Post RP results ...

User

Posted 20 Sep 2023 at 16:21

OH had a last minute call for an outpatient's appointment today with the surgeon (obviously not on strike!) c 8 weeks post RP.

Good news PSA 0.04 and he's confident that his incontinence will sort itself out.

Bad news: upgraded from Gleason 7 (4 + 3) to Gleason 9 (4 + 5); seminal vesicle invasion; positive margin; one positive lymph node. Now a 3 month wait for the next PSA to see if start early salvage RT. Based on nomogram I've found highly likely that within next 2 years there will be reoccurrence. I'm sure those more experienced will tell me if I'm being unduly pessimistic- I don't think I am, just being realistic. OH coping very well and adopting a positive attitude. It feels like we have a 3 month pass on bad news and will set about having a bit of fun now we are no longer waiting for results. Kate x

User

Posted 20 Sep 2023 at 21:01

I had my RP in May and I am now pretty much over the incontinence. I still wear a #1 pad just to be safe but most days it's completely dry. I remember to tense up when sneezing which is the only time I get a dribble.

I was also upgraded to G9 in histology but surgeon didn't want to see me again until January so I guess it's a waiting game now - I am fairly sure I will eventually need SRT but I don't think it will be for quite some time so as you say, just live your lives and don't worry about it.

Best of luck

User

Posted 28 Sep 2023 at 21:46

You don't need to convince your GP you need to convince his receptionist. The receptionist is probably trained to refuse requests for PSA tests because he will assume it is 'screening' and they don't have a budget for that. So you have to book him in for a test for 'three monthly post op PSA monitoring'. Don't sound like you are asking for this, sound like you are telling the receptionist this is going to happen and it is beyond his pay grade to ask any further questions. My GP receptionist timidly said 'has this been requested by secondary care?' I said 'Of course it has'. Later I looked up what 'secondary care' means, apparently it means the hospital.

Dave

User

Posted 20 Feb 2024 at 12:53

Originally Posted by: Online Community Member

Latest news. Mild Lymohodema confirmed by surgeon and OH now referred to lymphodema clinic.
however he was v focused on OHs Dec PSA of 0.08 (doubled from 0.04 post op). Next PSA due in in mid-march and if any increase at all from 0.08 RT will be offered due to ‘the extent of the disease and the positive lymph node’. No scans, no point waiting for 0.2 as they like to err on the side of caution he said. I knew this was on the cards but thought we might have a bit of breather before RT. My instincts tell me there will be a rise given his pathology.

Was told it would be RT to the prostate bed in order to mop up any microscopic disease. Does that sound about right?

TBH I think you’re as well getting it over and done with now if it’s got to be done. Hopefully OH can avoid a lengthy time on HT and he’ll be all done and dusted within a year of his RP and get your lives back😊 I know I would have been happy to follow this route given he choice, rather than 3 years of HT😟

User

Posted 20 Sep 2023 at 16:21

OH had a last minute call for an outpatient's appointment today with the surgeon (obviously not on strike!) c 8 weeks post RP.

Good news PSA 0.04 and he's confident that his incontinence will sort itself out.

User

Posted 20 Sep 2023 at 21:45

And good luck to you too Steve. I’ll be following your journey as seems pretty much like ours (without the lymph node). OH still on 2-3 pads a day but surgeon got him to cough a couple of times and there were no dribbles so is confident all will be good.

User

Posted 24 Sep 2023 at 15:01

KD123 sorry I missed this post, I think your original post is correct, you now have a difficult wait for 3 months to see if you are going to get a "LESS THAN".

With that pathology you might want to be looking for options for a PSMA PET scan too - check out Ulsterman for a good use of PSMA.

User

Posted 28 Sep 2023 at 20:18

Check with your urology team but every 3 months for first year at least. I am just tipping into my second year and no one has told me to reduce the test regime as yet. My understanding was actually 3 months for 2 years.

User

Posted 28 Sep 2023 at 20:58

Very similar situation to my husband. He got upgraded to 4+5 from 4+3 although downgraded T score from T3a to T2. He also had one node with cancer out of the 14 that were removed.

We got 14 months before any detectable PSA, we enjoyed the time and I think Rob thought he may get away without further treatment so had quite a positive mindset throughout. I did always try to prepare him a little for what might happen and of course it did.

He’s started his HT now and has his planning scan for SRT in October. I think it’s good to still believe that they got it all and if his psa does rise then you know he will have options available.

As for PSA testing, because Rob had his op in London…I pretty much took control of it when we got back to Manchester. I booked him a blood test every 3 months until the first rise, then I changed to 6 weekly so I could monitor it more closely. We have a bloods line to ring and then go to GP surgery to pick up a blood bag.

Best of luck with the PSA test 👍

User

Posted 28 Sep 2023 at 21:00

Kd123, the NICE, guidance says the frequency should be discussed with the patient. It also talks about treatment without complications. It then says, post op tests should be at least every six months for the first two years,and once every year.

It is another case of the post code lottery, what you get. It should be tailored to your circumstances.

It is only guidance but alot of it gets used perhaps as a way of saving money.

Thanks Chris

User

Posted 28 Sep 2023 at 21:25

Uh oh, didn’t realise that’s what NICE says…thanks for pointing that out Chris. I’m hoping I’ve got my wires crossed and we are in a 3 month regime- think OH needs to contact his specialist nurse to clarify .

User

Posted 28 Sep 2023 at 22:18

Dave ,I have had an argument with one GP at our practice regarding getting a post treatment PSA test , I finished up playing the mental health card and he then agreed to sanction the test. While seeing another doctor about a different issue some months later he agreed straight away to my request for a PSA test.

My oncologist said we would cross swords, if I continued to ask for PSA tests he had not ordered, but he did want to know what the result was.

Thanks Chris

User

Posted 29 Sep 2023 at 10:14

Interesting comment above about the costs for PSA tests. I live in France and so we pay a percentage of our healthcare costs normally, although conditions like heart and cancer are covered 100%. However, the point is that we get a detailed breakdown of all costs and charges.

Blood tests are done by private clinics and getting any test is just a case of asking your GP - I could get a PSA test every 2 months if I wanted it.

The 'total' cost to the health care service of a PSA test is €23.92

The GP tells me that they are trying to get every male patient over 45 to get one at least once a year - but as she said, you can lead a horse to water.....

It doesn't sound like a level of expense that should have UK GPs restricting them!

User

Posted 29 Sep 2023 at 12:22

My understanding is 3 monthly PSA tests for for first year post RP then 6 monthly after that but not sure how long for?

User

Posted 30 Sep 2023 at 07:56

Thanks Elaine. That’s great advice and if necessary will try the meltdown approach 😂 the not knowing is so anxiety provoking isn’t it? X

User

Posted 01 Oct 2023 at 12:16

Hi Elaine- that’s a great idea about the app- I would much rather check that than ring . We are just checking at this v moment whether he’s got the app and if the results are on it.

No it wasn’t a less than 0.04 … but people seem to still consider this a good result, me i’m half glass full person so I’m not convinced! Good luck for next weeks test- you’ll let us know the result? 🍀

User

Posted 03 Jan 2024 at 20:58

Just got the second post RP PSA. Doubled to 0.08 from 0.04. Presume this isn’t great news but the next test result in March will confirm if this is a definite trend upwards?

User

Posted 03 Jan 2024 at 21:27

That probably isn't very good news. With these small numbers it isn't wise to get hung up on phrases like 3 month doubling time. At the moment it is just two small numbers one a bit more than the other. Yes in three months it will probably be above 0.1 and though that is still not defined as a recurrence it is in the slightly worrying territory.

It is generally accepted that a slow rise from a low number is probably cancer left in the prostate bed, and usually SRT is very effective. Of course an onco will have to decide this when it is appropriate to get them involved.

I think you will just have to wait and see, but others might suggest switching to one month tests.

Dave

User

Posted 04 Jan 2024 at 18:07

Thank you so much everyone for your thoughtful and supportive comments. Elaine, how did you manage to get six weekly PSA tests? Did you strong arm your GP?

Chris, we very much hope to follow your route by zapping individual spots of cancer without resorting to hormone therapy, but if we need to, I guess there won’t be much choice.

Steve how did you get on today??
Adrian as much as I’d like to think this is a blip I doubt it v much- my rational head says odds were stacked against him and the results are tested at the same lab so unlikely to be an error due to a different machine, but then you never know!
Good luck everyone as we march on x

User

Posted 20 Feb 2024 at 10:43

Was told it would be RT to the prostate bed in order to mop up any microscopic disease. Does that sound about right?

User

Posted 20 Feb 2024 at 12:21

I had the same lymphodema (at least I think that is the same as a lymphocele) post RP. I was back in for it to be drained inside the CT scanner with a local anaesthetic and it was fine. No pain or discomfort.
I'm due my next PSA on 8th March as my post op PSA was <0.01 but December was 0.12 so am expecting to join the RT club shortly. Like you, the prostate bed will be the target.

I'm just outside of Chauvigny in Vienne (Dept 86) in answer to your previous question LOL

Edited by member 20 Feb 2024 at 12:23 | Reason: Not specified

User

Posted 20 Feb 2024 at 18:51

KD, you need to check with your oncologist, I had 33 sessions of SRT,but that was 7 years ago. A quick search of posts still shows guys having 33 sessions for SRT. 20 sessions is now common for guys having RT as primary treatment. I have also had just 5 sessions to a single lymph node.

It's a combination of postcode lottery and progress.

I had my treatment over the Easter period and it took 50 days

Thanks Chris

Edited by member 20 Feb 2024 at 18:56 | Reason: Not specified

User

Posted 20 Feb 2024 at 19:41

I did a bit of a dig around and found an interesting science paper on SRT which gives the average duration of SRT as 48 days - but that's average so there will be some less and some more. Don't know if that helps.

Here's the document Frontiers in Oncology

User

Posted 20 Feb 2024 at 20:29

Lymphocele and Lymphoedema are different (I've experienced both ). It's good that you have an immediate referral to the Lymphoedema clinic. I had a bit of a wait. Where is his Lymphoedema KD123? The usual treatment is compression garments. I have wear a full length compression stocking on my right leg. This has kept the swelling under good control for the last year or so. I was in a similar predicament to your OH. The first PSA after RP was 0.28. I had 33 sessions (47 days duration) of SRT to the prostate bed in 2022 along with six months of Bicalutamide. PSA now remains undetectable 🤞.

User

Posted 15 Mar 2024 at 15:52

It's not the news you were hoping for but probably expected given the pist surgical results. If he does get six months of Bical most of us to tolerate okay. My only real issue was the breast buds but they did return to normal eventually.

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User

Posted 20 Sep 2023 at 21:01

Best of luck

User

Posted 20 Sep 2023 at 21:45

User

Posted 24 Sep 2023 at 15:01

KD123 sorry I missed this post, I think your original post is correct, you now have a difficult wait for 3 months to see if you are going to get a "LESS THAN".

With that pathology you might want to be looking for options for a PSMA PET scan too - check out Ulsterman for a good use of PSMA.

User

Posted 28 Sep 2023 at 19:05

We’ve just had a letter from the surgeon and are a bit confused about the PSA testing regime. Am I right to expect that OHs PSA should be checked every 3 months for the first 2 years? There’s some suggestion that it’s only every 6 months which with his pathology results I’m a bit concerned about. Any thoughts? Thanks Kate

User

Posted 28 Sep 2023 at 20:18

User

Posted 28 Sep 2023 at 20:44

Thank you Jim- really helpful and confirms what I was thinking/expecting. Hoping it’s a badly worded letter.

User

Posted 28 Sep 2023 at 20:58

Very similar situation to my husband. He got upgraded to 4+5 from 4+3 although downgraded T score from T3a to T2. He also had one node with cancer out of the 14 that were removed.

Best of luck with the PSA test 👍

User

Posted 28 Sep 2023 at 21:00

It is another case of the post code lottery, what you get. It should be tailored to your circumstances.

It is only guidance but alot of it gets used perhaps as a way of saving money.

Thanks Chris

User

Posted 28 Sep 2023 at 21:22

Elaine thank you so much for your reply - I think we are following in your footsteps … 14 months would be a gift so I’ll cross my fingers n hope for the best. Good to know how you approached the testing and if needs must I’ll try and convince the GP to play ball with a 3 month testing routine, but what Chris says about a post code lottery is a bit worrying. Thanks Elaine x

User

Posted 28 Sep 2023 at 21:25

User

Posted 28 Sep 2023 at 21:46

Dave

User

Posted 28 Sep 2023 at 22:18

My oncologist said we would cross swords, if I continued to ask for PSA tests he had not ordered, but he did want to know what the result was.

Thanks Chris

User

Posted 28 Sep 2023 at 22:20

Brilliant Dave! Will do ; I’m ready and primed now 👍

User

Posted 29 Sep 2023 at 10:14

Blood tests are done by private clinics and getting any test is just a case of asking your GP - I could get a PSA test every 2 months if I wanted it.

The 'total' cost to the health care service of a PSA test is €23.92

The GP tells me that they are trying to get every male patient over 45 to get one at least once a year - but as she said, you can lead a horse to water.....

It doesn't sound like a level of expense that should have UK GPs restricting them!

User

Posted 29 Sep 2023 at 12:22

My understanding is 3 monthly PSA tests for for first year post RP then 6 monthly after that but not sure how long for?

User

Posted 29 Sep 2023 at 12:35

Originally Posted by: Online Community Member

I agree with Dave and Chris. Try the assertive route, although our receptionists usually want to email the GP to double check! The route that I have often took is a complete breakdown at the counter 🤦🏻‍♀️😂 not one I would recommend but it often gets results quickly! My anxiety was always through the roof and I struggled with all the waiting….the mental health card is a genuine one in these circumstances for sure.

If all else fails email or have a chat with GP and explain how important it is for you both to have regular information. With your husband having a higher Gleason score now it’s understandable you would want to know of any changes as early as possible x

User

Posted 30 Sep 2023 at 07:56

Thanks Elaine. That’s great advice and if necessary will try the meltdown approach 😂 the not knowing is so anxiety provoking isn’t it? X

User

Posted 01 Oct 2023 at 12:00

Originally Posted by: Online Community Member

Thanks Elaine. That’s great advice and if necessary will try the meltdown approach 😂 the not knowing is so anxiety provoking isn’t it? X

It really is.

I could relax a little after the last test and then a week before the next I could feel the anxiety building again. If there was any delay on results I literally went into meltdown. Rob has the NHS app now so all results are uploaded onto that straight away….it really helped me as I wasn’t having to ring the surgery or turn up freaking out!! 🤦🏻‍♀️ I check the app constantly after test but I don’t get as worked up as don’t have to speak to anyone else.

I’ve booked a test for next week, just want to make sure the HT is working.

I assume your husbands last PSA test was less than 0.04?? I’m sure and I hope you will get plenty of good times before needing further treatment, that’s if ever 🤞🏼

User

Posted 01 Oct 2023 at 12:16

Hi Elaine- that’s a great idea about the app- I would much rather check that than ring . We are just checking at this v moment whether he’s got the app and if the results are on it.

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