Treatment Option HIFU

User

Posted 13 Feb 2023 at 23:56

Hi,

I was recently diagnosed with Localised Prostrate Cancer Stage T2 and N0 Mx I'm not sure what the latter two mean. I saw Radiotherapy Consultant who told me Oncology Team thought in view of my age 76, I should have 20 Rads + HT, however I am concerned about possible side effects of faecal incontinence during/after Treatment and have been told by Consultant to take a week or two to reach a decision about this Treatment.

I am interested in finding out about both Brachytherapy and HIFU but this Consultant was fairly dismissive of both, which wasn't in the least helpful.

This week I've been driving myself crazy trying to find patients' Reviews/Comments who have had either of these Treatment options, particularly if they have had HIFU at one of the Focal Clinics, as NHS does not offer this to patients, but it might be time to spend my 'Rainy Day' savings, as right now I feel it's simply 'Pouring down!'

Any info you could pass on to me would be greatly appreciated. Just hope I can find my way back to this website/page.

Scott P.

User

Posted 14 Feb 2023 at 20:36

Hi Scott P. In your diagnostic stats the N is for lymph nodes and the accompanying zero means no cancer was detected in the local lymph nodes. The M is for metastasis (cancer in other areas such as bones) and the accompanying X means you haven't had a bone scan which I believe is normal practice for a T2 staging

I can't advise you on Brachy or HIFU but I have experienced salvage radiotherapy. There is a risk of bowel incontinence but with modern radiotherapy machines the collateral damage is much reduced from what it used to be. I did have a bit of bowel incontinence during and after radiotherapy but now three months on that has cleared up (apart from the odd bit of mucus). That said radiotherapy can and does affect people differently. I do hope you find your way back to this website/forum as it's a mine of help and information.

User

Posted 14 Feb 2023 at 21:51

Hi Chris
Thank you for your reply which has been helpful.
I've sent off an email to a Focal Clinic for further info on HIFU.
Scott

User

Posted 15 Feb 2023 at 02:43

Hi Scott, at age 75 I had 9 weeks of RT [followed by HT] but no problems with faecel incontinence then or now, 2 years post RT.

Jules

User

Posted 15 Feb 2023 at 10:08

Hi,

I see you give your country as Afghanistan but you mention NHS. If you you qualify for treatment on the NHS, there are a small number of centres doing HIFU within it now for those that are medically suitable. The leading centre in the UK is UCLH in London who should be in the best position to advise you. I had HIFU there but as salvage treatment for failed RT. As in my case the procedure sometimes needs to be done twice but side effects are generally milder than with other forms of treatment. The risk of a Fistula is very rare nowadays with this treatment. There are 2 types of Brachytherapy, Low Dose with permanently placed radioactive seeds and High Dose involving the placing of radioactive probes into the Prostate and then quickly withdrawing them. Both kinds can be supplemented by EBRT if considered necessary. Both types are available on the NHS and on a wider basis than HIFU but less often than EBRT.

There are pros and cons for all Prostate Cancer Treatments and some may be more suited to an individual than others. A good place to learn more about treatment is the 'Tool Kit' as here https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by member 15 Feb 2023 at 10:09 | Reason: to highlight link

Barry

User

Posted 15 Feb 2023 at 12:12

Hi Barry,
Gosh where did you get the idea I came from Afghanistan?
It certainly made me smile, as I come from a long line of proud Scots, I really must try and find my profile in case I've ticked a wrong box when setting my account up. Thanks for pointing it out to me.

Thanks also for your information which is reassuring on the Rads. I actually asked the Oncologist that if I found a Hospital down south that offered HIFU either as a NHS Treatment or as a Trial, and she said NO! The Oncology Team had offered the Rads and Hormone Treatment and wouldn't refer for HIFU.
So not having Private Health Insurance, I can only dip into my Retirement Savings if I pursue HIFU down south in a Private Clinic. So two levels of Prostrate Care in UK, standard but may be adequate in Devolved Scottish-NHS and progressive in English-NHS.
Scott P.

User

Posted 15 Feb 2023 at 12:32

Hi Barry,
I've just checked my profile and I can see what you mean, it's stuck on Afghanistan! I've pressed edit profile but it just doesn't allow me to go in and change country of origin. I am signed into my account. Anyone got any ideas? Confession ... I am not that great with IT stuff!

User

Posted 15 Feb 2023 at 14:56

Ha ha, I did think it a bit strange, so I did double check your Profile before posting. It sometimes provides useful information when members do this in order to make better replies. In this case it at least served a purpose!. As a matter of interest we do occasionally have ex pats from various countries and even indigenous people from a number of countries too, although being a UK based Charity forum, members are generally from the UK and go to treatments are largely but not entirely based on UK protocols. Having said that when it comes to health, there are differences between the countries that comprise the UK in the way health is administered. Even in England there can be differences between areas in what is approved although in at least one case a patient who was denied a treatment he wanted was not available in his area or approved to go to another hospital, appealed to NHS England who overruled his local Commissioning Group. It would appear this sort of action is not available to you in Scotland.

PS. There is a reluctance on the part of those concerned to mention treatments that they can't offer and to be critical of them without knowing much about them. There are for instance other types of focal treatment, Cryotherapy, Irreversible Electroporation (Nanoknife) or Focal Laser Ablation being some of them, although as far as I am aware, FLA is not yet available in the UK.

Barry

User

Posted 16 Feb 2023 at 23:24

Any idea how I may change my country of birth on my Profile? The menu of countries is stuck on Afghanistan. I've tried pressing Edit Profile but nothing works.

Scott

User

Posted 16 Feb 2023 at 23:28

Are you clicking on 'View my profile' or 'edit my profile'? Can you make other changes to your profile? If you can't change it in 'edit my profile' the moderators will be able to change it for you

Edited by member 16 Feb 2023 at 23:29 | Reason: Not specified

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

User

Posted 17 Feb 2023 at 00:20

Hi Scott,

I saw your post and wanted to respond. I had HIFU done with the Focal One system in the U.S. about two months ago. I had a small prostate "lesion" (sounds less threatening than "tumor," I guess). I met with 4 doctors to look at two types of radiation, brachytherapy, nerve-sparing prostatectamy, and HIFU. I picked HIFU because it is non-invasive, a minor procedure, and leaves open all of the other treatments for "salvage" therapy if the cancer returns later (including HIFU).

The procedure was outpatient. The doctor said it took about 30 minutes. I was under anesthesia. I was back to normal activity in a day, with the catheter I had to have for two days after the procedure being the only nuisance. Two months later, everything is great. No side effects. No urinary issues or sexual issues. I will get PSA checked in a few weeks and then a follow up for MRI in a year.

The downside has been getting insurance to cover it. They have paid for the outpatient hospital costs and the anesthesia costs, but not the actual HIFU procedure (makes no sense).

I hope this helps. Good luck to you.

User

Posted 17 Feb 2023 at 01:39

Welcome Chuck and thank you for posting your experience of HIFU which is a positive one and hopefully will work well for you long term. I assume you were treated using the US Sonablate system* where the probe is placed via the rectum. Unfortunately, there are parts of the Prostate where the probe cannot focus so if the tumour is in this part the patient is not suitable for HIFU. Heavy calcification may also be an impediment. There is now an alternative to this form of HIFU called Tulsa or Tulsa-Pro which is available on a small scale in the USA, Germany and possibly some other countries. The probe or rod is inserted through the Urethra rather than the Rectum so some men who cannot be treated by normal HIFU due to tumour position but want ultrasonic ablation could consider this https://tulsaprocedure.com/articles-of-interest/what-is-the-difference-between-the-tulsa-procedure-and-hifu/

http://www.profoundmedical.com/wp-content/uploads/2015/05/Phase1ResultsPresentationFUS_London2015_pdf.pdf

The info is given as possible alternative for Scott or anybody else that may be contemplating Ultrasound ablation.

*Insightec's Exablate is another HIFU system that being trialed in the USA but guided using MRI said to be more advanced than standard HIFU. https://insightec.com/first-us-commercial-patient-treated-for-prostate-disease-with-insightec-incisionless-focused-ultrasound-system/

Edited by moderator 23 Oct 2023 at 15:23 | Reason: to highlight links

Barry

User

Posted 18 Feb 2023 at 00:22

Hi Lynn

After a great many attempts I finally managed to change my country of origin from Afghanistan to UK!

I am sure many Afghanistans will be celebrating that fact!

Thank you for pointing me in the right direction .

Scott

User

Posted 18 Feb 2023 at 00:26

🤣

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

User

Posted 18 Feb 2023 at 00:36

Hello Chuck and Barry,

Firstly thanks Chuck for giving me your perspective of HIFU from a Patient's perspective, it's been really informative and helpful.

Thanks also to Barry for the additional information on alternative yet similar types of Treatment, I wasn't aware of these.

I've set the ball rolling by requesting a Zoom/Skype Consultation with the Urology Oncologist. I shall be sent a Consent Form to sign enabling the Consultant to access my NHS File. I just want to get things moving now.

Scott P

User

Posted 18 Feb 2023 at 08:27

Scott, like you I considered the HIFU option. I did look into all the 4 main options available to me. In the end I whittled my choices down to HIFU or prostectomy. After doing my research, I leant towards HIFU, spoke to the team at UCLH, and went through another biopsy (the 2nd one in 3months). I had a telephone consultation with consultant a few weeks later to discuss my biopsy, he said it was up to me whether to go for HIFU or the radical surgery. He said giving my age, (57), I might have to repeat it again.. He sounded like a young chap, so I asked him if he were me, which option would he go for, without missing a beat, he said surgery. That was all I needed. My gleason score was also 3+4. If I might add, this was all under the NHS.

User

Posted 18 Feb 2023 at 22:13

GB,

In your situation and age, I think most consultants that would be prepared to answer this juxtaposed question would probably give you the same answer. I think the principal reason for this is that HIFU generally only treats what are thought to be significant tumours. But with potentially many years before you, there might be a future need to treat one or more of what had been previously regarded as insignificant tumours with further HIFU or even more radical treatment. However, it would be interesting to know if at the time you posed the question, the consultant you spoke with had said he would take the HIFU option whether you would have settled for it.

Barry

User

Posted 20 Feb 2023 at 14:50

Originally Posted by: Online Community Member

GB,

However, it would be interesting to know if at the time you posed the question, the consultant you spoke with had said he would take the HIFU option whether you would have settled for it.

Good question, very difficult to say what I would have done. Suffice to say I read up on the HIFU, and it offered a less risky pathway in terms of side effects. I was also on the list for surgery with a date set, however, I felt if I did not explore the HIFU option and the surgery did not go well, I would regret my decision. I then asked to be put on the HIFU scheme, I was accepted and a condition was I undergo another biopsy, as the HIFU team wanted to take another sample of the left side. The consultant did say there was cancer on both sides, they were still willing to go through procedure.

To answer your question, I would have gone with his recommendation if he had suggested the procedure without any caveats.

User

Posted 20 Feb 2023 at 17:55

Seems to be my run of bad luck continues, as the email arranging my Consultation appt never reached me on Friday!
After some emails/phone calls today I finally received a phone/zoom appt for Thurs afternoon. I will update after that.

It is interesting reading other's perspectives on their various Treatments.

User

Posted 01 Mar 2023 at 00:23

Having had my Zoom Consultation I've been feeling rather confused and a bit down. Consultant read over various Blood Analysis and MRI Report and said they were confusing as one report suggested low PSA but actual blood results suggested high PSA and possible spread. MRI Report was so badly worded the Consultant thought it was about two different patients! He therefore cannot make any Treatment Decisions until he has sight of MRI and Bloods redone, he thinks a PET scan may be me necessary but there is not one single Private Hospital or Clinic in Scotland that has one and only about 3 in Scottish NHS. Consultant said whereas NHS England takes a couple of days to give him clearance to access patient's hosp. File online, it can be weeks by Scottish NHS.

NHS Consultant made it clear she would not make any referrals for me in respect of Private Treatment even though I said I was self funding. Basically it's her way of the highway!
So here I am no further forward and deeply confused.
I may have to fly down to attend a Private Clinic in LONDON for the PET scan, fly North and then Fly back South for actual treatment! Im now thinking that I will die of old age before the Cancer gets me.

User

Posted 01 Mar 2023 at 07:36

Hi Scott,

You DO seem to have been mucked about and I can understand why you’re feeling scunnered! Which Health Board are you under? I’m in Fife and (Hopefully🤞🤞🤞) about to start RT at Western in General in Edinburgh. I too have suffered from mixed messaging at times and unnecessary delays in treatment due to bad Communication. I do find though that the CNSs are really helpful.
I also think that some consultants need to get their head out of their backsides at times and learn how to communicate and empathise with their patients, who are going through the most traumatic experience of their lives.

hope you get some answers….

User

Posted 01 Mar 2023 at 15:18

Thanks Decho, to be honest I'm reluctant to name my Treatment Hospital as I really don't want to alarm another patient who is about to commence his Treatment, as everyone is different and my wife had excellent treatment for her Cancer at this same hospital for most of last year and we couldn't speak highly enough about it.
I do agree with you, some consultants have an arrogant manner and if they meet folk like me who asks questions instead of just accepting 'Consultant know best' it does create an 'atmosphere'.

Scott

User

Posted 01 Mar 2023 at 18:13

I understand Scott😊

I can’t complain about my treatment which has been good, just sometimes I feel like just a number😟. I hope that at some point Fife will get its own oncology and Radiotherapy unit as I think that would improve things. I know that since they found a surgeon to do Da Vinci Ops, those who have surgery have had a much better experience.

I suspect that many PCa’s just accept what they are told and get on with it. Like you, I like to know ‘how’ and ‘why’. I was actually told at one point I was ‘overthInking’ things….not helpful!

User

Posted 16 Apr 2023 at 18:02

Hi Decho

Apologies for delay in replying. NHS Scotland Consultant having refused to refer me for a PET Scan, I discovered a private company co-own scanning facilities with NHS at Newcastle, so Private Consultant referred me there rather than having to travel to London. I had a delay of weeks until I got an appt. but worth it as PSMA PET Scan showed that whilst my cancer is still contained within Prostrate and I can have HIFU Treatment, it also showed a PSMA 'hotspot' on my ribs which may or may not require Treatment, so either 'wait and see' or Rads.

I have appt to discuss this further with my GP and will ask for a change of Urologist as this NHS Consultant is less than helpful as soon as I mentioned HIFU.

Just awaiting date to fly down to Birmingham for my HIFU procedure.

Scott P.

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