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Am I cured or in remission?

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User
Posted 24 Jan 2020 at 23:11

It's been just over 7 weeks since my Radical Prostatectomy, my wife and I met the surgeon for the first time since the operation earlier this week. My PSA was 0.01 and he was confident enough to say I should consider myself cured. I said if I'm cured could I have that in writing to use for travel insurance purposes, as I am currently not covered by my bank policy, since informing them last autumn of my cancer diagnosis. Further, if I am cured, why the regular PSA checks for the next 5 years? Suffice to say, I will not be receiving any such written statement, I accept it's not possible to guarantee that I am and will forever be cancer free. Now whilst I can appreciate the need to remain positive and try and accept what I'm told, there are too many accounts of men that find the cancer does return at a later stage, so why not inform me that the post up diagnosis is really encouraging and through regular monitoring there is an excellent chance this will remain so? Is the truth of the matter that after treatment, I'm now in remission?

 

User
Posted 25 Jan 2020 at 13:30

I'm only just starting HT/EBRT myself so some way off where this would even become an issue.  That said, the word "cure" has never been mentioned by any of the medics I've seen right from diagnosis, whether urology team or oncology.  They have only ever spoken in terms of treatability, survival rate and life expectancy.  Never any promise of a total cure.  That's fine with me.  I'd rather they were honest than misleading, whether done with good intentions or not.

User
Posted 24 Jan 2020 at 23:11

It's been just over 7 weeks since my Radical Prostatectomy, my wife and I met the surgeon for the first time since the operation earlier this week. My PSA was 0.01 and he was confident enough to say I should consider myself cured. I said if I'm cured could I have that in writing to use for travel insurance purposes, as I am currently not covered by my bank policy, since informing them last autumn of my cancer diagnosis. Further, if I am cured, why the regular PSA checks for the next 5 years? Suffice to say, I will not be receiving any such written statement, I accept it's not possible to guarantee that I am and will forever be cancer free. Now whilst I can appreciate the need to remain positive and try and accept what I'm told, there are too many accounts of men that find the cancer does return at a later stage, so why not inform me that the post up diagnosis is really encouraging and through regular monitoring there is an excellent chance this will remain so? Is the truth of the matter that after treatment, I'm now in remission?

 

User
Posted 25 Jan 2020 at 12:05

It's a good question! My Gleason 6 T2a was removed with clear margins etc but my surgeon is good enough to never say 'cure' he says good outcome, 99% etc etc, but never 'cure' and I am having PSA tests every 3 months just now...

User
Posted 25 Jan 2020 at 12:53

“I knew one, a miracle worker, who would never speak to a patient again if the surgery went badly. This was a grave insult to the patient, and he wouldn't get away with it today. But the insult was unintended. He just could not face what he saw as his own failure.”

I think both Capitalman and SallyandMike would agree with that ... both had top surgeons identified on the Daily Mail top 10 list, both were left with life changing problems, both were then completely disowned by their respective surgeon.

Edited by member 25 Jan 2020 at 12:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jan 2020 at 13:44

Hi Folks,
Thank you all for your responses, in my mind, I'm not cured and whilst I have to just get on with my life, at the back of my mind and at every PSA test I will have the fear of cancer returning. Hopefully with the passage of time this fear will gradually reduce, none of us know whats round the corner, including the No.73 bus that could hit us!
To be honest, I'm still coming to terms with my cancer diagnosis and recent operation. I have mixed emotions and whilst the post operation diagnosis at this very early stage is encouraging, I consider myself someone who remains a cancer patient / survivor. I do not feel comfortable telling people or my employer - I had cancer, but now I am cured !
The operation itself has life changing consequences and cancer is such a dreaded word, being able to shrug it off and pretend everything can go back to the way my life was, is to a certain extent incorrect in my opinion.
I am progressing well, certainly getting slowly back to normality (as best I can) and looking forward to the future.
Whilst I will forever be grateful to the NHS for saving my life, it's far from over. It's not just the regular monitoring and treating or coming to terms with ED - it's the fact I have been through a dramatic and life changing experience that only those that have shared this experience can really understand. One must never forget the affect on this loved ones that are also affected, who through there own care / compassion stand by us and walk this journey. Very blessed I have such a wife, who has been my rock and remains positive and lifts my mood when I'm low and shares my highs!
All this is very new to me, never thought 6 months ago I'd be one of the 1 in 8 men diagnosed with prostate cancer, nor subsequently joining the online Prostate Cancer UK forum community. But this wonderful charity has been such a great support to me, the ability to talk to a specialist nurse, or share our thoughts on this forum and engage with people from all over the UK is marvellous! It's very easy to feel isolated and for some men who have no partner or close family / friends it must be so much harder emotionally - so this charity and others like Macmillan etc must be a lifeline - thank goodness we have such dedicated organisations in place to offer support to patients and loved ones.

Edited by member 26 Jan 2020 at 13:46  | Reason: Not specified

User
Posted 26 Jan 2020 at 15:14
What I love most about your attitude is that you had the presence of mind / humour to ask the surgeon to put it in writing; brilliant. I don’t think PSA anxiety ever totally leaves the party but I suspect you have the resilience and personality to pick yourself up and live your best life.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jan 2020 at 20:40

Amnon 

Best wishes for tomorrow. 

TG

User
Posted 26 Jan 2020 at 21:06
Ditto - all the best Amnon for tomorrow, hope it all goes well. Please keep us all posted on your progress, you are not alone!
User
Posted 29 Jan 2020 at 17:10

Originally Posted by: Online Community Member
Ditto - all the best Amnon for tomorrow, hope it all goes well. Please keep us all posted on your progress, you are not alone!


Thanks all.
Just back from hospital. 
Op went well. Feeling a bit rubbish. But nothing terrible.
And each day is better.

I am finding the Catheter a bit difficult - constant sensation of the need to pee.
The say this feeling should subside in a few days.
At UCLH urology department everyone was quite amazed that I have never had a catheter before.
Apparently if you haven't had a catheter, you haven't lived.

That said, I was pretty terrified of getting disemboweled by a 6 arm robot,
and it is great to be on the other side. From here, onwards and upwards.

User
Posted 29 Jan 2020 at 21:32

Good luck with your recovery.

 

Ido4

User
Posted 30 Jan 2020 at 13:15
Good to hear from you Ammon - the needing to pee is what I experienced, it will not be long before the catheter will be removed and what a joyous relief that is! Best wishes for a speedy recovery.
User
Posted 02 Feb 2020 at 08:58

Might I just say that if it helps, I have driven the 73 bus on a number of occasions over my career and so far have not hit anyone. I hope that this will give comfort to some.

All the best

Kevan

User
Posted 11 Feb 2020 at 20:50

Well it's now 10 weeks since my RP operation. I'm back at work and doing my best to just get on with things. I still need to wear pads, but they are the very thin light ones. Still waiting to see a specialist to discuss and address the ED (appointment end of the month), but I am on 50mg of Sildenafil every third day.

Everyone comments at work and socially how well I look and on a positive note, I'd rather look like the old Rick then have an appearance that many assume cancer survivors should look like! However, whilst I strive to be upbeat, I still don't always feel positive and still have down days. Inside I'm a long way from my old self, for some work gives them a purpose, but that's not how I currently feel, it's merely a means to keeping a roof over my head. Not looking forward to the annual appraisal process next month, having to demonstrate enthusiasm, prove your worth, promote your achievements, commit to development, when all I want to do is either be left alone to get on with my job or better still get early retirement, which unfortunately is not possible! I guess again on a positive note, I'm fortunate to have a job, appreciate many men have to deal with their prostate cancer whilst unemployed, but I've had enough of the "rat race"and the endless pace of change in the work place. 

Edited by member 11 Feb 2020 at 21:48  | Reason: Not specified

User
Posted 11 Feb 2020 at 20:58
In the annual appraisal process, they have to make allowances for that fact that you are a cancer patient. Otherwise they are laying themselves open to being accused of discriminating against you on grounds of disability.
User
Posted 12 Feb 2020 at 13:14

Originally Posted by: Online Community Member

Everyone comments at work and socially how well I look and on a positive note, I'd rather look like the old Rick then have an appearance that many assume cancer survivors should look like! However, whilst I strive to be upbeat, I still don't always feel positive and still have down days. Inside I'm a long way from my old self, for some work gives them a purpose, but that's not how I currently feel, it's merely a means to keeping a roof over my head. Not looking forward to the annual appraisal process next month, having to demonstrate enthusiasm, prove your worth, promote your achievements, commit to development, when all I want to do is either be left alone to get on with my job or better still get early retirement, which unfortunately is not possible! I guess again on a positive note, I'm fortunate to have a job, appreciate many men have to deal with their prostate cancer whilst unemployed, but I've had enough of the "rat race"and the endless pace of change in the work place. 

Hi Rick,

I had my op in November and have to say that I feel the same way with regards to work and socializing, (and the "rat race").

I still have down days too and definitely don't feel the same as I did before. 

Not sure what the answers are, maybe it'll improve over time, who knows?.. anyone?

Cheers. 

Edited by member 12 Feb 2020 at 14:10  | Reason: Not specified

User
Posted 12 Feb 2020 at 18:30

I don't know the answer. I put a brave face on it, but that is definitely not the answer.

People think I'm OK, they make glib statements about it being a very treatable disease, or the best cancer to get. I know they are trying to be helpful, and I don't criticise them, I certainly don't want people to think "Don't talk about the big C, Dave's in earshot" so I think it's better just let the conversation go, and maybe correct some of the assumptions gently.

That is the good thing about this forum, we are all singing off the same hymn sheet.

Edited by member 14 Feb 2020 at 09:05  | Reason: Punctuation

Dave

User
Posted 12 Feb 2020 at 21:24

As many of you will have realised, I am quite confrontational by nature, and J (usually) eases my excesses by being the most calm and reasonable person in the world. However, he found the 'best one to get' murmurings really upsetting (particularly because he was only 50 and it was still seen as an old man's disease at the time) and has been quite good at challenging sometimes. To "Oh, my father / friend / neighbour's uncle had that and he is fine" the best response is "That's great to hear. Does he prefer injections or a vacuum pump to get erections?" which shuts people up very quickly 😂

The worst experience he had post op was an employee who would only speak to him from the office doorway. Eventually, J said "it's okay, you can't catch it you know," to which the response was "well, you can't be sure of that"! 

Personally, Rick, I would have downloaded the Macmillan leaflet on cancer diagnosis and mental health and rammed it down the HR officer's throat. Unforgivable ignorance from a professional who should understand about employee wellbeing!

Edited by member 12 Feb 2020 at 21:28  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Feb 2020 at 23:31
Hi Rick, you have again raised an issue l share. I am back at work and glad to be. I have encouraged a Jimmy Carr, bad taste type dark humour about about the whole issue but 4 in the morning it still bites.

So, today I went to the self help group meeting at my local hospital and like the site, it helped to chat (if only briefly) to guys with the same knowledge we have but who are further down the road.

I also was able to have a word with the MacMillan nurses (who are fantastic) and I have arranged to have a meeting to look at how to better understand how I can deal with “where I am” with this nonsense.

Perhaps there maybe a support group attached to your local hospital.....definitely worth a look.

Best to you and all

User
Posted 29 Jun 2021 at 08:12
Suggest you seek professional help and maybe revisit the injections, it may be you are not using enough or your technique is wrong. I get what you mean about the pump but don't write it off and make sure you use it for rehab if nothing else.

Injections were my saviour and they can be brilliant, but you need to practice and that is difficult if you are also desperate for meaningful sex.

It was around 3 years that things became better for me, never going to be able to use it as a crowbar again but with a durex cock ring and acceptance of my limitations I now (6 years later) have a great sex life unassisted by chemicals.

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User
Posted 25 Jan 2020 at 00:37

In medical terms, there is no such thing as being cured of cancer - what we all hope for is 'full remission' which is generally defined as remaining cancer free for 10 years. Some will talk of remission at 5 years. My dad received a letter from the hospital 10 years after his RP informing him that he was now in 'full remission' although he did go on to have recurrence at 13 years post op.

John's consultants have both always been careful to talk in terms of remission rather than cure although I note on here that a number of men have posted recently that their surgeons talked of cure. I suppose it is possible that some surgeons dumb down their language to what they think the common person on the street will understand, and there is no doubt that some have big egos and are indicating what they think of their own skills. But at 7 weeks post op, no surgeon in his right mind would truly believe their patient is 'cured' and it is far too soon to even talk about remission. 

My cousin died aged 52 a couple of years ago because his egomaniac of a surgeon said he had done such an amazing job, Dave didn't even need to be monitored. The GP questioned this in writing and the surgeon replied that the patient was now cured. The lack of monitoring meant that the recurrence was picked up too late; unsurprisingly, the surgeon's letter was a key document in the complaint after he died.

Edited by member 25 Jan 2020 at 00:39  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jan 2020 at 00:38
PS you will need regular PSA tests for the rest of your life, not just the next 5 years.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jan 2020 at 01:55

Originally Posted by: Online Community Member
so why not inform me that the post op diagnosis is really encouraging and through regular monitoring there is an excellent chance this will remain so?

What you say above is an excellent summary of what should be said after a successful treatment. I guess I will let the surgeon of the hook a little though. Treatment is either "palliative" or "with curative intent" so they do intend to cure us, but they can never know if they succeeded. Remission implies that things may return, but they are not treating us "with remissive intent" they really do want to cure us.

So I think dumbing down your accurate description to "you're cured" is just about understandable, but not quite forgivable. 

Dave

User
Posted 25 Jan 2020 at 11:37

Hi Rick,

My surgeon said he could cure me, and twenty months down the line he has. I am not holding my breath!

Congratulations on your ‘cure’. If you want to see how ‘cured’ you are you can use this prognostication tool to forecast the probability of you becoming uncured years hence.

Best of luck with your recovery.

Cheers, John.

https://www.mskcc.org/nomograms/prostate/post_op

Edited by member 25 Jan 2020 at 12:17  | Reason: Not specified

User
Posted 25 Jan 2020 at 12:05

It's a good question! My Gleason 6 T2a was removed with clear margins etc but my surgeon is good enough to never say 'cure' he says good outcome, 99% etc etc, but never 'cure' and I am having PSA tests every 3 months just now...

User
Posted 25 Jan 2020 at 12:21

Hi Rick,

I'd take 'cure' with a huge pinch of salt. And although I'm thinking glass half full rather than half empty, I guess all of us will be looking over our shoulders for years to come.

Kev.

User
Posted 25 Jan 2020 at 12:53

“I knew one, a miracle worker, who would never speak to a patient again if the surgery went badly. This was a grave insult to the patient, and he wouldn't get away with it today. But the insult was unintended. He just could not face what he saw as his own failure.”

I think both Capitalman and SallyandMike would agree with that ... both had top surgeons identified on the Daily Mail top 10 list, both were left with life changing problems, both were then completely disowned by their respective surgeon.

Edited by member 25 Jan 2020 at 12:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jan 2020 at 13:30

I'm only just starting HT/EBRT myself so some way off where this would even become an issue.  That said, the word "cure" has never been mentioned by any of the medics I've seen right from diagnosis, whether urology team or oncology.  They have only ever spoken in terms of treatability, survival rate and life expectancy.  Never any promise of a total cure.  That's fine with me.  I'd rather they were honest than misleading, whether done with good intentions or not.

User
Posted 25 Jan 2020 at 13:39

Hi Rick,

A wide range of thoughts in the replies.

It can depend on you.  My brain won't allow me to believe I'm cured, except I occasionally think it might be possible there are no prostate cancer cells in my body. 

Usually just before the psa test I think about it more.

It's a matter of chance and probability.  One doctor said I've more chance of dying of a heart attack, he might think that good but it might be thought that's two items that might get me instead of one.

User
Posted 25 Jan 2020 at 14:33

Agree with we could have that certainty. Same 0.01 at 13 weeks post op.

Wondering what to tell our insurer. Will not be away till June 2020.

 

 

User
Posted 25 Jan 2020 at 17:48

Yes - from everything I've read "cure" is often an inappropriate word with cancer and especially our particular brand. My oncologist used phrases like "men with your diagnosis have done very well with this line of treatment." I think that's the right way to put it. It can be a little confusing because you hear the phrase "with curative intent" used form time to time - I certainly did but there is a subtle difference.

User
Posted 25 Jan 2020 at 19:00

Originally Posted by: Online Community Member

Wondering what to tell our insurer. Will not be away till June 2020.

 

When we phone up each year and go through the questions, they ask what treatment he has had, when he last attended an appointment with the specialist and whether he is on any hormone therapy at the moment. So far, our annual worldwide policy has been about £120 per annum per person (with PCa and other medical issues covered) and they didn’t even add a premium the year he climbed Kili, even though he was having salvage RT when he got back. 

Edited by member 25 Jan 2020 at 19:01  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jan 2020 at 09:44

The best I ever get is...."you're managing your prostate cancer very well", as if I have any physical control over what happens next.

Flexi

 

 

User
Posted 26 Jan 2020 at 12:26

Me , travel insurance is a minor thing in the grand scheme of things just pay and go , and enjoy yourself , I like the word remission , never cure . I personally think there’s no such thing . 

User
Posted 26 Jan 2020 at 13:44

Hi Folks,
Thank you all for your responses, in my mind, I'm not cured and whilst I have to just get on with my life, at the back of my mind and at every PSA test I will have the fear of cancer returning. Hopefully with the passage of time this fear will gradually reduce, none of us know whats round the corner, including the No.73 bus that could hit us!
To be honest, I'm still coming to terms with my cancer diagnosis and recent operation. I have mixed emotions and whilst the post operation diagnosis at this very early stage is encouraging, I consider myself someone who remains a cancer patient / survivor. I do not feel comfortable telling people or my employer - I had cancer, but now I am cured !
The operation itself has life changing consequences and cancer is such a dreaded word, being able to shrug it off and pretend everything can go back to the way my life was, is to a certain extent incorrect in my opinion.
I am progressing well, certainly getting slowly back to normality (as best I can) and looking forward to the future.
Whilst I will forever be grateful to the NHS for saving my life, it's far from over. It's not just the regular monitoring and treating or coming to terms with ED - it's the fact I have been through a dramatic and life changing experience that only those that have shared this experience can really understand. One must never forget the affect on this loved ones that are also affected, who through there own care / compassion stand by us and walk this journey. Very blessed I have such a wife, who has been my rock and remains positive and lifts my mood when I'm low and shares my highs!
All this is very new to me, never thought 6 months ago I'd be one of the 1 in 8 men diagnosed with prostate cancer, nor subsequently joining the online Prostate Cancer UK forum community. But this wonderful charity has been such a great support to me, the ability to talk to a specialist nurse, or share our thoughts on this forum and engage with people from all over the UK is marvellous! It's very easy to feel isolated and for some men who have no partner or close family / friends it must be so much harder emotionally - so this charity and others like Macmillan etc must be a lifeline - thank goodness we have such dedicated organisations in place to offer support to patients and loved ones.

Edited by member 26 Jan 2020 at 13:46  | Reason: Not specified

User
Posted 26 Jan 2020 at 15:14
What I love most about your attitude is that you had the presence of mind / humour to ask the surgeon to put it in writing; brilliant. I don’t think PSA anxiety ever totally leaves the party but I suspect you have the resilience and personality to pick yourself up and live your best life.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jan 2020 at 18:38

Originally Posted by: Online Community Member

It's been just over 7 weeks since my Radical Prostatectomy, my wife and I met the surgeon for the first time since the operation earlier this week. My PSA was 0.01 and he was confident enough to say I should consider myself cured. 

Congratulations!

My RP is tomorrow. 
Very encouraging to hear people who are through to the other side.
Especially with such great results!

User
Posted 26 Jan 2020 at 20:40

Amnon 

Best wishes for tomorrow. 

TG

User
Posted 26 Jan 2020 at 21:06
Ditto - all the best Amnon for tomorrow, hope it all goes well. Please keep us all posted on your progress, you are not alone!
User
Posted 27 Jan 2020 at 19:33

Rick 

Considering your post I fully agree how life changing diagnosis is for you and your wife. We feel lucky to have found a good surgeon and had a positive first result post surgery 14 weeks ago. Hubby still struggling with incontinence though way better than 6 weeks ago. He had a long term problem with ED which we had lived with due to an enlarged benign prostate. We are hopeful of a good recovery in the next 9.months. thank goodness for tena products.  We are still shell shocked and life will be known as life pre 13th sept 2019 and post

 We are deeply tired and gave additional family stress to deal with an approaching major building work. We will get through I guess. As my mother said "That is another thing got through. " I feel we should make every day count as you really don't know what life has in store for you. 

 

I am truly grateful for the support here and the nurses who gave reassured us in the early days post surgery. It was hard to call the ward for advice and our Macmillan nurse was very  busy. 

 

Wish well. 

Edited by member 28 Jan 2020 at 15:23  | Reason: Not specified

User
Posted 29 Jan 2020 at 17:10

Originally Posted by: Online Community Member
Ditto - all the best Amnon for tomorrow, hope it all goes well. Please keep us all posted on your progress, you are not alone!


Thanks all.
Just back from hospital. 
Op went well. Feeling a bit rubbish. But nothing terrible.
And each day is better.

I am finding the Catheter a bit difficult - constant sensation of the need to pee.
The say this feeling should subside in a few days.
At UCLH urology department everyone was quite amazed that I have never had a catheter before.
Apparently if you haven't had a catheter, you haven't lived.

That said, I was pretty terrified of getting disemboweled by a 6 arm robot,
and it is great to be on the other side. From here, onwards and upwards.

User
Posted 29 Jan 2020 at 20:08

Great news!

have a good recovery and take it easy :-)

TG

User
Posted 29 Jan 2020 at 21:32

Good luck with your recovery.

 

Ido4

User
Posted 30 Jan 2020 at 13:15
Good to hear from you Ammon - the needing to pee is what I experienced, it will not be long before the catheter will be removed and what a joyous relief that is! Best wishes for a speedy recovery.
User
Posted 02 Feb 2020 at 08:58

Might I just say that if it helps, I have driven the 73 bus on a number of occasions over my career and so far have not hit anyone. I hope that this will give comfort to some.

All the best

Kevan

User
Posted 02 Feb 2020 at 12:06
🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Feb 2020 at 20:50

Well it's now 10 weeks since my RP operation. I'm back at work and doing my best to just get on with things. I still need to wear pads, but they are the very thin light ones. Still waiting to see a specialist to discuss and address the ED (appointment end of the month), but I am on 50mg of Sildenafil every third day.

Everyone comments at work and socially how well I look and on a positive note, I'd rather look like the old Rick then have an appearance that many assume cancer survivors should look like! However, whilst I strive to be upbeat, I still don't always feel positive and still have down days. Inside I'm a long way from my old self, for some work gives them a purpose, but that's not how I currently feel, it's merely a means to keeping a roof over my head. Not looking forward to the annual appraisal process next month, having to demonstrate enthusiasm, prove your worth, promote your achievements, commit to development, when all I want to do is either be left alone to get on with my job or better still get early retirement, which unfortunately is not possible! I guess again on a positive note, I'm fortunate to have a job, appreciate many men have to deal with their prostate cancer whilst unemployed, but I've had enough of the "rat race"and the endless pace of change in the work place. 

Edited by member 11 Feb 2020 at 21:48  | Reason: Not specified

User
Posted 11 Feb 2020 at 20:58
In the annual appraisal process, they have to make allowances for that fact that you are a cancer patient. Otherwise they are laying themselves open to being accused of discriminating against you on grounds of disability.
User
Posted 12 Feb 2020 at 13:14

Originally Posted by: Online Community Member

Everyone comments at work and socially how well I look and on a positive note, I'd rather look like the old Rick then have an appearance that many assume cancer survivors should look like! However, whilst I strive to be upbeat, I still don't always feel positive and still have down days. Inside I'm a long way from my old self, for some work gives them a purpose, but that's not how I currently feel, it's merely a means to keeping a roof over my head. Not looking forward to the annual appraisal process next month, having to demonstrate enthusiasm, prove your worth, promote your achievements, commit to development, when all I want to do is either be left alone to get on with my job or better still get early retirement, which unfortunately is not possible! I guess again on a positive note, I'm fortunate to have a job, appreciate many men have to deal with their prostate cancer whilst unemployed, but I've had enough of the "rat race"and the endless pace of change in the work place. 

Hi Rick,

I had my op in November and have to say that I feel the same way with regards to work and socializing, (and the "rat race").

I still have down days too and definitely don't feel the same as I did before. 

Not sure what the answers are, maybe it'll improve over time, who knows?.. anyone?

Cheers. 

Edited by member 12 Feb 2020 at 14:10  | Reason: Not specified

User
Posted 12 Feb 2020 at 18:30

I don't know the answer. I put a brave face on it, but that is definitely not the answer.

People think I'm OK, they make glib statements about it being a very treatable disease, or the best cancer to get. I know they are trying to be helpful, and I don't criticise them, I certainly don't want people to think "Don't talk about the big C, Dave's in earshot" so I think it's better just let the conversation go, and maybe correct some of the assumptions gently.

That is the good thing about this forum, we are all singing off the same hymn sheet.

Edited by member 14 Feb 2020 at 09:05  | Reason: Punctuation

Dave

User
Posted 12 Feb 2020 at 18:49

Hi Kevin T & Dave & Co,

There are no quick fixes, things will improve (we must believe that), but it's a struggle! I was told by a member of our HR department last autumn I was lucky to have one of the better cancers, very treatable. Yes it's treatable if caught early, but the operation as we know has life changing consequences, but I'll not waste my breath explaining that to the person in question.
The trouble is I look physically well and therefore work colleagues understandably think all is well, happy days, back to normal, but we know we are far from normal. I'm not as confident as I once was, often feel anxious and it's a battle to keep my emotions under control at times. To be honest the "rat race" and endless bureaucracy many of us have to deal with at work was getting me down long before my cancer diagnosis, my experience of recent months has just compounded my negative feelings.

Edited by member 12 Feb 2020 at 18:56  | Reason: Not specified

User
Posted 12 Feb 2020 at 21:24

As many of you will have realised, I am quite confrontational by nature, and J (usually) eases my excesses by being the most calm and reasonable person in the world. However, he found the 'best one to get' murmurings really upsetting (particularly because he was only 50 and it was still seen as an old man's disease at the time) and has been quite good at challenging sometimes. To "Oh, my father / friend / neighbour's uncle had that and he is fine" the best response is "That's great to hear. Does he prefer injections or a vacuum pump to get erections?" which shuts people up very quickly 😂

The worst experience he had post op was an employee who would only speak to him from the office doorway. Eventually, J said "it's okay, you can't catch it you know," to which the response was "well, you can't be sure of that"! 

Personally, Rick, I would have downloaded the Macmillan leaflet on cancer diagnosis and mental health and rammed it down the HR officer's throat. Unforgivable ignorance from a professional who should understand about employee wellbeing!

Edited by member 12 Feb 2020 at 21:28  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Feb 2020 at 22:51

Hi LynEyre,

Great response, brought a smile to my face reference "does he prefer injections or a vacuum pump" I'll try to remember that one if I feel the need to shock!

One thing we all need to try and retain despite everything is our sense of humour, if we shed tears let them be from laughter!

 

Edited by member 12 Feb 2020 at 22:52  | Reason: Not specified

User
Posted 12 Feb 2020 at 23:31
Hi Rick, you have again raised an issue l share. I am back at work and glad to be. I have encouraged a Jimmy Carr, bad taste type dark humour about about the whole issue but 4 in the morning it still bites.

So, today I went to the self help group meeting at my local hospital and like the site, it helped to chat (if only briefly) to guys with the same knowledge we have but who are further down the road.

I also was able to have a word with the MacMillan nurses (who are fantastic) and I have arranged to have a meeting to look at how to better understand how I can deal with “where I am” with this nonsense.

Perhaps there maybe a support group attached to your local hospital.....definitely worth a look.

Best to you and all

User
Posted 13 Feb 2020 at 17:34

Hi Seldomseen,

Thanks for your post, unfortunately there is no self help group or support group associated with my local hospital. There is a county based support group that infrequently meet and comprise predominantly of retired men going on hikes! I know exactly how you feel reference the 4am dilemma - hang on in there!

Edited by member 13 Feb 2020 at 22:45  | Reason: Not specified

User
Posted 29 Jun 2021 at 00:00

Well it's been quite some time since I last posted, well over a year ago! It's now approximately 19 months since my Prostatectomy and my PSA readings have all been virtually undetectable which is really good. I still feel the need to wear the very thin shield pads to catch drips etc, but it's bearable and has become a daily routine. As for the ED - that remains an issue, tablets were ineffective, hated the pump and ring and struggled with the self injections, which only enabled me to have a 50% increase in erection. The sexual side of things have been really difficult for me to acceot, it's never going to be the same and if I can achieve an orgasm it's minimal in its intensity with urine discharge. With covid and not wanting to bother the NHS and now having long lost contact with the MacMillan support I originally had - I do feel alone with my thoughts and mental struggle regarding ED, hence why I've decided to reach out again through this forum as I feel I need to discuss this sensitive subject matter with folk that understand what I am going through. I had some nerves spared but most removed, I don't hold much hope for mother nature to step in, it's brilliant that I am currently cancer.free, but I underestimated the mental health consequences associated with ED. Don't get me wrong, I don't regret the operation, but as a relatively younger guy in his late fifties I do miss the physical side of my marriage, despite the wife assuring me it's not a problem. 

User
Posted 29 Jun 2021 at 08:12
Suggest you seek professional help and maybe revisit the injections, it may be you are not using enough or your technique is wrong. I get what you mean about the pump but don't write it off and make sure you use it for rehab if nothing else.

Injections were my saviour and they can be brilliant, but you need to practice and that is difficult if you are also desperate for meaningful sex.

It was around 3 years that things became better for me, never going to be able to use it as a crowbar again but with a durex cock ring and acceptance of my limitations I now (6 years later) have a great sex life unassisted by chemicals.

 
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