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Lymph node spread- what does it mean?

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User
Posted 24 Jul 2023 at 09:11

Feeling a bit sick. Husband had RP yesterday. Gleason 7 (4+3) T3a?b. Surgeon been and told him that evidence of spread to lymph node and re prostate took the maximum away to give the best possible margin. Will know at 8 week follow up whether radiotherapy will be required. To me this doesn’t sound great news - would really welcome any thoughts on this … we won’t know yet re seminal vesicle involvement but the fact that they could see clear evidence of spread suggests not just micromets but what do I know I’m not an urologist! 
many thanks

kate 

User
Posted 24 Jul 2023 at 11:15
Before you start panicking, you won't know the actual results until you get the histology report which will take 6-8 weeks and coincide with the consultation with the urologist. He will also need to get a PSA test prior to that. At that point they can decide what the next course of treatment will be.

In some cases, the PSA will come back as <0.01 and it becomes a wait and see what develops situation or they may decide to do more scans and determine an RT treatment.

Either way, as it is often said, the mothership has been removed and then it's a case of determining any secondary treatments.

I hope he is recovering OK and that the shoulder pain is under control - it will take a few days.

As I said, not the time to worry until the report comes back.

User
Posted 24 Jul 2023 at 12:01

With a T3b diagnosis the need for salvage radiotherapy following prostatectomy is fairly common but that is still a curable pathway (and one I followed). Your OH has the same staging and Gleason as I did. I also had the extensive lymph node removal during the RP. It's not the outcome you were wanting to hear after surgery but the lymph node removal should hopefully have taken care of any spread in that area.  It's just a case of sitting tight until the histology results become available.

User
Posted 24 Jul 2023 at 15:09
Positive margins mean that the cancer spread outside of the prostate but the exact extent of it will need to wait for the histology report. It depends on how much they managed to remove - they might have got it all or there may be small amounts left behind that will need RT in the future. It all needs to settle down now so that they can review it.

Just remember that most of us die with PCa, not because of it. He might need further treatment down the road but it's very treatable as others can attest to.

User
Posted 24 Jul 2023 at 21:58

A positive margin doesn't necessarily mean the cancer had escaped the gland. There are two types of positive margin. When the gland is removed, they wrap it in wax and then slice it to look at the sections under a microscope. The two types are:
1. an external positive margin - the cancer was touching the wax - in this case, there is no significant increase in the likelihood of recurrence
2. an internal positive margin - the surgeon accidentally left a bit of the prostate behind. In this case, recurrence is more likely

It seems from what you have posted that the surgeon suspects case 1 rather than case 2 so fingers crossed for the full histology and first PSA test. The lymph node involvement is more worrying than the possibility of seminal vesicle involvement. Did he say whether he was able to save any of the nerve bundles? 

 

Edited by member 24 Jul 2023 at 21:59  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jul 2023 at 22:46

Sorry if I’ve missed it but did they remove the affected lymph nodes?? Hopefully they got it all of they did.

My husband had 14 lymph nodes removed during RALP, he had an undetectable PSA for around 14 months. I got his psa tested every 6 weeks and it has continued to increase since Feb. He had a PSMA pet scan and we get the results this week.

Wishing you the best of luck with the histology results x

User
Posted 25 Jul 2023 at 15:07

After my RP I did ask the surgeon how many lymph nodes were removed. His answer was: I've know idea. I take out everything that looks like a lymph node. Wait for the histology to come back and I'll tell you then. It turned out he had removed 36 nodes! One came back positive.

User
Posted 07 Sep 2023 at 16:56
Ahh, yes, that is a lesson quickly learned :)

I am ok with 1 glass of wine, but the thought of drinking pints of beer has me wondering how I'd cope with the floodgates opening :)

A week away will certainly do him some good - but I'[m not sure about the sun - too much of that at home so Iceland looks pretty enticing at the moment :)

Good luck with the appointment!!

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User
Posted 24 Jul 2023 at 11:15
Before you start panicking, you won't know the actual results until you get the histology report which will take 6-8 weeks and coincide with the consultation with the urologist. He will also need to get a PSA test prior to that. At that point they can decide what the next course of treatment will be.

In some cases, the PSA will come back as <0.01 and it becomes a wait and see what develops situation or they may decide to do more scans and determine an RT treatment.

Either way, as it is often said, the mothership has been removed and then it's a case of determining any secondary treatments.

I hope he is recovering OK and that the shoulder pain is under control - it will take a few days.

As I said, not the time to worry until the report comes back.

User
Posted 24 Jul 2023 at 12:01

With a T3b diagnosis the need for salvage radiotherapy following prostatectomy is fairly common but that is still a curable pathway (and one I followed). Your OH has the same staging and Gleason as I did. I also had the extensive lymph node removal during the RP. It's not the outcome you were wanting to hear after surgery but the lymph node removal should hopefully have taken care of any spread in that area.  It's just a case of sitting tight until the histology results become available.

User
Posted 24 Jul 2023 at 12:47

Thank you Chris & Steve. Really helpful both of you. I know he had hoped to avoid any further treatment as he didn’t want RT/HT but needs must I guess.

Consultant has now been round and said he hoped for clear margins but wasn’t sure so would need the pathology results. Said cancer was v near the urethra. 
so if  I’ve understood correctly, lymph nodes gone and as long PSA stays undetectable it’s watch n wait. A rise will mean RT to prostate bed and poss HT? Is there any significance to positive margins? My understanding is that it makes reoccurrence more likely? 

I know I need to wait until the 8 week appt for more info  but I’m the kind of person who does the research behind the scenes as it helps me to prepare for the worst while remaining hopeful for a positive outcome and to support my husband with a ‘we’ve got this attitude’!

 

User
Posted 24 Jul 2023 at 15:09
Positive margins mean that the cancer spread outside of the prostate but the exact extent of it will need to wait for the histology report. It depends on how much they managed to remove - they might have got it all or there may be small amounts left behind that will need RT in the future. It all needs to settle down now so that they can review it.

Just remember that most of us die with PCa, not because of it. He might need further treatment down the road but it's very treatable as others can attest to.

User
Posted 24 Jul 2023 at 21:58

A positive margin doesn't necessarily mean the cancer had escaped the gland. There are two types of positive margin. When the gland is removed, they wrap it in wax and then slice it to look at the sections under a microscope. The two types are:
1. an external positive margin - the cancer was touching the wax - in this case, there is no significant increase in the likelihood of recurrence
2. an internal positive margin - the surgeon accidentally left a bit of the prostate behind. In this case, recurrence is more likely

It seems from what you have posted that the surgeon suspects case 1 rather than case 2 so fingers crossed for the full histology and first PSA test. The lymph node involvement is more worrying than the possibility of seminal vesicle involvement. Did he say whether he was able to save any of the nerve bundles? 

 

Edited by member 24 Jul 2023 at 21:59  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jul 2023 at 22:46

Sorry if I’ve missed it but did they remove the affected lymph nodes?? Hopefully they got it all of they did.

My husband had 14 lymph nodes removed during RALP, he had an undetectable PSA for around 14 months. I got his psa tested every 6 weeks and it has continued to increase since Feb. He had a PSMA pet scan and we get the results this week.

Wishing you the best of luck with the histology results x

User
Posted 24 Jul 2023 at 23:41
But they can't remove all lymph nodes, only pelvic ones immediately adjacent to the prostate. If more than a couple of the pelvic nodes are affected, the risk of spread to distant nodes is much greater which would put the patient into the advanced / incurable group rather than locally advanced. The pathology and first PSA will be important.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2023 at 07:41

Yep it’s the lymph node involvement that worries me too Lyn. Were able to spare nerves on one side. 

User
Posted 25 Jul 2023 at 07:45

Thank you Elaine. No idea how many they took- husband didn’t ask! Nervous wait but it would be great if they got the ‘nasty’ ones out and we had a breather before/if any treatment is required.

good luck with your results this week- I’ll be following to hear your news x

User
Posted 25 Jul 2023 at 15:07

After my RP I did ask the surgeon how many lymph nodes were removed. His answer was: I've know idea. I take out everything that looks like a lymph node. Wait for the histology to come back and I'll tell you then. It turned out he had removed 36 nodes! One came back positive.

User
Posted 07 Sep 2023 at 13:50
Hi Kate,

Any updates with your hubby?

Hope all is well..

Best wishes

Mark

User
Posted 07 Sep 2023 at 14:32

Thank you so much Mark for asking. He did his post-op PSA test Tuesday and now we wait for an appointment with the consultant to discuss pathology and results. The waiting is horrible. I’ve done as much research as possible about all the potential outcomes and what choices he may have so now have to leave it which I hate as I’m a control freak! husband has now disappeared for a weeks holiday in the sun with a group of mates. He Discovered last night that alcohol and continence don’t mix too well. Half his suitcase was packed with varying types of pads! But a break away from the reality will be good for him. 
have you reached a decision on what you’re going to do? 

User
Posted 07 Sep 2023 at 16:56
Ahh, yes, that is a lesson quickly learned :)

I am ok with 1 glass of wine, but the thought of drinking pints of beer has me wondering how I'd cope with the floodgates opening :)

A week away will certainly do him some good - but I'[m not sure about the sun - too much of that at home so Iceland looks pretty enticing at the moment :)

Good luck with the appointment!!

User
Posted 07 Sep 2023 at 17:26
Hi Kate,

That’s good he’s going away. Take time for yourself too. I worry about my wife and make sure she has a lot of her girlfriends giving her support.

Still a bit unsure as I was in for the Op but when I saw an oncologist for a second opinion he basically said the best path would be hormone treatment then brachytherapy followed but radiotherapy to the pelvic region. He never rubbished the Op but he did give me many reason that it could fail.

Just want to do the right thing.. lots of great advice on here though.

Keep us updated on your situation.. hope the results are good!👍

Best wishes

Mark

User
Posted 13 Sep 2023 at 17:07

We are still waiting for the full results and latest indication is an appointment at the end of October -13 weeks after RP which seems a very long wait. I hate the not knowing . But I have just got the post RP PSA results: 0.04. Is this good or bad or unclear? Any advice/thoughts welcome x

User
Posted 13 Sep 2023 at 17:43

0.04 is a good post surgery PSA result. Similar to mine, which by 3 months was then down to 0.006, undectable.

Is it intended there is a further blood test a week or prior to your end October meeting, which is at 13 weeks, close to 3 months post surgery?

P.

User
Posted 13 Sep 2023 at 17:59

Thanks P- that’s good to know … not sure we’re out of the woods yet (mind you are we ever?!) given my OHs initial diagnosis but at least it’s not quite as doom laden as I initially thought. Thank you for taking the time to reply. 

User
Posted 13 Sep 2023 at 18:01

Ps forgot to add as at now no further PSA test requested but guess that could change 

User
Posted 13 Sep 2023 at 18:27

Great result.

I see a lot of people on this site, needing blood forms to get PSA tests. Maybe I just have a good relationship with my GP, or the fact I just tell the receptionist to book me in for a PSA test rather than ask to be booked in. Anyway a 3 monthly post op PSA test would be a normal thing to do so I would just walk in to your GP surgery and tell them you want your PSA taken mid October in time for your end of October appointment. The biggest kickback I have had was the receptionist saying "has this been requested by the hospital" to which I always reply "yes", because I'm sure they would have requested it, but probably forgot to tell me.

I wouldn't describe myself as arrogant (but the GP's receptionist would). If you are timid the NHS is not a forgiving place.

Dave

User
Posted 13 Sep 2023 at 18:50

Great advice Dave- thank you. That seems a very logical step to take- to just book in for another one prior to meeting the consultant. I’ll adopt your ‘don’t mess with me’ attitude with the receptionist! 

User
Posted 27 Sep 2023 at 19:57
Hi Kate,

How are things going for your OH?

Best wishes

Mark

User
Posted 27 Sep 2023 at 21:05

Hi Mark

thank you so much for asking- I did a post under a separate thread . I’m never sure what the etiquette is! A bit of a mixed bag is how I feel things are. We had a last minute call into see the surgeon to get results. So he was pleased with the 0.04 result ( possibly even surprised) because rest of it was a bit pants: seminal vesicle invasion, one positive lymph node and upgrade to Gleason 9 (4 +5) and ‘quite a lot of disease’. Pretty sure there’s going to be reoccurrence sooner rather than later. Another PSA test in 3 months will indicate where things are heading. We did a repeat PSA at the hospital and it was still 0.04.  OH being very positive but accepts that probably got RT coming down the path. Got to hope that will be it for a long long time. 
How are  you doing Mark? X

User
Posted 27 Sep 2023 at 21:14

Mark I’ve just seen your post on your thread. How are you feeling about things? Good that no positive surgical margin- forgot to say OH had that as well. But like you he had a PSMA scan privately and it didn’t pick up the lymph node … so for you you’re waiting for your first PSA test? 🤞 hope it’s undetectable x

 
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