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Scared of future

User
Posted 07 Nov 2020 at 19:33

Hi,

I am 51 and 2 weeks ago informed I had cancer on both sides of my prostate.

I started the journey by chance when work arranged for men over 50 to have a free PSA test in December 2019.  If I’m totally honest, I wasn’t going to go as I thought only men over 60 can get PC.  You can imagine my surprise then when colleagues who I attended with on the day received emails informing them their results were within a normal range.  I received a letter at home advising me to make an appointment to see my GP as my PSA level was 4.7

Still none the wiser I made the GP appointment and when I attended was shocked that my GP was annoyed my work had arranged this testing and then passing the problem onto the NHS.   She took the letter off me as she was going to write a letter of complaint to my employer!

She said she no option however but to give me an internal examination as the letter was forcing her hand.  She confirmed my prostate was enlarged and a small hard bit on the left.  Due to this I was referred for an MRI Scan.

I had a further PSA test which showed my level had risen to 5.5

MRI scan finally came through in March 2020 and showed a 6mm PIRADS3 disease.

Due to COVID I had to wait for a biopsy until 22nd Sept 2020.  Two weeks ago I was informed my biopsy results:

4 out of 6 samples on my left had cancer and 2 out of 6 samples on my right had cancer.  I have a Gleason score of 3+3=6 and T2(c)

The consultant advised only 2 treatments due to cancer on both sides.  1) Radical Prostatectomy or 2) Radiotherapy with hormone treatment first.  I’ll be honest I do not fancy HT having read the side effects!!

I’ve also been advised that surgery may be 6-9 months away.

My mum passed away from cancer and the memories of how she suffered still haunts me and I’m beginning to be anxious about my family and my future.  Is this normal or am I worrying about something that will be cured if I have the surgery and my life will return to normal?

Thanks in advance.

 

 

User
Posted 07 Nov 2020 at 20:10

Hi Neil

 

You may want to look into the Royal Marsden's Pace A trial.   From the information you have supplied, it would appear that you would qualify for the trial.   You don't necessarily need to live in the catchment area to be treated at the Marsden (Fulham Road).

 

My husband was T2C, PSA around 4, Gleason 3+4.   

 

The Pace A trial is either going to assign you to surgery or to Cyberknife radiation which is given in a high dose over five sessions with no hormone therapy.   Hormone therapy has been shown to offer no additional benefit with this type of radiation.  

My husband was assigned to the Cyberknife treatment and, after two years, his PSA is now 0.16.

Pleased to supply you with any further info. if you're interested.

User
Posted 07 Nov 2020 at 20:25

What a rude and ignorant GP!

She obviously has no idea about prostate cancer, like most of them, whose knowledge of it probably extends to a week’s course segment when they were at medical college ten years ago!

Anyway, your Gleason 3+3=6 score is the least worst grade you can get, and if you had critical illness insurance with many insurance companies, they wouldn’t pay out on your diagnosis, as it’s not classed as ‘life-threatening’.

Anyway, more positively, order the fully comprehensive ‘Tool Kit’ information folder from the publications section of this website, and also talk to an oncologist about the possibility of radiotherapy or nuclear medicine therapies.

You might also choose to do nothing for a year or two or around seven years if your GP was as useless as mine (which it seems she is), and refused me test(s) as the outcome is likely to be the same.

Most prostate cancers are slow-growing, so you have plenty of time to decide what treatment (if any) to embark upon. Many men once they hear the words ‘The Big C’ want to have it excised immediately. This should not be in your case.

If I were you, I would chill (if you can, after your diagnosis - which is not a death sentence) for a few months, and have a few more quarterly PSA tests to see if there is any rise, and get second opinions from another urologist and one from an oncologist, and keep in touch with us here if you have any more questions.

Best of luck.

Cheers, John.

Edited by member 07 Nov 2020 at 21:34  | Reason: Not specified

User
Posted 08 Nov 2020 at 11:07
It is a shock to be diagnosed with prostate cancer out of the blue - it's an experience that many of us have been though, so we have exactly how you must be feeling.

The good news is that a Gleason 3+3 result is as good as it gets. It's vanishingly unlikely to kill you.

How you proceed really depends how you feel about knowing you have cancer. You could go on active surveillance - regular monitoring to check the progress of the cancer - or you might feel that given that you're going to need treatment at some point you may as well get it over and done with. Only you know what's right for you.

Personally I went down the HT/RT road (helped by the fact that it was the treatment strongly recommended for me) and don't regret it. HT wasn't too awful at all, and I had RT in Feb/Mar 2019 with relatively mild side effects. 18 months later and life is good with very few permanent side-effects.

Best wishes,

Chris

User
Posted 09 Nov 2020 at 17:21

Hi 

Sorry to hear you are joining our club but you will get lots of advice from real members unlike your dumb GP.

First thing is to dump your GP and thank your company for finding the problem and maybe saving the NHS money if it had been left to show symptoms.I was lucky and mine was picked up while having a private medical to renew my 7.5 ton licence and my doctor arranged more tests with no symptoms at the time.

Your test at 3+3 is a good low result and  a lot easer to work on.Mine was 3+4 and i had Brachytherapy in 2016

and four years on i am doing well, keep your chin up mate you can beat it.

 

Regards John.

User
Posted 09 Nov 2020 at 19:21
All above , good advice , and yes that doctor should be ashamed of herself and of being a doctor ! Rant over . Yes I can only agree , your info about your results so far, way down the spectrum . I found it most helpful in the fact I personally knew a lot of friends /guys who been thru the treatment 1 in 8 of men get pc . I went down the ht/rt route 20 fractions ok a few side effects but got thru it ok . Now just on 6 monthly psa tests .
User
Posted 09 Nov 2020 at 23:07

Sorry you find yourself here

 I was PSA 5.8 and Gleason 3+4 at diagnosis over 2 years ago now

Had surgery in March this year. PSA now undetectable and life virtually back to normal. 

Hope that helps...and good luck

Show Most Thanked Posts
User
Posted 07 Nov 2020 at 20:10

Hi Neil

 

You may want to look into the Royal Marsden's Pace A trial.   From the information you have supplied, it would appear that you would qualify for the trial.   You don't necessarily need to live in the catchment area to be treated at the Marsden (Fulham Road).

 

My husband was T2C, PSA around 4, Gleason 3+4.   

 

The Pace A trial is either going to assign you to surgery or to Cyberknife radiation which is given in a high dose over five sessions with no hormone therapy.   Hormone therapy has been shown to offer no additional benefit with this type of radiation.  

My husband was assigned to the Cyberknife treatment and, after two years, his PSA is now 0.16.

Pleased to supply you with any further info. if you're interested.

User
Posted 07 Nov 2020 at 20:25

What a rude and ignorant GP!

She obviously has no idea about prostate cancer, like most of them, whose knowledge of it probably extends to a week’s course segment when they were at medical college ten years ago!

Anyway, your Gleason 3+3=6 score is the least worst grade you can get, and if you had critical illness insurance with many insurance companies, they wouldn’t pay out on your diagnosis, as it’s not classed as ‘life-threatening’.

Anyway, more positively, order the fully comprehensive ‘Tool Kit’ information folder from the publications section of this website, and also talk to an oncologist about the possibility of radiotherapy or nuclear medicine therapies.

You might also choose to do nothing for a year or two or around seven years if your GP was as useless as mine (which it seems she is), and refused me test(s) as the outcome is likely to be the same.

Most prostate cancers are slow-growing, so you have plenty of time to decide what treatment (if any) to embark upon. Many men once they hear the words ‘The Big C’ want to have it excised immediately. This should not be in your case.

If I were you, I would chill (if you can, after your diagnosis - which is not a death sentence) for a few months, and have a few more quarterly PSA tests to see if there is any rise, and get second opinions from another urologist and one from an oncologist, and keep in touch with us here if you have any more questions.

Best of luck.

Cheers, John.

Edited by member 07 Nov 2020 at 21:34  | Reason: Not specified

User
Posted 08 Nov 2020 at 11:07
It is a shock to be diagnosed with prostate cancer out of the blue - it's an experience that many of us have been though, so we have exactly how you must be feeling.

The good news is that a Gleason 3+3 result is as good as it gets. It's vanishingly unlikely to kill you.

How you proceed really depends how you feel about knowing you have cancer. You could go on active surveillance - regular monitoring to check the progress of the cancer - or you might feel that given that you're going to need treatment at some point you may as well get it over and done with. Only you know what's right for you.

Personally I went down the HT/RT road (helped by the fact that it was the treatment strongly recommended for me) and don't regret it. HT wasn't too awful at all, and I had RT in Feb/Mar 2019 with relatively mild side effects. 18 months later and life is good with very few permanent side-effects.

Best wishes,

Chris

User
Posted 09 Nov 2020 at 17:21

Hi 

Sorry to hear you are joining our club but you will get lots of advice from real members unlike your dumb GP.

First thing is to dump your GP and thank your company for finding the problem and maybe saving the NHS money if it had been left to show symptoms.I was lucky and mine was picked up while having a private medical to renew my 7.5 ton licence and my doctor arranged more tests with no symptoms at the time.

Your test at 3+3 is a good low result and  a lot easer to work on.Mine was 3+4 and i had Brachytherapy in 2016

and four years on i am doing well, keep your chin up mate you can beat it.

 

Regards John.

User
Posted 09 Nov 2020 at 19:21
All above , good advice , and yes that doctor should be ashamed of herself and of being a doctor ! Rant over . Yes I can only agree , your info about your results so far, way down the spectrum . I found it most helpful in the fact I personally knew a lot of friends /guys who been thru the treatment 1 in 8 of men get pc . I went down the ht/rt route 20 fractions ok a few side effects but got thru it ok . Now just on 6 monthly psa tests .
User
Posted 09 Nov 2020 at 23:07

Sorry you find yourself here

 I was PSA 5.8 and Gleason 3+4 at diagnosis over 2 years ago now

Had surgery in March this year. PSA now undetectable and life virtually back to normal. 

Hope that helps...and good luck

User
Posted 10 Nov 2020 at 01:48

Thank you everyone, your comments are much appreciated.  Neil

 
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