Since my diagnosis in 2015 (Gleason 6) following a HoLEP procedure, I've only had two follow up MRIs in 2016 and 2017 and reliance was put on 6 monthly PSA checks which have stayed around the 1.9 mark for 6 years, the last one being done last October.
During a telecon with my Urologist where the main topic of conversation revolved around my kidney condition, I happened to mention that I'd not had an MRI of the prostate for almost 5 years and my Uro said he'd arrange one which he did and I had the MRI about a month ago.
Today I received a letter from him advising the MRI showed a PIRADS 4 lesion within the left peripheral zone and that he was arranging for me to have a TP biopsy.
This came as quite a surprise to me as with having had no change in my PSA for many years this lesion is either benign or my existing lesion has decided to come out of hibernation without bothering to announce its growth via my PSA.
I've not been complacent about my PCa and have taken it seriously since 2006 when I was first suspected of having it and changed my diet accordingly (going non dairy, no red meats, cutting out sugar, etc) to either keep it at bay or slow it down and over the years I've kept up to date on advances in medications and treatment regimes which has put me in a good position when it comes to treatment choices.
Because of a few other health conditions I have discounted the use of hormone therapy and instead I'm looking toward either radiotherapy, bracy, HIFU or Cryo as a treatment, dependant on it being available in the hospital trust that deals with my PCa. Should hormone treatment be recommended I shall look seriously at having an orchidectomy (I have no wish to grow manboobs, become a raging monster or weepy all the time).
I doubt if radical surgery would be offered due to my age and other health conditions and I wouldn't be interested even if it were offered, as GA and I do not get on well together and I've had many spinal anaesthesias for all procedure below the chest over the last two decades, all without problems of any kind.
So gentlemen and ladies (Lyn), do you have any comments or views on the above?
I may have been a member of this forum since 2005 and learnt a lot from many of the good people who have posted on here but I'm still keen to hear what others have to say about what I've said and particularly about my choices of possible treatment options.
Thanks and keep safe and well all of you.
Roger |
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All the very best to the future whatever you decide to go for, I’m Chemo again next week, but that’s me, you have managed without a lot of procedures over a similar number of years to me, so well done to us both for all those years.
Chris.
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Chris
My grey cells have come to life suddenly and now remember Alex Munro from when we met him and his wife at the Mill on the Soar one year and kept in touch with him for a while via phone and once to see him where he lived just south of Lincoln.
Sadly he died not that long after and I attended his funeral.
It wasn't he that came to Skeggy of that I'm sure.
Roger |
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Yes, Alex Munro - such a lovely man. First time I met him was in Skeggy. Well done CC
The bloke with the camper van - he will be thrilled that this is how he is remembered 🤣
Edited by member 24 Feb 2022 at 17:51
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ooooh, I love nostalgia and Chris, your link to the discussion in 2019 helped straighten things out in my head.
As I see it now it was my wife and I, Lyn and her other half, Ray on his tod and Ross (Lyn, please jump in here if I've still got it wrong).
Even though we were so few it was bloody good fun and a pity more of these smaller gatherings never really took off, other than Newark which did become popular and never got overwhelming with numbers like the Mill on the Soar.
So, after all this we are still none the wiser as to who had the orchi wotsit and perhaps we never shall. Perhaps I should have it done just so I can record my experiences on here and become a font of knowledge on the subject.
Discussing it last night with my wife she pointed out one benefit that would come from be "deflowered" and that would be if I got involved in a punch up and someone gave me a kick in the groin. She said I could just stand there laughing at them and tellling them the have another go. I've no idea where she got the idea I'd hang around when a punch up looked likely, I'd be off as fast as my zimmer would allow. :)
Roger |
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Interesting - the PIRADS 4 could turn out to be misleading, of course, but if the biopsy pulls out some positive cores and it is still an adenocarcinoma, I would be tempted towards brachy as a mono therapy. HIFU will be worth exploring if the results indicate only one or two specific areas to target rather than an extensive scattering of positive cores.
Orchidectomy / orchiectomy wouldn’t necessarily save you from the fatigue, tears and mood swings; moobs tend to be more of an issue with bicalutimide than with Prostap, Zoladex, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Roger,
The way PSA moves after treatment gives a reasonably good idea of whether the cancer is progressing in many men but for others this is not the case and perhaps the true situation may be missed if lack of symptoms doesn't prompt further investigation. So good that you had the MRI if belatedly.
Not sure from what you say If you neither want a GA nor Spinal Block for any treatment as if so that would rule out both forms of Brachytherapy or HIFU. and other forms of Focal Therapy. For radical treatment that would then leave EBRT or perhaps SBRT. as possibilities.
You may be aware that although I originally had HT prior to and during RT, I have resisted having it since, although I have had HIFU in 2015 and December 2021. However, it's most unlikely that I can have any more radical treatment so if indicated, I may have to reluctantly revert to HT. Orchidectomy would remove the possibility of having a hormone holiday that chemical castration can provide so it depends how you consider it.
Barry |
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Given how slow the rise in your psa has been over the past 5 or so years, plus the fact that you were treated for BPH some time ago, it might be premature to assume anything prior to your TP biopsy.
Jules
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Lyn.
As ever an insightful response on the form of therapy, brachy has always been a firm favourite of mine ever since I began the journey all those years ago and thank you for your comments on HIFU.
There is an outside chance that the lesion is of a benign nature but looking at the stastics for PIRADS 4 it's only a 15% chance but ever hopeful that may be the case.
I apologise for the incorrect spelling but perhaps I was drawn toward orchidectomy by virtue of the fact that I see them as my little flowers. :)
Barry
I was indicating that my preference was for a "spinal" for every procedure below the chest and having had five procedures on my prostate and kidneys without any post op issues it's a route I shall take again. One surgeon was against it because he didn't like engaging in conversation with the patient during the procedure but I persisted with my request and following the procedure he thanked me for keeping quiet. The other big plus is that the TV show is enthralling and to watch what is happening inside your own body is facinating. The main issue that concerns surgeons is how long the anaesthesia lasts and can he carry out the procedure in the given timescale. My HoLEP took 80 minutes and I felt no sensations at all during the procedure, so as long as Brachy and HIFU could be carried out within a window of opportunity (say 90 minutes), either of those two procedures could be an option.
Jules
Thanks for your response and no not assuming anything but getting things sorted in my mind for any of the options open to me is important for me.
ATB people and keep safe.
Roger |
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Not a wrong spelling - I think both terms are used for the same operation.
Having sat in a pub with you, I can imagine how hard it was for you to be quiet for the consultant - what an ego he must have!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Roger, can you remember the forum name of the man who had orchiectomy? He used to come to Leicester and I think also came when we met Ray in Skegness? I was sure it was Alex but I can't find him.
Edited by member 24 Feb 2022 at 12:00
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I've mellowed a lot since those heady days at the Mill on the Soar and Brenda seldom has to use the gag!
He was on a bit of an ego trip but thankfully didn't wear a bow tie.
You've got me with the name of the chap that came along to the Skeggy do, perhaps the chap from London with the VW camper would remember his name. I'll try and contact him but I lost his email address years ago.
Roger |
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Originally Posted by: Online Community MemberRoger, can you remember the forum name of the man who had orchiectomy? He used to come to Leicester and I think also came when we met Ray in Skegness? I was sure it was Alex but I can't find him.
Lyn was it this guy ? The link to the profile doesn't work for me.
Thanks Chris
"Many of us have been wondering how Alex Munro(amnuro36) was doing, after seeing no posts since January.
http://forum.prostate-cancer.org.uk/forums/pop_profile.asp?mode=display&id=6357"
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All the very best to the future whatever you decide to go for, I’m Chemo again next week, but that’s me, you have managed without a lot of procedures over a similar number of years to me, so well done to us both for all those years.
Chris.
User
Chris
My grey cells have come to life suddenly and now remember Alex Munro from when we met him and his wife at the Mill on the Soar one year and kept in touch with him for a while via phone and once to see him where he lived just south of Lincoln.
Sadly he died not that long after and I attended his funeral.
It wasn't he that came to Skeggy of that I'm sure.
Roger |
User
Rodger.
It was all before my time, and I was trying to understand the sequence of events, in one post someone said something like see you at Skeggy next time. I did see that he had passed away.
Thanks Chris
User
Yes, Alex Munro - such a lovely man. First time I met him was in Skeggy. Well done CC
The bloke with the camper van - he will be thrilled that this is how he is remembered 🤣
Edited by member 24 Feb 2022 at 17:51
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Roger,
Thank you for confirming you would be prepared to have treatment under Spinal Anaesthetic which seems will give you more treatment options should Biopsy prove this is warranted.
If your local hospital group cannot offer your preferred treatment, even if this is an option you could seek an approval to where it is undertaken. (There was a case where the local Commissioning Group refused to pay for a treatment elsewhere that they were unable to provide within their area but this was provided when appealed to NHS England.)
Lyn,
I did find 3 men on the forum who had had Orchiectomy and sent you a PM earlier this week but your in box was said to be full. I assumed that when you cleared some of your messages mine would be included but perhaps it does not work on the forum this way? Unfortunately, I have been unable to retrieve this message on my forum account or on my laptop. The information was gleaned through going through over 60 pages of entries taking an evening, so is not an exercise I would wish to repeat in a hurry. I think the first name of the last possibility was 'Alan' but can't remember his user name.
Barry |
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Aww - sorry Barry, I don't have my inbox functioning. What a shame after all your work. I am sure it was Alex Munro I was thinking of - did you ever talk to him at Leicester?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Lyn, i did get to the profile of Alex Munro but it did not mention an orchiectomy or orchidectomy.
Thanks Chris
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No - not Alex Munro after all ... he died quite soon after I joined. I will have to email George - this is driving me round the twist!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Lyn.
Going back to this comment made by Chris "in one post someone said something like see you at Skeggy next time. I did see that he had passed away", could this have been "Old Al".
I remember he was due to appear at the Skeggy event but never showed and in fact never showed at any events despite his promises to attend. He died a few years after his non appearance although I did manage to track him down and called on him one day when in the area and subsequent to that I remember my wearing a badge with "I've met Old Al" at the next Mill on the Soar, such was his notoriety at not appearing at events he said he would attend.
Getting back to who appeared at the event and not having such a good memory as my other half, I asked her for her recollections of the day and she remembers only one couple Ray and his wife who lived in Skeggy at the time and subsequently moved to the Midlands, Birmingham if I recall, the man with the camper van and one other chap who is probably the one who's name we are seeking.
Don't allow yourself to be driven around any "twists", you'll get dizzy.
I'm now going to lay down.
Roger |
User
User
Ooooh, I love nostalgia and Chris, your link to the discussion in 2019 helped straighten things out in my head.
As I see it now it was my wife and I, Lyn and her other half, Ray on his tod and Ross (Lyn, please jump in here if I've still got it wrong).
Even though we were so few it was bloody good fun and a pity more of these smaller gatherings never really took off, other than Newark which did become popular and never got overwhelming with numbers like the Mill on the Soar.
So, after all this we are still none the wiser as to who had the orchi wotsit and perhaps we never shall. Perhaps I should have it done just so I can record my experiences on here and become a font of knowledge on the subject.
Discussing it last night with my wife she pointed out one benefit that would come from be "deflowered" and that would be if I got involved in a punch up and someone gave me a kick in the groin. She said I could just stand there laughing at them and tellling them the have another go. I've no idea where she got the idea I'd hang around when a punch up looked likely, I'd be off as fast as my zimmer would allow. :)
Roger |
User
Thanks Chris - happy memories but definitely all men present still had their testicles. I also note that as well as Ross apparently posting from beyond the grave in 2019, we had Murf dead & buried but happily, both are still alive & kicking ... logged into the forum 3 days ago 🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Just a an update on the matter of a PIRADS 4 being discovered during an MRI carried out this January.
As the PSA blood test results failed to materialise (lost internally according to the Uro's secretary) from the test carried out at the time of the MRI, I had my GP arrange for one to be done locally and was a little shocked to see that it had risen to 2.3 from 1.9 (Oct 2021), so a rise of .4 in 22 weeks. I suppose my thinking has been based on the PIRADS 4 lesion possibly being something other than my PCa progressing and hence the shock at seeing my belief bubble being burst.
Before I take the decision to go with the Uro's suggestion that I have a TP biopsy, I'm going to request that he arranges for me to have another MRI but this time a multiparametric MRI. I was not happy to have a bog standard MRI back in January and felt that any imaging obtained from it could not be compared with the previous two MRIs which were both multiparametric and showed no lesions of significance.
I have arranged with my GP for another PSA blood test to be carried out in a months time and with this result and hopefully by then the result from a multiparametric MRI, I shall be better placed to make a decision on the need for a biopsy.
Watch this space.
Keep well and safe all of you.
Roger |
User
Roger, hope all turns out ok for you. As age increases, now 76, my head/body turns more to if need be whatever path your body will find easiest to take choose that one.
Choose well and keep as good as you can
Thanks all for the memory trip and pleased to read of those surviving.
Ray
User
Thanks Ray, the path my body is taking seems to be pretty much as expected and as long as I can keep on seeing around the bends before I see the end, I'm a happy bunny.
Take care and keep safe.
Roger
Roger |
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Latest PSA has seen a drop to 2.1, a drop of .2 in a month, so what to do now that the upward trend has slipped back!
I'm still of the opinion that the PIRAD 4 result from the MRI at the beginning of the year may be flawed, so what to do now I ask myself.
I'm tempted to continue on AS for the next 6 months and see if I can wangle a multiparametric MRI in the coming months.
Keep safe people and enjoy the summer.
Roger |
User
Any drop in psa is positive I would also be asking for another MRI scan 👍
User
During the consultation with my Uro last week I requested that I have another MRI but multiparametric rather than the basic one.
He asked why and I explained that the mpMRI would be more precise, to which he said the latest basic MRIs were as good as the mpMRIs and would not consider scheduling one for me.
I asked about the PIRAD 4 lesion that had showed on the MRI image and in context with my stable MRI what was his considered opinion and he said nothing to worry about and he'd see me in a years time.
I then reminded him that he'd arranged for me to have a TP biopsy and why if there was nothing to worry about did he feel I needed a biopsy. "Oh, did I", was his response!
Needless to say I'm slowly losing confidence in the man and shall be looking at a referral to another Uro.
Roger |
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Par for the course unfortunately!