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Coronavirus delays

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User
Posted 25 Mar 2020 at 07:45

Anyone else worrying about delayed treatment, and the consequences?


All appointments cancelled until further notice. Was due RP with DaVinci in May. Trying to remain rational. 


M & J

Mel

User
Posted 25 Mar 2020 at 12:40
Your worry is understandable. It is worth repeating, though, that in most cases prostate cancer is very slow to develop if it was caught at an early stage. I remember my lead practitioner nursing tellin me that a delay of 3 weeks was nothing. As she said, 'we could do nothing for 6 months to a year, and it would make no difference' Of course, each case is different, but yours do not seem to be very advanced. For advice, you should contact your oncologist / surgeon / advanced nurse practitioner. You could also call Prostate Cancer UK.
best wishes,
Hermit
User
Posted 28 Mar 2020 at 14:11

Hi Mike,


Sorry to hear, you are in this position also.


Unfortunately, the cancellations are not only due to pressure on beds. The assessments on approaches to treatment are done on assessment of overall risk. Any AGP (aerosol generating procedure) brings increased risk to those in the area of becoming infected. There is lots of literature available if you google AGP and Covid19.


Also, post surgery your body would be under stress which could compromise your own immunity. This whole situation has many unseen complications.


 

Edited by member 28 Mar 2020 at 14:21  | Reason: Not specified

Mel

User
Posted 29 Mar 2020 at 12:31

Hi Mel,


I really struggled after surgery, went back into hospital after a couple of days due to loss of blood! Needed a blood transfusion and ended up staying a further 3 nights.


The catheter was with me for 2 weeks and that was hard work.


I remember having to take painkillers for a number of weeks.


Was definitely off work for 6 weeks.


Girlfriend was amazing, she helped with catheter bag changes,medicine,food and even the bin collection! Haha


Any questions please feel free to ask.


Jeff

User
Posted 29 Mar 2020 at 13:27

I was diagnosed in April 2019 and waited for 6 months before the operation, my choice.


My dad and two of my uncles have had the operation and all are doing well. As a young man I knew it was going to be okay and the 6 months gave me the opportunity to know everything about the RP operation. This forum gives a great insight to many who have had the operation and their recovery after it.


Life goes on and i'm lucky to say this op didn't faze me at all.


I have 2 girls aged 17 & 15 so told them immediately and i'm not on any support group.

User
Posted 29 Mar 2020 at 13:30
Just to balance The1974’s response. I had RP in 2013. Discharged the day after. Didn’t need the painkillers as any discomfort was minimal (apart from if I sneezed). Catheter was an inconvenience but not too problematic (wouldn’t stand first in the queue for another one like).
I basically put my feet up for the duration of the recovery period.
I recall the worst part was the initial constipation as a result of the anaesthetic but that cleared with 3 days.
But we are all different and hopefully your OH will have a non problematic recovery once he’s had the op
User
Posted 25 Mar 2020 at 13:16

Thanks.  Yes I realise that it may well be safe but that doesn’t stop the mind games.  Though your reply is somewhat reassuring.  It is low risk but extensive and he is only 44.  Lots of people on here upgraded on pathological investigation too which doesn’t help with the worry.


Unfortunately, there is no contact with Oncologist possible. Doctors, Surgeons & Nurses are working in different areas to cover the pandemic.  Hubby is in touch with Prostate Cancer UK Nurse though.


Thank you for replying. 


M 

Mel

User
Posted 25 Mar 2020 at 21:13
There may be the option of starting HT just to halt it in its tracks until he can have the surgery

Bri
User
Posted 25 Mar 2020 at 21:42
I agree with Bri - I think I would also be asking whether he can have HT while waiting for the operation
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Mar 2020 at 13:39

Due an RP today (28th March) which was cancelled yesterday.  Seemingly NOT, as I first thought, because of demand for beds, but following guidance from some august body saying that the gas inflation used by the robot in Robot-assisted laparoscopic surgery can cause an aerosol which propagates virus particles.  Has anyone any further information?

User
Posted 28 Mar 2020 at 14:15

Hi Mike


I had my pre op assessment yesterday which was a bit surreal, when they rang in the week I asked if it was safe for me to go into the hospital at this time but assured me it was ok, so I went anyway. My hospital is in Cardiff where they carry out the Da Vinci and they were implying that they are trying to fit in as many procedures as possible before the hospital stops doing them. There was no mention of the gas causing any issues, but would they ? Not sure about your PC but mine was contained to the prostate at time of bone scan, my Gleason score was 4&3 a 7, and my psa was 13. I’m 53 and apart from PC am in pretty good health, but I have to honest I’m very worried about undergoing any surgery at the moment due to the hysteria being caused by covid 19. I’ve not been sleeping at all worrying, the indecision of whether to tell them I’d rather wait until we are through this troubling time, but of course no one knows when the operations will start again. 


Carl..

User
Posted 29 Mar 2020 at 11:59

Good morning Carlos53 and MK1977.


I had RP at Cardiff on the 1st October 2019 at 44 years of age.


Still suffering from slight incontinence.


Strong erections came back a couple of weeks ago with the help of Viagra!


Good luck to you both.

User
Posted 29 Mar 2020 at 12:51
Ok thank you. Fortunately, I am a Nurse (albeit for children). I am also a dab hand at putting the bins out too. So, I should at least have that bit covered! Ha.

My worry, is the emotional fall out of diagnosis & treatment vWe both went back to work same day as diagnosis, as we didn’t know what else to do really (and our children didn’t know at that point). It’s all very surreal. I think when we stop for surgery, the sledgehammer will hit.

Are you or Carlos53 a member of any local support groups?

Mel

User
Posted 29 Mar 2020 at 17:10

I’m worried for my hubby who is going in for TRUS on Wednesday.....🙏🏼🙏🏼 it’s not cancelled. He couldn’t have an MRI because of COVID. So sorry to hear about cancelled surgeries....such a worrying time 🌹

User
Posted 29 Mar 2020 at 19:29
Mike, I do hope so. I suspect that it is more than just the worry over AGPs. Our Cons advised that the urology ward in the local hospital has been converted for other use at present. Best of luck!

Mel

User
Posted 29 Mar 2020 at 19:40

Hi Carl,


We're similar in that my Gleason is also 4+3, though I have a slightly lower PSA than you.  I'm Stage T3 where cancer is starting to break out of the prostate capsule.  Following major disappointment at my op being cancelled  less than 24 hours before admission, I'm coming round to the view that maybe it's best, on a risk basis.  I'm told that, generally speaking, PCa is a slow growing one (I'm NOT any sort of medical practitioner) so an extra couple of months before surgery shouldn't make too much difference.  You and I may well have had it some while before diagnosis.  You say your hospital didn't mention the aerosol problem - I only found out last Friday, 27 March, and it seems to have been very recent new guidance.


This whole PCa business is nasty, threatening and unpleasant; the treatment is uncomfortable to say the least.  No one likes one's equipment interfered with, and it goes to the heart of one's manhood and virility.  However, as many have told me, say 12 months down the line one can be well-recovered, living a full and happy life and even enjoying an erection again.  I'm sure your wife wants to support you, rather than feeling it's something you are putting her through.  I wish you well.

User
Posted 29 Mar 2020 at 19:46

Lexi26, best of luck for Wednesday. As Lyn said they will know the area they need to concentrate on.


It took 2 weeks and 2 days for the TRUS results to come back. May be less now with the pathology labs being a bit quieter due to CV19.  There seems to be a few wives on here, as well as the gents. It’s a nice place to talk without having to talk if that makes sense! :) 

Edited by member 29 Mar 2020 at 20:02  | Reason: Not specified

Mel

User
Posted 29 Mar 2020 at 22:45

Originally Posted by: Online Community Member


Lexi26, best of luck for Wednesday. As Lyn said they will know the area they need to concentrate on.


It took 2 weeks and 2 days for the TRUS results to come back. May be less now with the pathology labs being a bit quieter due to CV19.  There seems to be a few wives on here, as well as the gents. It’s a nice place to talk without having to talk if that makes sense! :) 



The CMO of Leeds THT was on TV on Friday - their pathology labs are inundated with Coronavirus sample testing - big machines that can test hundreds of samples each day 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Mar 2020 at 02:44

I think it may be worth pushing for hormone treatment if there is a delay in operating. This will halt the cancer spreading out of the prostate. My husband had a delay in the operation and we believe that hormone treatment would have kept the cancer within the prostate.  

User
Posted 31 Mar 2020 at 15:37

I totally understand your reservations. Possible exposure during or even post op is worrying.  Can they give you info on hospital set up & whether staff have only been working ‘cold’. Not with patients suspected or confirmed as CV19? 

Have you discussed nomograms with your Consultant?  This is what we were due to do last wk.  Could they guide you on what delaying would mean for you personally, to help you make an informed choice? 


 

Mel

User
Posted 31 Mar 2020 at 20:51

Hi Carl,  Thanks for your private message.  I'm not allowed to send private messages myself yet as I'm too new a member.  Apparently this will change when I've made more forum comments.  However, the answer is, he hasn't phoned.  I was promised he would ring me on Monday, but nothing heard then or today.  I'm trying to rationalise it's because he has more pressing cases.

User
Posted 31 Mar 2020 at 22:46

Sorry to hear you’ve not been contacted, if it’s any conciliation I’m in limbo too, I’ve heard nothing from any of the PC team. I’m sure they are extremely busy but it does make me feel vulnerable and forgotten almost like we are not worthy because of this virus. The uncertainty is driving round the bend as I’m sure it is for all the guys waiting for surgery or treatment


 


Stay strong, stay safe... 

User
Posted 05 Apr 2020 at 13:26

Consultants would love more time to spend with patients, but that's just not available (even in normal times). Appointments (at least in a couple of hospitals I know well) are 15 mins before your main treatment, and 10 mins after your main treatment. That includes the dictation time to update your notes and write your GP letter.


I was lucky in that my diagnosis hospital had a couple of urology CNS (Macmillan nurses) who could spend time with patients, but now that I'm involved with supporting more patients and at more hospitals, I'm aware there's a massive shortage of urology CNS, so that support isn't available to many patients. (And in this coronavirus era, many CNS's have been moved back onto coronavirus wards, as they will mostly have done ward work in the past before specialising).


A couple of consultants picked up on me being what they call an expert patient, and asked me to lead a support group session. I picked one of the topics which I had researched very well for myself, because no one told me anything about it, Surviving Hormone Therapy. This went so well, they've asked me to do it again for newer patients coming on to hormone therapy, and I was just starting to run them every 2 months when coronavirus reared its ugly head. This gives patients a whole afternoon to discuss the topic. I'm really pleased to be able to contribute back, and as this developed into something more than just a single support group session, I got access to consultants so I can ask questions and get them to review my materials. I'm hoping to get back into this after the lockdowns. (I'm going to test it out as a Zoom session for one of the local support groups.)


I know of prostatectomy classes run by some hospitals so do ask if there's one at yours. My hospital did a radiotherapy class, but didn't previously have anything for hormone therapy. I know more hospitals are now looking at running hormone therapy classes (or were, before coronavirus).

User
Posted 05 Apr 2020 at 18:16

Hi Mel 


my husband Tim was diagnosed beginning of March at present on HT no op till August September worrying times due to this virus, and not much feedback either just awaiting an appointment for qa Portsmouth just wish virus would go away 


take care 


Tracey 

User
Posted 02 May 2020 at 11:51

Hi Mel,


I hope you are well and keeping safe.


It was exactly 7 months yesterday when I had RP and recovery is going well.


I suppose the two main factors which we worry about are ED and Incontinence (which was the case for me).


Viagra now gives me an excellent erection and performs best an hour before sex. I believe it's best not to exceed 2 tablets in one week and works better on an empty stomach.


Unfortunately i'm still suffering from Incontinence and changing 2/3 light (tena 2) pads per day. It's fine when sitting but leaking when standing and on the move.


I'm doing PFE in the morning but failing to keep it up during the course of the day!


Jeff

User
Posted 02 May 2020 at 13:01

Looking at the forum I see incontinence varies from man to man, some men are dry instantly when the catheter is removed. I required man nappies/pants from day one as i had no control over my bladder, i gushed everytime i stood up and this continued for a few weeks.


After time i was able to hold my bladder and getting to the toilet, once again this takes time to achieve. It was very hard in the beginning because whilst travelling on the motorway i almost needed to stop at each service station!


As months past i wore Depend pants but also inserted a pad which made changing/disposal much easier rather than having to take off trousers/jeans everytime.


I also tried Conveen sheaths for a few weeks but this doesn't help in training the bladder, it was really only useful for long trips on the road.


Ask your council for incontinence refuse bags otherwise your bin will be full in no time.


My girls have been fab throughout, very concerned at the beginning but now totally normal, to the point where they forgotten i had the op. Apart from the scars, the incontinence and ED i feel and look 100%.

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User
Posted 25 Mar 2020 at 12:40
Your worry is understandable. It is worth repeating, though, that in most cases prostate cancer is very slow to develop if it was caught at an early stage. I remember my lead practitioner nursing tellin me that a delay of 3 weeks was nothing. As she said, 'we could do nothing for 6 months to a year, and it would make no difference' Of course, each case is different, but yours do not seem to be very advanced. For advice, you should contact your oncologist / surgeon / advanced nurse practitioner. You could also call Prostate Cancer UK.
best wishes,
Hermit
User
Posted 25 Mar 2020 at 13:16

Thanks.  Yes I realise that it may well be safe but that doesn’t stop the mind games.  Though your reply is somewhat reassuring.  It is low risk but extensive and he is only 44.  Lots of people on here upgraded on pathological investigation too which doesn’t help with the worry.


Unfortunately, there is no contact with Oncologist possible. Doctors, Surgeons & Nurses are working in different areas to cover the pandemic.  Hubby is in touch with Prostate Cancer UK Nurse though.


Thank you for replying. 


M 

Mel

User
Posted 25 Mar 2020 at 21:13
There may be the option of starting HT just to halt it in its tracks until he can have the surgery

Bri
User
Posted 25 Mar 2020 at 21:42
I agree with Bri - I think I would also be asking whether he can have HT while waiting for the operation
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Mar 2020 at 22:14

Thank you both. We had unexpected call from surgeon earlier which we missed, as we were in the garden. No details left, tried returning call. He had left. 


Will just have to wait for when he tries again. Handy to have seen this beforehand. Forewarned is forearmed. 😊

Mel

User
Posted 28 Mar 2020 at 13:39

Due an RP today (28th March) which was cancelled yesterday.  Seemingly NOT, as I first thought, because of demand for beds, but following guidance from some august body saying that the gas inflation used by the robot in Robot-assisted laparoscopic surgery can cause an aerosol which propagates virus particles.  Has anyone any further information?

User
Posted 28 Mar 2020 at 14:11

Hi Mike,


Sorry to hear, you are in this position also.


Unfortunately, the cancellations are not only due to pressure on beds. The assessments on approaches to treatment are done on assessment of overall risk. Any AGP (aerosol generating procedure) brings increased risk to those in the area of becoming infected. There is lots of literature available if you google AGP and Covid19.


Also, post surgery your body would be under stress which could compromise your own immunity. This whole situation has many unseen complications.


 

Edited by member 28 Mar 2020 at 14:21  | Reason: Not specified

Mel

User
Posted 28 Mar 2020 at 14:15

Hi Mike


I had my pre op assessment yesterday which was a bit surreal, when they rang in the week I asked if it was safe for me to go into the hospital at this time but assured me it was ok, so I went anyway. My hospital is in Cardiff where they carry out the Da Vinci and they were implying that they are trying to fit in as many procedures as possible before the hospital stops doing them. There was no mention of the gas causing any issues, but would they ? Not sure about your PC but mine was contained to the prostate at time of bone scan, my Gleason score was 4&3 a 7, and my psa was 13. I’m 53 and apart from PC am in pretty good health, but I have to honest I’m very worried about undergoing any surgery at the moment due to the hysteria being caused by covid 19. I’ve not been sleeping at all worrying, the indecision of whether to tell them I’d rather wait until we are through this troubling time, but of course no one knows when the operations will start again. 


Carl..

User
Posted 28 Mar 2020 at 14:38
Hi Carl,

Husband is due at UHW too. We’ve been told 3-4 month delay at best.


Mel

User
Posted 28 Mar 2020 at 22:32

Hi.


Has your hubby had his pre op assessment yet ? I had mine yesterday and it seemed like they were implying I would be going for the op very soon which seems ridiculous at present. Having read your post I’m wondering why they have not told there’s going to be a delay. 
How are you both doing during the difficult times with PC ? I thought I was young to get PC, but 44 is so young. I hope your both holding up ok. If you guys ever want to get in touch or meet up after all this covid 19 stuff we can compare notes 👍


 


Carl

User
Posted 29 Mar 2020 at 10:20
No. We were due to see Cons on Fri which was cancelled, rebooked then cancelled again.

He spoke to Cons on Wednesday who said they were trying to get through as many as poss. He was then expecting at least a couple weeks where they would not operate, I guess as the COVID19 surge peaks, and then to resume. He wasn’t due to have surgery until May.

The back log list will, as usual, be prioritised by scores and associated risk. He’s finding it tough, keeping very busy to distract himself. Think it may well be worth having a chat at some point. Not sure that he is ready at the moment.

Mel

User
Posted 29 Mar 2020 at 11:59

Good morning Carlos53 and MK1977.


I had RP at Cardiff on the 1st October 2019 at 44 years of age.


Still suffering from slight incontinence.


Strong erections came back a couple of weeks ago with the help of Viagra!


Good luck to you both.

User
Posted 29 Mar 2020 at 12:08
Hi,

Sorry you are a member of the ‘so young’ club too!

Good to hear that you are recovering seemingly well post surgery. How was the immediate post surgery journey for you, as a younger man? How long realistically do you advise staying off work? Doc said minimum 6 wks.

Also, if you don’t mind me asking, do you have a wife/gf who has supported you through?

Thanks,


Mel

User
Posted 29 Mar 2020 at 12:31

Hi Mel,


I really struggled after surgery, went back into hospital after a couple of days due to loss of blood! Needed a blood transfusion and ended up staying a further 3 nights.


The catheter was with me for 2 weeks and that was hard work.


I remember having to take painkillers for a number of weeks.


Was definitely off work for 6 weeks.


Girlfriend was amazing, she helped with catheter bag changes,medicine,food and even the bin collection! Haha


Any questions please feel free to ask.


Jeff

User
Posted 29 Mar 2020 at 12:51
Ok thank you. Fortunately, I am a Nurse (albeit for children). I am also a dab hand at putting the bins out too. So, I should at least have that bit covered! Ha.

My worry, is the emotional fall out of diagnosis & treatment vWe both went back to work same day as diagnosis, as we didn’t know what else to do really (and our children didn’t know at that point). It’s all very surreal. I think when we stop for surgery, the sledgehammer will hit.

Are you or Carlos53 a member of any local support groups?

Mel

User
Posted 29 Mar 2020 at 13:12

Hi can I ask who did your surgery ? 

User
Posted 29 Mar 2020 at 13:17

My partner was due to have his first psa after starting hormone treatment this week, it was going to be done at the GP so I am hoping it will still go ahead. Hopefully, the psa will have dropped which will give us both a much-needed boost. 

Some days you just have to create your own sunshine...... 

User
Posted 29 Mar 2020 at 13:27

Hi


I went to Maggie’s in Swansea as we live in Bridgend and I was advised that the people their were amazing. They were in actual fact very very good, very supportive and the group of about 20 or so guys of all ages and stages of PC. They helped me so much with understanding the practical things and also the more troubling aspect of what this PC does for the state of your mind. There is a Maggie’s in Velindre but obviously there won’t be doing the groups I would imagine. I was diagnosed in Dec 2019 and if I’m brutally honest I’m really struggling with it all emotionally the ups are few and far between and the downs are a constant.I seemed to of isolated myself a little bit and a bit withdrawn which is totally not my character at all. As they say “it’s good to talk” so when your ready drop me a msg or give me a call. My wife is incredibly supportive but I feel awful for putting her through this..It’s easy to see why they call PC the couples disease. 


Anyway of that doom and gloom Carry on film on this afternoon and my continuing saga with binge watching Breaking Bad. Thank god for Netflix 


 


Carl

User
Posted 29 Mar 2020 at 13:27

I was diagnosed in April 2019 and waited for 6 months before the operation, my choice.


My dad and two of my uncles have had the operation and all are doing well. As a young man I knew it was going to be okay and the 6 months gave me the opportunity to know everything about the RP operation. This forum gives a great insight to many who have had the operation and their recovery after it.


Life goes on and i'm lucky to say this op didn't faze me at all.


I have 2 girls aged 17 & 15 so told them immediately and i'm not on any support group.

User
Posted 29 Mar 2020 at 13:28
Hi Annie,

I should think it will having read your story. Fingers crossed for you both.

Hubby due to have bloods in April now to check no further elevation in PSA whilst we wait.

Today’s sunshine is slow cooked lamb dinner! :)

Mel

User
Posted 29 Mar 2020 at 13:29

I don't believe we can put names on here?


But it was Mr W....n who performed the surgery.

User
Posted 29 Mar 2020 at 13:30
Just to balance The1974’s response. I had RP in 2013. Discharged the day after. Didn’t need the painkillers as any discomfort was minimal (apart from if I sneezed). Catheter was an inconvenience but not too problematic (wouldn’t stand first in the queue for another one like).
I basically put my feet up for the duration of the recovery period.
I recall the worst part was the initial constipation as a result of the anaesthetic but that cleared with 3 days.
But we are all different and hopefully your OH will have a non problematic recovery once he’s had the op
User
Posted 29 Mar 2020 at 13:36

Where did you see the surgeon prior to you op ? 

User
Posted 29 Mar 2020 at 13:42

I live in Newport so saw him at the Gwent about a month prior to operation, only Cardiff have the De Vinci machine near me.


Pre-op all done by the nurses.

User
Posted 29 Mar 2020 at 13:43

I had my pre op done Friday morning at the Heath. Just a waiting game now .....

User
Posted 29 Mar 2020 at 13:51

Best of luck to you.


Remember we all heal differently and at different times.


Pelvic floor to strengthen the muscle after catheter removal is vital.


5mg of Cialis daily when you can get it post op to help blood flow to the penis and a vacuum pump too!


Lots of guys on here giving the best advice as we have been through it🙏🏻

User
Posted 29 Mar 2020 at 14:13

Hope so Mel. The sunshine and fine weather this past week have helped lift our moods in particular my partners but a lower psa would be really good. 

Some days you just have to create your own sunshine...... 

User
Posted 29 Mar 2020 at 14:22
The1974 thanks so much. Your children are the same age as ours! How did they cope? Ours are being very pragmatic on the surface at least.

Carlos53 this is the journey I am expecting to come. At present, being healthy and active are like a protective veil which overall is good. Are you under Mr KS in Swansea?

Annie, best of luck. Will be thinking of you.

Mel

User
Posted 29 Mar 2020 at 16:37

Originally Posted by: Online Community Member


 Hi can I ask who did your surgery  ? 



 


Carlos, it is against the site rules for anyone to reply to your question openly but the member might send you a private message instead. 

Edited by member 29 Mar 2020 at 22:39  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2020 at 17:10

I’m worried for my hubby who is going in for TRUS on Wednesday.....🙏🏼🙏🏼 it’s not cancelled. He couldn’t have an MRI because of COVID. So sorry to hear about cancelled surgeries....such a worrying time 🌹

User
Posted 29 Mar 2020 at 17:55

Hi


i wasn’t aware that I had asked a sensitive question ...

User
Posted 29 Mar 2020 at 19:21

Thank you, MK1977.  I hope to find out more in a conversation with the consultant tomorrow. If using a robot is an aerosol generating procedure, then it will always have been so, propagating viruses of any sort.  Though propagating Corona is clearly much more of a threat.  I wonder if there is a technical fix, to, for example, suck away the aerosol?  Alternatively, how long do we wait until the levels of possible airborne virus particles drop to a level considered safe enough for the operating team and patient to be in theatre together??  

User
Posted 29 Mar 2020 at 19:29
Mike, I do hope so. I suspect that it is more than just the worry over AGPs. Our Cons advised that the urology ward in the local hospital has been converted for other use at present. Best of luck!

Mel

User
Posted 29 Mar 2020 at 19:40

Hi Carl,


We're similar in that my Gleason is also 4+3, though I have a slightly lower PSA than you.  I'm Stage T3 where cancer is starting to break out of the prostate capsule.  Following major disappointment at my op being cancelled  less than 24 hours before admission, I'm coming round to the view that maybe it's best, on a risk basis.  I'm told that, generally speaking, PCa is a slow growing one (I'm NOT any sort of medical practitioner) so an extra couple of months before surgery shouldn't make too much difference.  You and I may well have had it some while before diagnosis.  You say your hospital didn't mention the aerosol problem - I only found out last Friday, 27 March, and it seems to have been very recent new guidance.


This whole PCa business is nasty, threatening and unpleasant; the treatment is uncomfortable to say the least.  No one likes one's equipment interfered with, and it goes to the heart of one's manhood and virility.  However, as many have told me, say 12 months down the line one can be well-recovered, living a full and happy life and even enjoying an erection again.  I'm sure your wife wants to support you, rather than feeling it's something you are putting her through.  I wish you well.

User
Posted 29 Mar 2020 at 19:46

Lexi26, best of luck for Wednesday. As Lyn said they will know the area they need to concentrate on.


It took 2 weeks and 2 days for the TRUS results to come back. May be less now with the pathology labs being a bit quieter due to CV19.  There seems to be a few wives on here, as well as the gents. It’s a nice place to talk without having to talk if that makes sense! :) 

Edited by member 29 Mar 2020 at 20:02  | Reason: Not specified

Mel

User
Posted 29 Mar 2020 at 22:42

Originally Posted by: Online Community Member
Mike, I do hope so. I suspect that it is more than just the worry over AGPs. Our Cons advised that the urology ward in the local hospital has been converted for other use at present. Best of luck!


 


Yes, and in our area almost all operating theatres, recovery rooms, etc have been converted to HDUs - Newcastle hospital trust has done the same. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2020 at 22:45

Originally Posted by: Online Community Member


Lexi26, best of luck for Wednesday. As Lyn said they will know the area they need to concentrate on.


It took 2 weeks and 2 days for the TRUS results to come back. May be less now with the pathology labs being a bit quieter due to CV19.  There seems to be a few wives on here, as well as the gents. It’s a nice place to talk without having to talk if that makes sense! :) 



The CMO of Leeds THT was on TV on Friday - their pathology labs are inundated with Coronavirus sample testing - big machines that can test hundreds of samples each day 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Mar 2020 at 02:44

I think it may be worth pushing for hormone treatment if there is a delay in operating. This will halt the cancer spreading out of the prostate. My husband had a delay in the operation and we believe that hormone treatment would have kept the cancer within the prostate.  

User
Posted 30 Mar 2020 at 08:42

Thanks Mrs Fish, Bloods are going to be done in April. To recheck PSA for any further elevation. Then HT will start in the interim if necessary. 


 

Mel

User
Posted 31 Mar 2020 at 15:16

How you getting on .


Carl.

User
Posted 31 Mar 2020 at 15:23

Hi, just keeping as busy as possible really.


Any news on your op yet?  How are you and your wife doing? 

Mel

User
Posted 31 Mar 2020 at 15:30

No news as yet. Just trying to keep busy and keep my mind focused. If I’m honest I’m not sure I want the op done right now, for obvious reasons. I’m not sure it’s very safe to have an operation of this type with covid 19 being so prevalent. It’s awful how they just cancel at last minute all the time with a lot of the guys. What are your thoughts ? 


 Carl

User
Posted 31 Mar 2020 at 15:37

I totally understand your reservations. Possible exposure during or even post op is worrying.  Can they give you info on hospital set up & whether staff have only been working ‘cold’. Not with patients suspected or confirmed as CV19? 

Have you discussed nomograms with your Consultant?  This is what we were due to do last wk.  Could they guide you on what delaying would mean for you personally, to help you make an informed choice? 


 

Mel

User
Posted 31 Mar 2020 at 20:51

Hi Carl,  Thanks for your private message.  I'm not allowed to send private messages myself yet as I'm too new a member.  Apparently this will change when I've made more forum comments.  However, the answer is, he hasn't phoned.  I was promised he would ring me on Monday, but nothing heard then or today.  I'm trying to rationalise it's because he has more pressing cases.

User
Posted 31 Mar 2020 at 22:46

Sorry to hear you’ve not been contacted, if it’s any conciliation I’m in limbo too, I’ve heard nothing from any of the PC team. I’m sure they are extremely busy but it does make me feel vulnerable and forgotten almost like we are not worthy because of this virus. The uncertainty is driving round the bend as I’m sure it is for all the guys waiting for surgery or treatment


 


Stay strong, stay safe... 

User
Posted 01 Apr 2020 at 13:49

Hi all, just popping in trying to put my mind at rest. I forget about it all for a short while then......Boom.


With the TRUS being cancelled and nowhere being able to offer a scan privately it’s pretty scary . I’m fairly convinced what the results will be and if it is PC the not knowing how long it’s been there and the consequences of how much longer it may go untreated is awful (even though I’ve read that some folk take 6 months to decide what treatment they want).


Hubby is keeping busy and with the decent weather has been out in the garden every day.


🌹

User
Posted 01 Apr 2020 at 19:31

Its a worrying time isn’t it ... secretary at my partners GP said no blood tests were being done even though he explained its the first test since starting hormone treatment but she would speak to someone. Eventually he got call back to say they will be doing his PSA test so thats a relief just keeping fingers crossed its gone a little. 

Some days you just have to create your own sunshine...... 

User
Posted 01 Apr 2020 at 19:46
It certainly is tough times indeed.

We can only hope this peak passes as quickly as possible, and the remaining affects are low enough for other services to resume.

Plan to call GP tomorrow for bloods appointment (hopefully). It’s hard to find comfort with such uncertainty but at least we can talk to each other 😊.

Mel

User
Posted 05 Apr 2020 at 11:16

My husband Tim is awaiting his op in Portsmouth QA but properly not till August September time ?? Due to this virus the most annoying thing is your told your treatment and that's it wait till you see the consultant to discuss treatment plan which they have advised removal of prostate but nobody seems to tell you the after effects and what can happen, so thanks to all you guys on here telling and speaking of your experience it's a great help.


 

 
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