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LATEST PSA SHOWS RISE

User
Posted 11 May 2016 at 12:45

We have been for a six month follow up today after RRP in Dec 14. Original diagnosis was G9, contained.Psa has been less than 0.04 (undetectable) and they were happy that they got it all out. Pathology showed a good surgical margin and no positive nodes.

Today, psa is 0.05.

The nurse said its 'most likely' to be a machine blip, but it could be that there are cells. She said that we were put on a six monthly check because the pathology was 'very confident' that it was contained.

I am devastated. It's not been an easy ride. OH is still on two pads a day, and only able to get an erection with injections. And it was ok because at least They were confident they had cured it. I may be very naive, but I really did think we'd got it- it was very definitely the impression the surgeon and the nurses gave us.

And I may be jumping the gun - I really hope so- but I can't see how a machine can get it wrong. Has anyone else had a psa raised reading that ended up being a machine blip?

User
Posted 12 May 2016 at 19:39

Hi Louise

Lyn put a post on once where their oncol told them a reading can vary between 0.02 and 0.05 at such low levels.

There are many reasons this can occur...machine noise/calibration...time of day blood taken....what had your oh done the previous day eg exercise, sex etc..

Even with the prostate removed PSA can still be produced possibly by some healthy prostate cells left behind...women produce PSA under certain situations...so other organs in our bodies can produce minute levels....

See what the next test says and hopefully it will be around what it has always been

Bri

User
Posted 11 May 2016 at 13:26

I'm no expert but I would have thought an increase from 0.04 to 0.05 was negligable and was still a good result.

User
Posted 11 May 2016 at 14:10

I think that you are probably worrying unduly.

"Undectable" PSA is widely accepted to be anything less than 0.1 nanograms per millilitre.

 

User
Posted 11 May 2016 at 14:36

Hi Louise,

The attached link may help..... Not sure how long ago it was published...

I'm pretty sure there is no cause for concern given the minute increase.... but like you, if my PSA started to rise...even slightly.. I too would be worried..... it's only natural!

Ultra sensitive PSA tests sometimes cause us all to worry unduly I feel...

There can be variation due to all sorts of reasons, but until a reliable upward  trend is established it would be much too early to say? 

Luther


http://urology.jhu.edu/newsletter/prostate_cancer52.php

User
Posted 11 May 2016 at 15:38

Louise

There are plenty of us on here in the same boat. I have no prostate but my PSA is slowly rising from 0.03-0.06-0.04-0.05-0.07. My margins were positive and I was told a 30 per cent chance of return.

All those readings are still classed as undetectable but they are a concern, more to me than my medical team. This is the drawback of sensitive testing, with a less sensitive test they would all have been " less than 0.1 undetectable". My consultant has many patients who level off at 0.1. 

I do have concerns but it to some extent is a waiting game and I still have lots of options.

Thanks Chris

User
Posted 11 May 2016 at 15:44

Hi L
That is a tiny tiny negligible rise. It COULD be indicative of cancer cells growing , but more likely to be a blip at such a very low level. If you took his blood and gave it to 10 hospitals , you could get results varying from 0.03 to 0.07 for example , depending on each machines calibration. I know it can't be easy , but they won't be worried until you've had three results on the rise , and even then some hospitals don't start RT until 0.2 has been reached. And even then there is further chance of full cure. Easy for me to say Louise but I genuinely wouldn't be worried about a 0.01 rise

If life gives you lemons , then make lemonade

User
Posted 11 May 2016 at 15:58

Originally Posted by: Online Community Member
Luther- this does help a little- it gives some perspective.

But my mind can't get past the thought that he doesn't have a prostate. So the PSA should be undetectable. And it's been detected, however small the quantity :(



Hi again Louise,

Yes I understand where you are coming from.

However, as an ex aerospace engineer I was quite heavily involved in the calibration of sensitive checking / measuring equipment etc.

I can assure you that variation does occur within the tolerance band set down for a piece of equipment even after calibration....

Basically, there is no such thing as a zero reading, as all things are measurable if the technology is there.

Your stated reading of <0.04 in the case of the equipment used means that hubby's  PSA could have been anything between 0 and 0.03999999999?

The fact that hubby's  latest test has shown a potential rise of ' 0.01' could be down to machine variation within it's tolerance band....different Lab... or even operator error? ......Repeatability also has a variant factor.... If you measure something a number of times you will never get the same reading all of the time.

I would be tending to suspect equipment variation at this stage...especially as the medics are not concerned at the moment.

Easy for me to say that I know, but I do understand your concerns...

Hopefully someone with more knowledge / experience will come along shortly to allay your fears

Luther 




User
Posted 12 May 2016 at 22:51

Louise, you probably have a PSA of around 0.02 even though you don't have a prostate, and if you had just had an orgasm it would rise to about 0.05. Breast milk has a PSA of around the same. The machines are calibrated at least once each year - that could lead to a tiny change in reading. And finally, as CJ says above, these machines apparently have a tolerance range meaning that the same blood sample tested on the same machine at the same time could vary from 0.01 - 0.04. We have actually done it - two samples taken at once and sent for two tests - as far as I can remember the results were something like 0.15 and 0.17

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

User
Posted 10 Dec 2016 at 21:55
L

Sorry to hear of the continued rise,but it is good your medical staff are being proactive. All the best for the appointment in January. At 0.13 myself my consultant still keeps telling me it is still quite low,I see my guy 10th January.

Thanks Chris

User
Posted 11 Dec 2016 at 02:04

The onco may want to wait a little longer to see if there is another rise to take it over 0.1 - have they said to have a PSA test for the January appointment? if they are concerned, RT seems a sensible offer. At our hospital they have been trialling offering ALL men RT after surgery regardless of pathology or PSA - the reports are that these men are far more likely to get full remission so don't be devastated.

RT hasn't affected John's ED at all so no, it is not automatic. I think ED as a result of RT tends to develop years down the line rather than immediately.

In terms of questions, the only one I can think of is to ask whether it would be HT as well and if not, why not?

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

User
Posted 11 Dec 2016 at 09:26

Hi L
So sorry to hear this ! As if you didn't have enough on your plate already. My info from Onco was that RT continence problems are mostly temporary and that RT induced ED starts about 2 years later.
I do remember reading somewhere though that they don't like doing RT until continence has returned post op ??? Your hubby just has some stray cells hopefully on the prostate bed , and so RT would potentially offer full cure still. I've still not agreed to RT yet as they feel there is a bigger picture going on , however it is looking more likely that I will have to have it done eventually.
Good luck to you both xx

If life gives you lemons , then make lemonade

User
Posted 11 Dec 2016 at 13:58
You say that continence is still an issue. Have you discussed whether this will affect the RT treatment as when I had salvage RT it was necessary to have a full bladder in order to reduce possible damage. We put off the salvage RT until I had more bladder control. I am not saying that it is an issue but merely asking whether this has been considered.
User
Posted 14 Jan 2017 at 11:10

I think adjuvant is the only sure way tbh , but most men are terrified of surgery on its own , without signing up to both.
I'm changing my name to Dave, so let's hope Countryboy doesn't start posting again :-))

If life gives you lemons , then make lemonade

User
Posted 18 Jan 2017 at 14:38
Sorry I haven't got back to you all- its been a horrible week.

Colwickchris- I was referring to you, as I remember your appointment was the day before ours. You are on a similar path to us now then?

Chris j- I have decided that I am no longer doing negative. We have been blessed with a surgeon who is very proactive and on the ball. Yes, they thought our margins are clear, but some obviously escaped. The surgeon has done and MRI and a bone scan and no spread has shown. He therefore thinks that the cells are in the prostate bed.

There's not much point in having ever more sensitive equipment which detects psa at 0.05 if we still call it undetectable. It's not, it's detectable, the figure is 0.05. When my father was first diagnosed we were told the most important value was the doubling time. The first detectable reading was in may, the last in December. That's doubled in 7 months, and certainly indicates failure of the surgery. The surgeon says that as his Gleason was a 5 +4 and as its rising quickly, he sees no benefit in waiting until it reaches 0.2. Surely that just means there are more cells?

Lyn- we were indeed offered RT after the surgery, but, largely because of the positive report from pathology indicating clear surgical margins, but also because of the side effects,we decided not to do this. A mistake in hindsight?

Planning scan is next Tuesday.

User
Posted 12 Aug 2017 at 20:06
Just had our first consultation and blood test post RT.

RT started in February, and PSA taken mid march showed a fall to 0.06

Latest blood test shows a drop in PSA back to less than 0.04/undetectable. We are rather pleased about this!

Oh is tireder than normal, and gets tired more quickly than he did. He has done bowel symptoms- mainly urgency, but they are improving. And bizarrely, his continence has improved!

Onwards and upwards

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User
Posted 11 May 2016 at 13:26

I'm no expert but I would have thought an increase from 0.04 to 0.05 was negligable and was still a good result.

User
Posted 11 May 2016 at 13:43
Sorry, maybe I wasn't clear. The previous was undetectable - less than 0.04 is just the machine reading. If he doesn't have a prostate, he shouldn't have a psa reading at all, so any rise is bad news. :(
User
Posted 11 May 2016 at 14:10

I think that you are probably worrying unduly.

"Undectable" PSA is widely accepted to be anything less than 0.1 nanograms per millilitre.

 

User
Posted 11 May 2016 at 14:36

Hi Louise,

The attached link may help..... Not sure how long ago it was published...

I'm pretty sure there is no cause for concern given the minute increase.... but like you, if my PSA started to rise...even slightly.. I too would be worried..... it's only natural!

Ultra sensitive PSA tests sometimes cause us all to worry unduly I feel...

There can be variation due to all sorts of reasons, but until a reliable upward  trend is established it would be much too early to say? 

Luther


http://urology.jhu.edu/newsletter/prostate_cancer52.php

User
Posted 11 May 2016 at 14:50
Luther- this does help a little- it gives some perspective.

But my mind can't get past the thought that he doesn't have a prostate. So the PSA should be undetectable. And it's been detected, however small the quantity :(

User
Posted 11 May 2016 at 15:38

Louise

There are plenty of us on here in the same boat. I have no prostate but my PSA is slowly rising from 0.03-0.06-0.04-0.05-0.07. My margins were positive and I was told a 30 per cent chance of return.

All those readings are still classed as undetectable but they are a concern, more to me than my medical team. This is the drawback of sensitive testing, with a less sensitive test they would all have been " less than 0.1 undetectable". My consultant has many patients who level off at 0.1. 

I do have concerns but it to some extent is a waiting game and I still have lots of options.

Thanks Chris

User
Posted 11 May 2016 at 15:44

Hi L
That is a tiny tiny negligible rise. It COULD be indicative of cancer cells growing , but more likely to be a blip at such a very low level. If you took his blood and gave it to 10 hospitals , you could get results varying from 0.03 to 0.07 for example , depending on each machines calibration. I know it can't be easy , but they won't be worried until you've had three results on the rise , and even then some hospitals don't start RT until 0.2 has been reached. And even then there is further chance of full cure. Easy for me to say Louise but I genuinely wouldn't be worried about a 0.01 rise

If life gives you lemons , then make lemonade

User
Posted 11 May 2016 at 15:58

Originally Posted by: Online Community Member
Luther- this does help a little- it gives some perspective.

But my mind can't get past the thought that he doesn't have a prostate. So the PSA should be undetectable. And it's been detected, however small the quantity :(



Hi again Louise,

Yes I understand where you are coming from.

However, as an ex aerospace engineer I was quite heavily involved in the calibration of sensitive checking / measuring equipment etc.

I can assure you that variation does occur within the tolerance band set down for a piece of equipment even after calibration....

Basically, there is no such thing as a zero reading, as all things are measurable if the technology is there.

Your stated reading of <0.04 in the case of the equipment used means that hubby's  PSA could have been anything between 0 and 0.03999999999?

The fact that hubby's  latest test has shown a potential rise of ' 0.01' could be down to machine variation within it's tolerance band....different Lab... or even operator error? ......Repeatability also has a variant factor.... If you measure something a number of times you will never get the same reading all of the time.

I would be tending to suspect equipment variation at this stage...especially as the medics are not concerned at the moment.

Easy for me to say that I know, but I do understand your concerns...

Hopefully someone with more knowledge / experience will come along shortly to allay your fears

Luther 




User
Posted 12 May 2016 at 09:05
Thanks guys- all very helpful. I do feel a bit better this morning. It was actually much more of a shock to me yesterday than the original diagnosis. Having had a father with Pca, I knew what was coming (so to speak...) and is expected the diagnosis. But because the surgeon and subsequent nurses had all been so confident, we were lulled into a false sense of security. The consultant said that he wished all his Pca patients had such a clear cut pathology result.

Even if this is a blip, I shall never be so confident again.

User
Posted 12 May 2016 at 19:39

Hi Louise

Lyn put a post on once where their oncol told them a reading can vary between 0.02 and 0.05 at such low levels.

There are many reasons this can occur...machine noise/calibration...time of day blood taken....what had your oh done the previous day eg exercise, sex etc..

Even with the prostate removed PSA can still be produced possibly by some healthy prostate cells left behind...women produce PSA under certain situations...so other organs in our bodies can produce minute levels....

See what the next test says and hopefully it will be around what it has always been

Bri

User
Posted 12 May 2016 at 22:51

Louise, you probably have a PSA of around 0.02 even though you don't have a prostate, and if you had just had an orgasm it would rise to about 0.05. Breast milk has a PSA of around the same. The machines are calibrated at least once each year - that could lead to a tiny change in reading. And finally, as CJ says above, these machines apparently have a tolerance range meaning that the same blood sample tested on the same machine at the same time could vary from 0.01 - 0.04. We have actually done it - two samples taken at once and sent for two tests - as far as I can remember the results were something like 0.15 and 0.17

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

User
Posted 17 May 2016 at 23:07
That does make me feel better!

A few days on and I've settled down a bit and my sense of proportion has returned.

It's likely to be the machine. But we have to wait til August 17th to find out. I think what shocked me most looking back is how completely unprepared we were for it to be anything other than a routine 'it's fine off you go'. I shall never make that assumption again

User
Posted 17 Aug 2016 at 19:06
Sadly, it's not the machine :(

Latest reading is 0.06, and the consultant has swung into action. OH has to have MRI and bone scan, and assuming they are negative (not assuming anything anymore), salvage radiotherapy.

So there's questions coming...

Has anyone else been in this situation after 18 clear months post surgery?

Anyone had radiotherapy who can tell me about the side effects? OH asked me if he'd lose his hair. I said I didn't think he'd lose his head hair, but wasn't sure about the rest...?!

Can he still be 'cured', or will he always have prostate cells now? Will the radiotherapy lkill all the cells in the prostate bed area, or is it likely some will be left behind??

The consultant did say that because of the highly aggressive nature of the tumour, it was always a possibility, even though they were fairly confident they had it all.

I feel very sick tonight.

User
Posted 17 Aug 2016 at 19:29

Loads of us have had similar situations - in John's case 2 years after surgery and in my dad's case, 13 years after the op. You aren't considered to be in remission (aka 'cured'' or 'clear') until you have had undetectable PSA for 10 years. I think it is really sad that some surgeons (perhaps those with big egos?) imply that a man is cured straight after the op, and that some people aren't warned that there is no guarantee. If there was always a possibility, you should have been told that beforehand as it probably meant there was less point having the op and going through all the side effects - he could have just opted for RT in the first place :-(

No he won't lose his hair although if he is particularly hairy around the belly and above his hips then that might thin out a bit. Are they putting him on salvage HT as well as the RT? HT can cause some body hair loss as well.

He can still be cured if the cancer cells are simply lolling in the prostate bed - that's why they are only offering the RT if the new scans are clear.

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

User
Posted 17 Aug 2016 at 19:53
Thanks Lyn

To be fair to the surgeon, it might just be our interpretation. It certainly wasn't something we expected after being told that the surgical margins were clear, but maybe we were just naive.

He did however say today that in now way should we regret having surgery. OH tumour was easily the most aggressive he had operated on that year, and that there was evidence that the more aggressive the tumour the less effective RT was in the long term.

He has indicated that he believes the PSA is probably coming from cells in the prostate bed. He says he will be 'absolutely astonished' if there is anything of note on the Mri or bone scan.

He hasn't mentioned HT- would it be usual to be offered this with such a low psa?

User
Posted 17 Aug 2016 at 21:06
L

I was at .03 for the first 15 months and still below .07 at 23 months.Last test .13. I had positive margins and was told there was. 30 percent chance of recurrence. It is good that your consultant has swung into action, I have to wait until September for the next step, although I will be asking some questions on Monday.

There seems to be a lot of recurrences just lately or is that because the guys without problems do not visit sites like this.

Hope all goes well with the scans and I know from your previous worries the scans will give you answers to questions.

Take care.

Thanks Chris

User
Posted 17 Aug 2016 at 21:40
Thanks Chris.

I've consulted dr Google, and he seems to be saying that the earlier you can have salvage RT the better your chances, which is what the surgeon said. Although we've only had two increases, and they are tiny, he says there is no point waiting. We concur!

I do wonder if the OH had taken the offered RT after surgery, we could have avoided this. We'll never know. I'm just a little frightened that, having taken 20 months to get to an almost acceptable level of continence (one pad a day) it is all going to go pear shaped again.

I think you're right. I haven't been on here since the bad news in May...

L

User
Posted 18 Aug 2016 at 12:08

So sorry to hear this news L. It's been a tough journey for you both. No use looking back. I expect you'll go for immediate RT but Raiden is in the same boat as you and refusing it at the mo as he has full function return both continence and erections. A lot of hospitals only start at 0.2 and I think he's happy to wait until he gets there. Quality of life I suppose. Quantity isn't as important to everyone I suppose. I'm glad I refused it but different circumstances entirely. Good luck x

If life gives you lemons , then make lemonade

User
Posted 18 Aug 2016 at 20:13

John refused to accept that he needed salvage treatment so we waited until there had been a succession of rises - 2 years post-op and I think the PSA had risen to 0.16 or something like that but he had had time to recover physically and emotionally from the initial diagnosis and operation.

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

User
Posted 10 Dec 2016 at 20:59
Sadly, it looks like OH surgery has failed. Latest PSA is 0.08, which isn't high, but it's the third rise in a row- from less than 0.04 last Xmas. We've been referred to oncologist for salvage RT.

I'm gutted. Continence is still an issue, and I'm terrified it's going to make it worse. We'd just managed to get on top of the ED (pun intended) with the help of cialis, although he had lost length and girth along the way. How will the RT affect this? Does it always affect this?

We go to see oncologist on Jan 11th. What questions do I need to ask please?

User
Posted 10 Dec 2016 at 21:55
L

Sorry to hear of the continued rise,but it is good your medical staff are being proactive. All the best for the appointment in January. At 0.13 myself my consultant still keeps telling me it is still quite low,I see my guy 10th January.

Thanks Chris

User
Posted 11 Dec 2016 at 02:04

The onco may want to wait a little longer to see if there is another rise to take it over 0.1 - have they said to have a PSA test for the January appointment? if they are concerned, RT seems a sensible offer. At our hospital they have been trialling offering ALL men RT after surgery regardless of pathology or PSA - the reports are that these men are far more likely to get full remission so don't be devastated.

RT hasn't affected John's ED at all so no, it is not automatic. I think ED as a result of RT tends to develop years down the line rather than immediately.

In terms of questions, the only one I can think of is to ask whether it would be HT as well and if not, why not?

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

User
Posted 11 Dec 2016 at 09:26

Hi L
So sorry to hear this ! As if you didn't have enough on your plate already. My info from Onco was that RT continence problems are mostly temporary and that RT induced ED starts about 2 years later.
I do remember reading somewhere though that they don't like doing RT until continence has returned post op ??? Your hubby just has some stray cells hopefully on the prostate bed , and so RT would potentially offer full cure still. I've still not agreed to RT yet as they feel there is a bigger picture going on , however it is looking more likely that I will have to have it done eventually.
Good luck to you both xx

If life gives you lemons , then make lemonade

User
Posted 11 Dec 2016 at 13:58
You say that continence is still an issue. Have you discussed whether this will affect the RT treatment as when I had salvage RT it was necessary to have a full bladder in order to reduce possible damage. We put off the salvage RT until I had more bladder control. I am not saying that it is an issue but merely asking whether this has been considered.
User
Posted 11 Dec 2016 at 20:10
Chris- a busy couple of days for this website then! Good luck with yours.

Lyn- no, they've not asked for a psa, but it will be less than a month since the last one so maybe this is why.

We were offered RT after the surgery because of the high Gleason score 5 +4, but decided not to take it. They were confident the surgical margins were clear. A mistake in hindsight?

Is there anything we can do to reduce the likelihood of ED as a result of RT?

What advantage would there be to HT? I thought that this was only for those with a prostate. I am so ignorant, even now!

Chris- they might be waiting a long time if they have to wait for full continence!! The surgeon is very proactive, and feels there is a pattern of rising psa, and it needs to be treated. He feels the sooner this is done the better, and we tend to agree.

Kevan- no, the issue hasn't been raised because I didn't know it was an issue. But it will be top of the questions list, thank you! I'm sure he's continent enough to manage a full bladder. His incontinence tends to be stress incontinence and is worse when he's tired. He has a very physical job. When he does nothing, he barely leaks.

Thanks for your input everyone.

User
Posted 13 Jan 2017 at 22:59
Saw oncologist this week, and they've decided to do salvage RT now. Pas has risen from undetectable less than 0.04 last January to 0.08 in December. They think because of the aggressiveness of the original tumour (5+4), they'd rather not wait.

We concur.

User
Posted 13 Jan 2017 at 23:00
Chris

I've tried to send you a PM to see how you went on, but my phone is not playing ball.

Hope all went well for you x

User
Posted 14 Jan 2017 at 00:26

Hi L
I posted a huge post but it wasn't sent grrr. I can't find your histology. It says no positive margins anywhere. So WHAT exactly are they going to target RT at. You've already had bad incontinence and poor ED recovery so far. I know I'm glass half empty but without scans or evidence of recurrence in that area you may be exacerbating recovery. You have taken 11 months to double from undetectable to still undetectable. You could wait a whole further year and still qualify for salvage RT if it only rises to 0.16.
Anyway whatever you do , I think of you both
Chris j

Edited by member 14 Jan 2017 at 00:27  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 14 Jan 2017 at 00:47

I think you are overplaying the significance of the negative margins Chris. There does not have to be a positive margin for microscopic cells to have been left behind in the prostate bed.

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

User
Posted 14 Jan 2017 at 09:56
L

There are too many people named Chris on here, if you meant me, PSA now at 0.2 and just waiting for appointment and dates to start salvage RT. My team were always confident PSA would settle and as my consultant said there was my issue with the stricture and there is always the issue of over treatment if you apply adjunctive treatment to all men.

Thanks Chris

User
Posted 14 Jan 2017 at 10:28
Originally Posted by: Online Community Member

I think you are overplaying the significance of the negative margins Chris. There does not have to be a positive margin for microscopic cells to have been left behind in the prostate bed.

Yes microscopic cells left behind. Logic would dictate these cells would be in your prostate bed , but in fact you're getting munched up down there and eventually your prostate is dragged past your bladder and out of your tummy button etc. I guess that's why 40% or more of men who have salvage RT go on to have further recurrence within 3 years. I guess they offer it because essentially in this present day it is your only option for cure after a biochemical failure post RP. As well as immunotherapy progress with various cancers , my Onco insists the real future of curative prostate cancer treatment is by huge advancements in imaging , whereby exact location of disease can be found and treated rather than blanket RT or systemic HT and chemo. I guess I'm " lucky " enough ( tongue in cheek ) to have such a poor , rapid doubling psa post op that I get to try these scans and maybe , just maybe , find a single lymph node somewhere that can be treated and provide a cure , whereby if I'd gone for prostate bed RT it may have completely missed it etc

I'm not sure these scans are developed enough yet to find small psa producing tumours , but they are advancing all the time. I guess to be fair you have no other choice Louise than to go for the SRT , but you are the original squeaky wheel !! Raiden has had three rises and is now 0.11 , but he is waiting and not putting himself through RT until it rises further. We all different yeh ! Best wishes x

If life gives you lemons , then make lemonade

User
Posted 14 Jan 2017 at 10:51
Originally Posted by: Online Community Member
L

There are too many people named Chris on here, if you meant me, PSA now at 0.2 and just waiting for appointment and dates to start salvage RT. My team were always confident PSA would settle and as my consultant said there was my issue with the stricture and there is always the issue of over treatment if you apply adjunctive treatment to all men.

Thanks Chris

Sorry CC - I was responding to Chris J's comment not your situation

As it happens though, I am not sure everyone would agree with your final comment about adjuvant treatment for all men. As I have posted previously, our hospital is part of a trial whereby ALL men having RP are being offered adjuvant RT regardless of staging, Gleason or pathology - the research is indicating that men having both have better outcomes at 5 and 10 years post-op.

Edited by member 14 Jan 2017 at 10:56  | Reason: Not specified

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

User
Posted 14 Jan 2017 at 10:56
Lyn

This gets confusing, I was replying to the post from Louise.

Thanks Chris

User
Posted 14 Jan 2017 at 10:57

Hee hee hee hee hee hee hee

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

User
Posted 14 Jan 2017 at 11:10

I think adjuvant is the only sure way tbh , but most men are terrified of surgery on its own , without signing up to both.
I'm changing my name to Dave, so let's hope Countryboy doesn't start posting again :-))

If life gives you lemons , then make lemonade

User
Posted 18 Jan 2017 at 14:38
Sorry I haven't got back to you all- its been a horrible week.

Colwickchris- I was referring to you, as I remember your appointment was the day before ours. You are on a similar path to us now then?

Chris j- I have decided that I am no longer doing negative. We have been blessed with a surgeon who is very proactive and on the ball. Yes, they thought our margins are clear, but some obviously escaped. The surgeon has done and MRI and a bone scan and no spread has shown. He therefore thinks that the cells are in the prostate bed.

There's not much point in having ever more sensitive equipment which detects psa at 0.05 if we still call it undetectable. It's not, it's detectable, the figure is 0.05. When my father was first diagnosed we were told the most important value was the doubling time. The first detectable reading was in may, the last in December. That's doubled in 7 months, and certainly indicates failure of the surgery. The surgeon says that as his Gleason was a 5 +4 and as its rising quickly, he sees no benefit in waiting until it reaches 0.2. Surely that just means there are more cells?

Lyn- we were indeed offered RT after the surgery, but, largely because of the positive report from pathology indicating clear surgical margins, but also because of the side effects,we decided not to do this. A mistake in hindsight?

Planning scan is next Tuesday.

User
Posted 18 Jan 2017 at 16:58
Originally Posted by: Online Community Member

I think you are overplaying the significance of the negative margins Chris. There does not have to be a positive margin for microscopic cells to have been left behind in the prostate bed.

And either we weren't told this or we didn't pick it up. As far as we were concerned, pathology gave clear surgical margins so everything was all clear and no RT was required.

I wonder if it would have changed our opinion if I'd understood this?

User
Posted 18 Jan 2017 at 18:28

At our original surgery consultation , my Uro made it quite clear that even with a fully successful removal and clear margins , that there could be micro-metastases already travelled in my body , and that cure is never guaranteed. They can only do what they can do based on past experiences and results. Remember wherever you are in the country , different teams treat an identical cancer in different ways. For example as Lyn says , her hospital is offering immediate RT post surgery as the best hope of full cure. Others offer surgery alone as full cure , and then salvage RT at psa 0.2 or after 3 rises etc.
I personally think only a very fortunate few are fully cured , whereas most get a varying amount of remission. That's why they base treatments on a 10 year or 15 year survival rate. I was told a rough estimate of 4 to 6 yrs in my scenario , but all that could change. I think you are taking sound advice based on both your wishes , but it is at the moment the only " cure " pathway you have , but that by no means is guaranteed. An MRI wouldn't detect micro spread nor a bone scan.
You've made the right choice though.
Alll the best
Chris

If life gives you lemons , then make lemonade

User
Posted 12 Aug 2017 at 20:06
Just had our first consultation and blood test post RT.

RT started in February, and PSA taken mid march showed a fall to 0.06

Latest blood test shows a drop in PSA back to less than 0.04/undetectable. We are rather pleased about this!

Oh is tireder than normal, and gets tired more quickly than he did. He has done bowel symptoms- mainly urgency, but they are improving. And bizarrely, his continence has improved!

Onwards and upwards

 
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