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

Notification

Error

Post Surgery heightened PSA

Email this conversation Print this conversation
User
Posted 03 Nov 2023 at 21:39

Good evening…….

This has been a difficult day to say the least so I’ll provide a little bit of background information to where my current situation is……..

I’m  63 years of age and a fit active guy who’s looked after himself generally speaking……. Earlier this year I was fortunately persuaded to take part in a men’s health check whilst I was holidaying abroad in Thailand, the resultant PSA level of ‘9’ encouraged me to do more exploratory investigations whilst I was there……. So I had a rectal examination and a course of antibiotics should the heightened level be due to a urinary tract infection.
Upon my return for the results two weeks later I was informed that my PSA level had risen to 13….. As I was due to return home in early April I sought out an appointment with my GP down here in East Sussex. I explained the findings of my tests to date and to confirm this I was given another PSA test which showed a PSA level of 9………… An instant referral to the urology department at the Hospital was duly arranged.

I must say the speed with which I went through firstly the MRI Scan then the biopsy was most impressive. So much so that on July 16th I was met by the surgical team who informed me that I had Prostate Cancer…….. Locally Advanced Gleason 4 + 3…….Eleven (11) of the 21 samples were cancerous, T3a………and the offer of a robotic radical prostate surgery was made, I was also offered and accepted a meeting with the oncologist who also offered a mixture of radioactive treatments……… They gave me two weeks to consider all my options and I then chose the surgery which was conducted on the 19th August……A tremendous turn around time of five weeks for which I’m eternally grateful for..…… To my mind I have healed well, little or no incontinence but my erections  have yet to reappear although I’m hopeful. There have to date been no negative effects of my surgery so this led me to my 10 week follow up appointment this afternoon.

My appointment was at 15.30 hours this afternoon at the hospital, I expected to at least see some of the team that I had got used to seeing, sadly not. A junior doctor who I had never had any dealings with broke the news that my results were “Mixed”………. My PSA was 0.39 which raises some cause for concern. It was explained to me that during my surgery where I was spared any removal of nerve ends and collateral removal of lymph nodes there could have been some rogue cells that had broken through the prostate capsule and therefore I would now be referred to the oncology team and a PET Scan at the Hospital will be made.

Whilst trying to determine what are the likely outcomes for me and what can I expect in the timings of all this and what likely follow up treatment will I be required to undertake and for how long he was not in a position to answer or wish to speculate about, he clearly just wanted me referred out from the surgical team to the oncology team asap……… In my humble opinion this was a less than professional and caring response to my predicament, I really got the feeling this was rushed and uncomfortable to say the least.

My questions are; What should I expect going forward? What are the likely time scales for a PET Scan? What happens after that? If there are rogue cells what will be the time scales and method of dealing with them? These are all questions I asked this afternoon that this Doctor was unable to answer. Thanks for taking the time to read this, thank heavens for the support on here and would anyone recommend me speaking to one of the nurses here for some reassurance which I sadly didn’t get much of today.

Jimmy

Edited by moderator 03 Nov 2023 at 23:27  | Reason: Not specified

User
Posted 04 Nov 2023 at 11:16

Thanks Chris……… When I was originally diagnosed with PC I did read your thread and your fascinating journey, I will refresh my memory by going through it again…….. I particularly admired your belligerent approach in searching for answers at every step of your journey……. Credit to you.

Time for me to get myself into full battle mode and take on another challenge.

Jimmy

User
Posted 04 Nov 2023 at 12:23

Thanks Dave……… Also a big thanks to all who have contributed so far…….. I’ve already got proactive and joined my local PC Support Group down here in Eastbourne where they have quarterly meetings the next one being in mid December, also I will speak to the wonderful nurses come Monday to ask a few questions that are nagging away at me…….. I’m also going to deliberately avoid the multitude of videos on YouTube and other social media sites which would leave my head spinning……… Most importantly I know this journey is not a sprint but also I’m confident there is light at the end of what appears to be a dark tunnel at the moment.

It will be my intention to post updates regarding my ongoing treatment………. Once again thanks to all for indulging me.

 

User
Posted 03 Nov 2023 at 21:39

Good evening…….

This has been a difficult day to say the least so I’ll provide a little bit of background information to where my current situation is……..

I’m  63 years of age and a fit active guy who’s looked after himself generally speaking……. Earlier this year I was fortunately persuaded to take part in a men’s health check whilst I was holidaying abroad in Thailand, the resultant PSA level of ‘9’ encouraged me to do more exploratory investigations whilst I was there……. So I had a rectal examination and a course of antibiotics should the heightened level be due to a urinary tract infection.
Upon my return for the results two weeks later I was informed that my PSA level had risen to 13….. As I was due to return home in early April I sought out an appointment with my GP down here in East Sussex. I explained the findings of my tests to date and to confirm this I was given another PSA test which showed a PSA level of 9………… An instant referral to the urology department at the Hospital was duly arranged.

I must say the speed with which I went through firstly the MRI Scan then the biopsy was most impressive. So much so that on July 16th I was met by the surgical team who informed me that I had Prostate Cancer…….. Locally Advanced Gleason 4 + 3…….Eleven (11) of the 21 samples were cancerous, T3a………and the offer of a robotic radical prostate surgery was made, I was also offered and accepted a meeting with the oncologist who also offered a mixture of radioactive treatments……… They gave me two weeks to consider all my options and I then chose the surgery which was conducted on the 19th August……A tremendous turn around time of five weeks for which I’m eternally grateful for..…… To my mind I have healed well, little or no incontinence but my erections  have yet to reappear although I’m hopeful. There have to date been no negative effects of my surgery so this led me to my 10 week follow up appointment this afternoon.

My appointment was at 15.30 hours this afternoon at the hospital, I expected to at least see some of the team that I had got used to seeing, sadly not. A junior doctor who I had never had any dealings with broke the news that my results were “Mixed”………. My PSA was 0.39 which raises some cause for concern. It was explained to me that during my surgery where I was spared any removal of nerve ends and collateral removal of lymph nodes there could have been some rogue cells that had broken through the prostate capsule and therefore I would now be referred to the oncology team and a PET Scan at the Hospital will be made.

Whilst trying to determine what are the likely outcomes for me and what can I expect in the timings of all this and what likely follow up treatment will I be required to undertake and for how long he was not in a position to answer or wish to speculate about, he clearly just wanted me referred out from the surgical team to the oncology team asap……… In my humble opinion this was a less than professional and caring response to my predicament, I really got the feeling this was rushed and uncomfortable to say the least.

My questions are; What should I expect going forward? What are the likely time scales for a PET Scan? What happens after that? If there are rogue cells what will be the time scales and method of dealing with them? These are all questions I asked this afternoon that this Doctor was unable to answer. Thanks for taking the time to read this, thank heavens for the support on here and would anyone recommend me speaking to one of the nurses here for some reassurance which I sadly didn’t get much of today.

Jimmy

Edited by moderator 03 Nov 2023 at 23:27  | Reason: Not specified

User
Posted 04 Nov 2023 at 00:21

Sorry, that's not what you want to hear after a treatment with curative intent.

You didn't mention margins, so I assume they didn't tell you there were positive margins in the histology report? That PSA level means they didn't remove all the cancer. It could be that some had got in to the prostate bed or lymph nodes before the prostate was removed, or (less likely) there's some somewhere else in your body. Hopefully, the PET scan will show where it is.

If it's in the prostate bed and/or local lymph nodes, they'll offer you radiotherapy and probably hormone therapy too, and this is also a treatment with curative intent. If it's more distant, it will depend where it is, but they might offer radiotherapy on it providing it's only one or two spots.

There can be a wait for a PET scan. PSMA PET scans have 7 week waiting lists in some areas. What can help is if you are able to get there at short notice, let them know so they can offer you a cancellation slot.

User
Posted 04 Nov 2023 at 00:41

Patrick, Andy sums up the possibilities quite well. One thing to be aware of,  the PSMA scans are sometimes cancelled on the day due to production problems with the tracer,my original PSMA scan was rescheduled for two weeks later. Your PSA level is only just above the lower threshold some hospitals use, a few weeks delay may give the scan a better chance of picking something up.

Definitely ring the support nurses on this site, they are absolutely brilliant, unfortunately they don't work the weekends. 

Plenty of tools still in the box.

Thanks Chris 

User
Posted 04 Nov 2023 at 09:05

Hi Jimmy,

Sorry to hear about your  results, I can imagine it’s difficult for you after going through major surgery only to discover that they may not have got it all. I suppose that’s the risk you take when T3a, and I hope that was explained to you…it sounds like it would have been as you seem to have had very good care since being diagnosed. In Scotland they won’t do prostatectomy if there’s any risk of spread. I’m T3B and it was ruled out by the MDT without any discussion with me, much to my disappointment.

However there are many treatments available to mop up anything that’s been left behind, yes it’s a ‘pain in the prostate’, but you’ll still be on a curative path so that’s good.

Good luck with any next steps.

Derek

User
Posted 04 Nov 2023 at 09:46

Thanks Guys…….

It’s a comfort to be on this site to gain valuable information for my way forward……. I will speak with the support nurses……. Also it’s my intention to join my local “Prostate Cancer Support Group”……. My battle now is to learn as much as I can about the future path and what the treatment plan will be…….. Once I’ve got a clear timeline and detailed schedule and dates for the treatment I’ll be able to deal with it a lot better, it’s the not knowing and waiting that plays on you.

The good news is that I’ve healed well and I feel remarkably good ten weeks out from surgery……. Also I’ve been given the Green light to resume my gym work commencing next week which will give me something positive to work towards………. Selfishly I was looking at spending the month of February out in the sunshine of Thailand, would I be right in saying that’s a no, no and realistically don’t make future travel plans for the immediate future?

I had a thousand questions to ask yesterday which weren’t dealt with which has led to my frustrations……. I guess the next professional I sit down with will get the equivalent of the ‘Spanish Inquisition’…….. Got to keep a sense of humour.

Enjoy your weekends

Jimmy

User
Posted 04 Nov 2023 at 10:49
Maybe read my profile. Very similar post-op results as you. But I’m still here aged 56 , eight years after surgery. And I tailored my own treatments based on QOL. I rejected SRT as I was rightfully doubtful it would be curative. I was one of the first in Southampton to have Choline and Gallium PET scans. Good luck with your decisions
User
Posted 04 Nov 2023 at 11:50

The cancer is no reason not to have the holiday in Thailand in February. However the timescale for treatment might make it troublesome. I would guess by the time you have had all your scans, and some of these will be cancelled for technical reasons, it will be mid December at the earliest before you know what's happening, or more realistically mid January. Once they know your diagnosis, then they can schedule treatment. I would wait until then before mentioning your holiday, it may fit in perfectly as they may not have an RT machine free until March, or they may say they want you on HT for a few months, which would not stop your holiday. If you mention your holiday plans now, they may put your diagnosis on the back burner, any excuse to get queues and waiting list down which they can blame on the patient is a win for the NHS.

To get holiday insurance at a reasonable price you will have to exclude cancer. It will not advance fast so that is not a problem. Your recovery from surgery will also not be covered, but that is going fine and will be even better in three months.

Dave

User
Posted 24 Nov 2023 at 19:03
An update regarding my ongoing journey……… Firstly I took the sound advice that was given to me on this wonderful community forum. I spoke with a lovely Prostate Cancer UK nurse on the Monday morning following on from my diagnosis the previous Friday afternoon……….. What I can say is that their unhurried, knowledgeable experience and expertise really does go somewhat in alleviating you of the stress and worry…….. A completely unhurried response to all questions asked, it really did help me and give me increased confidence.

Following on from this I decided to get proactive and do some chasing up calls regarding my future treatments and appointments, I also expedited this by speaking with my GP albeit on a telephone appointment………. He confirmed that the pathology result was; Clear margins, all nerve endings spared, T3a, my Gleason score remained at 4+3, but of course further work needs to be done regarding my PSA post surgery which is 0.39…………Good news is that with my persistence I have my PET Scan scheduled for next Thursday 30th November at Maidstone Hospital which they recommended instead of Brighton……… Also I have an appointment at the Conquest Hospital in Hastings for 6th January with the Urology Department.

Further good news is that my continence is back up to 100% and I no longer require the pads, however my days of having copious pints of beer are a distant past but I’m still able to enjoy a few nevertheless………. My GP has prescribed tablets to assist with my ongoing erectile problems which hopefully will improve………. The physio keeps up four weekly telephone calls with me…….. I’ve also decided to attend next month the local Prostate Cancer Support Group meeting at Eastbourne Hospital………

Now that I’ve got a timeline to work to I’m finding it easier to manage the uncertainty…….. Probably now just wishing I could move the clock forward………… The greater unknown is of course what hormone treatment if any will I have and for how long and of course how many radiation procedures will I have to endure……… Hopefully in January this will be answered.

I will endeavour to provide updates.

User
Posted 08 Dec 2023 at 18:32

Time for an update……..My PET Scan which was scheduled for Thursday 30th November at Maidstone Hospital, Kent was cancelled on the morning as I was making my way there, disappointing to say the least,  but at least I had courtesy of this forum of being fore warned about this possibility. The positive news was that my appointment was to be rescheduled for Wednesday this week the 6th December………. So another journey up to Maidstone Hospital and a PET Scan administered and operated by ‘Alliance Health’, a very impressive set up with empathetic and caring staff, the whole procedure was bang on two hours. To my surprise they said the results would be with my consultant within days.

Imagine my surprise then when this morning I receive a call from my Oncologists secretary saying that the Consultant would like to have a ‘Telephone Appointment’ with me today, naturally I agreed.

The results of the PET Scan completed two days previously were with her, she informed me that there is no trace of cancerous rogue cells located, however with my PSA level of 0.39 this is somewhat of a conundrum. To cut a long story short we have agreed for me to have a PSA Blood Test and should my level remain consistent or even fall for us to do three monthly PSA tests keeping a watching brief……..Should my PSA show an increase I will be put on Radioactive treatment to cover more than likely both the Prostate Bed and Lymph Nodes.

I was given the opportunity to go straight for the immediate Salvage Radiotherapy but I really want it to be more definitive before I take this step…….The use of Hormones may not be required but I would have to undertake four weeks of radiation treatment……….At least now I can take this journey on confident in the knowledge that I have options.

Huge thank you to all on here and please feel free to offer your indisputable words of wisdom which has helped me so much on this journey.

I’m also going to attend my local ‘Prostate Cancer Support Group’ meeting next week, knowledge is power and all that………. Also I’m back in the gym and really enjoying that which is helping me on this torturous journey………… Great weekend to all.

 

 

User
Posted 08 Dec 2023 at 23:39

Thanks Adie I’m doing my best……..Had a few wonderful ‘Craft Beers’ tonight in my local brewery ( Three Legs)……… One thing that this predicament does make you do is consider each and every day and make sure you enjoy life, as a good friend said to me the other day “There are no shops or car dealerships in the afterlife” ……… Got to spend more of that ‘Government Pension’

Thanks guys……. Glass half full, as my Oncologist said to me today “You’ll probably die with it but not from it”

 

Show Most Thanked Posts
User
Posted 04 Nov 2023 at 00:21

Sorry, that's not what you want to hear after a treatment with curative intent.

You didn't mention margins, so I assume they didn't tell you there were positive margins in the histology report? That PSA level means they didn't remove all the cancer. It could be that some had got in to the prostate bed or lymph nodes before the prostate was removed, or (less likely) there's some somewhere else in your body. Hopefully, the PET scan will show where it is.

If it's in the prostate bed and/or local lymph nodes, they'll offer you radiotherapy and probably hormone therapy too, and this is also a treatment with curative intent. If it's more distant, it will depend where it is, but they might offer radiotherapy on it providing it's only one or two spots.

There can be a wait for a PET scan. PSMA PET scans have 7 week waiting lists in some areas. What can help is if you are able to get there at short notice, let them know so they can offer you a cancellation slot.

User
Posted 04 Nov 2023 at 00:41

Patrick, Andy sums up the possibilities quite well. One thing to be aware of,  the PSMA scans are sometimes cancelled on the day due to production problems with the tracer,my original PSMA scan was rescheduled for two weeks later. Your PSA level is only just above the lower threshold some hospitals use, a few weeks delay may give the scan a better chance of picking something up.

Definitely ring the support nurses on this site, they are absolutely brilliant, unfortunately they don't work the weekends. 

Plenty of tools still in the box.

Thanks Chris 

User
Posted 04 Nov 2023 at 09:05

Hi Jimmy,

Sorry to hear about your  results, I can imagine it’s difficult for you after going through major surgery only to discover that they may not have got it all. I suppose that’s the risk you take when T3a, and I hope that was explained to you…it sounds like it would have been as you seem to have had very good care since being diagnosed. In Scotland they won’t do prostatectomy if there’s any risk of spread. I’m T3B and it was ruled out by the MDT without any discussion with me, much to my disappointment.

However there are many treatments available to mop up anything that’s been left behind, yes it’s a ‘pain in the prostate’, but you’ll still be on a curative path so that’s good.

Good luck with any next steps.

Derek

User
Posted 04 Nov 2023 at 09:46

Thanks Guys…….

It’s a comfort to be on this site to gain valuable information for my way forward……. I will speak with the support nurses……. Also it’s my intention to join my local “Prostate Cancer Support Group”……. My battle now is to learn as much as I can about the future path and what the treatment plan will be…….. Once I’ve got a clear timeline and detailed schedule and dates for the treatment I’ll be able to deal with it a lot better, it’s the not knowing and waiting that plays on you.

The good news is that I’ve healed well and I feel remarkably good ten weeks out from surgery……. Also I’ve been given the Green light to resume my gym work commencing next week which will give me something positive to work towards………. Selfishly I was looking at spending the month of February out in the sunshine of Thailand, would I be right in saying that’s a no, no and realistically don’t make future travel plans for the immediate future?

I had a thousand questions to ask yesterday which weren’t dealt with which has led to my frustrations……. I guess the next professional I sit down with will get the equivalent of the ‘Spanish Inquisition’…….. Got to keep a sense of humour.

Enjoy your weekends

Jimmy

User
Posted 04 Nov 2023 at 10:49
Maybe read my profile. Very similar post-op results as you. But I’m still here aged 56 , eight years after surgery. And I tailored my own treatments based on QOL. I rejected SRT as I was rightfully doubtful it would be curative. I was one of the first in Southampton to have Choline and Gallium PET scans. Good luck with your decisions
User
Posted 04 Nov 2023 at 11:16

Thanks Chris……… When I was originally diagnosed with PC I did read your thread and your fascinating journey, I will refresh my memory by going through it again…….. I particularly admired your belligerent approach in searching for answers at every step of your journey……. Credit to you.

Time for me to get myself into full battle mode and take on another challenge.

Jimmy

User
Posted 04 Nov 2023 at 11:50

The cancer is no reason not to have the holiday in Thailand in February. However the timescale for treatment might make it troublesome. I would guess by the time you have had all your scans, and some of these will be cancelled for technical reasons, it will be mid December at the earliest before you know what's happening, or more realistically mid January. Once they know your diagnosis, then they can schedule treatment. I would wait until then before mentioning your holiday, it may fit in perfectly as they may not have an RT machine free until March, or they may say they want you on HT for a few months, which would not stop your holiday. If you mention your holiday plans now, they may put your diagnosis on the back burner, any excuse to get queues and waiting list down which they can blame on the patient is a win for the NHS.

To get holiday insurance at a reasonable price you will have to exclude cancer. It will not advance fast so that is not a problem. Your recovery from surgery will also not be covered, but that is going fine and will be even better in three months.

Dave

User
Posted 04 Nov 2023 at 12:23

Thanks Dave……… Also a big thanks to all who have contributed so far…….. I’ve already got proactive and joined my local PC Support Group down here in Eastbourne where they have quarterly meetings the next one being in mid December, also I will speak to the wonderful nurses come Monday to ask a few questions that are nagging away at me…….. I’m also going to deliberately avoid the multitude of videos on YouTube and other social media sites which would leave my head spinning……… Most importantly I know this journey is not a sprint but also I’m confident there is light at the end of what appears to be a dark tunnel at the moment.

It will be my intention to post updates regarding my ongoing treatment………. Once again thanks to all for indulging me.

 

User
Posted 24 Nov 2023 at 19:03
An update regarding my ongoing journey……… Firstly I took the sound advice that was given to me on this wonderful community forum. I spoke with a lovely Prostate Cancer UK nurse on the Monday morning following on from my diagnosis the previous Friday afternoon……….. What I can say is that their unhurried, knowledgeable experience and expertise really does go somewhat in alleviating you of the stress and worry…….. A completely unhurried response to all questions asked, it really did help me and give me increased confidence.

Following on from this I decided to get proactive and do some chasing up calls regarding my future treatments and appointments, I also expedited this by speaking with my GP albeit on a telephone appointment………. He confirmed that the pathology result was; Clear margins, all nerve endings spared, T3a, my Gleason score remained at 4+3, but of course further work needs to be done regarding my PSA post surgery which is 0.39…………Good news is that with my persistence I have my PET Scan scheduled for next Thursday 30th November at Maidstone Hospital which they recommended instead of Brighton……… Also I have an appointment at the Conquest Hospital in Hastings for 6th January with the Urology Department.

Further good news is that my continence is back up to 100% and I no longer require the pads, however my days of having copious pints of beer are a distant past but I’m still able to enjoy a few nevertheless………. My GP has prescribed tablets to assist with my ongoing erectile problems which hopefully will improve………. The physio keeps up four weekly telephone calls with me…….. I’ve also decided to attend next month the local Prostate Cancer Support Group meeting at Eastbourne Hospital………

Now that I’ve got a timeline to work to I’m finding it easier to manage the uncertainty…….. Probably now just wishing I could move the clock forward………… The greater unknown is of course what hormone treatment if any will I have and for how long and of course how many radiation procedures will I have to endure……… Hopefully in January this will be answered.

I will endeavour to provide updates.

User
Posted 24 Nov 2023 at 19:35
Great update Patrick. Stay proactive ok. Good that you pushed 👍💪
User
Posted 08 Dec 2023 at 18:32

Time for an update……..My PET Scan which was scheduled for Thursday 30th November at Maidstone Hospital, Kent was cancelled on the morning as I was making my way there, disappointing to say the least,  but at least I had courtesy of this forum of being fore warned about this possibility. The positive news was that my appointment was to be rescheduled for Wednesday this week the 6th December………. So another journey up to Maidstone Hospital and a PET Scan administered and operated by ‘Alliance Health’, a very impressive set up with empathetic and caring staff, the whole procedure was bang on two hours. To my surprise they said the results would be with my consultant within days.

Imagine my surprise then when this morning I receive a call from my Oncologists secretary saying that the Consultant would like to have a ‘Telephone Appointment’ with me today, naturally I agreed.

The results of the PET Scan completed two days previously were with her, she informed me that there is no trace of cancerous rogue cells located, however with my PSA level of 0.39 this is somewhat of a conundrum. To cut a long story short we have agreed for me to have a PSA Blood Test and should my level remain consistent or even fall for us to do three monthly PSA tests keeping a watching brief……..Should my PSA show an increase I will be put on Radioactive treatment to cover more than likely both the Prostate Bed and Lymph Nodes.

I was given the opportunity to go straight for the immediate Salvage Radiotherapy but I really want it to be more definitive before I take this step…….The use of Hormones may not be required but I would have to undertake four weeks of radiation treatment……….At least now I can take this journey on confident in the knowledge that I have options.

Huge thank you to all on here and please feel free to offer your indisputable words of wisdom which has helped me so much on this journey.

I’m also going to attend my local ‘Prostate Cancer Support Group’ meeting next week, knowledge is power and all that………. Also I’m back in the gym and really enjoying that which is helping me on this torturous journey………… Great weekend to all.

 

 

User
Posted 08 Dec 2023 at 18:57

Nice one Jimmy👍

I  was wondering how you were doing.

T3a here as well, let's hope we stay that way.

As for you not being able to drink  copious amounts of beer, don't give up all those years of training, you'll soon get up to pre op levels. I managed five pints of lager yesterday. But the missus had to drive like she was on a blue light run to get me home just in time. I thought I might have to pee in the driveway.😁

Best of luck mate, we've both got to do our best to get the most out of our hard earned pensions.

Adrian.

Edited by member 08 Dec 2023 at 19:34  | Reason: Not specified

User
Posted 08 Dec 2023 at 23:39

Thanks Adie I’m doing my best……..Had a few wonderful ‘Craft Beers’ tonight in my local brewery ( Three Legs)……… One thing that this predicament does make you do is consider each and every day and make sure you enjoy life, as a good friend said to me the other day “There are no shops or car dealerships in the afterlife” ……… Got to spend more of that ‘Government Pension’

Thanks guys……. Glass half full, as my Oncologist said to me today “You’ll probably die with it but not from it”

 

User
Posted 09 Dec 2023 at 07:56

Hi Jimmy,
You certainly have the right attitude to get through this ‘journey’ (ordeal more like it!).
I’m not a beer drinker, my tipple is gin and malt whisky but I certainly agree with living every day to the full. Whereas before I would put off things until ‘tomorrow’, nowadays I just get on with it, much to my wife’s surprise, and if I want to treat myself to something I just do it, much to my wife’s annoyance(at times 😉). This disease really does make you take stock of your life and I’ve changed in many ways, mostly for the better surprisingly enough. I still get the ‘why me?’ anger at times but then I just kick myself in the arse(which is difficult I can tell you with my aching joints!🤣🤣🤣), and I’m soon over it.

My Local Cancer Support Group(Maggies) means so much to me and has helped me so much this past year, and I have made so many good friends from it. I was out for lunch with one of them yesterday and ended up getting thrown out as we’d overstayed our lunch time!

I enjoy the gym as well, and I’ve found walking also good for my knees. I also really enjoy my e-bike, which was a great investment.

All the best going forward,

Derek

User
Posted 06 Jan 2024 at 11:23

Time for an update and as usual maybe some words of wisdom and advice from this wonderful community.

This morning I visited the Urology Department at my local health trust here in East Sussex for an appointment regarding my erectile functions post surgery which is now approaching 5 months……. Although the mind is willing and despite nerve saving surgery I’m still not able to rise to the occasion so to speak. To assist me with this I was offered the ‘Vacuum Pump’ or tablets ( Vardenafil 10mg) which I have chosen to try out……… Just wondering about the effectiveness of these?……… The Urologist Clinician was also of the opinion that it is still early days, so here’s hoping.

I also and rather more importantly in the list of priorities was given the result of my latest P.S.A test which I had the week before Christmas…………. There is a negligible rise from 0.39 to 0.41……… Consequently I was advised to keep a watchful waiting and have another blood test in a month or so to monitor my levels……. Of course the dichotomy is do I wait for the almost inevitable rise in P.S.A and then act accordingly after another PET Scan or do I take the leap now for ‘Salvage Treatment’ which would mean a blast of radiation within my prostate bed and adjacent Lymph Nodes to rid myself of what remains?………….

The Clinician was of the opinion to wait as my levels had raised just an almost negligible amount until there is more specific evidence to show where the Salvage treatment can be best directed.

So my conundrum is what to do?……….. On the one hand it was pointed out to me that my P.S.A results were more positive rather than negative……… But it’s like anything and I’ve come to learn that with Prostate Cancer it’s a war not a battle……… Thanks all for following my journey and I continue with today’s news to be positive rather than negative.

Kind Regards

User
Posted 06 Jan 2024 at 12:06

Originally Posted by: Online Community Member

I’ve come to learn that with Prostate Cancer it’s a war not a battle……… 

Hello mate,

What a brilliant analogy. I've often felt I've won a couple of battles but never feel sure that the war is won.

As you know I had RARP 10 months ago. My three x 3 monthly PSA results have been 0.02, 0.05 and 0.02. Apparently they'll consider further treatment at 0.2. I have another test at the end of this month, which I'm already dreading. Weirdly, I fear the possibility of recurrence far more than the initial diagnosis of prostate cancer.

As for the ED problem. I had non nerve sparing surgery. Tablets didn't work, Caverject didn't work. I convinced the ED to skip pumps and she persuaded my GP to prescribed Invicorp, which now works a treat. Gives at least an 80% stiffy, good enough for the job, and it lasts for at least a couple of hours which is longer than I can.

Adrian

Edited by member 06 Jan 2024 at 20:17  | Reason: Not specified

User
Posted 06 Jan 2024 at 12:21

Thanks Adie,

It appears to be a watching game for now……… When I spoke with my oncologist before Christmas the course of action would be to wait to see if my PSA rises above 0.5 and then take action……… Mine hasn’t really shifted at all and has stabilised……… The issue is “Am I deceiving myself”………. Indeed is it inevitable that I’ll have to go through ‘Salvage Treatment’ hence my use of a long drawn out war, maybe I should start making plans for the next battle………… Big lesson learned is that with Prostate Cancer it’s nearly always a waiting game………. For now I’m feeling healthy and my continence levels are excellent and I’m able to slowly increase the pleasure I get once a week from downing some magnificent’Craft Beers’……. So onwards and upwards………. I really appreciate the advice from you guys.

Kind Regards

User
Posted 06 Jan 2024 at 12:48
Patrick - give your higher than hoped for but stable PSA, I might ask the consultant whether this could be caused by cancer cells that have remained post surgery but are effectively dormant in that they are not growing.

In most cases (mine included) the post surgery PSA, if not remaining as undetectable, does seem to grow progressively over the 3 month repeat testing periods. Yours, as you say, is a bit of a conundrum.

User
Posted 06 Jan 2024 at 13:26

Originally Posted by: Online Community Member
Patrick - give your higher than hoped for but stable PSA, I might ask the consultant whether this could be caused by cancer cells that have remained post surgery but are effectively dormant in that they are not growing.

In most cases (mine included) the post surgery PSA, if not remaining as undetectable, does seem to grow progressively over the 3 month repeat testing periods. Yours, as you say, is a bit of a conundrum.

Not necessarily dormant cancer cells, these could be healthy non cancerous prostate cells, left behind and just generating a normal amount of healthy PSA. 

However assuming a healthy prostate can generate a PSA of 3.0 then 0.5 implies the surgeon left behind about 1/6th of a prostate, which does seem a lot to leave behind.

Please note this post is an exercise in logical reasoning and maths, not in any way an opinion on Patrick's prostate.

Dave

User
Posted 06 Jan 2024 at 16:33

Originally Posted by: Online Community Member

Please note this post is an exercise in logical reasoning and maths, not in any way an opinion on Patrick's prostate.

100%

User
Posted 06 Jan 2024 at 19:09

Patrick, my post op PSA was 0.04 ten times less than yours. Within 33 months it was 0.2 and following a rise to 0.27 I started salvage RT. I was refused a PSMA scan and my SRT was to the prostate bed only. My post SRT did drop for a while and 6 years after SRT at 1.8 a scan could find nothing in the prostate bed but did find a tumor in a lymph node that was treated and following another scan another tumor was found in another lymph node.

What did the nurse on this site say about your situation. My medical team said they would be criticised for letting my post op PSA go past 0.3 without giving additional treatment.

Thanks Chris 

 

Edited by member 06 Jan 2024 at 19:10  | Reason: Result corrected

 
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