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Re-graded (up) in MDT. Cancer on the Surface

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User
Posted 15 Sep 2025 at 13:23

Hi,

I was recently diagnosed (August 2025) with stage 2 Prostate Cancer, at 49 years old. It was initially reported to be a small affected area and localised. After researching, I was considering HIFU treatment. However, today the Consultant has said that my Cancer has been re-graded to state 3a. Apparrently, there was disagreement in the MDT meeting between Radiologists - with one saying that the Cancer is on the surface of the prostate, and not fully contained. 

I have two concerns regarding treatment options:

1. My local Trust only offer Radical Prostatectomy or long term Radiotherapy. I have asked for a referral to UCLH for HIFU. However, the Consultant thinks that the referral won't be accepted with the Cancer potentially on the surface of the Prostate. 

2. I've been treated (by Endocrinology) for several years for secondary hypogonadism, with Testosterone Replacement Therapy. My levels have been consistently mid normal range since (18nmol/l). The Urology Consultant says that I should come off TRT. However, the previous impact of low testosterone on my cognitive function was dramatic. I would struggle to work and make a living. Not to mention all of the other QoL symptoms. I've understand that although Prostate cancer is all sensitive to Testosterone. However, the Androgen suppression support is considered outdated - based on studies from the 1940's. Newer studies seem to prove that increased testosterone does not impact the Cancer growth. Basically, I want to avoid Androgen suppression and retain TRT treatment.

Appreciate any opinions and advice...

User
Posted 18 Sep 2025 at 08:27

Like your consultant said, in your case I doubt whether HIFU would be an option.

I was Gleason 9 (4+5), T3a. I had RARP two and a half years ago. My PSA has since remained undetectable (touchwood). I was fully continent after 6 months. I cannot get an a natural erection but can with the help of penile injections. Apart from the ED issue I feel as good as I did before prostate cancer entered my life.

In your circumstances, I would go for surgery, mate. 👍

User
Posted 18 Sep 2025 at 07:07

At you relatively young age I would certainly seriously consider having your prostate removed. It is the "clean" option and although there could be problems with getting an erection and, of course, it would mean that you no longer produce semen,  it would mean there is no radiation damage to other tissues which could cause issues later on. Although I was a 3+4=7, with a PSA of 6.01 just before my operation and a T2C ,the T score changed to a  T3a after my prostate was  removed and sliced and diced as the cancer was found to be growing through the prostate and was on its outside. There had been no spread and since my operation in December 2021 my 6 monthly PSA score has remained less than 0.1 (Which is undectable).

User
Posted 19 Sep 2025 at 14:27

Originally Posted by: Online Community Member
However, the Androgen suppression support is considered outdated - based on studies from the 1940's. Newer studies seem to prove that increased testosterone does not impact the Cancer growth. Basically, I want to avoid Androgen suppression and retain TRT treatment.

If I read your post correctly you're asking whether increasing testosterone increases the growth of Prostate Cancer.  As reducing T shrinks PCa you'd think it must.

There's an article on PCUK that says increased testosterone above a certain level doesn't make you more likely to get Prostate Cancer, but up to that level it does.  The article is linked below and I wonder if you're confusing the two.

https://prostatecanceruk.org/about-us/news-and-views/2017/11/testosterone-and-prostate-cancer-risk-the-plot-thickens

 

 

User
Posted 15 Sep 2025 at 17:58
Go for the surgery option, it will potentially cure you and won't need hormones to do it and won't leave any prostate tissue to be susceptible to testosterone.

HIFU is not a cure for a T3 tumour.

User
Posted 19 Sep 2025 at 17:00
Sounds like another argument to have it removed
User
Posted 19 Sep 2025 at 21:39
It might still be possible to have Focal treatment with a T3A, depending on location of the tumour as I did, although also depending on location, it might be HIFU, Cryotherapy or Nanoknife (Irreversible Electroporation). HIFU is an easy and certainly repeatable in need with milder side effects than Surgery or RT. I had two treatments with HIFU to sort out my tumour following failed RT and have been in remission for several years now. So to learn whether you are a suitable candidate, you could do what you previously considered and be referred to UCLH, who are the leaders in Focal treatment in the UK.
Barry
User
Posted 20 Sep 2025 at 12:43

Originally Posted by: Online Community Member

thank you all for you replies and advice. I really appreciate it. 

 know that I need to make a quick decision now that it's been re-graded to 3a. I've therefore booked a private consultation for Monday, as a second Specialist opinion.

I'm finding it really hard to accept prostatectomy, but coming around slowly. 

Best wishes!

if you go down the surgical route recommend trying to find a high volume highly experienced technical surgeon. it can make a dramatic difference to outcome and quality of life. 

I had retzius sparing (usually quicker continence) and neuroSAFE so the surgical team can ensure negative margins in near real time while you are open. 

if you have private even better as you can choose your team. 

User
Posted 21 Sep 2025 at 02:23

Originally Posted by: Online Community Member
My local Trust only offer Radical Prostatectomy or long term Radiotherapy

At your age, it's a very difficult decision, with the added risk that cancer in younger men can be more aggressive, or maybe that's better expressed as more active in terms of its growth.

Your first chance is your best chance and the fact that radiotherapy has been included as an option seems to indicate the Trust is on the fence as to whether a prostatectomy will do the job first up.

When you say "long term radiotherapy" what do you mean? Are you referring to the length of the RT or the associated hormone therapy [in your case stopping HRT]?

Would you be able to do a full RT treatment in the now common shortened time frame with limited hormone suppression? Yes, there is a slightly increased risk that RT might cause some other form of cancer later in your life but it's a very small percentage risk increase and it's significantly lower than the risk of recurrence if the selected treatment  doesn't do the job. If your "Team" is leaning towards RT it's still be an option to consider. The HT [or no HRT] could be negotiable.

Could I suggest you think long term? The option now that gives you the best long term chance of avoiding spread and metastatic cancer is the best one, even if it might be hard short term.

Jules

Edited by member 21 Sep 2025 at 07:35  | Reason: Not specified

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User
Posted 15 Sep 2025 at 17:58
Go for the surgery option, it will potentially cure you and won't need hormones to do it and won't leave any prostate tissue to be susceptible to testosterone.

HIFU is not a cure for a T3 tumour.

User
Posted 18 Sep 2025 at 07:07

At you relatively young age I would certainly seriously consider having your prostate removed. It is the "clean" option and although there could be problems with getting an erection and, of course, it would mean that you no longer produce semen,  it would mean there is no radiation damage to other tissues which could cause issues later on. Although I was a 3+4=7, with a PSA of 6.01 just before my operation and a T2C ,the T score changed to a  T3a after my prostate was  removed and sliced and diced as the cancer was found to be growing through the prostate and was on its outside. There had been no spread and since my operation in December 2021 my 6 monthly PSA score has remained less than 0.1 (Which is undectable).

User
Posted 18 Sep 2025 at 08:27

Like your consultant said, in your case I doubt whether HIFU would be an option.

I was Gleason 9 (4+5), T3a. I had RARP two and a half years ago. My PSA has since remained undetectable (touchwood). I was fully continent after 6 months. I cannot get an a natural erection but can with the help of penile injections. Apart from the ED issue I feel as good as I did before prostate cancer entered my life.

In your circumstances, I would go for surgery, mate. 👍

User
Posted 18 Sep 2025 at 13:16

thank you all for you replies and advice. I really appreciate it. 

 know that I need to make a quick decision now that it's been re-graded to 3a. I've therefore booked a private consultation for Monday, as a second Specialist opinion.

I'm finding it really hard to accept prostatectomy, but coming around slowly. 

Best wishes!

User
Posted 19 Sep 2025 at 14:27

Originally Posted by: Online Community Member
However, the Androgen suppression support is considered outdated - based on studies from the 1940's. Newer studies seem to prove that increased testosterone does not impact the Cancer growth. Basically, I want to avoid Androgen suppression and retain TRT treatment.

If I read your post correctly you're asking whether increasing testosterone increases the growth of Prostate Cancer.  As reducing T shrinks PCa you'd think it must.

There's an article on PCUK that says increased testosterone above a certain level doesn't make you more likely to get Prostate Cancer, but up to that level it does.  The article is linked below and I wonder if you're confusing the two.

https://prostatecanceruk.org/about-us/news-and-views/2017/11/testosterone-and-prostate-cancer-risk-the-plot-thickens

 

 

User
Posted 19 Sep 2025 at 16:45

thanks for the reply. I realised, and accepted, that higher Testosterone levels increased the risk of prostate Cancer. It's unlikely this caused my Cancer, since I've only been on TRT for four years or so, and my levels aren't 'high' whilst on TRT.

I was actually referring to continuing Testosterone replacement with Prostate Cancer - or following radical prostatectomy, or after HIFU. The logic is that if I was not on TRT and had natural T levels of 18nmol/L, I would not be told to receive Testosterone suppression. Unless I was considering Radiotherapy maybe. Since my T levels (on TRT) are 18nmol/L, why would the Consultant suggest that I stop TRT - effectively suppressing my T? 

I know the priority is to treat/remove the Cancer, and I will do whatever it takes to do that. However, I would like to avoid being T suppressed so that I can continue to function in work and provide for my family. 

Here are the articles that I read, alongside some actual research papers on the topic.

https://www.urologytimes.com/view/how-testosterone-therapy-use-in-men-with-prostate-cancer-has-evolved

https://www.urologytimes.com/view/testosterone-therapy-and-prostate-cancer-risk-benefit-and-individualized-treatment

User
Posted 19 Sep 2025 at 17:00
Sounds like another argument to have it removed
User
Posted 19 Sep 2025 at 17:15

Yes it does, and I'am slowing getting my head around that. 

User
Posted 19 Sep 2025 at 21:39
It might still be possible to have Focal treatment with a T3A, depending on location of the tumour as I did, although also depending on location, it might be HIFU, Cryotherapy or Nanoknife (Irreversible Electroporation). HIFU is an easy and certainly repeatable in need with milder side effects than Surgery or RT. I had two treatments with HIFU to sort out my tumour following failed RT and have been in remission for several years now. So to learn whether you are a suitable candidate, you could do what you previously considered and be referred to UCLH, who are the leaders in Focal treatment in the UK.
Barry
User
Posted 20 Sep 2025 at 12:43

Originally Posted by: Online Community Member

thank you all for you replies and advice. I really appreciate it. 

 know that I need to make a quick decision now that it's been re-graded to 3a. I've therefore booked a private consultation for Monday, as a second Specialist opinion.

I'm finding it really hard to accept prostatectomy, but coming around slowly. 

Best wishes!

if you go down the surgical route recommend trying to find a high volume highly experienced technical surgeon. it can make a dramatic difference to outcome and quality of life. 

I had retzius sparing (usually quicker continence) and neuroSAFE so the surgical team can ensure negative margins in near real time while you are open. 

if you have private even better as you can choose your team. 

User
Posted 21 Sep 2025 at 02:23

Originally Posted by: Online Community Member
My local Trust only offer Radical Prostatectomy or long term Radiotherapy

At your age, it's a very difficult decision, with the added risk that cancer in younger men can be more aggressive, or maybe that's better expressed as more active in terms of its growth.

Your first chance is your best chance and the fact that radiotherapy has been included as an option seems to indicate the Trust is on the fence as to whether a prostatectomy will do the job first up.

When you say "long term radiotherapy" what do you mean? Are you referring to the length of the RT or the associated hormone therapy [in your case stopping HRT]?

Would you be able to do a full RT treatment in the now common shortened time frame with limited hormone suppression? Yes, there is a slightly increased risk that RT might cause some other form of cancer later in your life but it's a very small percentage risk increase and it's significantly lower than the risk of recurrence if the selected treatment  doesn't do the job. If your "Team" is leaning towards RT it's still be an option to consider. The HT [or no HRT] could be negotiable.

Could I suggest you think long term? The option now that gives you the best long term chance of avoiding spread and metastatic cancer is the best one, even if it might be hard short term.

Jules

Edited by member 21 Sep 2025 at 07:35  | Reason: Not specified

User
Posted 22 Sep 2025 at 09:37

thank you. I will definitely look in to NeuroSAFE and Retzius sparing. 

User
Posted 22 Sep 2025 at 09:45

I really appreciate the advice here. Especially useful is the 'first chance is your best chance'. Although the Trust Consultant didn't hint or advise on RT versus Prostatectomy. He simply presented the options and asked what would prefer. 

I referred to long term (rather inaccurately it would seem) as the normal 4 week RT, versus the newer 1 week RT. As you say, the former usually accompanies by HT, versus the latter not accompanied by HT. 

PS: I'm informed that the Cancer is 'slow growing'. However, the diagnosis has already changed once. I'm hoping that it doesn't change again. 

 
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