HIFU Focal Therapy

Hi Robin,

Thanks, I am still doing well. We moved house early this year to a completely new NHS Trust and getting notes transferred has been a nightmare. My new Oncology consultant told me (by letter) that I should stop my hormone treatment now as I had been on it for two years and that was their "norm". I telephoned my old nurse consultant who had been with me from the start, had seen all my scans & biopsy results and was part of the MDT who decided my treatment. After he returned my call, we had a long conversation and I decided to stay on the hormone treatment for the full 3 years. I only have three more injections to go and the last one will be in June next year on our 52nd wedding anniversary!

I had a PSA test a few weeks ago and it's still undetectable.

Keep well and stay safe.

Hi Seamus

Funny enough I just read the 2019 NICE guidelines on that - copied below - maybe your consultant forgot ?!?!

1.3.21.

Consider continuing androgen deprivation therapy for up to 3 years for people with high-risk localised prostate cancer, and discuss the benefits and risks of this option with them. 

Hi all, I struggle with this guidance, if the hormone treatment keeps the cancer under control, why stop it after 3 years. I understand that after a time this treatment may cease to be effective, but why stop it if it’s not at that stage.

Best regards 

My Oncologist stopped me at 9 months - that was his norm for my grade of cancer - PSA 13 Gleason score 7 (3+4) T2N0M0.  Whereas my urologist would have kept me on for 2 to3 years.  The reason given was.  If there is a recurrence then HT can be used again whereas if I had already been on it for so long then it was likely resistance would be reached sooner wit a higher grade cancer.  MY oncologist put more stock on having more HT before RT - more than 6 months usually 8 or 9 months.  My cancer was T2 but T3 disease could not be ruled out due to the tumour pushing on the back of the prostate and they could not rule out localised spread.  As it is nearly 4 years on it seems there wasn't localised spread and my PSA is still undetectable. It all seems to work one way and another.  Therw as one gentleman in my old GP surgery who had been on HT for nearly 20 years - he was in his late eighties and that worked for him and was still working for him.

That's exactly what my previous nurse consultant told me. My PC was Gleason 9 (4+5) T3AN0M0 which was why the three years was recommended. He said that if I was tolerating it OK, I should stay on it for the full three years. I get a few hot flushes and do sweat a lot when rowing or going to my aerobics class, but that's to be expected.

Keep well and stay safe.

Steve, I apologize for late reply. I had difficulty logging into MacMillan website since I posted my last message. 
I had my HIFU in Singapore itself. It was brought in only a year or two ago. In South East Asia I think only Singapore has this machine. 
Cheers

Frankie

Mally333 said:

if the hormone treatment keeps the cancer under control, why stop it after 3 years

Two reasons come to mind straight away:

1. The side effects of HT are pretty awful, and most men experience some or many of them.

2. For about 18 months after RT, there is serious benefit from HT, after that, the benefit is there, but less - and most cancers can only have so much HT before it ceases to have any effect at all; so better to keep some in reserve, if the cancer is in remission and it's not needed at the moment.

To complicate it, the harm / benefit / side effects / effectiveness of HT do vary considerably between different people; it's not an exact science!

Robin P said:

Funny enough I just read the 2019 NICE guidelines on that - copied below - maybe your consultant forgot ?!?!

1.3.21.

Consider continuing androgen deprivation therapy for up to 3 years for people with high-risk localised prostate cancer, and discuss the benefits and risks of this option with them. 

"Up to 3 years" - for many, now, it's only 18 months.

It depends on the Gleason score and other factors in indicating the 'risk' level.

I doubt the consultant 'forgot'; he's probably referring to the guidelines on a daily basis.

Hi All, 

9th November 2020.  For interest, here is an update on my situation.  I had a meeting with the consultant surgeon in London (I am in Scotland) on Friday evening.  The upshot is that the cancer is bigger than was thought, is close to the sphincter and whilst I could still have HIFU, I am recommended to have robotic surgery, and soon.  The suggestion was that the NHS did insufficient biopsies (12) and seemed unhappy with other aspects of the report.  

I have decided to progress the robotic surgery, privately, which is now scheduled for next month.  This is on PMI which I am fortunate to have, as a client added me to his group scheme.  I have 'enhanced cancer cover' with Aviva.  However, the consultant states that the equipment is unavailable at the hospital Aviva covers me for (Princess Margaret) and the operation would need to be conducted at Princess Grace (both are in London).  Aviva only partially covers the latter and the shortfall is described as being very large. I have asked Aviva if they will cover me anyway given that the equipment is unavailable for the Princess Margaret hospital, and I am at present awaiting a reply.

Has anyone else had a similar experience?  I don't know if there's a precedent and if such latitude exists from Aviva, I really hope so.

Best wishes to everyone and thank you for all your constructive, educational and very helpful responses.

Kenny

HI Kenny

Sorry to hear that your diagnosis has taken a wrong turn, but it sounds like it has crystalized your thought process with removal being the best course of action.

No experience with Aviva but I have one suggestion. If your health insurance was organised through a broker, then get them to sort it out with Aviva, they will have more sway. Good luck with that.

I am now going for both HIFU and Brachy consultations, both out of area, but am keeping an open mind as like you both treatments may still prove unsuitable.

Can I ask, did you have another MRI that led to the latest diagnosis?

All the best

Robin