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Radical radiology

User
Posted 16 Aug 2020 at 08:02

Hi, a year ago I was diagnosed with advanced prostate cancer and have just started radiotherapy. I have been on hormone therapy for nearly a year and as I have had a liver transplant sill be unsuitable for chemo. I am actually receiving radical radio therapy as the cancer has spread to the pubic bone and is very small. My consultant is brilliant and fought for this. Has anyone experienced this. It seemed everyone I had previously seen had written me off. 

 

User
Posted 16 Aug 2020 at 08:02

Hi, a year ago I was diagnosed with advanced prostate cancer and have just started radiotherapy. I have been on hormone therapy for nearly a year and as I have had a liver transplant sill be unsuitable for chemo. I am actually receiving radical radio therapy as the cancer has spread to the pubic bone and is very small. My consultant is brilliant and fought for this. Has anyone experienced this. It seemed everyone I had previously seen had written me off. 

 

User
Posted 16 Aug 2020 at 19:53

That comment you made 'it seemed like everyone I'd seen had written me off'.   

It often seems very tick box.  As if there is no intelligent thinking allowed.  It's good that someone fought your corner and came up with something slightly outside the tick box.  That's how it should be.

User
Posted 20 May 2021 at 09:22

0.024 with a prostate even on HT is a great result.

Edited by member 20 May 2021 at 09:23  | Reason: Not specified

User
Posted 21 May 2021 at 17:24

Hi, I just had the regular beam radiotherapy at Southampton. One consultant at another hospital told me about SABR, and it sounds really impressive. I don't think any NHS hospitals are using yet. The problem is so few men talk about prostate cancer and many do not realize it kills more than breast cancer. I ask every man over 50 I meet if they have checked for prostate cancer and a common answer is their friends tell them it is nothing to worry about. Some do check and 4 have found they have prostate cancer. I hope your able to find SABR it certainly sounds an exciting prospect. Good luck, I wish you well. 

User
Posted 21 May 2021 at 19:49

They use SABR at our NHS hospital; I think that most of the centres of excellence offer it where clinical data indicates that it would be appropriate. The issue is that SABR is only suitable for a small number of cases.

Edited by member 21 May 2021 at 19:50  | Reason: Not specified

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

User
Posted 22 May 2021 at 05:53

I think many modern LINACs can deliver SABR nowadays, doesn't have to be Cyberknife.

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User
Posted 16 Aug 2020 at 15:03

Hi Andyg2,

Do you know what the radiotherapy is directed at?
e.g. prostate?
bone met?

These are both possible treatments, but currently rare for advanced prostate cancer. There is new-ish evidence to show they can be very beneficial, but this hasn't gone mainstream on the NHS yet.

I'm guessing you are being offered this because they can't do chemo?

Has anyone mentioned abiraterone or enzalutamide drugs? They might also not be possible because of liver transplant, but I don't know.

User
Posted 16 Aug 2020 at 15:53

Hi Andy 62, 

The beam is encompassing the prostate and very small area in the pubic bone. The proximity makes it easy to catch everything in one go.. I think the fact I can't have chemo has played an important part in the decision.The area of bone is very small. 

User
Posted 16 Aug 2020 at 19:53

That comment you made 'it seemed like everyone I'd seen had written me off'.   

It often seems very tick box.  As if there is no intelligent thinking allowed.  It's good that someone fought your corner and came up with something slightly outside the tick box.  That's how it should be.

User
Posted 16 Aug 2020 at 23:57

We have had a couple of men who've had radical radiotherapy with advanced prostate cancer. Research has shown this to slow progression of mets.

Yours is going one stage further and attacking the met too. That is sometimes done after radical treatment with curative intent, although uncommon.

I think you are to be congratulated in managing to secure this treatment. Is the intention curative? I can't see why not.

User
Posted 17 Aug 2020 at 01:03

It seems the intent is curative my consultant has never voiced any promises but has made reference to curing on a couple of occasions. He was prepared to get support from some of the top people. The location of the mets almost makes it difficult to not include everything. I obviously want the best outcome and had always known there was two of us in this. I had asked on previous occasions for PSA tests but with no success. Eventually I insisted by which time the picture was not great. I have spoken to several men who also found GPs reluctant to request a test.One person was a medical professional. In a different field and he was told this was quite widespread. It seemed surprising to me that the hepatoligists had made such great efforts to get me a liver transplant but appeared that I was being written off in uroligy. I feel very lucky to be in my present situation, whilst feeling angry that it need not of reached this stage. 

User
Posted 20 May 2021 at 08:52

Hi, It has been a while since I posted. I saw my consultant yesterday and my latest psa is 0.024, he tweeked the radiotherapy beam to include the area of bone. I am very lucky to have ended up with this guy. Is there a hormone therapy with less side effects than zoladex the hot flushes and weight gain really affects me. I am continuing the hormone therapy in the hope I can hang around for new developments in the treatment. 

User
Posted 20 May 2021 at 09:22

0.024 with a prostate even on HT is a great result.

Edited by member 20 May 2021 at 09:23  | Reason: Not specified

User
Posted 21 May 2021 at 17:07

Hi Andyg2

what radiotherapy are you on? Is it  SABR.? I’m very interested in trying to access this whether privately or on NHS .Would you mind telling me where you’re having your treatment?

User
Posted 21 May 2021 at 17:24

Hi, I just had the regular beam radiotherapy at Southampton. One consultant at another hospital told me about SABR, and it sounds really impressive. I don't think any NHS hospitals are using yet. The problem is so few men talk about prostate cancer and many do not realize it kills more than breast cancer. I ask every man over 50 I meet if they have checked for prostate cancer and a common answer is their friends tell them it is nothing to worry about. Some do check and 4 have found they have prostate cancer. I hope your able to find SABR it certainly sounds an exciting prospect. Good luck, I wish you well. 

User
Posted 21 May 2021 at 19:49

They use SABR at our NHS hospital; I think that most of the centres of excellence offer it where clinical data indicates that it would be appropriate. The issue is that SABR is only suitable for a small number of cases.

Edited by member 21 May 2021 at 19:50  | Reason: Not specified

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

User
Posted 22 May 2021 at 05:53

I think many modern LINACs can deliver SABR nowadays, doesn't have to be Cyberknife.

 
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