I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

First MRI scan

Email this conversation Print this conversation
User
Posted 31 Jan 2022 at 15:07

Hi,


Just had the results back from my scan, Likert 3 and 4, T2 NO.


Going for my biopsy in 2 weeks, assuming the results come back positive, what sort of treatment will I be offered?.


 

User
Posted 31 Jan 2022 at 19:36
Peter,

A Likert scale is any scale that measures a range of outcomes, such as "Very Unlikely" at one end to "Almost Certain" at the other end, or "I hated it" to "I loved it", etc. They're very widely used in questionnaires.

Best wishes,

Chris
User
Posted 18 Feb 2022 at 21:50
Dr No, as LynEyre says (she is the most reliable information source on this forum) incontinence is a consequence of surgery that depends to a considerable extent on things neither you or our sugeon can predict in advance. The main one is the relation of the "internal" sphincter (there are two, but this is the one that gets damaged) to the prostate. Because the sphincter wraps around the ureter (tube taking urine from the bladder to the penis) immediately above and sometimes overlapping the prostate, it depends how much removal of the prostate also damages the sphincter or the nerves it depends on. No one, not even the best surgeon, knows that in advance.

But the good news is that probabilities are in your favour. A lot of men recover continence completely, and of the rest most are like me needing one pad a day. It goes on when I get dressed in the morning, and is disposed of when I go to bed (leakages aren't a problem horizontal in bed). Some days the pad is more full than others, but still OK. Very occasionally I realise the pad is pretty full at some point in the afternoon and change it - it is impossible to predict in advance although I do know that certain things (lots of coffee, activities like gardening that put pressure on the bladder) sometimes correlate. My biggest risk personally is alcohol, reasonable amounts are completely fine but parties where my glass is continually filled without me knowing how much I have had (or, after a while, worrying about it) do lead to sphincter issues.
User
Posted 31 Jan 2022 at 17:50

Hi,  I've never heard of Likerts before but now believe it's the same as PI-RADS where a 3 is indeterminate and a 4 likely.


The biopsy will give a Gleason score from what they find.


What they'll offer if it's positive is possibly active surveillance, surgery or radiotherapy.  Perhaps they'll offer brachytherapy or you could seek out lesser available treatments like HIFU or cyberknife.  It can depend on your Gleason, the location of the growth, your fitness and other factors.


As you may have gathered they usually let the patient decide which is quite good but puts quite an onus on you to know what's best.  Some will have no idea.  Although if like me you worry about it being near the edge you might  instinctively go for what seems fastest and your preferene.  It's better to think hard though and find out what you can.


You could write all night on this subject so as a starter if that lays a broad brush.


Regards
Peter

User
Posted 31 Jan 2022 at 23:13
As Chris says, 'likert' just means a scale from a low point to a high point. In your case, the scale is 1 - 5 where 1 means highly unlikely to be cancer, 3 is equivocal and 5 is highly likely to be cancer. It is not an exact science and we have had a few men through the forum recently who had a PIRADS 5 but subsequently got the all clear - the important thing is that your urologist now knows where the 3 / 4 areas are and will take samples from those areas rather than a scattergun approach.


"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2022 at 17:42

It varies between Health Authorities and even hospitals, but in my case the findings of my 2 biopsies (one in June and one in September) were made known to me within 10 days. As a point of reference, my prostate was removed on 21/12/21 at Addenbrookes and although I received feed back from the surgeon the day after the operation my histology report on the removed prostate is not scheduled until 03/02/22. I know there are backlogs with the biopsy departments across the country, but in my case because the cancer was, hopefully, removed the same time my prostate was I have not been worried about the delay in reporting back to me.


 


Ivan   

User
Posted 01 Feb 2022 at 17:44

Good luck,hope everything is ok

User
Posted 01 Feb 2022 at 20:37

I had my biopsy 11th Nov last year and didn't get the results until 8th Dec. As Ivan says the timescale does vary. Certain NHS Trusts are under a lot of pressure at the moment but the last thing you want is to be on tenterhooks waiting to know whether you have PCa. Hope you get a swift turnaround. Chris

User
Posted 01 Feb 2022 at 21:45

Hi


As some people have said here, it varies from region but mine in the south east Kent from my biopsy to getting the meeting with the consultant was 10 days if that helps? 


wishing you all the best and fingers crossed for you. 

User
Posted 01 Feb 2022 at 22:57

Prostatectomy is a very major operation and it takes time to heal. I would ask your consultant when you should be able to swim but I would not do it for at least a couple of months post op and then avoid diving and aggressive movements. for a further period whilst gradually building up to more strenuous sessions.  As to the incontinence aspect, it will presumably depend on how you are affected and whether you intend swimming in the sea or in public baths.

Edited by member 01 Feb 2022 at 23:06  | Reason: Not specified

Barry
User
Posted 01 Feb 2022 at 23:10

You responded before I edited having reread your post having responded, now done.

Barry
User
Posted 01 Feb 2022 at 23:57
incontinence shouldn't prevent you from swimming - it is possible to buy proper swimming trunks for this situation.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Feb 2022 at 13:37

Surgery was the only option i was given too- good luck with your biopsy!


had my prostate out 3 weeks ago. recovering now.


take care

User
Posted 04 Feb 2022 at 06:42

Good luck on the biopsy


as you can see there is no one silver bullet on treatment. However many doctors are unaware of other less invasive treatment options such as HIFU and IRE


Have a look at my post on IRE treatment I opted for 


best wishes 

User
Posted 17 Feb 2022 at 09:12

That was my research findings on outcomes plus you gave optionality if there is a reoccurrence. Good to look and discuss options. Sadly IRE not really understood or practiced in U.K.


i would check German option —Vitus if that’s an option to you  


Good luck 

User
Posted 17 Feb 2022 at 13:46

Cost to one side Vitus have considerably more experience than U.K. options. They also incorporate a novel Electrochemotherapy in conjunction. which I don’t think they do in U.K. 


Also more complicated IRE are referred to Vitus from Kings which I think gives you some idea of experience and expertise 


just worth considering 

User
Posted 17 Feb 2022 at 14:47

Hi Dr No


 


I had my prostate removed at Addenbrookes last December at age 63 and 8 weeks on am fully continent. Others on here are in similar positions. Now, we are all different and the outcomes for one person could be completely different for somebody else, but I understand that it is quite rare for somebody to permanently lose total bladder control after surgery. Additionally, I  personally know 2 people that underwent surgery, at Addenbrookes as it so happens, in 2010 and both regained full continence after a number of months. One is now 81 and the other is 79.  One  now has some leakage but that is probably due to age rather than surgery that happened  nearly 12 years ago.


 


Ivan

User
Posted 17 Feb 2022 at 22:23
Once again, I will point out that it isn't generally referred to as IRE in the UK - if you search for NanoKnife, you may find more options. NanoKnife has been available in the UK privately for a few years but is now available on the NHS at UCLH and I understand a number of other cancer centres of excellence are also going to be rolling it out. If your cancer is small enough to be suitable for Nanoknife, you might feel you can afford to wait for the NHS?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2022 at 22:37

No, incontinence after prostatectomy is not due to lifestyle - it is due to a) how much damage is done to the urinary sphincter during the op b) whether the nerve bundles were removed and c) the luck of the draw. At 12 months post-op, 90% of men are on one pad per day or less.


The two people who offer NanoKnife at King Edwards are the same people who do it on the NHS at UCLH

Edited by member 17 Feb 2022 at 22:38  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 31 Jan 2022 at 17:50

Hi,  I've never heard of Likerts before but now believe it's the same as PI-RADS where a 3 is indeterminate and a 4 likely.


The biopsy will give a Gleason score from what they find.


What they'll offer if it's positive is possibly active surveillance, surgery or radiotherapy.  Perhaps they'll offer brachytherapy or you could seek out lesser available treatments like HIFU or cyberknife.  It can depend on your Gleason, the location of the growth, your fitness and other factors.


As you may have gathered they usually let the patient decide which is quite good but puts quite an onus on you to know what's best.  Some will have no idea.  Although if like me you worry about it being near the edge you might  instinctively go for what seems fastest and your preferene.  It's better to think hard though and find out what you can.


You could write all night on this subject so as a starter if that lays a broad brush.


Regards
Peter

User
Posted 31 Jan 2022 at 19:36
Peter,

A Likert scale is any scale that measures a range of outcomes, such as "Very Unlikely" at one end to "Almost Certain" at the other end, or "I hated it" to "I loved it", etc. They're very widely used in questionnaires.

Best wishes,

Chris
User
Posted 31 Jan 2022 at 22:10

Thats how they scored the scan,I can only assume that the higher the score the more likely it is to be cancer.


I had to ask for the scan results,found that a bit odd.

User
Posted 31 Jan 2022 at 23:13
As Chris says, 'likert' just means a scale from a low point to a high point. In your case, the scale is 1 - 5 where 1 means highly unlikely to be cancer, 3 is equivocal and 5 is highly likely to be cancer. It is not an exact science and we have had a few men through the forum recently who had a PIRADS 5 but subsequently got the all clear - the important thing is that your urologist now knows where the 3 / 4 areas are and will take samples from those areas rather than a scattergun approach.


"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Jan 2022 at 23:31

Originally Posted by: Online Community Member


Thats how they scored the scan,I can only assume that the higher the score the more likely it is to be cancer.


I had to ask for the scan results,found that a bit odd.



Sometimes it can be useful to know the PSA figure and DRE assessment that presumably precipitated your referral  and diagnostic scan and forthcoming biopsy.  Generally, for an initial PSA, the higher the PSA figure, the greater the chance of it being cancer, although a small number have cancer even with a very low PSA.  Conversely,  a few men may have a PSA say above 30 but not have PCa.  Scans show suspicious areas from which biopsy takes samples for examination and grading and helping to provide a staging.


We often recommend that men diagnosed with PCa download or obtain a free copy of the 'Tool  Kit' This gives a lot of information about PCa and various treatments, although not everybody is suitable for all treatments.  You may consider this is worth reading, even though you have not yet been definitively diagnosed with PCa.  :- https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100


PS.  When results of all tests and scans are available and have been considered by the Multi Disciplinary Team (MDT), a diagnosis is given to the patient along with suitable treatment options.  If you were just given the result of an individual scan, the diagnosis might have to be changed in the light of other diagnostic tests.  It happened to me and I was rather put out to find my staging had been made worse when I got the final diagnosis.

Edited by member 31 Jan 2022 at 23:43  | Reason: Not specified

Barry
User
Posted 01 Feb 2022 at 05:15
My PSA was 5.5 up from 4.7 a year ago,I am 64.
User
Posted 01 Feb 2022 at 05:20

Thanks for that,since coming on this forum I feel that the Doctor I am dealing with,basically has told me that I have only one option and that was Surgery,I also had to ask for my scan results all of which,without this forum,I would have been none the wiser.I have been worrying myself sick since mid December thinking surgery was my only option.

User
Posted 01 Feb 2022 at 14:32

Your psa is quite low and the probability before your MRI of it being benign would be well over 50%.  I don't know how certain they can be from an MRI but it's pointing at an abnormality, the biopsy will give an answer.   Nothing is certain my Gleason Score was increased after the op when my prostate was cut up in the lab, how nasty is that.


We don't know if the doctor has inside information making surgery preferable.  Sometimes it's said a surgeon will promote surgery and an oncologist radiotherapy.   Although there is little difference between surgery and radiotherapy in outcome for many cases, there are cases where one option is better than another.  For example radiotherapy can be targeted more widely than surgery.  If surgery fails then you can have radiotherapy but not the other way round normally.


Surgery is offered people fit enough to spend over 2 hours tilted head down at an angle.  The older people being treated are more likely to be offered radiotherapy with hormones which can be several months of treatment, although it's non-invasive.


They also say sometimes people are overtreated, I was offered active surveillance if I had a template biopsy, and was told the offer was to not be seen as overtreating.  To me it sounded folly as they said it was T2 (T3?) near the edge of the prostate.


The person offering you treatment should be taking advice from a multi-disciplinary team that includes a surgeon and an oncologist, although it might be the surgeon you're talking to.


All the best
Peter

User
Posted 01 Feb 2022 at 15:22
Thanks for the reply,
Having my biopsy on the 16th Feb, how soon after the biopsy do they contact you with the results ?.
User
Posted 01 Feb 2022 at 17:42

It varies between Health Authorities and even hospitals, but in my case the findings of my 2 biopsies (one in June and one in September) were made known to me within 10 days. As a point of reference, my prostate was removed on 21/12/21 at Addenbrookes and although I received feed back from the surgeon the day after the operation my histology report on the removed prostate is not scheduled until 03/02/22. I know there are backlogs with the biopsy departments across the country, but in my case because the cancer was, hopefully, removed the same time my prostate was I have not been worried about the delay in reporting back to me.


 


Ivan   

User
Posted 01 Feb 2022 at 17:44

Good luck,hope everything is ok

User
Posted 01 Feb 2022 at 20:37

I had my biopsy 11th Nov last year and didn't get the results until 8th Dec. As Ivan says the timescale does vary. Certain NHS Trusts are under a lot of pressure at the moment but the last thing you want is to be on tenterhooks waiting to know whether you have PCa. Hope you get a swift turnaround. Chris

User
Posted 01 Feb 2022 at 21:45

Hi


As some people have said here, it varies from region but mine in the south east Kent from my biopsy to getting the meeting with the consultant was 10 days if that helps? 


wishing you all the best and fingers crossed for you. 

User
Posted 01 Feb 2022 at 22:07

Does having the prostate removed and all the incontinence issues that go with it, prevent you from going swimming ? Sounds like a stupid question.

User
Posted 01 Feb 2022 at 22:57

Prostatectomy is a very major operation and it takes time to heal. I would ask your consultant when you should be able to swim but I would not do it for at least a couple of months post op and then avoid diving and aggressive movements. for a further period whilst gradually building up to more strenuous sessions.  As to the incontinence aspect, it will presumably depend on how you are affected and whether you intend swimming in the sea or in public baths.

Edited by member 01 Feb 2022 at 23:06  | Reason: Not specified

Barry
User
Posted 01 Feb 2022 at 23:01

I was thinking more of the incontinence issue,but thanks for the advice.

User
Posted 01 Feb 2022 at 23:10

You responded before I edited having reread your post having responded, now done.

Barry
User
Posted 01 Feb 2022 at 23:57
incontinence shouldn't prevent you from swimming - it is possible to buy proper swimming trunks for this situation.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Feb 2022 at 13:37

Surgery was the only option i was given too- good luck with your biopsy!


had my prostate out 3 weeks ago. recovering now.


take care

User
Posted 02 Feb 2022 at 13:38

How's the incontinence ??.

User
Posted 04 Feb 2022 at 06:42

Good luck on the biopsy


as you can see there is no one silver bullet on treatment. However many doctors are unaware of other less invasive treatment options such as HIFU and IRE


Have a look at my post on IRE treatment I opted for 


best wishes 

User
Posted 04 Feb 2022 at 07:49

Thanks for the reply, are those treatments available at most Hospitals or only at specialist centres ?.

User
Posted 16 Feb 2022 at 17:43

Just had my biopsy, not a pleasant experience.Get my results in 2 weeks.

User
Posted 16 Feb 2022 at 17:46

I have been checking out IRE.I have contacted King Edwards hospital in London who offer this treatment.I have sent them my MRI results and they are waiting for my biopsy results before telling me if I am suitable.

User
Posted 16 Feb 2022 at 17:55

What was yr biopsy results? Be good to know what your discussions are with King Edward’s and your feeling on treatment options 


I go to Germany in two weeks for post IRE operation follow up and MRI

User
Posted 16 Feb 2022 at 19:29
I get the results two weeks today.IRE,if I am suitable, seems a good option, the results after 10 yrs seem comparable with any other type of treatment.
User
Posted 17 Feb 2022 at 09:12

That was my research findings on outcomes plus you gave optionality if there is a reoccurrence. Good to look and discuss options. Sadly IRE not really understood or practiced in U.K.


i would check German option —Vitus if that’s an option to you  


Good luck 

User
Posted 17 Feb 2022 at 12:20

I did contact Vitus, but the initial price for treatment was cheaper in the UK but I will keep my options open.Thanks for your help.

User
Posted 17 Feb 2022 at 13:46

Cost to one side Vitus have considerably more experience than U.K. options. They also incorporate a novel Electrochemotherapy in conjunction. which I don’t think they do in U.K. 


Also more complicated IRE are referred to Vitus from Kings which I think gives you some idea of experience and expertise 


just worth considering 

User
Posted 17 Feb 2022 at 13:56

I will let you know how I go, obviously biopsy dependant.Being 64, the thought of being  incontinent scares me more than the cancer,

User
Posted 17 Feb 2022 at 14:47

Hi Dr No


 


I had my prostate removed at Addenbrookes last December at age 63 and 8 weeks on am fully continent. Others on here are in similar positions. Now, we are all different and the outcomes for one person could be completely different for somebody else, but I understand that it is quite rare for somebody to permanently lose total bladder control after surgery. Additionally, I  personally know 2 people that underwent surgery, at Addenbrookes as it so happens, in 2010 and both regained full continence after a number of months. One is now 81 and the other is 79.  One  now has some leakage but that is probably due to age rather than surgery that happened  nearly 12 years ago.


 


Ivan

User
Posted 17 Feb 2022 at 22:23
Once again, I will point out that it isn't generally referred to as IRE in the UK - if you search for NanoKnife, you may find more options. NanoKnife has been available in the UK privately for a few years but is now available on the NHS at UCLH and I understand a number of other cancer centres of excellence are also going to be rolling it out. If your cancer is small enough to be suitable for Nanoknife, you might feel you can afford to wait for the NHS?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2022 at 22:30

Ok, thank you.I was not aware it was available through the nhs. I get my biopsy results in 2 weeks so will ask the question if it’s relevant.
Why does the incotinence issue vary so much from patient to patient.I wonder if it has anything to do with lifestyle.A friend of mine who suffered from PC was told to stop drinking tea and coffee as they were both diuretics.


 

User
Posted 17 Feb 2022 at 22:37

No, incontinence after prostatectomy is not due to lifestyle - it is due to a) how much damage is done to the urinary sphincter during the op b) whether the nerve bundles were removed and c) the luck of the draw. At 12 months post-op, 90% of men are on one pad per day or less.


The two people who offer NanoKnife at King Edwards are the same people who do it on the NHS at UCLH

Edited by member 17 Feb 2022 at 22:38  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2022 at 22:43

Great, thank you for the info, as I said in a previous comment, the incontinence really worries me.

User
Posted 18 Feb 2022 at 08:40

The results from Vitus using IRE ( Nanoknife) show no incidence of in continence   with over 1600 operations .


As I said compare all treatment methods and outcomes when making your decisions and do your own research too


good luck 

User
Posted 18 Feb 2022 at 08:42

Thanks Paul.

User
Posted 18 Feb 2022 at 21:50
Dr No, as LynEyre says (she is the most reliable information source on this forum) incontinence is a consequence of surgery that depends to a considerable extent on things neither you or our sugeon can predict in advance. The main one is the relation of the "internal" sphincter (there are two, but this is the one that gets damaged) to the prostate. Because the sphincter wraps around the ureter (tube taking urine from the bladder to the penis) immediately above and sometimes overlapping the prostate, it depends how much removal of the prostate also damages the sphincter or the nerves it depends on. No one, not even the best surgeon, knows that in advance.

But the good news is that probabilities are in your favour. A lot of men recover continence completely, and of the rest most are like me needing one pad a day. It goes on when I get dressed in the morning, and is disposed of when I go to bed (leakages aren't a problem horizontal in bed). Some days the pad is more full than others, but still OK. Very occasionally I realise the pad is pretty full at some point in the afternoon and change it - it is impossible to predict in advance although I do know that certain things (lots of coffee, activities like gardening that put pressure on the bladder) sometimes correlate. My biggest risk personally is alcohol, reasonable amounts are completely fine but parties where my glass is continually filled without me knowing how much I have had (or, after a while, worrying about it) do lead to sphincter issues.
User
Posted 18 Feb 2022 at 21:55

Thanks so much for the advice and info, just me trying to come to terms with the whole scenario.

User
Posted 02 Mar 2022 at 14:22
Hi All,
So I have been told my biopsy was positive,Gleason score of 3+4.Have an appointment with the Oncologist 3rd week in March.I was taken through all my options but Nanoknife (IRE) was not one of them.I will bring that treatment up with with the Consultant when I see him.Still waiting for the official report.
 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK