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User
Posted 06 Mar 2023 at 16:50

Hi all,

I was diagnosed just over 3 years ago psa 162 Gleason 4+5=9 spread to lymph nodes ,after 38 radiotherapy and 3years hormones psa went down to 0.2. All treatment now finished and feeling fine.

Have just had my first psa check since finishing and it rose to 0.5 not sure if this is good or bad,is anybody in similar position 

Pungle

 

User
Posted 14 Nov 2023 at 17:48

Thanks Derek,

I feel fine so I will keep my fingers crossed as well

Pungle

User
Posted 06 Mar 2023 at 20:08
Your PSA will rise as the hormones wear off and your testosterone returns - you still have a prostate so non-cancerous cells can produce 'healthy' PSA. Generally speaking, you are fine as long as your PSA stays below 2.5
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Oct 2023 at 16:21

Had a psma pet scan after a rise in psa and it has shown cancer in prostate and also on spine,waiting for a meeting with oncologist on the 9th November.

Pungle

 

User
Posted 10 Oct 2023 at 22:22

Hi Pungle,

Really sorry to hear that, it must be hard to accept that after 3 years of this gruelling treatment it has come back. It worries me too and is made even worse by the fact that those of us on HT/RT have to wait well beyond the end of HT to find out if cancer is still there.

I wish you all the best for the future and hope that your meeting with the Oncologist results i  a new treatment path which will keep it at bay for many years to come.

Derek

 

User
Posted 14 Nov 2023 at 15:11

Hi all,

Psma scan showed bright spot on spine,small shadow on pelvis and small shadow on prostate. 

So back on to hormone treatment and also apalutamide, not sure how this going to go after a year off treatment

Pungle

User
Posted 05 May 2024 at 16:45
Well ,been on apalutamide now since November also on hormone injections. My psa is not detectable,I feel absolutely fine,collect my tablets every 2 months hormone every 3 months no pain no real side effects so just keeping my fingers crossed it carrys on this way as long as possible.

Going to Canada to see our grandkids next week but unable to get any insurance,bit risky but what can I do

Pungle

User
Posted 29 Sep 2024 at 14:17

Hi all,been on apalutamide and hormone now for a while and all seems fine,just knackered. The only real problem is still unable to get any insurance cover,so we go without,just booked again for lanzarote after Christmas.bit risky but worth it

Pungle

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User
Posted 06 Mar 2023 at 20:08
Your PSA will rise as the hormones wear off and your testosterone returns - you still have a prostate so non-cancerous cells can produce 'healthy' PSA. Generally speaking, you are fine as long as your PSA stays below 2.5
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Sep 2023 at 11:21
Just had my second psa since treatment was finished and my psa has gone from 0.5 to 2.5 feeling worried.

Pungle

User
Posted 01 Sep 2023 at 13:36

You've seen a rise of more than 2.0, so you need to be referred back to your oncologist to investigate further. Hopefully they'll schedule you for a PSMA PET scan to find where any active cancer is. They might do a bone scan first as that's likely to have a shorter waiting time. If there are one or two hot spots outside the treated area, they might be able to offer you SABR radiotherapy on them.

User
Posted 01 Sep 2023 at 14:15
Thank you Andy62

Thought I was doing great but fingers crossed

User
Posted 10 Oct 2023 at 16:21

Had a psma pet scan after a rise in psa and it has shown cancer in prostate and also on spine,waiting for a meeting with oncologist on the 9th November.

Pungle

 

User
Posted 10 Oct 2023 at 21:05

Sorry Pungle, that's not what you want to hear just when you are hoping treatment is finished. I would guess they will put you on hormone therapy again, and maybe suggest some other treatments too.

User
Posted 10 Oct 2023 at 22:22

Hi Pungle,

Really sorry to hear that, it must be hard to accept that after 3 years of this gruelling treatment it has come back. It worries me too and is made even worse by the fact that those of us on HT/RT have to wait well beyond the end of HT to find out if cancer is still there.

I wish you all the best for the future and hope that your meeting with the Oncologist results i  a new treatment path which will keep it at bay for many years to come.

Derek

 

User
Posted 13 Oct 2023 at 18:19
Thank you Derek and Andy62 ,I will put a note on whe I have seen the oncologist in a month

Pungle

User
Posted 14 Nov 2023 at 15:11

Hi all,

Psma scan showed bright spot on spine,small shadow on pelvis and small shadow on prostate. 

So back on to hormone treatment and also apalutamide, not sure how this going to go after a year off treatment

Pungle

User
Posted 14 Nov 2023 at 17:25

Hi Pungle,

Thanks for letting us know and I’m so sorry that it has spread. I can’t offer any advice on the treatment you’ve been given but I will keep my fingers crossed for you that it keeps it under control and hopefully with minimal side effects.

All the best,

Derek

User
Posted 14 Nov 2023 at 17:48

Thanks Derek,

I feel fine so I will keep my fingers crossed as well

Pungle

User
Posted 05 May 2024 at 16:45
Well ,been on apalutamide now since November also on hormone injections. My psa is not detectable,I feel absolutely fine,collect my tablets every 2 months hormone every 3 months no pain no real side effects so just keeping my fingers crossed it carrys on this way as long as possible.

Going to Canada to see our grandkids next week but unable to get any insurance,bit risky but what can I do

Pungle

User
Posted 06 May 2024 at 02:56
I think you could get Insurance excluding PCa if you are prepaired to carry your risk which is what I did quite some years ago now after RT when we visited the USA and Canada. Our trip was for only 3 weeks and my PSA was stable at the time. I would not have been happy to visit for 6 months though without cover. Why not have a word with your oncologist to get his/her view on your likelyhood of needing urgent PCa treatment for the period of your stay. I am aware that private treatment there is expensive if needed.
Barry
User
Posted 06 May 2024 at 05:13
Thanks Barry,

We have been to Canada each year for 4 years and had insurance cover without PC but now it's in my spine although under control,the onc doesnt want to see me for 6 months,they are not interested in cover st all

User
Posted 29 Sep 2024 at 14:17

Hi all,been on apalutamide and hormone now for a while and all seems fine,just knackered. The only real problem is still unable to get any insurance cover,so we go without,just booked again for lanzarote after Christmas.bit risky but worth it

Pungle

 
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