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The right treatment plan

User
Posted 13 Mar 2025 at 17:01

HI all i am now on  my journey to choose what treatment plan to have i have been offered RADICAL RT 4 WEEKS WITH EXTENDED HORMONES 3 YEARS OR RADICAL RT 3 WEEKS WITH BRACHYTHERAPY BOOST, 3/4 hour operation,

my glesson score is a 9 with a 5/4 with SV lower invasion i am so unsure what road to take as none of them sound good with the side effects or do i look for other alternatives which there seems many privately and that the nhs don't offer its such a big decision for us as men to make as it will be life long we all don't want get it wrong as it messes  with your head as you can start to over think it any help/ thoughts on this matter,

steve

User
Posted 13 Mar 2025 at 17:01

HI all i am now on  my journey to choose what treatment plan to have i have been offered RADICAL RT 4 WEEKS WITH EXTENDED HORMONES 3 YEARS OR RADICAL RT 3 WEEKS WITH BRACHYTHERAPY BOOST, 3/4 hour operation,

my glesson score is a 9 with a 5/4 with SV lower invasion i am so unsure what road to take as none of them sound good with the side effects or do i look for other alternatives which there seems many privately and that the nhs don't offer its such a big decision for us as men to make as it will be life long we all don't want get it wrong as it messes  with your head as you can start to over think it any help/ thoughts on this matter,

steve

User
Posted 16 Mar 2025 at 02:31

I took the brachytherapy boost option. It gets a higher effective dose into the prostate where the known cancer is, but tends to have a relatively low side effect profile considering the dose delivered. With a Gleason 9, I think that's your best chance of wiping that out. I presume the brachytherapy boost option also includes hormone therapy (mine did, 18-36 months depending on PSA levels at the 18 month point).

An option I was given was to extend the external beam to cover most of the pelvic lymph nodes too, where the cancer was likely to go next, and where there could already be micro-mets (too small to show on any scans). I took this option to reduce the chances of any such micro-mets causing recurrence. This is done at a lower dose than would be the case for known lymph node mets, so it doesn't usually cause any additional side effects. You should ask if that's an option for you, or maybe they are planning to do it anyway.

5½ years later, I'm very pleased with my choice. Loads of detail on my profile too.

I did have private medical insurance and I asked if there was anything available that way which was better, and my oncologist said no - treatment exactly the same, just he got paid more, and I got a private room (which I don't like - I prefer talking with the other patients), so all my treatment was on the NHS.

However, now there would be the option of having Abiraterone added to the hormone therapy for the first 2 years which improves the survival rate, which is the treatment NHS England just refused to fund/make standard, but which is standard in many other countries (including Scotland and Wales) for patients with high risk disease on a curative treatment path. I do know patients who are paying for this themselves while having the treatment and regular hormone therapy on the NHS - it works out around £1000/month when you include all the necessary private blood tests and reviews which go with it, at least initially - that might drop later if less frequent reviewing is required once you've been shown to be stable on the Abiraterone. This wasn't yet known to be a benefit 5½ years ago when I had my treatment, and so not something I considered.

Edited by member 16 Mar 2025 at 02:37  | Reason: Not specified

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User
Posted 14 Mar 2025 at 19:55

Hi Steve,

I'll bump your post up to the top of the pile as it may have got missed yesterday. With your T3b staging (seminal vesicle invasion) it does seem to have already ruled out prostatectomy and possibly some of the focal treatments you have been looking at. Treatment options are always an excruciatingly difficult decision to make. I went down the surgical route so I can't off much advice on the options you have been offered but there are plenty on the forum with with first hand experience. Are you saying with the Brachy option that you don't require three years of HT?

User
Posted 15 Mar 2025 at 01:21

My diagnosis was very similar to yours, I had the brachy boost. I can see no way that any private treatment would be better than what you will get on the NHS. Click on my profile to read more.

Dave

User
Posted 16 Mar 2025 at 02:31

I took the brachytherapy boost option. It gets a higher effective dose into the prostate where the known cancer is, but tends to have a relatively low side effect profile considering the dose delivered. With a Gleason 9, I think that's your best chance of wiping that out. I presume the brachytherapy boost option also includes hormone therapy (mine did, 18-36 months depending on PSA levels at the 18 month point).

An option I was given was to extend the external beam to cover most of the pelvic lymph nodes too, where the cancer was likely to go next, and where there could already be micro-mets (too small to show on any scans). I took this option to reduce the chances of any such micro-mets causing recurrence. This is done at a lower dose than would be the case for known lymph node mets, so it doesn't usually cause any additional side effects. You should ask if that's an option for you, or maybe they are planning to do it anyway.

5½ years later, I'm very pleased with my choice. Loads of detail on my profile too.

I did have private medical insurance and I asked if there was anything available that way which was better, and my oncologist said no - treatment exactly the same, just he got paid more, and I got a private room (which I don't like - I prefer talking with the other patients), so all my treatment was on the NHS.

However, now there would be the option of having Abiraterone added to the hormone therapy for the first 2 years which improves the survival rate, which is the treatment NHS England just refused to fund/make standard, but which is standard in many other countries (including Scotland and Wales) for patients with high risk disease on a curative treatment path. I do know patients who are paying for this themselves while having the treatment and regular hormone therapy on the NHS - it works out around £1000/month when you include all the necessary private blood tests and reviews which go with it, at least initially - that might drop later if less frequent reviewing is required once you've been shown to be stable on the Abiraterone. This wasn't yet known to be a benefit 5½ years ago when I had my treatment, and so not something I considered.

Edited by member 16 Mar 2025 at 02:37  | Reason: Not specified

User
Posted 16 Mar 2025 at 22:56
NHS England is to be ended by the Govemment, so it remains to be seen what differences this might have when it comes to treatment. I know of one person whose local authority wouldn't fund a particular treatment because the procedure was not available in their area. So this person contacted NHS England who overrode this and he got his treatment in another area on the NHS, although it was a one time thing rather than a continuous prescription. I suppose only time will tell.
Barry
 
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