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Reasons to be cheerful?

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User
Posted 22 Oct 2018 at 08:49
To cut to the chase...I had my prostate removed just over 5 weeks ago and at my recent histology review I was told that it was contained and within the margins. This is of course wonderful news and I should be [and am] relieved and mega-grateful.

 

So as long as my subsequent PSA results are below the accepted levels this is all very cheery but...here's the thing that's bugging me. 

 

I'm picking up that a few folks may kinda see my cancer [and therefore my emotional and to some extent physical situation] as sorted and a reason to celebrate because the Prostate, with all the cancer, is now in a bucket right? so how can I now say that 'I have Prostate cancer'.

 

This may shock some but feel far from being free of cancer's shadow. I very much feel like I still have cancer for a few reasons.

1] I still have the fall-out and changes to my body/life to deal with;

2] I'll be PSA tested for years and of course ...

3] it could [God forbid] return.

 

So how do I respond to people? Do I need to wear an 'I still have / might have cancer' T-shirt? so people are more understanding of where I am. Or do I need to be a brave soldier and say 'Yes, it's all gone I will be ultra-positive and look beyond it all?' 

 

Apologies if this sounds selfish or weird but it's still early days for me I really need my head to be in the right place regarding all of this as it will be my rudder to help steer me through whatever twists and turns my emotional and mental road ahead throw up.

 

Thanks in advance for any thoughts.
User
Posted 22 Oct 2018 at 13:25

Well, I have not had mine removed as it was not an option so not the same as you.  But, one consultant said he was going to 'cure' me, his word, and so I would have radiotherapy and then hormone therapy for 3 years.  The consultants at the hospital raised their eyebrows when I said I was going to be 'cured'.  No, they said, you will be treated, not cured.  That was a low moment.

At a recent prostate cancer seminar one GP said that prostate cancer should not be seen as a cancer in the same terms as the others (slow growing etc) and so he preferred to call it a chronic condition as the patient will need care for years and years.  I think this is what you need to come to terms with.  It doesn't matter if we've had the op, hormone therapy or radiotherapy, they all have side effects and some are very debilitating and you may have them for life.

Early days for you and hopefully all the cancer has been removed but you still have to live with (possibly) urinary problems, erectile dysfunction etc plus the not knowing if all the cancer cells were removed and if they will return some time ahead.  On that front, at least you still have the option of radiotherapy if your PSA rises in a few months time and becomes a concern so in effect a second chance to remove it.  

Your question is a really interesting one and has had me thinking!  Only my opinion but I would say to anyone who asks, I've had an operation to remove the cancer and I'm in remission.  That way, it is an open ended statement with no pre-conditions attached.   

 

P.S. You are not being selfish or weird - just normal 

Edited by member 22 Oct 2018 at 13:26  | Reason: Not specified

User
Posted 22 Oct 2018 at 13:26
Hi Andy, firstly it's good news that you have negative margins. You haven't said what your PSA is post-op, but ultimately it should be as low as 0.02, which is a low as the machine will go, although it may take some weeks to finally get this reading as it can take time for any residual PSA to dissipate in your bloodstream. In relation to how you're feeling and what you should say, be kind to yourself, as you've said, it really is early days for you and you still need time to come terms with the diagnosis and subsequent treatment. The speed that everything happens after you're diagnosed doesn't leave time for things to sink in fully. I'm 11 months post-op with positive margins and PSA stable at 0.05, but I sometimes have down days, although I'm still positive about the future. You're effectively in remission and your friends and family need to understand this, you've had prostate cancer, the doctors have removed it but once you've had it, there's always the possibility it could come back.

From my personal experience, I have friends and family who were never off the phone during diagnosis and in the weeks after surgery, but now calls are few and far between, it's all done and dusted for them, but for us it goes on and we deal with whatever life throws at us day by day. Positivity has it's place for sure, and no-one wants to be negative and miserable, but cancer is now part of our lives and I deal with it by talking about it, the good, the bad and the ugly, and where possible, have a laugh about it. Friends and family will either laugh with me or bugger-off and be miserable in their own selfish world.

Hope your recovery continues to go well and may your remission be long.

Best wishes, Mark.

User
Posted 22 Oct 2018 at 13:31

Andy

I get what you are feeling.  You look well and generally feel well and so everybody thinks you're ok.  And then they tell you to be positive, which is, they say, 90% of the battle.  They look disapprovingly on you if you express any kind of view that the cancer may not have been successfully removed or may come back.

Cancer, to me, has been an education.  It's a mind game.  I was diagnosed two years ago and, since then, there hasn't been a day that the thought that I have have cancer hasn't entered my mind, several times a day.  I had my prostatectomy and have since had salvage radiotherapy.  I'm on hormone therapy.  I'm only 48.  It isn't fair, but then there are a lot of people a lot worse off than me.  Without sounding self-indulgent, I have the right to be emotional, angry, frightened.  I do try, however, not to let that affect others around me.  

I feel robbed.  Robbed of my health.  Robbed of my sex life.  Robbed of my dignity - I've had recent problems with my bowel movements and it has been a very messy problem.  I'm tired because of the hormone therapy.  I've put weight on and I think I'm getting man-boobs, but that might just be paranoia.

Nonetheless, I remain relatively positive and upbeat.

You may well be cured of cancer, and let's hope you are.  At your stage, I was still telling people I had cancer.  Now, since I'm on hormone therapy, I suppose a more accurate phrase could be that I am being treated for cancer.  Or, maybe we could say that we are living with cancer.  Until I get official confirmation from my oncologist that the cancer is behind me, I shall say I am living with cancer, although I hope that as the years go by it will become less and less of an invasion in my mind.  Once the oncologist gives the green light, then I'll be able to say that I had cancer (past tense).  Neither you nor I can say that at the moment With any degree of certainty.

I've just returned from a wonderful trip to South Korea and Japan.  I'm off to Antarctica in November and the Dominican Republic in December.  I'm going to travel as much as I can now just in case my situation worsens and travel insurance premiums become more expensive than the holiday itself!!! 

We have a new normal, Andy, one we wouldn't have chosen and one we wouldn't have understood until it happened upon us.  We have to navigate life a little bit differently now.

I hope this sounds more philosophical than depressive, because I'm not depressed or negative today, just jet-lagged.

Ulsterman

Edited by member 22 Oct 2018 at 14:17  | Reason: Not specified

User
Posted 22 Oct 2018 at 14:21

Hello Andy,

I had a RARP ( da Vinci ) back in June 2014 ( click on anyones profile to read their details etc ) 

Since surgery over 52 months ago my PSA level has been classed as undetectable  ( <0.01 actual reading  ) but....... I don't regard myself as 'cured' 

I describe myself as having had surgery for prostate cancer and am currently in remission.
Of course, I'm hoping my remission will last for many more years and the cancer will never come back....but if it does, then I would describe myself as "currently having treatment for a recurrence of prostate cancer"... 

When people local to me see me out and about looking fit and healthy they automatically assume that the cancer is gone forever...what they don't see of course are the pads I have to wear in order to manage a leaking problem I'm left with as result of 'successful' surgery... 
Neither do they see the caverject injections I have to use in order to have as near a 'normal' sex life as possible...also as a result of 'successful ' surgery.. 
If people are interested enough I do tell them about these side effects that I'm left with, but I don't push it onto anyone. Most quite wrongly assume that everything is now hunky dory and so don't ask...
I'm not complaining, as I feel very lucky to be still around and enjoying life and on no medication ( other than the caverject lol! )  ... but when my latest PSA blood test is due I still feel very nervous ..I doubt I'll ever get used to that... 
You do adjust to your new 'normal' over the months / years ahead... everyone handles stuff in different ways depending on their outlook and personality I guess... There is no right or wrong way ..

Best Wishes 
Luther

User
Posted 22 Oct 2018 at 14:59

Hi Andy,

I am a nearly a year on from a raised PSA and five months post-prostatectomy. I am of the same opinion as Mr Angry’s GP at the meeting as I don’t think all ‘cancers’ should be called that. I prefer to think of PCa more as ‘a little difficulty down below’.

My local oncologist foolishly told me I am cured, like you. He turned his computer screen to show me the prognostication Nomogram from the Memorial Sloan Kettering Cancer Center, and I showed him my IPad which had exactly the same image from the same website, which said I have a fair chance of recurrence. After a nearly year of intensive study into this disease, including invaluable help from people on this forum, I like a good barrister, usually know the answer a medic will give me before I ask a question!

It also estimated I have a 96% of surviving prostate cancer for 15 years. So basically, I am not bothered by it at all. I have had no sleepless nights about it (except that night in hospital when the patient call alarms kept going off), and have no psychological problems whatever. I am 62 and you have to have some cause of death on your death certificate!

I checked their Nomograms, inputting different data, and it seems that if you don’t have biochemical recurrence within the first twelve months, then the chances of it not recurring rise exponentially. I had some slight extra-prostatic extension and two out of fourteen lymph node involvement, so no way am I ‘cured’. I had no symptoms before my diagnosis and post-operative I have undetectable PSA and only ED and a missing 2”..........

My advice to you is to stop worrying about it, you have had the op. and you are ‘cured’. Your tumour is in a medical incinerator somewhere. If PCa does ever recur, there are lots of tools in the box to treat it and thus preserve nature.

I am off to see an eminent prostate cancer oncologist later in the month to see if he will concur with his colleague’s ‘cure’ diagnosis.

Like me, you haven’t got cancer now, so chill and carry on. I hope your recuperation is going well.

If you can be bothered to check statistics, here’s the Nomogram the cancer doctors use.

Cheers, John.

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

Edited by member 22 Oct 2018 at 15:10  | Reason: Not specified

User
Posted 22 Oct 2018 at 16:13

Originally Posted by: Online Community Member
Hi Andy, firstly it's good news that you have negative margins. You haven't said what your PSA is post-op, but ultimately it should be as low as 0.02, which is a low as the machine will go

......

You're effectively in remission and your friends and family need to understand this, you've had prostate cancer, the doctors have removed it but once you've had it, there's always the possibility it could come back.
Best wishes, Mark.

 

0.02 may be the lowest reading at your hospital Mark but that will not be the same at all hospitals / laboratories. Where we live, the lowest reading you can get now is <0.1 and some hospital machines are calibrated to have a lowest reading of 0.03 or 0.05

 

Also, no-one is technically in remission until they have been disease-free for 10 years - that is the NICE threshold. Many doctors will say a man is in remission once he has achieved 5 years with an undetectable PSA, though. 

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

User
Posted 22 Oct 2018 at 17:24

Originally Posted by: Online Community Member

 I am of the same opinion as Mr Angry’s GP at the meeting as I don’t think all ‘cancers’ should be called that. I prefer to think of PCa more as ‘a little difficulty down below’.

 

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



I wish I could tell my father that it was a 'little difficulty down below'
He was dead and buried at the age of 55 due to prostate cancer that had metastasised .... Don't underestimate this disease because it is quite capable of killing you, as many wives and families will know... 

Best Wishes 
Luther 

Edited by member 22 Oct 2018 at 17:26  | Reason: Incorrect punctuation

User
Posted 22 Oct 2018 at 17:41

Hi Andy, 

Another option is not to tell anyone.  I've told very few, just a few family who don't live near me. 

I don't want anyone to ask me or feel unsure about whether to ask me,  nor to be thinking I'm ill, talking behind my back, or that I've changed.   As far as I'm concerned to the rest of the world there is no difference between me now and how I've ever been.   To myself I'm optimistic, but statistically there's a good chance it will come back due my Gleason, so I've read.

One difference is I'm now more empathetic and sympathetic towards anyone who is ill.  

Regards

Edited by member 22 Oct 2018 at 17:42  | Reason: Not specified

User
Posted 22 Oct 2018 at 19:50
Folks, may I suggest my preferred term "PCa survival" is the way to go. Forget "cure". That will only be proved when you are on your slab and a death certificate is being framed. It doesn't matter. You had it and survived. That will do, surely?

AC

User
Posted 23 Oct 2018 at 00:09

Originally Posted by: Online Community Member

The only concern I have is that by talking about it people become more aware and it could help someone.

 

You only have to look at the Bill Turnbull/Stephen Fry effect to know this is true.  

Show Most Thanked Posts
User
Posted 22 Oct 2018 at 13:25

Well, I have not had mine removed as it was not an option so not the same as you.  But, one consultant said he was going to 'cure' me, his word, and so I would have radiotherapy and then hormone therapy for 3 years.  The consultants at the hospital raised their eyebrows when I said I was going to be 'cured'.  No, they said, you will be treated, not cured.  That was a low moment.

At a recent prostate cancer seminar one GP said that prostate cancer should not be seen as a cancer in the same terms as the others (slow growing etc) and so he preferred to call it a chronic condition as the patient will need care for years and years.  I think this is what you need to come to terms with.  It doesn't matter if we've had the op, hormone therapy or radiotherapy, they all have side effects and some are very debilitating and you may have them for life.

Early days for you and hopefully all the cancer has been removed but you still have to live with (possibly) urinary problems, erectile dysfunction etc plus the not knowing if all the cancer cells were removed and if they will return some time ahead.  On that front, at least you still have the option of radiotherapy if your PSA rises in a few months time and becomes a concern so in effect a second chance to remove it.  

Your question is a really interesting one and has had me thinking!  Only my opinion but I would say to anyone who asks, I've had an operation to remove the cancer and I'm in remission.  That way, it is an open ended statement with no pre-conditions attached.   

 

P.S. You are not being selfish or weird - just normal 

Edited by member 22 Oct 2018 at 13:26  | Reason: Not specified

User
Posted 22 Oct 2018 at 13:26
Hi Andy, firstly it's good news that you have negative margins. You haven't said what your PSA is post-op, but ultimately it should be as low as 0.02, which is a low as the machine will go, although it may take some weeks to finally get this reading as it can take time for any residual PSA to dissipate in your bloodstream. In relation to how you're feeling and what you should say, be kind to yourself, as you've said, it really is early days for you and you still need time to come terms with the diagnosis and subsequent treatment. The speed that everything happens after you're diagnosed doesn't leave time for things to sink in fully. I'm 11 months post-op with positive margins and PSA stable at 0.05, but I sometimes have down days, although I'm still positive about the future. You're effectively in remission and your friends and family need to understand this, you've had prostate cancer, the doctors have removed it but once you've had it, there's always the possibility it could come back.

From my personal experience, I have friends and family who were never off the phone during diagnosis and in the weeks after surgery, but now calls are few and far between, it's all done and dusted for them, but for us it goes on and we deal with whatever life throws at us day by day. Positivity has it's place for sure, and no-one wants to be negative and miserable, but cancer is now part of our lives and I deal with it by talking about it, the good, the bad and the ugly, and where possible, have a laugh about it. Friends and family will either laugh with me or bugger-off and be miserable in their own selfish world.

Hope your recovery continues to go well and may your remission be long.

Best wishes, Mark.

User
Posted 22 Oct 2018 at 13:31

Andy

I get what you are feeling.  You look well and generally feel well and so everybody thinks you're ok.  And then they tell you to be positive, which is, they say, 90% of the battle.  They look disapprovingly on you if you express any kind of view that the cancer may not have been successfully removed or may come back.

Cancer, to me, has been an education.  It's a mind game.  I was diagnosed two years ago and, since then, there hasn't been a day that the thought that I have have cancer hasn't entered my mind, several times a day.  I had my prostatectomy and have since had salvage radiotherapy.  I'm on hormone therapy.  I'm only 48.  It isn't fair, but then there are a lot of people a lot worse off than me.  Without sounding self-indulgent, I have the right to be emotional, angry, frightened.  I do try, however, not to let that affect others around me.  

I feel robbed.  Robbed of my health.  Robbed of my sex life.  Robbed of my dignity - I've had recent problems with my bowel movements and it has been a very messy problem.  I'm tired because of the hormone therapy.  I've put weight on and I think I'm getting man-boobs, but that might just be paranoia.

Nonetheless, I remain relatively positive and upbeat.

You may well be cured of cancer, and let's hope you are.  At your stage, I was still telling people I had cancer.  Now, since I'm on hormone therapy, I suppose a more accurate phrase could be that I am being treated for cancer.  Or, maybe we could say that we are living with cancer.  Until I get official confirmation from my oncologist that the cancer is behind me, I shall say I am living with cancer, although I hope that as the years go by it will become less and less of an invasion in my mind.  Once the oncologist gives the green light, then I'll be able to say that I had cancer (past tense).  Neither you nor I can say that at the moment With any degree of certainty.

I've just returned from a wonderful trip to South Korea and Japan.  I'm off to Antarctica in November and the Dominican Republic in December.  I'm going to travel as much as I can now just in case my situation worsens and travel insurance premiums become more expensive than the holiday itself!!! 

We have a new normal, Andy, one we wouldn't have chosen and one we wouldn't have understood until it happened upon us.  We have to navigate life a little bit differently now.

I hope this sounds more philosophical than depressive, because I'm not depressed or negative today, just jet-lagged.

Ulsterman

Edited by member 22 Oct 2018 at 14:17  | Reason: Not specified

User
Posted 22 Oct 2018 at 14:21

Hello Andy,

I had a RARP ( da Vinci ) back in June 2014 ( click on anyones profile to read their details etc ) 

Since surgery over 52 months ago my PSA level has been classed as undetectable  ( <0.01 actual reading  ) but....... I don't regard myself as 'cured' 

I describe myself as having had surgery for prostate cancer and am currently in remission.
Of course, I'm hoping my remission will last for many more years and the cancer will never come back....but if it does, then I would describe myself as "currently having treatment for a recurrence of prostate cancer"... 

When people local to me see me out and about looking fit and healthy they automatically assume that the cancer is gone forever...what they don't see of course are the pads I have to wear in order to manage a leaking problem I'm left with as result of 'successful' surgery... 
Neither do they see the caverject injections I have to use in order to have as near a 'normal' sex life as possible...also as a result of 'successful ' surgery.. 
If people are interested enough I do tell them about these side effects that I'm left with, but I don't push it onto anyone. Most quite wrongly assume that everything is now hunky dory and so don't ask...
I'm not complaining, as I feel very lucky to be still around and enjoying life and on no medication ( other than the caverject lol! )  ... but when my latest PSA blood test is due I still feel very nervous ..I doubt I'll ever get used to that... 
You do adjust to your new 'normal' over the months / years ahead... everyone handles stuff in different ways depending on their outlook and personality I guess... There is no right or wrong way ..

Best Wishes 
Luther

User
Posted 22 Oct 2018 at 14:59

Hi Andy,

I am a nearly a year on from a raised PSA and five months post-prostatectomy. I am of the same opinion as Mr Angry’s GP at the meeting as I don’t think all ‘cancers’ should be called that. I prefer to think of PCa more as ‘a little difficulty down below’.

My local oncologist foolishly told me I am cured, like you. He turned his computer screen to show me the prognostication Nomogram from the Memorial Sloan Kettering Cancer Center, and I showed him my IPad which had exactly the same image from the same website, which said I have a fair chance of recurrence. After a nearly year of intensive study into this disease, including invaluable help from people on this forum, I like a good barrister, usually know the answer a medic will give me before I ask a question!

It also estimated I have a 96% of surviving prostate cancer for 15 years. So basically, I am not bothered by it at all. I have had no sleepless nights about it (except that night in hospital when the patient call alarms kept going off), and have no psychological problems whatever. I am 62 and you have to have some cause of death on your death certificate!

I checked their Nomograms, inputting different data, and it seems that if you don’t have biochemical recurrence within the first twelve months, then the chances of it not recurring rise exponentially. I had some slight extra-prostatic extension and two out of fourteen lymph node involvement, so no way am I ‘cured’. I had no symptoms before my diagnosis and post-operative I have undetectable PSA and only ED and a missing 2”..........

My advice to you is to stop worrying about it, you have had the op. and you are ‘cured’. Your tumour is in a medical incinerator somewhere. If PCa does ever recur, there are lots of tools in the box to treat it and thus preserve nature.

I am off to see an eminent prostate cancer oncologist later in the month to see if he will concur with his colleague’s ‘cure’ diagnosis.

Like me, you haven’t got cancer now, so chill and carry on. I hope your recuperation is going well.

If you can be bothered to check statistics, here’s the Nomogram the cancer doctors use.

Cheers, John.

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

Edited by member 22 Oct 2018 at 15:10  | Reason: Not specified

User
Posted 22 Oct 2018 at 16:13

Originally Posted by: Online Community Member
Hi Andy, firstly it's good news that you have negative margins. You haven't said what your PSA is post-op, but ultimately it should be as low as 0.02, which is a low as the machine will go

......

You're effectively in remission and your friends and family need to understand this, you've had prostate cancer, the doctors have removed it but once you've had it, there's always the possibility it could come back.
Best wishes, Mark.

 

0.02 may be the lowest reading at your hospital Mark but that will not be the same at all hospitals / laboratories. Where we live, the lowest reading you can get now is <0.1 and some hospital machines are calibrated to have a lowest reading of 0.03 or 0.05

 

Also, no-one is technically in remission until they have been disease-free for 10 years - that is the NICE threshold. Many doctors will say a man is in remission once he has achieved 5 years with an undetectable PSA, though. 

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

User
Posted 22 Oct 2018 at 16:24
AndyR, you are still a cancer patient and should not feel the need to apologise for feeling sad, upset, angry. NICE and the NHS are so clear that you are a cancer patient, they will allow you to have free prescriptions for 5 years as a result of your diagnosis. If in 5 years you are still having treatment for he cancer or for the side effects of the cancer treatment, then they will give you another 5 years of free prescriptions, and again and again.

Oncologists (apart from the idiots with giant egos) will say there is no such thing as a cure for cancer; only remission. Some are lucky enough to get full remission for the rest of their lives but not all. If asked, my husband tells people the truth; he had treatment and is being monitored. Many know about the side effects he has had to deal with and will ask him things like 'do you still need injections to get it up?' to which they all laugh but it means the impact is never minimised. We also have a couple of friends that have died young as a result of PCa and a couple of friends who ended their own lives so mental health & low mood are not topics that are shied away from in our social group.

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

User
Posted 22 Oct 2018 at 17:24

Originally Posted by: Online Community Member

 I am of the same opinion as Mr Angry’s GP at the meeting as I don’t think all ‘cancers’ should be called that. I prefer to think of PCa more as ‘a little difficulty down below’.

 

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



I wish I could tell my father that it was a 'little difficulty down below'
He was dead and buried at the age of 55 due to prostate cancer that had metastasised .... Don't underestimate this disease because it is quite capable of killing you, as many wives and families will know... 

Best Wishes 
Luther 

Edited by member 22 Oct 2018 at 17:26  | Reason: Incorrect punctuation

User
Posted 22 Oct 2018 at 17:36
My point Luther, was that PCa is not the virtual death sentence that pancreatic, lung and liver cancers are, yet they are all called ‘cancer’ when they are totally different diseases infecting body cells in different ways.

Sorry about your Dad. I am totally philosophical about my cancer, it may or not be fatal, but as I said earlier, I will have to die of something.

I am lucky as I had no symptoms, no pain, and really no post-operative problems, so if I have recurrence and am in agony from metastases, I might not be so light-hearted about my situation!

Cheers, John.

User
Posted 22 Oct 2018 at 17:41

Hi Andy, 

Another option is not to tell anyone.  I've told very few, just a few family who don't live near me. 

I don't want anyone to ask me or feel unsure about whether to ask me,  nor to be thinking I'm ill, talking behind my back, or that I've changed.   As far as I'm concerned to the rest of the world there is no difference between me now and how I've ever been.   To myself I'm optimistic, but statistically there's a good chance it will come back due my Gleason, so I've read.

One difference is I'm now more empathetic and sympathetic towards anyone who is ill.  

Regards

Edited by member 22 Oct 2018 at 17:42  | Reason: Not specified

User
Posted 22 Oct 2018 at 18:02

Originally Posted by: Online Community Member
My point Luther, was that PCa is not the virtual death sentence that pancreatic, lung and liver cancers are, yet they are all called ‘cancer’ when they are totally different diseases infecting body cells in different ways.

Sorry about your Dad. I am totally philosophical about my cancer, it may or not be fatal, but as I said earlier, I will have to die of something.

I am lucky as I had no symptoms, no pain, and really no post-operative problems, so if I have recurrence and am in agony from metastases, I might not be so light-hearted about my situation!

Cheers, John.


No problem Bollinge!  .. 

2 years ago ( on 23rd Dec 2016 ) my wife passed away due to metastasised renal carcinoma ..When first diagnosed ( in July that same year ) she was given 3 months....she actually lived for 5 months...so I understand the point you make.... 

You're not so light hearted about your situation really are you?  
Or why would you be seeking further opinions / reassurance  from eminent professionals regarding your current situation? 
As I've stated on numerous posts, we're  all different, and deal with stuff in our own way..so don't worry about it... I understand  

I wish you well for the future and sincerely hope you have a positive and successful outcome as a result of your treatment so far... 

I had no symptoms before diagnosis either ( check out my profile info ) 
My surgery and recovery was non eventful ( I was in hospital for less than 24 hours ) 
In your consultant's  words,  I'm cured lol! 
Best Wishes 
Luther 


Edited by member 22 Oct 2018 at 18:08  | Reason: Not specified

User
Posted 22 Oct 2018 at 18:04
Hi Peter,

I think I have written here before about a friend who had PCa and who was very coy and embarrassed about it he confided in me but said - “Don’t advertise it in the Telegraph” - he’s all clear 13 years later. Two other extremely close friends only admitted to their PCa once I told them I had it.

I don’t really understand the embarrassment about it. It’s not as if you’ve contracted syphilis from some hooker!

Cheers, John.

User
Posted 22 Oct 2018 at 18:16
Luther, I am a control freak, so I like to have every base covered, hence my forthcoming second opinion at the Royal Marsden at which the consultant will tell me I still have cancer. Or might say ‘You are cured’! Ha ha....

As I said, I have done enough research into this subject for a degree course dissertation, so I am totally chilled about my situation, and the only psychological effect is the urge to try and help others with this disease, like you!

Cheers, John

User
Posted 22 Oct 2018 at 18:43

Originally Posted by: Online Community Member
Luther, I am a control freak, so I like to have every base covered, hence my forthcoming second opinion at the Royal Marsden at which the consultant will tell me I still have cancer. Or might say ‘You are cured’! Ha ha....

As I said, I have done enough research into this subject for a degree course dissertation, so I am totally chilled about my situation, and the only psychological effect is the urge to try and help others with this disease, like you!

Cheers, John



Haha! 
Yeah right! ... 
I couldn't give a s**t how many degrees you've got .... ( I have them too! ) but not in prostate cancer lol! 

It's good to have as many 'takes'  on our situation as possible...so keep on expressing your opinion on the subject ( as I know you will )  ..and I'll do the same when I think I need to stick me oar in .. 

Unfortunately, cancer of any kind is something you have no control over. ( so being a control freak must really freak you out! )  ..Other than being vigilant and acting swiftly when discovered ... not much else you can do..other than seeking the help and medical assistance of the 'experts' 
I'm sure all of the various opinions and experiences  on this forum will help others in a similar situation to ours...and that's why I still chip in from time to time..
PS 
Your bloke or blokess at the Royal Marsden won't give you any more assurance than I will ....save yer money 

Best Wishes 
Luther 

User
Posted 22 Oct 2018 at 19:11

Originally Posted by: Online Community Member

PS 
Your bloke or blokess at the Royal Marsden won't give you any more assurance than I will ....save yer money 

Best Wishes 
Luther 

My consultation at the Royal Marsden is on the NHS, as all my treatment has been apart from my initial consultation with the Professor, which cost £250 for twenty minutes of his time.

I really cannot convey how chilled I am about my particular condition, and I am so sad that others equate a prostate cancer diagnosis as an imminent death sentence.

Cheers, John.

User
Posted 22 Oct 2018 at 19:50
Folks, may I suggest my preferred term "PCa survival" is the way to go. Forget "cure". That will only be proved when you are on your slab and a death certificate is being framed. It doesn't matter. You had it and survived. That will do, surely?

AC

User
Posted 22 Oct 2018 at 19:54

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

PS 
Your bloke or blokess at the Royal Marsden won't give you any more assurance than I will ....save yer money 

Best Wishes 
Luther 

My consultation at the Royal Marsden is on the NHS, as all my treatment has been apart from my initial consultation with the Professor, which cost £250 for twenty minutes of his time.

I really cannot convey how chilled I am about my particular condition, and I am so sad that others equate a prostate cancer diagnosis as an imminent death sentence.

Cheers, John.



Ok John, 
Fair comment ....and of course  you're fully entitled to pursue another opinion... 
Stay chilled... and I hope the subsequent verdict will give you peace of mind... 
Sadly for others their results are not so encouraging....although as you say, it's not  an imminent death sentence...and they have every reason to stay positive and will more than likely survive for many many years to come...especially with new treatments coming online all the time.. 
I wouldn't want to swap places with these people though... 
Your consultant at the RM still won't be able to give you any concrete assurance about your prognosis 
Bung me 500 quid and I'll tell you the same as he/ she does lol! 
PS 
I have a Nigerian Bank Account ....but don't be put off ... 

Luther 
 

User
Posted 22 Oct 2018 at 23:40

Hi John, I'm not embarrassed about it.  The opposite to that could be to say I'm not seeking sympathy or cups of tea, ha.   However it's that I don't feel there's any need for anyone to know and the reasons I said above.  The only concern I have is that by talking about it people become more aware and it could help someone.

User
Posted 23 Oct 2018 at 00:09

Originally Posted by: Online Community Member

The only concern I have is that by talking about it people become more aware and it could help someone.

 

You only have to look at the Bill Turnbull/Stephen Fry effect to know this is true.  

 
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