Treatment Option HIFU

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.

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

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.

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.

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

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

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.

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.

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.