Focal HIFU vs Surgery

User

Posted 15 Jan 2021 at 16:51

As a recent primary HIFU patient, I have been interested in the conversations and have read the studies referenced by Old Barry and Lyn. They are extremely upto date and useful. It’s only here from our ‘experts’ that I get to know where to find these studies.

Any doubts I have that I have had the right treatment has gone. This may be only in my case as the 2019 study points to HIFU best for older (I am 76), low risk who has a partial not whole gland HIFU.

The 2018 Imperial College results for HIFU compare very favourably as Barry has already said.

It is true that the rate of positive biopsy after HIFU from the October 2020 (Mao.,Chao) results of 1698 patients was 14%to 37.5%. However what pleases me is that they say after partial-gland HIFU, the mean PSA nadir was 1.9 to 2.7 and I have just received my 3 monthly post HIFU of 2.00 which I was not sure about but can now be relieved that I am in good company.

Bill

User

Posted 15 Jan 2021 at 19:32

Great result, Bill. In my mind, HIFU is positioned between active surveillance and the radical treatments - a good option for someone who might be suitable for AS or is just beyond the threshold and doesn't generally suffer from anxiety.

In all honesty, if I could turn back the clock I would have asked Stan to consider HIFU once he had point-blank refused to have RP or RT/HT - especially if we had known that his AS would not be correctly managed. He was a very laid back kind of guy and even if he had had to repeat the HIFU, he might still be with us.

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

User

Posted 15 Jan 2021 at 21:04

Thanks Lyn. Sorry about Stan.

Yes, I am hopeful my 2nd quarterly PSA test (due March) will not show much of an increase and by the end of the year no doubling. If COVID is still around would not wish to have another HIFU. I have seen you mention a PSA after treatment of 2.15 as a threshold or something, and wonder what that was. But probably nothing to do with HIFU.

All information is helpful and I and I am sure others are grateful for all contributions.

Bill

User

Posted 15 Jan 2021 at 21:27

Sorry about stan

I was booked in for my prostectormy but it got cancelled, it's now back on but I have a consultation Monday night with the dr who does hifu, for me at 50 if I can save my penis for a few years a £13000 debt its worth it. I hope I'm eligible, I'll let you know.

All the information posted has been very helpful. I'll be re reading all this Monday night when I need to make a decision.

Edited by member 15 Jan 2021 at 21:30 | Reason: Not specified

User

Posted 15 Jan 2021 at 21:42

If you are persuaded to shell out 13k for HIFU with a T3, the doctor needs reporting. No point saving your penis if you end up spending the rest of your life on hormones and can't remember what to do with it or why it ever mattered!

Are you sure it's a T3???

Edited by member 15 Jan 2021 at 21:42 | Reason: Not specified

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

User

Posted 15 Jan 2021 at 21:50

"I have seen you mention a PSA after treatment of 2.15 as a threshold or something, and wonder what that was. But probably nothing to do with HIFU."

After RT, a man still has a prostate and the healthy cells can replicate and regenerate so the accepted stance is that after successful RT the PSA shouldn't go higher than 2.0 plus the lowest reading the person has ever had (in the post you saw, the person had had a PSA reading of 0.15 while on HT).

In your case, there has been less damage to the prostate so it is expected that your 'healthy' PSA will be a bit higher than if it had all been zapped to a frazzle.

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

User

Posted 16 Jan 2021 at 00:41

Its says theres a bulge in the capsule that indicates early T3, on left is T2.

What's your thoughts??

User

Posted 16 Jan 2021 at 05:00

Lyn makes a valid point in saying about the higher PSA level likely to be found after RT due to healthy or recovering cells producing PSA than with Prostatectomy. However, whereas RT damages some good cells all the way to the target, HIFU damages only the actual target area itself so there is going to be even more good cells remaining in the Prostate than with RT. It follows that PSA levels can be higher with HIFU.

It is most important that the HIFU probe which is located in the rectum is in a good position to focus on the tumour. A major study suggested that results were better where the cancer was in the Posterior than the Anterior zone.

As regard the question posed by Michael, I think each case has to be looked at very carefully. When diagnosed in late 2007 I had a T3a and it was thought RT would stand a better chance of dealing with this than surgery or HIFU. In the intervening years all treatments have improved, as have scans and biopsies but I nevertheless feel there is still a better chance of RT zapping any cancer cells on the point of escaping as it is difficult to know there disposition.. So the way I see it is that RT can go beyond where HIFU or the knife can but if you are prepared to pay for HIFU, it might work for you but if it doesn't, any escaping cancer cells might have migrated further, so any follow up RT then considered necessary might prove less effective. Even having surgery or RT now is not certain to eradicate your cancer.

I wish you well in making your decision and hope it works well for you.

Barry

User

Posted 16 Jan 2021 at 11:00

Thanks Barry. Yes not bothered now with my PSA result after HIFU. You have had both RT & HIFU so realise now why you have to watch your PSA more closely. By the way sent you a private message some time ago but your message box was full. Anyway seems more important to get the vaccine at the moment at our age.

It’s good advice you and Lyn have given Micheal. At his age it may not be wise to rush into a HIFU, especially if at £13000, it might have to be repeated. If I was 50 again I would certainly wait for a more permanent solution.

Bill

User

Posted 16 Jan 2021 at 17:03

" if I was 50 again I'd wait for a more permanent solution"

I must admit that made me chuckle! My operation is book on for this Thursday again, they spoke to the surgeon who said it couldn't wait. I've a consultation Monday night with the hifu doctor & I'll have to make a decision after that. Let you know.

Edited by member 16 Jan 2021 at 17:05 | Reason: Not specified

User

Posted 16 Jan 2021 at 17:26

Hi Michael

That’s good it’s on again and you have the choice. Glad you can see humour at this difficult time for you. The reference of course was to point out that HIFU may not give you peace of mind for very long.

Best regards

Bill

User

Posted 16 Jan 2021 at 18:11

You've got to laugh bill or what's the point. I'm glad I have options, so gutted there all horrible decisions but as my wife says the bad bits happened, I have cancer, now just what to do about it.

We put so much trust in the experts & what they say, I've not a clue what to do apart from I have to do something, hifu seems to have the least side effects & they rang Monday when I had no treatment plan in place, it felt like I was supposed to do it! Let you know after Monday.

User

Posted 17 Jan 2021 at 20:06

It’s been interesting reading other’s experiences and thank you all for contributing

Mickey23 , this is a message for you

Am sorry I wasn’t able to reply direct to you . Seems that because am new , private message doesn’t go through until I’ve posted more !

Anyway back to your question about whether I’ve come to a decision between HIFU or surgery, well I chose HIFU

But since I’ve been told I’ve got cancer , that is a week before New Year, I sat listening to doctors for a very longtime

Not that anything was going in , as soon as you hear cancer , brain goes in neutral

Afterwards doctors gave me options HIFU , surgery and radiotherapy but he there and then said radiotherapy isn’t for me

So I went home with the other 2 options

Doctors was supposed to call me and get my decision but am still waiting for a call

I did call my support worker but she reassured me and said they will call

Am still waiting so I don’t know much to be honest

Good luck with yours as well , I will keep you updated

User

Posted 17 Jan 2021 at 20:39

Hi polar bear,

What was your psa, T stage and gleason, and was there any other information like percent cancer in prostate? Is the HIFU being offered on the NHS?

I've already had my treatment, but the above information can help those who come after us.

Dave

User

Posted 11 Feb 2021 at 21:43

I very much appreciate all the contributions to this post. I am 58, T1, on AS for a year. Diagnosis 18 months ago. PSA has risen since then from 7.2 to 11.2 and fluctuated in between. I have 2 small tumours and precancerous cells diagnosed in one biopsy. I was due a second MRI around September last year - still waiting.

With the rising PSA, I am looking at options, especially HIFU. I live in the North of Scotland but my father lives in Reading so I could stay there (after Covid). I think I will opt on to the waiting list for surgery. When I spoke with the consultant the waiting list was about 6 months, it will be considerably longer now.

Good luck Mickey23. I hope it goes well.

Tim

Edited by member 11 Feb 2021 at 21:44 | Reason: Not specified

User

Posted 11 Feb 2021 at 23:25

Overall, cancer patients have not been so severely affected as patients with other problems although the situation is worse in some areas than others. I rang UCLH in London to check my MRI scan was likely to go ahead this month before booking transport.They told me that their cancer patients were little affected as there are quite a number of private hospitals in London able to help take the non cancer patients. So as in so many other things, a bit of a postcode lottery.

Barry

User

Posted 19 Feb 2021 at 23:11

Well I went for my focal therapy on Wednesday 3rd February in Harley street hospital! Very me!! £13995 & I left with Tesco drugs!! Paracetamol ;-))

I'd not had any symptoms it was the last thing I said b4 they shut me up & put me to sleep.....

I woke with a catheter! Guess I must have had it then.

I was taking 24 tablets a day for the 1st week & had the catheter in. 4 days after the treatment I woke with a semi & the catheter in, ouch! But I took that as a good sign! The Thursday after, 8 days later I had the catheter out & stopped most of the tablets, I leaked for the day the catheter was taken out but woke Friday morning and haven't leaked since. I checked out the erections as soon as the catheter was out & it's fine, not as hard as before but it's still sore so give it a chance to heal!! My cock still aches but so far so good. If this has killed my cancer & I recover back to before this will be a 10 week ( from diagnosis to treatment!) Experience I'll think back to later on & be glad I found that miracle cure before I had the prostectormy. Fingers crossed

User

Posted 19 Feb 2021 at 23:31

Thanks for the update. Hope it all goes well. Glad you're already getting erections and not leaking much. I guess hifu is about as minimally invasive as you can get, and I always think that's a good idea.

Dave

User

Posted 20 Feb 2021 at 10:47

Sounds very positive, hopefully it's done the job.

Was it whole-gland ablation?

User

Posted 20 Feb 2021 at 13:47

It was focal therapy, I had 85% on my right hand side & 1% on the left, they ( fingers crossed) took all the 85% & the 1% on the left not worth talking about, the checks most of us our on now means if we get cancer come back anywhere they should fine it early.

But I'm hoping 1 year MRI, that's the 1st time they can see inside me & see if they got it all & that's me clear of cancer.

But focal over prostectormy for me & if your consultant doesn't tell you about it if your eligible theres something seriously wrong, mine didn't. I feel I got very lucky my prostectormy got cancelled.

Notification

Join the online community now.