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Been to see the specialist today

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User
Posted 05 Oct 2018 at 15:17

So after hubby getting a uti and a psa reading of 9.5, followed by another psa reading of 7.3 2 weeks later, he was seen by a specialist nurse today. He said his prostate didn’t feel malignant but did feel a bit firm on one side. He said we have 2 choices, the first being watch and wait with another psa, and the second was to have a mri and a biopsy. He said he’d probably opt for the second choice. So we agreed. However hubby had been reading about the template biopsy, so asked if this was what he was having, the nurse said no it wasn’t, so hubby said he’d like to have the template biopsy as it’s more thorough, anyway the nurse agreed in the end so that’s what he’s having. I asked if the reduction in psa was a good sign and he said it was, made me feel better, also said he’d been doing this job for the last 20 years, so I’m sure he knows what a malignant prostate feels like I’m praying he does. I don’t think he wanted hubby to have the template biopsy first, must cost more money. Are we doing the right thing?


thanks for listening 

User
Posted 05 Oct 2018 at 16:01
Hello Mr and Mrs Lewis,

Welcome to the most unwelcome welcoming website in the world!

Mr Lewis should insist on a mpMRI scan FIRST, preferably at 3 Tesla resolution, (but 1.5 T would do at a pinch), and if anything untoward shows on the scan, proceed to a template biopsy.

The cheaper TRUS (up the bum) biopsy is favoured by some hospitals as it is quicker, but much less accurate if there is very little cancer. My big 15mm former buddy, Tommy the Tumour, would have been picked up by whatever biopsy. Some specialists set little store by DRE’s and mpMRI is the way to go.

So, hopefully Mr L’s raised PSA is just a consequence of his urinary tract infection.

Please let us know how you get on.

Cheers, John.
User
Posted 06 Oct 2018 at 20:25

I had a fluctuating psa for around 18 months. They kept an eye on it and after a change in what they could see in an mri compared to a one I had 12 months previously I had a template biopsy which was able to target the problem area specifically. All biopsies have downsides but I was very happy with the template one. I had no bruising  or problems after the general anaestheti. You are not under for long. 

User
Posted 10 Oct 2018 at 21:20
You will probably have to wait - radiographers are qualified to undertake the imaging; they are not qualified to interpret the results so the images are sent to a radiologist who writes the report. Then in most areas, the biopsy report and radiology report are considered at a multi-disciplinary meeting (usually a weekly event).
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Oct 2018 at 08:55
I had no symptoms at all, nothing evident from DRE. MRI is essential IMHO and dependant on the MRI result a TRUS biopsy will be adequate if there is an obvious target from the MRI.

If the MRI is clear then you should definitely go for a template OR possibly active surviellance if it was a 3T MRI.

I paid 1500 quid for a 3T MRI privately.
User
Posted 11 Oct 2018 at 16:56
Mr & Mrs L, be prepared for a wait for the radiologist''s report. They are in short supply and overworked. It my area it can be three weeks before a report is available to the oncologist. Sometimes the oncologist, who has access to the pictures on his PC, will try to give his own interpretation, but from experience this will usually, if he/she is wise, be couched in pretty general terms. Interpreting the scans is a very skilled job and I've found the full reports worth the wait.

AC
User
Posted 13 Oct 2018 at 11:02
Hi Michaela,

If he is having a template biopsy I think the resolution of the MRI scan is not now too important, as that will give you you both a very accurate picture of what’s happening. Fair play to you for sticking out for a template, and hasn’t it been arranged quickly?

If there is a large tumour like mine was it would be picked up on a TRUS biopsy, but if a TRUS is done before an MRI, they don’t know what they are aiming at. It then takes weeks for the prostate to recover before an MRI can be carried out.

If the TRUS came up with indeterminate results, and if the MRI scan shows something slightly suspicious, then you end up railroaded on a waiting list for a template second biopsy. Two for the price of one and twice the discomfort. Note I didn’t say pain.

So I think you and your clinicians have gone exactly down the right road.

So I wish you the best of luck as ever, and try not to worry too much.

Cheers, John.
User
Posted 13 Oct 2018 at 11:54

I had a template biopsy as part of my diagnosis, I had no Ill effects and felt fine the afternoon after the procedure. Although it’s done under a general you shouldn’t be under long so a minimal hangover. 


Once you‘re In the system at the NHS it’s all pretty swift and the resources seem to be good. If at any stage you feel you’re not getting enough info or appointments are slow coming through it’s definitely worth chasing up.


For general info the nurses on the Prostate UK free helpline are fantastic. I found them a great support with unbiased and up to date information.


Wishing you all the best for your next steps.  


 

User
Posted 13 Oct 2018 at 18:30

Originally Posted by: Online Community Member


Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (Fourth Edition)


(I cut and pasted in the name of the book, I’m not sure why it’s come out so big. I’m not on commission!)



Brilliant book. We had the earlier copy first so this one slightly updated. Dr Walsh I do believe is the gentleman who first discovered then developed the first nerve sparing prostatectomy so he is indeed regarded as THE GOD of  prostate surgery in America. Retired from surgery himself now but still very active in the prostate world.

User
Posted 19 Oct 2018 at 10:44

I‘m very sorry to hear they’ve found something on the scan. I suggest you give the Prostate UK free helpline a call, the Nurses are very knowledgeable and should be able to answer most of your questions. 


Once you get the biopsy result the next steps will be advised. If it is cancer and you go with surgery or radiation/hormone treatment the odds are very much in favour of getting rid of it. 


It‘s much easier said than done but try not to worry too much and take it one step at a time. 

User
Posted 19 Oct 2018 at 15:38

Originally Posted by: Online Community Member


Is it right that the staging TNM is different depending on which cancer it is?


from what I understand T3a means it’s could just be spreading out if the prostate, meaning it’s still relatively early?


 


The ability to confirm cancer based on MRI depends on the type of MRI - the more detailed ones will give a score out of 5 for how likely it is - a 1 means it is almost certainly not cancer and a 5 means it almost certainly is cancer. But without a biopsy they cannot confirm the diagnosis. The biopsy will also tell them which of the 27 different kinds of prostate cancer it is, which is important because some rare types need a specific treatment. Adenocarcinoma is the most common by far. 


 


The TNM has nothing to do with different types of cancer, it is a way of describing the full diagnosis.


T is the staging - T1 means the tumour is small and in only one part of the prostate, it can't be felt in DRE and often can't be seen on scans. T2 means the cancer can be seen and may be felt. T3 indicates that it is at or close to the edge of the gland or has broken out but only in a limited way - to the closest lymph nodes perhaps. T4 means it has broken out and invaded local tissue such as the bladder. 


N is about the further afield lymph nodes - if it has gone to the lymphatic system it is considered incurable but can be controlled


M is for metastases / spread - usually to the bones but might be lung, liver, etc. 


 


It is possible to be T1 or T2 but still have mets to bone or organ although this is more rare. T3 is not considered to be relatively early. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Oct 2018 at 16:29
Interestingly T3a is "locally advanced" so is not as early as you would like it to be, however it is rare in the UK to catch Pc really early because there is no effective screening and PC rarely produces side effects until it's been there a while (years!).

Now you have your staging the G score is important and it could still be a benign leision hence the need for biopsy.

At this stage you will have just about all forms of treatment available so now would be a good time to research these so you can ask informed questions when you get the definitive result from the biopsy.
User
Posted 19 Oct 2018 at 16:34

Originally Posted by: Online Community Member


N is about the further afield lymph nodes - if it has gone to the lymphatic system it is considered incurable but can be controlled....



My post operative histology came back as T3aN1M0 after two out of fourteen lymph nodes removed proved cancerous on biopsy.


My hopelessly optimistic oncologist told me I am cured despite those results, so I am off to see a Harley Street oncologist soon to see how cured he thinks I am....


Anyway, I am enjoying being cured....for now...


Cheers, John.

User
Posted 21 Oct 2018 at 09:27

The treatment offered may depend on your local team to a certain extent. I’ve just had my prostate removed even through they knew it was starting to spread (Gleason 9). It turned out to be T3b but they think they got it all. My lymph nodes were found to be clear. 


By way of contrast I have a friend who was Gleason 10 who was down to have the procedure in Belgium. Once they had him on the table and actually saw it had spread, confirming it had spread to lymph nodes by biopsy while he was still under. They then closed him up and he went straight into HT and RT. He is now clear and although told he would be on HT for 2-3 years they took him off at around 18 months. 


The stats are pretty positive whichever route you decide to take.  

User
Posted 21 Oct 2018 at 10:48

If the scan was not an mpMRI hi-res, hi-def, scan at 3 Tesla resolution, how can they tell the full extent of the cancer (if any)? The only way to tell is to look inside, which in a way the biopsy does, but that is no indicator of spread.


My tumour was 15mm and turned out to have spread, despite the scan indicating it had not.


Anyway, the biopsy result will be another piece in the jigsaw, so try not to worry too much about it till then.


Cheers, John

Edited by member 21 Oct 2018 at 12:10  | Reason: typo

User
Posted 21 Oct 2018 at 12:29
Even with a 3T they can't tell for sure, a 1.5 t will still show tumours. All require skilled human interpretation unless the cancer is so advanced it has destroyed all the normal structures.

If the cancer has broken out surgery is still an option it all depends how far it has gone. At some point it becomes more effective to use radiotherapy as the curative option.
User
Posted 21 Oct 2018 at 14:16
Some surgeons will operate even if it has just broken out; others would refuse. Some would refuse if it looked close to breaking out. Part of the problem is that they have to report their stats and so it is a bit risky for them to take on patients that could make their results look bad. Unfortunately, a couple of the supposedly top surgeons with amazing results are known for cherry picking only the safest patients. Others may look like they make more errors but are actually the brave ones who put patients before league tables.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Oct 2018 at 23:28
If you know the name of the planned surgeon you can google their published outcomes data. All uro-surgeons have to publish this (although some ignore it). If you can't find it that way, ask the surgeon when you see him/her. The standard data they are supposed to collect is:
- % positive margins
- % biochemical recurrence
- % using one pad per day or less at the 12 month mark
- % able to get an erection either naturally or using mechanical / chemical assistance at the 12 month mark

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Nov 2018 at 11:37

Thank you for your reply, it sounds horrible and as much as I’m dreading it, I just want it over with. I’m praying it’s not a ”tiger”, I’m just struggling to get my head around it all. Pete has been putting it to the back of his mind and is trying to carry on as normal.


Thank you for thinking of us.

Show Most Thanked Posts
User
Posted 05 Oct 2018 at 15:48
It isn't just the cost - it also means a delay and in many areas is done by general anaesthetic which has its own risks.

The value of a template biopsy is rather dependent on what the MRI showed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Oct 2018 at 15:58

Hi Lyn 


what do you mean a delay? Does it take longer for the template biopsy?

User
Posted 05 Oct 2018 at 16:01
Hello Mr and Mrs Lewis,

Welcome to the most unwelcome welcoming website in the world!

Mr Lewis should insist on a mpMRI scan FIRST, preferably at 3 Tesla resolution, (but 1.5 T would do at a pinch), and if anything untoward shows on the scan, proceed to a template biopsy.

The cheaper TRUS (up the bum) biopsy is favoured by some hospitals as it is quicker, but much less accurate if there is very little cancer. My big 15mm former buddy, Tommy the Tumour, would have been picked up by whatever biopsy. Some specialists set little store by DRE’s and mpMRI is the way to go.

So, hopefully Mr L’s raised PSA is just a consequence of his urinary tract infection.

Please let us know how you get on.

Cheers, John.
User
Posted 05 Oct 2018 at 16:17

Thank you for your reply John. how do we know which type of mri machine they use? is this something we should have insisted upon today?


I’m sorry to hear tommy is so big, I hope he has been brought down a peg or two?


 


its also good to hear that some specialists dont depend too much on the DRE, it has been niggling at me. 


Were really hoping it’s the uti that has caused all this worry, and things will be ok.


 


thsnjs again 


Michaela

User
Posted 05 Oct 2018 at 16:38

Hi Michaela L,


He could ask the radiologist as he enters the tube, but I seem to recall a “General Electric 3T” logo on the scanner I went through. Any resolution will be fine if anything substantial is there to be found.


Tommy the Tumour is long gone four months ago, but watching the news today, I wonder if he’s in a big pile of medical waste somewhere waiting for disposal. I thought they might have given the b****** a decent burial, as we were so close!


We here are very focussed and possibly obsessive about PCa (our quaint name for the Big C!), but my surgeon, one of the best in Britain, says the DRE is not at all reliable, but a lump or hardness is not as good as smooth.


And my new oncologist, again a top man, says following a surgical trial, “the TRUS biopsy is as bad as we thought it was”.


So Mr L. is making all the moves in the right direction, and we all hope it comes to naught.


You didn’t say how old Mr Lewis is and whether he had any symptoms.


Cheers, John

Edited by member 05 Oct 2018 at 16:49  | Reason: Not specified

User
Posted 05 Oct 2018 at 17:19

Not all hospitals have the 3 Tesla machines and some will not allocate one to you. Of course, if you go private you are in a better position to select a hospital where, you have more say on when you would like the scan to be done, and can specify a 3 Tesla machine only. (For John, as regard the make, possibly the most advanced and widely used brand in the UK is Siemens with Philips, the next used but a new model by one may outshine the other. GE is more common in the USA but they all produce models in common classes of power so the brand is not so important. The 3 Tesla model has only been used for under about 10 years, whereas some of the 1.5 Tesla models can be quite old although hospitals are still buying them. to serve a purpose. You will see from this link that we in the UK are well down the league when it comes to scanners per million of population :- https://www.rcr.ac.uk/sites/default/files/cib_mri_equipment_report.pdf


However, it is interesting that a 7 Tesla scanner has been delivered in Scotland but probably more for research at this stage.  There are even more powerful MRI scanners in the USA but with the increase in power other problems increase. :- https://www.bbc.co.uk/news/uk-scotland-glasgow-west-38123803


 


Speaking on behalf of fellow urologists, a leading surgeon has stated that it is best to do the MRI first and then the biopsy. Apart from other considerations it takes time for a Prostate to heal before a good MRI scan can be done.

Edited by member 05 Oct 2018 at 18:22  | Reason: Not specified

Barry
User
Posted 06 Oct 2018 at 03:00
Shocking to read that paper, Barry, and to find that Finland and Korea have over five times more MRI scanners per head of population than Britain. And we keep being told “The NHS is the best in the world”.

Having said that, the hospital side of the NHS have been brilliant for me.
User
Posted 06 Oct 2018 at 08:44

Is it very expensive to have a mpmri done privately? Not that we’ve got the money but if the NHS isnt good enough? 


Its sad as a patient that we’ve got to worry about if we’re being given the best treatmen, there’s already enough to think about with a pca diagnosis.

User
Posted 06 Oct 2018 at 09:54
Dear Mrs L,

The mpMRI Mr L will be having will be fine, and there is no need for you to worry about the minutiae of Tesla resolutions, as he has wisely opted for a comprehensive template biopsy, which will give you and your doctors a very good idea of what’s going on.

I had 42 cores sampled in my template, of where they knew the tumour to be from the MRI imaging (left lobe) whereas with a TRUS biopsy before MRI they might take between 6 and 12 core samples from where they THINK a tumour might be.

Your husband is doing all the right things, so don’t worry too much. Strangely enough, I have never been worried about my diagnosis and subsequent treatment, especially as my Nomogram forecasts I have a 96% chance of not dying of PCa in 15 years. If I had something like lung or pancreatic cancers it would probably be around 1%.

To answer your question, I think MRIs are around a grand (for forty minutes in an electro-magnet). The hospital side of the NHS have been fantastic for me, and I would have paid around £25,000 for exactly the same thing private, as a friend has just done. But I think he had a better wine list than the Royal Surrey Hospital offers!

Roll on his scan and biopsy, and I wish you both the best of luck. Please let us know the outcome.

Cheers, John.
User
Posted 06 Oct 2018 at 11:05

Hiya John,


thank you so much for your reassuring reply, all these new words are like a foreign language I don’t really want to learn!!


 


its good to hear you don’t worry about your diagnosis, and if it comes to it, I hope we can adopt that attitude as well.


Wow! It’s pretty pricey for a private Mri then!! I’d expect wine for life if paying that! Guess we’ll be staying with the NHS, which we certainly can’t complain about at the moment!


Not sure if it was you who asked earlier? But Mr L is 63, had no real symptoms as such, maybe a few extra trips to the loo and a bit of hesitanc, this is usually relieved after passing wind 💨😱


 


I will definitely get back to you to let you know what’s happening, hopefully with good news.


 


you take care, and enjoy your weekend 


 


Michaela 😊

User
Posted 06 Oct 2018 at 11:22
Hi again Michaela, the twenty five grand that my friend from South Africa paid was about £1000 for MRI, around £1500 for template biopsy, so much for bone scan and around £20,000 for robotic laparoscopic surgery. He flew here to have one of the best surgeons carry out the op.

Unfortunately his cancer has spread outside the prostate and now he has hormone and radiotherapy to look forward to. Don’t know if he will have the adjuvant (another new word!) treatment here or in South Africa.

Chin up!

Cheers, John.
User
Posted 06 Oct 2018 at 20:25

I had a fluctuating psa for around 18 months. They kept an eye on it and after a change in what they could see in an mri compared to a one I had 12 months previously I had a template biopsy which was able to target the problem area specifically. All biopsies have downsides but I was very happy with the template one. I had no bruising  or problems after the general anaestheti. You are not under for long. 

User
Posted 10 Oct 2018 at 21:14

Quick update, Mr L has got his appointment for his MRI, it’s this Friday.  Just wonderI got if there’s anything we should be asking at this appointment? Will the radiologist discuss what he sees or will we have to wait?


Thank you

User
Posted 10 Oct 2018 at 21:20
You will probably have to wait - radiographers are qualified to undertake the imaging; they are not qualified to interpret the results so the images are sent to a radiologist who writes the report. Then in most areas, the biopsy report and radiology report are considered at a multi-disciplinary meeting (usually a weekly event).
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Oct 2018 at 08:55
I had no symptoms at all, nothing evident from DRE. MRI is essential IMHO and dependant on the MRI result a TRUS biopsy will be adequate if there is an obvious target from the MRI.

If the MRI is clear then you should definitely go for a template OR possibly active surviellance if it was a 3T MRI.

I paid 1500 quid for a 3T MRI privately.
User
Posted 11 Oct 2018 at 16:56
Mr & Mrs L, be prepared for a wait for the radiologist''s report. They are in short supply and overworked. It my area it can be three weeks before a report is available to the oncologist. Sometimes the oncologist, who has access to the pictures on his PC, will try to give his own interpretation, but from experience this will usually, if he/she is wise, be couched in pretty general terms. Interpreting the scans is a very skilled job and I've found the full reports worth the wait.

AC
User
Posted 13 Oct 2018 at 09:19

Hi all,


you were right, nothing was discussed with Mr L yesterday, so will have to wait until they have the results of the biopsy. The biopsy is next Thursday, so not too long to wait. I am impressed at the speed of everything in the NHS. MR L did ask if he was having a mpMRI, but was told it wasn’t necessary? So just waiting in limbo land for his template biopsy next week. I am surprised they haven’t repeated his Psa test due to the fall after having the uti. Sometimes I’m sure everyth is going to be ok, then other times I’m sure our lives are about to change. How dI you cope living in limbo land?

User
Posted 13 Oct 2018 at 11:02
Hi Michaela,

If he is having a template biopsy I think the resolution of the MRI scan is not now too important, as that will give you you both a very accurate picture of what’s happening. Fair play to you for sticking out for a template, and hasn’t it been arranged quickly?

If there is a large tumour like mine was it would be picked up on a TRUS biopsy, but if a TRUS is done before an MRI, they don’t know what they are aiming at. It then takes weeks for the prostate to recover before an MRI can be carried out.

If the TRUS came up with indeterminate results, and if the MRI scan shows something slightly suspicious, then you end up railroaded on a waiting list for a template second biopsy. Two for the price of one and twice the discomfort. Note I didn’t say pain.

So I think you and your clinicians have gone exactly down the right road.

So I wish you the best of luck as ever, and try not to worry too much.

Cheers, John.
User
Posted 13 Oct 2018 at 11:54

I had a template biopsy as part of my diagnosis, I had no Ill effects and felt fine the afternoon after the procedure. Although it’s done under a general you shouldn’t be under long so a minimal hangover. 


Once you‘re In the system at the NHS it’s all pretty swift and the resources seem to be good. If at any stage you feel you’re not getting enough info or appointments are slow coming through it’s definitely worth chasing up.


For general info the nurses on the Prostate UK free helpline are fantastic. I found them a great support with unbiased and up to date information.


Wishing you all the best for your next steps.  


 

User
Posted 13 Oct 2018 at 16:48

Everyone has their own way to go through this process. In my case I found learning a little more about the condition helped. I bought a book by a renowned USA based surgeon which I found really useful in combination with the help from the local NHS prostate team and Prostate Cancer UK. 


Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (Fourth Edition)


(I cut and pasted in the name of the book, I’m not sure why it’s come out so big. I’m not on commission!)

Edited by member 13 Oct 2018 at 17:07  | Reason: Not specified

User
Posted 13 Oct 2018 at 17:13

Michaela, differing viewpoints as ever.


That’s the interweb today, and thank God for it - that’s how I found my Demi-God surgeon and oncologist......


Cheers, John. Still breathing.

Edited by member 13 Oct 2018 at 17:18  | Reason: Not specified

User
Posted 13 Oct 2018 at 17:57

Thank you to all of you, every pathway/experience is vitally important to us at this time. We obviously want to get the best/quickest investigations/treatment that’s right for us. Which is where all you lovely people come in. Who better to ask than those who’s been there before us! I realise different approaches to this is can be different for us all, but I think we like a bit of knowledg, so we are sure we are going down the right route.


 


Im sat here thinking the worst, and it got me thinking about statistics. I wonder how many people with the same  symptoms and history as us, have been ok when the mri and biopsy has come back?


Thanks again to ALL of you, your advice is very much appreciated at this worrying time.


Michaela x

User
Posted 13 Oct 2018 at 18:30

Originally Posted by: Online Community Member


Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (Fourth Edition)


(I cut and pasted in the name of the book, I’m not sure why it’s come out so big. I’m not on commission!)



Brilliant book. We had the earlier copy first so this one slightly updated. Dr Walsh I do believe is the gentleman who first discovered then developed the first nerve sparing prostatectomy so he is indeed regarded as THE GOD of  prostate surgery in America. Retired from surgery himself now but still very active in the prostate world.

User
Posted 17 Oct 2018 at 13:11

Hi, 


it’s biopsy day tomorrow, Mr L isn’t looking forward to it neither am I! But we will know what we’re looking at. Been trying to find out the odds of it not being PC, google is driving me mad! Anyone know the odds?  I just feel sick, and am envisaging all sorts of negative situations and conversations. Trying to keep up beat and positive, which I am managing most of the time, but sometimes I think only negative things. How the hell does life go on?


thank you for listening 


 

User
Posted 19 Oct 2018 at 10:34

Update - Template bx was done yesterda, Mr L is physically ok after it, in fact very well! However the Mri has shown a 2.5 cm tumour which abuts the capsule, the radiologist report has staged it as T3aN0M0. However the surgeon has said they can’t say it’s cancer until the biopsy results are back. To say we’re floored is an understatement as most of you probably know how that feels.


Im just struggling to understand why the surgeon didn’t confirm that it was cancer, is there still a chance it isn’t?


Is it right that the staging TNM is different depending on which cancer it is?


 


from what I understand T3a means it’s could just be spreading out if the prostate, meaning it’s still relatively early?


If anyone has any advice on the above and what might happen next, I would really appreciate it, as well as any positive stories.


Thank you

User
Posted 19 Oct 2018 at 10:44

I‘m very sorry to hear they’ve found something on the scan. I suggest you give the Prostate UK free helpline a call, the Nurses are very knowledgeable and should be able to answer most of your questions. 


Once you get the biopsy result the next steps will be advised. If it is cancer and you go with surgery or radiation/hormone treatment the odds are very much in favour of getting rid of it. 


It‘s much easier said than done but try not to worry too much and take it one step at a time. 

User
Posted 19 Oct 2018 at 11:03

Thank you for your kind words Mike. Yes I briefly spoke with the nurses yesterday, they were very nice. It’s just a waiting game!

User
Posted 19 Oct 2018 at 15:38

Originally Posted by: Online Community Member


Is it right that the staging TNM is different depending on which cancer it is?


from what I understand T3a means it’s could just be spreading out if the prostate, meaning it’s still relatively early?


 


The ability to confirm cancer based on MRI depends on the type of MRI - the more detailed ones will give a score out of 5 for how likely it is - a 1 means it is almost certainly not cancer and a 5 means it almost certainly is cancer. But without a biopsy they cannot confirm the diagnosis. The biopsy will also tell them which of the 27 different kinds of prostate cancer it is, which is important because some rare types need a specific treatment. Adenocarcinoma is the most common by far. 


 


The TNM has nothing to do with different types of cancer, it is a way of describing the full diagnosis.


T is the staging - T1 means the tumour is small and in only one part of the prostate, it can't be felt in DRE and often can't be seen on scans. T2 means the cancer can be seen and may be felt. T3 indicates that it is at or close to the edge of the gland or has broken out but only in a limited way - to the closest lymph nodes perhaps. T4 means it has broken out and invaded local tissue such as the bladder. 


N is about the further afield lymph nodes - if it has gone to the lymphatic system it is considered incurable but can be controlled


M is for metastases / spread - usually to the bones but might be lung, liver, etc. 


 


It is possible to be T1 or T2 but still have mets to bone or organ although this is more rare. T3 is not considered to be relatively early. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Oct 2018 at 16:29
Interestingly T3a is "locally advanced" so is not as early as you would like it to be, however it is rare in the UK to catch Pc really early because there is no effective screening and PC rarely produces side effects until it's been there a while (years!).

Now you have your staging the G score is important and it could still be a benign leision hence the need for biopsy.

At this stage you will have just about all forms of treatment available so now would be a good time to research these so you can ask informed questions when you get the definitive result from the biopsy.
User
Posted 19 Oct 2018 at 16:34

Originally Posted by: Online Community Member


N is about the further afield lymph nodes - if it has gone to the lymphatic system it is considered incurable but can be controlled....



My post operative histology came back as T3aN1M0 after two out of fourteen lymph nodes removed proved cancerous on biopsy.


My hopelessly optimistic oncologist told me I am cured despite those results, so I am off to see a Harley Street oncologist soon to see how cured he thinks I am....


Anyway, I am enjoying being cured....for now...


Cheers, John.

User
Posted 21 Oct 2018 at 08:49

Thank you once again for the informative replies.  We are very up and down at the moment, and I think things are starting to sink in.  We are preparing for a Pca diagnosis, and just praying it hasn't spread.


The MRI machine wasn't a mpMri.  The staging that the radiologist has given, could this change?  I'm thinking about the fact they'd said the 2.5cm tumour was abutting the capsule, they also said there was no lymphadenopathy or pelvic metastasis, which I'm clinging on to.


I know that Pca can be a slow growing cancer, but I'm thinking every day counts now.  Just want to start some sort of treatment or preferably to have the prostate removed.  Will they still remove the prostate if the cancer has broken out of the capsule?


Sorry for so many questions,


Thank you again


 

User
Posted 21 Oct 2018 at 09:27

The treatment offered may depend on your local team to a certain extent. I’ve just had my prostate removed even through they knew it was starting to spread (Gleason 9). It turned out to be T3b but they think they got it all. My lymph nodes were found to be clear. 


By way of contrast I have a friend who was Gleason 10 who was down to have the procedure in Belgium. Once they had him on the table and actually saw it had spread, confirming it had spread to lymph nodes by biopsy while he was still under. They then closed him up and he went straight into HT and RT. He is now clear and although told he would be on HT for 2-3 years they took him off at around 18 months. 


The stats are pretty positive whichever route you decide to take.  

User
Posted 21 Oct 2018 at 10:48

If the scan was not an mpMRI hi-res, hi-def, scan at 3 Tesla resolution, how can they tell the full extent of the cancer (if any)? The only way to tell is to look inside, which in a way the biopsy does, but that is no indicator of spread.


My tumour was 15mm and turned out to have spread, despite the scan indicating it had not.


Anyway, the biopsy result will be another piece in the jigsaw, so try not to worry too much about it till then.


Cheers, John

Edited by member 21 Oct 2018 at 12:10  | Reason: typo

User
Posted 21 Oct 2018 at 12:29
Even with a 3T they can't tell for sure, a 1.5 t will still show tumours. All require skilled human interpretation unless the cancer is so advanced it has destroyed all the normal structures.

If the cancer has broken out surgery is still an option it all depends how far it has gone. At some point it becomes more effective to use radiotherapy as the curative option.
User
Posted 21 Oct 2018 at 14:16
Some surgeons will operate even if it has just broken out; others would refuse. Some would refuse if it looked close to breaking out. Part of the problem is that they have to report their stats and so it is a bit risky for them to take on patients that could make their results look bad. Unfortunately, a couple of the supposedly top surgeons with amazing results are known for cherry picking only the safest patients. Others may look like they make more errors but are actually the brave ones who put patients before league tables.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Oct 2018 at 00:16

I had an MRI in May which was staged as T3aN0M0.  Afterwards I had a TRUS biopsy which came back negative.  So there is a chance that it isn't as bad as you fear.


Having said that I'm still waiting to find out why the staging might be T3aN0M0, when there isn't cancer.  I was given the results by a uro-oncology nurse who wasn't able to offer any explanation.  My PSA will be monitored on a regular basis and I will have my first follow up meeting with a consultant this week, so I'm hoping to feel more informed.   At the back of my mind is the possibility that the TRUS biopsy may have missed the tumour, but I have been able to forget about it all for 5 months.


Fingers crossed for you.

User
Posted 24 Oct 2018 at 06:56

It’s weird isn’t it? 


Had your mri actually seen anything? I thought the idea was to have the mri first, then if there’s something there to target the biopsy at, that’s their aim. My hubby has a 2.5cm target. What’s is your psa reading? It’s such a worry isn’t it.

User
Posted 24 Oct 2018 at 07:41
I had an MRI and biopsy staged mine at T2B actual staging post RP was T3a. Simple fact is until it's out and under a microscope they are estimating.

MRI on its own is an indicator of risk, it is not proof hence the need for biopsy. I think I would be asking for a template biopsy if the consultant validates the MRI.

User
Posted 24 Oct 2018 at 07:48

This is my other worry that they haven’t staged it right with the MRI. It did say it suggested early t3a. My hubby had a template bx, but the nurse had said they only took 12 samples, so I’m presuming it’s just from the tumour.


 

User
Posted 24 Oct 2018 at 09:04

Yes, my MRI did show something.  My radiology report, which I saw after my biopsy, said "...likely clinically significant tumour in the left peripheral zone with an irregular and probably breached capsule...".  I'm 55 and my PSA was 5.1 and the DRE showed my prostate was irregular. 


I believe there are conditions, such as prostatitis, that can cause false positives on MRI scans.  Like everything connected with identifying PCa there is a lot of uncertainty.

User
Posted 24 Oct 2018 at 09:38

My MRI scan indicated a Pirads 4 lesion and was interpreted as early stage t3a due to capsular irregulatiy, if biopsy confirmed cancer.


Thereafter I had a targeted template fusion biopsy where the MRI scan is fused with the ultrasound scan to provide a better picture.


Twelve samples were taken, with 4 samples from the suspect area and the other 8 samples from other areas of the prostate.


3 out of 4 samples from the suspect lesion came back with confirmed cancer (Gleason 9) with all other samples negative for cancer.


 


 

Edited by member 24 Oct 2018 at 09:39  | Reason: Not specified

User
Posted 25 Oct 2018 at 20:58

Mxs your Mri sound pretty similar to ours.  Are you happy with the decision to wait? I suppose I'm the kind of person that can't settle until something is sorted.  I would find it reassuring though if we were in your position.


 


Jon I think the Mri we had was just the standard one, but the biopsy was the same as yours. How long did you have to wait for your biopsy results?  We have received a letter yesterday, with an appointment for the 14/11, so 3 more weeks to wait.


I know they say PCa can be a slow growing cancer, but it worries me that if the capsule has been broken, then we need to move quickly.  It's really weird as it's the last thing on my mind at night and the first thing on my mind in the morning, but sometimes it's like it's not really happening to us! Indeed I wish it wasn't.


 


Lyn your comment was interesting about some surgeons only operating on the patients they are sure they can remove all of the cancer from, making them look better!  How do I find out how good a particular surgeon is or how good the oncology care is in a particular hospital?  We're from Hull and have a quite new cancer centre, but not sure if it's a leading centre or not? I'll have to google. 


 


Thanks again to everyone for taking the time to reply.

User
Posted 25 Oct 2018 at 23:28
If you know the name of the planned surgeon you can google their published outcomes data. All uro-surgeons have to publish this (although some ignore it). If you can't find it that way, ask the surgeon when you see him/her. The standard data they are supposed to collect is:
- % positive margins
- % biochemical recurrence
- % using one pad per day or less at the 12 month mark
- % able to get an erection either naturally or using mechanical / chemical assistance at the 12 month mark

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Oct 2018 at 23:40

I had surgery and they knew going in it had started to spread. That said a PET scan indicated it hadn’t gone much beyond the prostate. They think they got it all even though the post op biopsy was T3b. My first PSA test six weeks after the op should confirm if I’m fully clear. 


In summary my surgeon was happy to take on a tricky procedure confident the current surgical techniques were capable of doing the job. 


There is a tool on the below site where you can check how many procedures surgeons have completed along with surgical outcome data. 


https://www.baus.org.uk/patients/surgical_outcomes/radical_prostatectomy/


 


 

User
Posted 26 Oct 2018 at 08:11

Originally Posted by: Online Community Member


Mxs your Mri sound pretty similar to ours.  Are you happy with the decision to wait? I suppose I'm the kind of person that can't settle until something is sorted.  I would find it reassuring though if we were in your position.



I was okay with the decision, because they hadn't found anything.  I found I was able to put it all out of my mind whilst I waited for my next PSA test.  It's an odd position to be in though, because you know that the negative biopsy means that either there is nothing there, or the biopsy missed something. 


I had the results of my PSA test yesterday, and it has risen from 5.1 to 7.3.  That combined with my MRI scan showing T3a staging, means I am being booked in for a transperineal biopsy and the radiologists will review the scan.

User
Posted 26 Oct 2018 at 08:44

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Mxs your Mri sound pretty similar to ours.  Are you happy with the decision to wait? I suppose I'm the kind of person that can't settle until something is sorted.  I would find it reassuring though if we were in your position.



I was okay with the decision, because they hadn't found anything.  I found I was able to put it all out of my mind whilst I waited for my next PSA test.  It's an odd position to be in though, because you know that the negative biopsy means that either there is nothing there, or the biopsy missed something. 


I had the results of my PSA test yesterday, and it has risen from 5.1 to 7.3.  That combined with my MRI scan showing T3a staging, means I am being booked in for a transperineal biopsy and the radiologists will review the scan.



with the increase in the psa its best to go ahead with the template biopsy, at least then they will know. How long do you have to wait for it? Must be nice to be able to put things to the back of your mind, wish I had that ability.


 


thanks for that link Lyn, I will check it out.

User
Posted 26 Oct 2018 at 10:45

Jon I think the Mri we had was just the standard one, but the biopsy was the same as yours. How long did you have to wait for your biopsy results?  We have received a letter yesterday, with an appointment for the 14/11, so 3 more weeks to wait.


 


It was 18 days from biopsy to telephone phone in with nurse to obtain biopsy results. You can check all my timelines on my profile.

User
Posted 08 Nov 2018 at 15:43

can a nurse specialist give results of the biopsy?


our appointment has been brought forward by two days and it’s now with the nurse specialist.


Thanks

Edited by member 08 Nov 2018 at 15:57  | Reason: Not specified

User
Posted 09 Nov 2018 at 09:41

Yes. My results were advised to me by a cancer specialist nurse via a pre arranged telephone call in 

 
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