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Good news tinged with sadness

User
Posted 11 Apr 2022 at 13:43

I realised last night that I had not got the results yet for my first post HIFU PSA test taken on 31st March and needed for a Hospital telephone appointment this morning.  So off to GP's surgery first thing but receptionist would not give it to me as my GP had not seen first, due to his being on annual leave.  Anyway, receptionist managed to get another Dr to authorise so I had this to hand for the appointment  The figure was 0.02 which is the lowest since I was first diagnosed including post RT and post previous HIFU in 2015. So I am very pleased with that as was the Dr who rang me today.  The plan is to do 4 monthly PSA tests and another multiparametric MRI in 12 months from the HIFU.


Going back a few years, had I accepted the opinion of UCLH, formed by their interpretation of a Choline Pet scan they gave me, which was that cancer was in an iliac lymph node,  I would have been on HT.  However, The Royal Marsden and my RT treating Hospital in Heidelberg were not convinced and UCLH were not prepared to give me the 68 Gallium PSMA test on the NHS, so I had it done privately.  There was no evidence from this that the aforementioned iliac node was affected, although a very small tumour was seen within my Prostate and this was subsequently confirmed by MRI and Biopsy.  So instead of being treated systemically, I was able to have HIFU again and still avoid HT (for at least more time).   For me the PSMA scan was a treatment changer and the second HIFU looks to have produced a good result so far and with no side effects, (ED resulting  earlier due to RT).


The elation of my good news has been tinged by the recent passing of my best friend.  I have referred to him previously on this forum as being diagnosed with PIN for over 10 years,  where he had a fluctuating PSA of just under 10 but no treatment.  He also had a triple heart by pass in the mid nineteen eighties and still lived to around 86.  What took its toll on him was the death of his wife from strokes about two years ago and the death within a few weeks of this of his daughter of around 53 years, who was riddled with cancer.  He was a broken and changed man thereafter and lost interest in everything, not helped by isolation at home due to Covid restrictions.

Edited by member 11 Apr 2022 at 17:43  | Reason: Repetition of phrase

Barry
User
Posted 11 Apr 2022 at 13:43

I realised last night that I had not got the results yet for my first post HIFU PSA test taken on 31st March and needed for a Hospital telephone appointment this morning.  So off to GP's surgery first thing but receptionist would not give it to me as my GP had not seen first, due to his being on annual leave.  Anyway, receptionist managed to get another Dr to authorise so I had this to hand for the appointment  The figure was 0.02 which is the lowest since I was first diagnosed including post RT and post previous HIFU in 2015. So I am very pleased with that as was the Dr who rang me today.  The plan is to do 4 monthly PSA tests and another multiparametric MRI in 12 months from the HIFU.


Going back a few years, had I accepted the opinion of UCLH, formed by their interpretation of a Choline Pet scan they gave me, which was that cancer was in an iliac lymph node,  I would have been on HT.  However, The Royal Marsden and my RT treating Hospital in Heidelberg were not convinced and UCLH were not prepared to give me the 68 Gallium PSMA test on the NHS, so I had it done privately.  There was no evidence from this that the aforementioned iliac node was affected, although a very small tumour was seen within my Prostate and this was subsequently confirmed by MRI and Biopsy.  So instead of being treated systemically, I was able to have HIFU again and still avoid HT (for at least more time).   For me the PSMA scan was a treatment changer and the second HIFU looks to have produced a good result so far and with no side effects, (ED resulting  earlier due to RT).


The elation of my good news has been tinged by the recent passing of my best friend.  I have referred to him previously on this forum as being diagnosed with PIN for over 10 years,  where he had a fluctuating PSA of just under 10 but no treatment.  He also had a triple heart by pass in the mid nineteen eighties and still lived to around 86.  What took its toll on him was the death of his wife from strokes about two years ago and the death within a few weeks of this of his daughter of around 53 years, who was riddled with cancer.  He was a broken and changed man thereafter and lost interest in everything, not helped by isolation at home due to Covid restrictions.

Edited by member 11 Apr 2022 at 17:43  | Reason: Repetition of phrase

Barry
User
Posted 12 Apr 2022 at 15:43
Hi Barry , great to hear the positivity of your cancer treatment and recent results. Long May it continue.
The loss of a friend is tragic , and with bad fortune like his itโ€™s enough to break anyone.
I also lost my best friend on Jan 6th this year. He was 48. I visited him Xmas day in hospital. Sadly he had drank himself to death over two years of Covid. No partner and lived alone. He kept his drinking hidden so well so it was a massive shock.
Here is to everyone on the forum doing well on their treatments and enjoying each day that they can ๐Ÿ‘
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User
Posted 11 Apr 2022 at 15:53
Pleased to hear your news of a low PSA Barry. I'm beginning to realise that we have to hold on to these small, and not so small, victories! Sorry to hear your sad news relating to the death of you good friend. The loss of his wife & daughter must have been a bitter blow and along with the isolation of Covid it's not surprising he gave up! You look after yourself and here's hoping things can only get better from now on.
Les
User
Posted 11 Apr 2022 at 17:18

Hi Old Barry, pleased to read about your good results, carry on the good work.   My condolences loosing your best friend.  Take care

User
Posted 11 Apr 2022 at 21:00

Hi Old Barry, 


Pleased to read your psa of 0.02.   I follow your progress with great interest.


Sorry about your best friend.


All the best
Peter


 

User
Posted 12 Apr 2022 at 15:43
Hi Barry , great to hear the positivity of your cancer treatment and recent results. Long May it continue.
The loss of a friend is tragic , and with bad fortune like his itโ€™s enough to break anyone.
I also lost my best friend on Jan 6th this year. He was 48. I visited him Xmas day in hospital. Sadly he had drank himself to death over two years of Covid. No partner and lived alone. He kept his drinking hidden so well so it was a massive shock.
Here is to everyone on the forum doing well on their treatments and enjoying each day that they can ๐Ÿ‘
User
Posted 12 Apr 2022 at 19:09

So sorry to read of your friend Barry. May he RIP and hope you are OK.


It is excellent news re your PSA! What a result, you are certainly vindicated for questioning a treatment plan, researching  alternatives and persistence in getting your preferred treatment.


This bit made my day


Clare

User
Posted 12 Apr 2022 at 23:04

Great news on your PSA Barry, long may that continue.


Really sorry to hear about your friend though. Sending best wishes x

User
Posted 13 Apr 2022 at 00:23
Barry your story is an inspiration for others like me who are new to PCa. Very sorry to hear about your friend, all the best Jim
User
Posted 14 Apr 2022 at 01:07
Thanks to those that have responded, much appreciated. I am so relieved that I will not need to have HT, at least for some time, as my wife is increasingly dependent on me and I know from past experience that the effects of HT would have made being her carer more difficult for me.
Barry
User
Posted 15 Apr 2022 at 13:23

I haven’t been on the forum for about a week. Great to see your PSA so low Barry, long may that continue. So sorry to read about your best friend, that’s a hard one. 

Ido4

User
Posted 18 Apr 2022 at 23:25

Happy for you and really sorry about your friend. My the low PSA continue for very very long

 
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