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Questions re RP -

User
Posted 31 Dec 2023 at 15:48

I was diagnosed on 4th December with Gleason 7 (4+3) T2A prostate cancer.  It's all on the lower left peripheral base side apparently.  It seems - from the results of the biopsy certainly - that the right side appears to be 'normal'.  I had two PSMA PET scans on 20th December; one MRI and one CT.  I found out on Friday that there were 'no additional findings' - that's their language - so the cancer has - it seems - not spread which is reassuring certainly.  (They say that the PSMA PET MRIs can see cancer seven years before other scans for which I'm most grateful.) 

This also means - I assume - that the two treatment options originally presented to me (a) RP and (b) RT with some additional HT for an unspecified time remain on the table.  At the moment I'm favouring RP - like so many others.  (That said IF I was able to get the five fraction hypofrationated RT - without HT - I would certainly plum for it first given the 96% clear return on the five year study from the 900 men participating and that it was targeted explicitly for intermediate cancers such as the one I possess.)  

I know there is a lot of expertise hereabouts and thought I would ask two questions if I might.

(i) The one thing I DO KNOW I HAVE - and have known for some years - is severe foraminal stenosis.  This does impact to some extent in the lumbar region but my personal major concern is cervical around the C5 area.  Happily I have learned over time how to manage it and have successfully done so.  I have tried to find information about a RP in relation to the severe foraminal stenosis but could only find a solitary case report where - 16 years post RP - a patient appeared with sciatica which turned out to have been a prostate cancer spread.  I'm assuming that if this would have been the case for me - at this juncture certainly - that it is most definitely something that would have appeared on at least one of the PSMA scans.  I realise that foraminal stenosis is not uncommon - they say most people begin to develop it from around the age of 24 - but I wonder if anyone (a) who has had a RP had any experience of such and what the impact - if any - was for them and/or (b) anyone else knowing of any issues I should ask about in this regard.  

(ii) While waiting - and simply as a proactive route to curb any interim anxieties - especially given it was broaching the Christmas period - I had a private scan of my upper femurs as I occasionally sensed I was experiencing/had felt pain on the left side there sporadically.   (Amazingly, of course, any residual infraction disappeared as soon as the scan was finished.)  To wit the scan did not generate any findings in term of a suggestion of cancer - which was good - but they did find that - once again to my total surprise - 'Incidental note is made of a small right-sided inguinal hernia which appears to contain an undistended testicle'.  This is a first to me.  If I feel about there it feels normal to me.  Perhaps this has been in place for a long time.  Certainly - as far as I'm aware - it has never impacted function.   Certainly it has never given me a moment's trouble.  I wonder if this, itself, would impact the RP?  

I will certainly be raising those two issues at my Treatment Information meeting on Tuesday.  I wonder also if people have any questions I should ask the surgeon that I might not otherwise think of.  If so, I would be most grateful for your kind advice. 

Bless you for your kind consideration and ALL.   

 

 

Edited by member 01 Jan 2024 at 00:30  | Reason: Not specified

User
Posted 31 Dec 2023 at 23:46

Well our expertise comes from a lay/amateur perspective. Always seek professional medical advice. Having said that there is plenty of lived experience here so that counts for something.

I had to Google nearly ever word in your post, so clearly you have much more expertise on your medical health, than possibly anyone else on here.

Personally I can't see why a problem near a neck vertebrae would be affected by RP. There are many other things I can't understand which nevertheless turnout to be true.

I like this post by this YouTube doctor:

https://youtu.be/yNzQ_sLGIuA?feature=shared

He pretty much says if you look hard enough you will always find a problem, so it's probably better not to look too hard.

It does sound like with all the scans you have had your prostate cancer really is confined in the prostate.

Dave

User
Posted 31 Dec 2023 at 15:48

I was diagnosed on 4th December with Gleason 7 (4+3) T2A prostate cancer.  It's all on the lower left peripheral base side apparently.  It seems - from the results of the biopsy certainly - that the right side appears to be 'normal'.  I had two PSMA PET scans on 20th December; one MRI and one CT.  I found out on Friday that there were 'no additional findings' - that's their language - so the cancer has - it seems - not spread which is reassuring certainly.  (They say that the PSMA PET MRIs can see cancer seven years before other scans for which I'm most grateful.) 

This also means - I assume - that the two treatment options originally presented to me (a) RP and (b) RT with some additional HT for an unspecified time remain on the table.  At the moment I'm favouring RP - like so many others.  (That said IF I was able to get the five fraction hypofrationated RT - without HT - I would certainly plum for it first given the 96% clear return on the five year study from the 900 men participating and that it was targeted explicitly for intermediate cancers such as the one I possess.)  

I know there is a lot of expertise hereabouts and thought I would ask two questions if I might.

(i) The one thing I DO KNOW I HAVE - and have known for some years - is severe foraminal stenosis.  This does impact to some extent in the lumbar region but my personal major concern is cervical around the C5 area.  Happily I have learned over time how to manage it and have successfully done so.  I have tried to find information about a RP in relation to the severe foraminal stenosis but could only find a solitary case report where - 16 years post RP - a patient appeared with sciatica which turned out to have been a prostate cancer spread.  I'm assuming that if this would have been the case for me - at this juncture certainly - that it is most definitely something that would have appeared on at least one of the PSMA scans.  I realise that foraminal stenosis is not uncommon - they say most people begin to develop it from around the age of 24 - but I wonder if anyone (a) who has had a RP had any experience of such and what the impact - if any - was for them and/or (b) anyone else knowing of any issues I should ask about in this regard.  

(ii) While waiting - and simply as a proactive route to curb any interim anxieties - especially given it was broaching the Christmas period - I had a private scan of my upper femurs as I occasionally sensed I was experiencing/had felt pain on the left side there sporadically.   (Amazingly, of course, any residual infraction disappeared as soon as the scan was finished.)  To wit the scan did not generate any findings in term of a suggestion of cancer - which was good - but they did find that - once again to my total surprise - 'Incidental note is made of a small right-sided inguinal hernia which appears to contain an undistended testicle'.  This is a first to me.  If I feel about there it feels normal to me.  Perhaps this has been in place for a long time.  Certainly - as far as I'm aware - it has never impacted function.   Certainly it has never given me a moment's trouble.  I wonder if this, itself, would impact the RP?  

I will certainly be raising those two issues at my Treatment Information meeting on Tuesday.  I wonder also if people have any questions I should ask the surgeon that I might not otherwise think of.  If so, I would be most grateful for your kind advice. 

Bless you for your kind consideration and ALL.   

 

 

Edited by member 01 Jan 2024 at 00:30  | Reason: Not specified

User
Posted 01 Jan 2024 at 10:25
Like Dave, I can't add much except to say that one of the side effects of RP is strong shoulder pain for 2-3 days caused as a side effect of the CO2 gas inflation of the abdomen to assist the RP procedure.

I don't know whether this could exacerbate your existing condition.

User
Posted 01 Jan 2024 at 11:27

Hi 

Just a thought from my experience. If you can you may like to ask your consultant to comment on the size of the 'negative' margin around the prostate. My consultant carried out two MRI scans -  one on a supposedly more accurate machine than the first one - and assured me that as far as he could tell the cancer was well contained. Good luck with whatever option you choose.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 14 Jan 2024 at 09:21

I have a lower back injury from windsurfing. Took a little management but no issues in terms of RARP. Only thing was I couldn’t do the usual core exercises to keep it settled for quite some post surgery. I suspect your clinical support staff should echo this.

in terms of hernia….quite common I believe. Many are plugged my fat for years so may never present as a problem. I guess the old saying of’don’t fix what’s not broken’ is fitting here 🤪😎

Edited by member 14 Jan 2024 at 09:24  | Reason: Not specified

User
Posted 19 Mar 2024 at 10:05
Wanted to add a brief note ... I'm having my RP on 27th March ... I managed to twist my back getting up from a stool I use at my desk at home last Friday and the weekend was something of an adventure in pain. I feel somewhat better today thankfully - but have developed a slight case of tactile allodynia - which often comes with a muscle strain. I called my GP surgery to get some Lidocaine - which I've used in the past for that same - and the DOCTOR I spoke to told me that I should 'get an x-ray to see if the cancer had spread' --- I told him I'd had both a PSMA Pet CT and PSMA Pet MRI in this regard on 20th December to determine this. He said: 'Yes, but it's now March'. I told him I thought that was absurd!!! He told me he would put on my report that 'I was refusing the X-ray because I had had the PET scans. I told him to please do so'.

Am I going mad??? Have I completely lost the plot??? ... or have THEY?????

No wonder the cancer death rates in this country are so shockingly high!!!

One would laugh if this situation wasn't just so despairing.

User
Posted 19 Mar 2024 at 10:49

Originally Posted by: Online Community Member
I'm having my RP on 27th March.

Good luck with the op mate. Please let us know how you get on.

As for the scan confusion, at one time I was being treated by two different Trusts. Talk about the left hand not knowing what the right hand was doing. One had booked me in for a MRI prostate MRI scan, a week after the other had booked me in for my prostatectomy. 

Edited by member 19 Mar 2024 at 18:21  | Reason: Additional text.

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User
Posted 31 Dec 2023 at 23:46

Well our expertise comes from a lay/amateur perspective. Always seek professional medical advice. Having said that there is plenty of lived experience here so that counts for something.

I had to Google nearly ever word in your post, so clearly you have much more expertise on your medical health, than possibly anyone else on here.

Personally I can't see why a problem near a neck vertebrae would be affected by RP. There are many other things I can't understand which nevertheless turnout to be true.

I like this post by this YouTube doctor:

https://youtu.be/yNzQ_sLGIuA?feature=shared

He pretty much says if you look hard enough you will always find a problem, so it's probably better not to look too hard.

It does sound like with all the scans you have had your prostate cancer really is confined in the prostate.

Dave

User
Posted 01 Jan 2024 at 10:25
Like Dave, I can't add much except to say that one of the side effects of RP is strong shoulder pain for 2-3 days caused as a side effect of the CO2 gas inflation of the abdomen to assist the RP procedure.

I don't know whether this could exacerbate your existing condition.

User
Posted 01 Jan 2024 at 11:27

Hi 

Just a thought from my experience. If you can you may like to ask your consultant to comment on the size of the 'negative' margin around the prostate. My consultant carried out two MRI scans -  one on a supposedly more accurate machine than the first one - and assured me that as far as he could tell the cancer was well contained. Good luck with whatever option you choose.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 14 Jan 2024 at 09:21

I have a lower back injury from windsurfing. Took a little management but no issues in terms of RARP. Only thing was I couldn’t do the usual core exercises to keep it settled for quite some post surgery. I suspect your clinical support staff should echo this.

in terms of hernia….quite common I believe. Many are plugged my fat for years so may never present as a problem. I guess the old saying of’don’t fix what’s not broken’ is fitting here 🤪😎

Edited by member 14 Jan 2024 at 09:24  | Reason: Not specified

User
Posted 19 Mar 2024 at 10:05
Wanted to add a brief note ... I'm having my RP on 27th March ... I managed to twist my back getting up from a stool I use at my desk at home last Friday and the weekend was something of an adventure in pain. I feel somewhat better today thankfully - but have developed a slight case of tactile allodynia - which often comes with a muscle strain. I called my GP surgery to get some Lidocaine - which I've used in the past for that same - and the DOCTOR I spoke to told me that I should 'get an x-ray to see if the cancer had spread' --- I told him I'd had both a PSMA Pet CT and PSMA Pet MRI in this regard on 20th December to determine this. He said: 'Yes, but it's now March'. I told him I thought that was absurd!!! He told me he would put on my report that 'I was refusing the X-ray because I had had the PET scans. I told him to please do so'.

Am I going mad??? Have I completely lost the plot??? ... or have THEY?????

No wonder the cancer death rates in this country are so shockingly high!!!

One would laugh if this situation wasn't just so despairing.

User
Posted 19 Mar 2024 at 10:49

Originally Posted by: Online Community Member
I'm having my RP on 27th March.

Good luck with the op mate. Please let us know how you get on.

As for the scan confusion, at one time I was being treated by two different Trusts. Talk about the left hand not knowing what the right hand was doing. One had booked me in for a MRI prostate MRI scan, a week after the other had booked me in for my prostatectomy. 

Edited by member 19 Mar 2024 at 18:21  | Reason: Additional text.

 
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