothing wrong with playing them wisely ;)

Djin

Post Edited (DjinTonic) : 7/29/2023 5:49:29 PM (GMT-8)

Posted 7/30/2023 3:06 PM (GMT 0)

DjinTonic said...
Mark, I'm not saying you have anything to worry about now; rather, I'm of the school that thinks the more information one has about one's particular status, the better. More important than one's post-op actual (low) PSA number is one's trend. If one's PSA remains stable over the years, it really doesn't matter what that (low) number is.

A good number of men have their Gleason score upgraded after surgery, after the whole prostate is examined. From what I've seen here at the Forum, perhaps 50% of men with G6 biopsies have a surgeon who routinely takes no lymph nodes for a man with a G6 biopsy. That's OK if he turns out to be a true G6, but if his post-op report comes back with the finding of pattern 4 or 5 cancer (G7 and up), he misses out on information that was literally there for the taking. We now know that risk for metastases (low, average, high) cuts across all Gleason scores (G6 itself can't metastasize, but some G6 men have cancer that can produce higher-grade lesions that can form mets). As the Gleason score increases, the percentage of men in each of the three risk categories shifts upward (I was lucky in having a G9 cancer that tested low risk for mets with the Decipher test, since the majority of G9 men are intermediate- or high-risk).

So yes, there is a difference between 0.05 and <0.05, because the latter might mean your actual PSA might be much lower, e.g. 0.005 (or 0.049, which is essentially 0.05)--you just don't know! I think you'll have a much better idea after your second PSA test: even with test inaccuracies and the small fluctuations that are common (the amount of PSA we are producing probably fluctuates), after a few data points the picture clears.

Djin

Djin. Thank you. I don’t take anyone’s input as trying to make me worry. I like as much info as I can get. Unfortunately I am not familiar with G6 biopsies and am not sure what the G9 means. I know that before and after surgery my highest Gleason remains a 7 (4+3) PRAD was a 5. Is there something on my post op report that will tell me anything about the scoring you are mentioning. I used MSKs calculator for recurrence and it asked about Gleason, positive margins etc. It all upped the possibility for sure. Hopefully I hear from them Monday on whether my PSA was a true .05 or <.05. Thank you again for all the info. I will definitely be vigilant in getting my PSAs regularly.
Posted 7/30/2023 3:10 PM (GMT 0)

halbert said...
Here's what I experienced with using a surgeon and hospital some distance from my home for my RALP:

Following the surgery, I only saw my surgeon one or two times. After that, I had my follow up with a local, small town urologist, who did the PSA in his office. I had regular visits (every 6 months) with him until I moved away 18 months after the surgery. At that point, I consulted with a urologist where I live now, and he saw me annually until I reached the 5 year mark. He retired about then, and since then I'm having my family practice doctor order the PSA as part of my annual blood work. If I ever have a change, then I will get a referral to an oncologist.

Mark, if your PSA goes undetectable (<), then unless you really enjoy your trips down to NYC, there is, IMO, no reason to keep going there for follow up. Your GP can handle ordering your PSA every 6 months, and eventually annually.

Halbert so far MSK doesn’t want me to go elsewhere for the PSAs but I’m sure if they go undetectable for a couple years I could do that. Trips to the city aren’t bad now but in the winter and as time goes on they will certainly get old. They do have MSK facilities on my side of the river but it doesn’t save much travel. I hope you stay under the radar for a lifetime. Thank you.
Posted 7/30/2023 7:45 PM (GMT 0)

fiddlecanoe said...
I don't think I've seen anyone post it, so I will. This link takes you to a "nomogram" that allows you to enter your information, and it will estimate chances of a recurrence at different intervals (5 years, 10 years).
https://www.mskcc.org/nomograms/prostate/post_op

Thank you! I used this once before. I don’t recall the outcome but will try it again.
Posted 7/30/2023 8:26 PM (GMT 0)
Mark, I apologize for the lazy shorthand: G stand for Gleason, so:

G6 = Gleason (3+3)
G7 = Gleason (3+4) and/or (4+3)
G8 = Gleason (4+4), (5+3) and/or (3+5)
G9 = Gleason (4+5) and/or (4+5)
G10 = Gleason (5+5)

By "a G6 biopsy" I meant simply a biopsy where the only lesions found were Gleason (3+3). (The overall score/result of a biopsy is that of the lesion with the highest Gleason grade found. Generally speaking, treatment is based on that, in addition to other factors.)

I would add to your signature your "5% involvement" and your final pathology grade: pT2. These are important pieces of information and a pT2, the best grade there is for someone with prostate cancer, is like being awarded a battle medal smile

I saw that the path exam did not confirm the suspicion of tumor in the fatty tissue around the urethra that I assume was based on pre-op imaging. Had tumor been found there, it would have constituted EPE (extraprostatic extension) which gets one the higher grade of pT3a and is a risk factor for recurrence.
Posted 7/30/2023 11:57 PM (GMT 0)

DjinTonic said...
Mark, I apologize for the lazy shorthand: G stand for Gleason, so:

G6 = Gleason (3+3)
G7 = Gleason (3+4) and/or (4+3)
G8 = Gleason (4+4), (5+3) and/or (3+5)
G9 = Gleason (4+5) and/or (4+5)
G10 = Gleason (5+5)

By "a G6 biopsy" I meant simply a biopsy where the only lesions found were Gleason (3+3). (The overall score/result of a biopsy is that of the lesion with the highest Gleason grade found. Generally speaking, treatment is based on that, in addition to other factors.)

I would add to your signature your "5% involvement" and your final pathology grade: pT2. These are important pieces of information and a pT2, the best grade there is for someone with prostate cancer, is like being awarded a battle medal smile

I saw that the path exam did not confirm the suspicion of tumor in the fatty tissue around the urethra that I assume was based on pre-op imaging. Had tumor been found there, it would have constituted EPE (extraprostatic extension) which gets one the higher grade of pT3a and is a risk factor for recurrence.

Thank you Djin. I have updated my signature and appreciate the education on what that stuff means. I guess I had a G7 biopsy. No EPE was great because that was their concern. They showed three locations of ECE in the pre op drawings based off the MRI. I told them to please make sure they get everything out no matter the long term effects. I am very fortunate that they didn’t have to do a lot. I am learning a lot here and appreciate it. I like understanding.
Posted 7/31/2023 1:25 AM (GMT 0)
Mark - Just a heads up, the Signature block has a limit of around 400 characters that requires you be concise as your story expands (hopefully it does not). You may have run into this already. Look at some of the other signatures as examples.
Posted 7/31/2023 3:41 AM (GMT 0)

Mumbo said...
Mark - Just a heads up, the Signature block has a limit of around 400 characters that requires you be concise as your story expands (hopefully it does not). You may have run into this already. Look at some of the other signatures as examples.

I did run into not having enough character space. I will look at yours and others and knock it down. Thank you.
Posted 7/31/2023 12:12 PM (GMT 0)
Once you have the surgery pathology, the prognostications from MRI and biopsy interpretations just becomes part of a long story of how you got here with that does not fit into the box. What begins as a story becomes a box score after a while.
Posted 7/31/2023 12:20 PM (GMT 0)

Mumbo said...
Once you have the surgery pathology, the prognostications from MRI and biopsy interpretations just becomes part of a long story of how you got here with that does not fit into the box. What begins as a story becomes a box score after a while.

Makes perfect sense.
Posted 8/3/2023 4:09 PM (GMT 0)
0.05 may mean something or nothing. It depends if it is a value implicitly below detection of your lab procedure; some do not bother to include the < sign or they miss it by mistake. I also noticed this is the 8 week report. You have to wait to the 12 weeks report that will probably give a lower figure. Stay calm if your urologist is not alarmed.
Even in the case your 0.05 result means something, it is a small value and you have plenty of options. Including just waiting to see if there is a clear pattern after a few more tests or not.
Posted 8/3/2023 10:15 PM (GMT 0)
Mark,
The "trifecta" for prostate surgery is to achieve 1) disease control, 2) urinary continence, and 3) erectile function. While you are not totally out of the woods with number one there's not a lot you can do except to remain vigilant and encourage your doctor(s) to stay on top of it. You will do yourself a lot more good if you spend your time working on the other two.
Other commenters have mentioned that continence takes time but most men will get there in three months to a year. If they do their kegel exercises and keep their expectations realistic most men regain social continence. That's most - not all (*sigh*) - but you'll probably do ok.
Where you can actually do yourself the most good is to work on erectile function. It's not good for a man's equipment to go more than a few weeks without an erection. The extra blood supply is needed to keep the tissues oxygenated and to keep the stretchy bits from shrinking. A normal man will get several erections a night while he sleeps. These nocturnal erections are plenty to keep the hydraulics working. But if the erectile nerves are damaged sometimes these nocturnal erections don't happen and things can start to shrink.
I think you mentioned that pills aren't working for you. Other commenters mentioned using a pump. Pumps are sorta-kinda helpful but they are only so helpful for oxygenating the tissues since they draw arterial blood mixed with oxygen-poor venous blood.
I believe you said that your doctor had mentioned injections. Many guys shy away from the idea of poking needles in their willies. This is understandable but unfortunate. It's easier than you think and it's the best way to prevent penile atrophy while you wait for your nerves to recover.
Sloan Kettering has a good sexual medicine program. You are fairly young for our company here and it's worth a bit of extra effort to retain/regain your secular function.
Posted 8/4/2023 12:55 AM (GMT 0)

jmadrid said...
0.05 may mean something or nothing. It depends if it is a value implicitly below detection of your lab procedure; some do not bother to include the < sign or they miss it by mistake. I also noticed this is the 8 week report. You have to wait to the 12 weeks report that will probably give a lower figure. Stay calm if your urologist is not alarmed.
Even in the case your 0.05 result means something, it is a small value and you have plenty of options. Including just waiting to see if there is a clear pattern after a few more tests or not.

Thank you. My surgeon did say he isn’t concerned about the .05. I have calmed and am ok with waiting for the next test. I’m glad to have found so much info here. Thanks again.
✚ New Topic ✚ Reply
123