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Thoughts about treatments.

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User
Posted 19 Mar 2021 at 20:53

HI. Diagnosed this week and recommended for active treatment. NHS offer external Beam radiotherapy or surgery.

Other treatments out there Focal therapy , HIFC. How do I get independent advice? A little concerned that private clinics maybe biased towards what they provide.

Should i pursue a trial or private treatment. Any thoughts very welcome.

User
Posted 19 Mar 2021 at 23:56

I think you will get very good treatment on the NHS. If you have private medical insurance and desire some specialist treatment then yes go private, but otherwise NHS will almost certainly be as good. There may be some treatment which isn't available at your local NHS hospital but is available at a different NHS hospital and then you have to get referred which might be awkward.

If you go for a trial, you may get better monitoring afterwards. There will be more uncertainty either as to the result or the side effects, after all that is why they are doing the trial. If you want to advance science for future generations then go for the trial. 

Download the toolkit from this website to at least get started on advice for all the treatment options. 

Dave

User
Posted 20 Mar 2021 at 02:29
Yes, as Dave says, order the free comprehensive information pack ‘Toolkit’ from this charity.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

A PSA of 14 at your age, is not ‘very high’, 50, 60 or hundreds is. If as you say, there is no cancer detected, why are they offering you cancer treatment?

Have you had a biopsy? What was the staging or Gleason score, G=X+Y=Z?

If you opt for surgery, look for a high-volume surgeon who does at least 100 prostatectomies a year. Practice makes perfect. This should improve your chances of post-operative continence.

You should seek opinions from both surgical and oncological branches of medicine before you make mind up on any treatment plan. You are entitled to second opinion(s) from specialists, even on the NHS.

Best of luck.

Cheers, John.

User
Posted 20 Mar 2021 at 08:33

Bryan,

Generally, you will only get offered treatments for which there are representative consultants on the MDT (multi-disciplinary tream) which discusses your case. In many hospitals, that means you won't get offered treatments which your hospital doesn't do (a pet peeve of mine), except all hospitals have representatives for prostatectomy and radiotherapy on their MDT, if necessary from a tertiary care centre (specialist cancer centre) if they don't do it themselves.

As a T3a, I don't think you would be a candidate for focal treatments, but to be sure on this, you might need to ask for a referral to a focal treatment centre such as UCLH. One treatment you might be a candidate for and might not have been offered would be HDR Boost, which is radiotherapy with half the dose given via external beam radiotherapy, and the other half of the dose given as high dose rate (HDR) brachytherapy. If you were interested in that and your hospital doesn't offer it, then you would need to ask for a second opinion from, or a referral to, a treatment centre which offers HDR brachytherapy.

Edited by member 20 Mar 2021 at 08:36  | Reason: Not specified

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User
Posted 19 Mar 2021 at 23:56

I think you will get very good treatment on the NHS. If you have private medical insurance and desire some specialist treatment then yes go private, but otherwise NHS will almost certainly be as good. There may be some treatment which isn't available at your local NHS hospital but is available at a different NHS hospital and then you have to get referred which might be awkward.

If you go for a trial, you may get better monitoring afterwards. There will be more uncertainty either as to the result or the side effects, after all that is why they are doing the trial. If you want to advance science for future generations then go for the trial. 

Download the toolkit from this website to at least get started on advice for all the treatment options. 

Dave

User
Posted 20 Mar 2021 at 02:29
Yes, as Dave says, order the free comprehensive information pack ‘Toolkit’ from this charity.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

A PSA of 14 at your age, is not ‘very high’, 50, 60 or hundreds is. If as you say, there is no cancer detected, why are they offering you cancer treatment?

Have you had a biopsy? What was the staging or Gleason score, G=X+Y=Z?

If you opt for surgery, look for a high-volume surgeon who does at least 100 prostatectomies a year. Practice makes perfect. This should improve your chances of post-operative continence.

You should seek opinions from both surgical and oncological branches of medicine before you make mind up on any treatment plan. You are entitled to second opinion(s) from specialists, even on the NHS.

Best of luck.

Cheers, John.

User
Posted 20 Mar 2021 at 08:33

Bryan,

Generally, you will only get offered treatments for which there are representative consultants on the MDT (multi-disciplinary tream) which discusses your case. In many hospitals, that means you won't get offered treatments which your hospital doesn't do (a pet peeve of mine), except all hospitals have representatives for prostatectomy and radiotherapy on their MDT, if necessary from a tertiary care centre (specialist cancer centre) if they don't do it themselves.

As a T3a, I don't think you would be a candidate for focal treatments, but to be sure on this, you might need to ask for a referral to a focal treatment centre such as UCLH. One treatment you might be a candidate for and might not have been offered would be HDR Boost, which is radiotherapy with half the dose given via external beam radiotherapy, and the other half of the dose given as high dose rate (HDR) brachytherapy. If you were interested in that and your hospital doesn't offer it, then you would need to ask for a second opinion from, or a referral to, a treatment centre which offers HDR brachytherapy.

Edited by member 20 Mar 2021 at 08:36  | Reason: Not specified

User
Posted 28 Mar 2021 at 13:00

thank you John for taking the time to reassure me. my PSA is now 19.5 ( it was 22) and I have T3a. 

I'm finding it difficult to decide. Which treatment to opt for. I will though ask for a second opinion to help. at the hospital I am speaking to individual specialists not someone giving me an overview and advice.

User
Posted 28 Mar 2021 at 13:02

Andy 62 thank you for your reassuring advice. I think a second opinion may be helpful. 

User
Posted 28 Mar 2021 at 17:29
That's the way it works, I'm afraid. You'll speak to a urologist who will tell you about surgery, and an oncologist who will tell you about radiotherapy, but nobody will steer you one way or the other unless there is a compelling reason to go down one path or the other. I had it comparatively easy in that there was a very strong recommendation for RT in my case.

Have you read the PCUK "Toolkit"? That will give you an impartial overview of the pros and cons of different treatments.

Best wishes,

Chris

 
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