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Hi I’m Greeneyed girl

User
Posted 13 Sep 2021 at 18:57

Hi 

Just saying hello.  My partner has had RP a year ago and now his PSA is rising unfortunately.  I have found it helpful reading the forum, thank you to those that have contributed.

 

User
Posted 13 Sep 2021 at 23:14

Hi,
Sorry to read that.
Hope he gets good treatment
Peter

User
Posted 14 Sep 2021 at 08:45
This is relatively common after RP. Around a third of men who have RP go on to have salvage radiotherapy. It’s generally pretty effective, so don’t get too stressed about it.

Best wishes,

Chris

User
Posted 14 Sep 2021 at 15:29
I and three friends had prostatectomies three years ago. Three of us by the best London surgeons money can buy, the other by his local NHS consultant.

All three of the others had recurrence soon after, and following courses of HT and RT, they and I are all doing fine with no cancer evident, over three years later.

Best of luck.

Cheers, John.

User
Posted 14 Sep 2021 at 22:28

Get the more sensitive scan if you can, it may not pick anything up. I was not given one of the more sensitive scans, I had Salvage RT as "a very educated guess" but it still did not eradicate the cancer. Reported success rates of SRT vary depending on where you look.

Four years ago, having salvage RT seemed to start quite soon after the PSA exceeded 0.2, now starting salvage RT seems to be left longer. SRT with or without HT is another variable amongst medics. 

Are you seeing an oncologist ?

Thanks Chris

 

User
Posted 14 Sep 2021 at 22:32
You should be under an oncologist now not a urologist. I suspect they will want you on HT straight away and start RT in a few months.

What was his PSA history after the RP?

User
Posted 15 Sep 2021 at 08:27

Thanks for your reply 

RP was June 2020 scores were ……RP for pT2c pNX Gleason 7 prostrate cancer 

Negative resection margins left partial right complete nerve spare

Post op PSA undetectable.

 

I’m not sure why we are still seeing urologist.  We had a phone consultation with an oncologist in June 2021 when scores were…..

 

PSA 0.24

Treatment history 

Ralp June 2020 Presenting PSA 13.2 

 

Histology Gleason 3+4 pT2c pNX R0

 

Now Sept 2021 his PSA  is 0.54 

 

 

 

User
Posted 15 Sep 2021 at 08:54

Might be worth giving the specialist nurses on here a ring for some advice, number is at the top.

Do you have details of his other post op PSA results. In particular what was his first post op PSA.

Thanks Chris

User
Posted 15 Sep 2021 at 10:46
If post op was undetectable you need to be pressing for RT and HT ASAP IE Salvage Radio Therapy.

The longer you leave it past 0.5 the less likely you are to get a durable remission.

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User
Posted 13 Sep 2021 at 23:14

Hi,
Sorry to read that.
Hope he gets good treatment
Peter

User
Posted 14 Sep 2021 at 08:45
This is relatively common after RP. Around a third of men who have RP go on to have salvage radiotherapy. It’s generally pretty effective, so don’t get too stressed about it.

Best wishes,

Chris

User
Posted 14 Sep 2021 at 11:32

Thanks guys that’s kind of you to reassure me.

User
Posted 14 Sep 2021 at 14:24
If your husband did not have follow up RT, this could well be the next treatment. Sometimes a consultant can get a pretty good idea of where the cancer may be by going back to the scan and what was noted at the time of the Prostatectomy and the pattern of subsequent PSA tests. In some cases a recent scan can help determine where the cancer cells are. It makes sense to establish the whereabouts of the cancer cells as well as is possible so that if RT is considered appropriate, it can be best directed.
Barry
User
Posted 14 Sep 2021 at 14:52

Thank you Barry.  We’ve been told a scan that Leeds can do will possibly pick up the cancer when PSA is 1.00 or above.  At the moment his PSA is 0.54 it’s doubled in three months.  Which I believe is a big risk factor ?

I’ve read the chances of success for SRT are better the lower the PSA when you start.  

Dodgy to wait ?

Also if starts HT as recommended then that means the PSA score will be artificially held down so won’t get to 1.00 to do the scan.

Apparently there are more sensitive scans we could have now available in Manchester or Liverpool - we could travel if Leeds can refer us there??? But we will have to find out.  We see urologist next week.  

User
Posted 14 Sep 2021 at 15:29
I and three friends had prostatectomies three years ago. Three of us by the best London surgeons money can buy, the other by his local NHS consultant.

All three of the others had recurrence soon after, and following courses of HT and RT, they and I are all doing fine with no cancer evident, over three years later.

Best of luck.

Cheers, John.

User
Posted 14 Sep 2021 at 22:28

Get the more sensitive scan if you can, it may not pick anything up. I was not given one of the more sensitive scans, I had Salvage RT as "a very educated guess" but it still did not eradicate the cancer. Reported success rates of SRT vary depending on where you look.

Four years ago, having salvage RT seemed to start quite soon after the PSA exceeded 0.2, now starting salvage RT seems to be left longer. SRT with or without HT is another variable amongst medics. 

Are you seeing an oncologist ?

Thanks Chris

 

User
Posted 14 Sep 2021 at 22:32
You should be under an oncologist now not a urologist. I suspect they will want you on HT straight away and start RT in a few months.

What was his PSA history after the RP?

User
Posted 15 Sep 2021 at 08:27

Thanks for your reply 

RP was June 2020 scores were ……RP for pT2c pNX Gleason 7 prostrate cancer 

Negative resection margins left partial right complete nerve spare

Post op PSA undetectable.

 

I’m not sure why we are still seeing urologist.  We had a phone consultation with an oncologist in June 2021 when scores were…..

 

PSA 0.24

Treatment history 

Ralp June 2020 Presenting PSA 13.2 

 

Histology Gleason 3+4 pT2c pNX R0

 

Now Sept 2021 his PSA  is 0.54 

 

 

 

User
Posted 15 Sep 2021 at 08:54

Might be worth giving the specialist nurses on here a ring for some advice, number is at the top.

Do you have details of his other post op PSA results. In particular what was his first post op PSA.

Thanks Chris

User
Posted 15 Sep 2021 at 10:46
If post op was undetectable you need to be pressing for RT and HT ASAP IE Salvage Radio Therapy.

The longer you leave it past 0.5 the less likely you are to get a durable remission.

User
Posted 15 Sep 2021 at 15:34

Thanks for that information and advice.  He is going to ring the specialist nurses.  Does anyone have any experience of trying to get a sensitive scan at a NHS trust that isn’t your home one?  

User
Posted 23 Nov 2021 at 13:11

So …. Amazingly my husband was given a PSMA CT-PET scan on the NHS in his home town of Leeds.  The scan showed the cancer is in the pubic bone.  He will be treated with hormone injections.  His PSA hasn’t been done for a while but I’d guess it would be about 1.0 and the scan was very sensitive so the cancer is only in one area at the moment and is a small area.  Would it be worth asking for radiotherapy to the bone area? And how long will the hormone injections keep working? Any idea how long he can live for with this ? Thanks 

User
Posted 15 Dec 2021 at 15:47

So now the oncologist has referred my OH to have SABR which is a very targeted radiotherapy to the area of the pubic bone where the cancer is situated.  

PSA is now 1.0 and has been doubling every three months.  Hopefully the hormone injections will slow this rise and the radiotherapy is scheduled for February next year.

 As far as they can tell from the PSMA - PET scan the spread of the cancer is only to one area and this is good news.  The consultant predicts that there’s an 80% chance the SABR treatment will control the cancer in this area for 2 years,  as it’s a fairly new treatment for prostrate cancer they don’t have data for longer - it may be controlled longer but the probable danger is that other areas of cancer will pop up elsewhere.

So far the hormone treatment PROSTAP is going ok no serious side effects from that as yet, he’s still dealing with ED and mild urninary incontinence from the radical prostratectomy sadly and that isn’t going to be improved by the SABR but such is life ! 

So I the general sense all this is fairly good news,  it’s weird once you get the news of the knock backs  - like the cancer returning when you thought it had gone away, the news that the blanket radiotherapy isn’t an option as the cancer is now in the bone then we get upset and feel a bit sad but then it’s amazing how quick you get used to the idea, get acceptance and move on - with hope - to the next stage of this whole thing.

My OH is being very brave and positive and I’m really proud of him.  

 

 
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