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My HIFU - an update

User
Posted 22 Mar 2023 at 16:25

My PSA some 15 months after my second HIFU is 0.03 and I have just had a telephone appointment from the top Focal Therapist in the UK when he said my recent MRI shows no cancer and that I am now considered in remission.  Whist I am very happy with this result, I will still have biannual  PSA tests as this disease can occur again even years later. However, I do feel vindicated in pressing for a second HIFU instead of the HT which was what was prescribed.

I now have to sort out, as well as I can, other problems if that is possible, including a recurrence of Plantar Fasciitis, which took ages to overcome when I had it 25 years ago, despite doing exercises, using orthotics in my shoes and having painful injections in my heel. 

Barry
User
Posted 22 Mar 2023 at 16:25

My PSA some 15 months after my second HIFU is 0.03 and I have just had a telephone appointment from the top Focal Therapist in the UK when he said my recent MRI shows no cancer and that I am now considered in remission.  Whist I am very happy with this result, I will still have biannual  PSA tests as this disease can occur again even years later. However, I do feel vindicated in pressing for a second HIFU instead of the HT which was what was prescribed.

I now have to sort out, as well as I can, other problems if that is possible, including a recurrence of Plantar Fasciitis, which took ages to overcome when I had it 25 years ago, despite doing exercises, using orthotics in my shoes and having painful injections in my heel. 

Barry
User
Posted 11 Jul 2023 at 00:43

Hi APGS

My situation was that after failed RT I was left with the choice of Prostatectomy which UCLH said would almost certainly mean permanent incontinence or Hormone Treatment that might work for some unknown time or a Focal Therapy that might work at least for a time and could be followed by further Focal Therapy.or a Prostatectomy. I was therefore keen to participate in a trial which offered either HIFU (their first choice, or otherwise Cryotherapy . As it was the case, I was suitable for HIFU, so jumped at the opportunity to have this.

It would appear that you are in a different position because you are considering it as a primary treatment so if you chose Prostatectomy, unlike me you would not have a Prostate that had been subjected to changes brought about by radiation, so side effects would be likely to be less severe. However, it is possible that you might need a second focal treatment of focal therapy and depending how well it works after the first or second focal therapy procedure you might the a Prostatectomy or form of RT because it was asking too much of the focal treatment. You have to remember that focal therapy aims to only treat significant tumour, not all tumours, the objective being to maintain as much function as possible.

Most experience with HIFU is as a salvage treatment for failed RT,, there is not being much experience even of this for many years or at many facilities. So this is why it is regarded as experimental due to long term assessment. Certainly there have been improvements in equipment iand techniques n administering focal therapy just as there have been with RP an RT treatment which makes comparisons difficult as results are considered going back some year which will not necessarily reflect current advances.

Whist results from all treatments have improved, they all have their failures and successes for a number of reasons and not least because of variable response of individual patients.

In my experience the second application of HIFU was easier than the first and only after about 3 hours following it II was driven home some 200 miles to my home in Devon, The worst aspect for me was the catheter, which I found uncomfortable until it was removed about 7 days later. Can't think of any side effects after the op. If cancer takes hold again which is always a possibility, at least I have set it back and with it the threatened Hormone treatment I have tried to avoid. I did write in more detail and will add this if I can find link.

I no longer do personal messages except in exceptional circumstances, In this I take the same view as Lyn that any matter that can be referred to can be usefully posted on the forum which may also help others. Furthermore, this gives other members the chance to offer a different point of view or updated information.

https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience

 

Edited by member 11 Jul 2023 at 01:04  | Reason: Not specified

Barry
Show Most Thanked Posts
User
Posted 22 Mar 2023 at 17:55
Brilliant news Barry xx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Mar 2023 at 18:46

Fantastic result Barry. Hope you get the plantar fasciitis sorted. 

Ido4

User
Posted 23 Mar 2023 at 21:10

Thanks Barry - it's great to hear such a good news story.  Hopefully, your other issue can also be treated successfully - and promptly.  It sounds painful.

Good luck.

JedSee.

User
Posted 23 Mar 2023 at 22:06
Great success Barry, well done for sticking to your guns.

Good luck with your other issues

Cheers

Bill

User
Posted 24 Mar 2023 at 00:35
Great news Barry, really good to see this x
User
Posted 25 Mar 2023 at 19:03

Great result Barry. 

As for Plantar Fascitis, yes very painful, although it only happened after I got out of my car after going on a long walk.   I found it stopped during lockdown and put it down to not going on the treadmill at the gym.  After restarting the gym I don't use the treadmill as much now and it hasn't come back.  Repetitive stress is all I can think of.  I don't know if you do anything repetitive with stress on the lower calf area that's attached to the pf. 

If it's not one thing it's another, I strained my lower calf after the gym last week and couldn't walk for a day.

User
Posted 26 Mar 2023 at 22:31
Thank you Peter and others who responded.

When I had the Plantar Fasciitis years ago, I had been playing a lot of short tennis and league table tennis and perhaps that was at least a contributory reason. I did pull leg muscles on two occasions. More recently, I can only think that a verry small flat pebble may have caused the problem again, only one foot being affected. Unfortunately, this means that I have had to curtail my walking and use my car more .often. There are other health issues which I won't go into but are the price of old age..

Barry
User
Posted 10 Jul 2023 at 12:36

Hi Barry

Have read up on some of your posts and they have been really helpful. Thank you.

Currently, 62 and got diagnosed with Gleason 3+4, confined and been looking through the treatment options and MDT at UCLH have said "I am a suitable candidate for HIFU". They have great deal of expertise with focal but I am so torn as to what direction to go in i.e. Focal or Radical.

Have read that you have had 2 HIFU treatments but not been able to locate your older conversations and have tried to message you privately but not able to as not participated enough in the forums as yet.

Am really looking for personal experiences with HIFU and would be grateful for any input.

Thank you so much.

 

 

User
Posted 11 Jul 2023 at 00:43

Hi APGS

My situation was that after failed RT I was left with the choice of Prostatectomy which UCLH said would almost certainly mean permanent incontinence or Hormone Treatment that might work for some unknown time or a Focal Therapy that might work at least for a time and could be followed by further Focal Therapy.or a Prostatectomy. I was therefore keen to participate in a trial which offered either HIFU (their first choice, or otherwise Cryotherapy . As it was the case, I was suitable for HIFU, so jumped at the opportunity to have this.

It would appear that you are in a different position because you are considering it as a primary treatment so if you chose Prostatectomy, unlike me you would not have a Prostate that had been subjected to changes brought about by radiation, so side effects would be likely to be less severe. However, it is possible that you might need a second focal treatment of focal therapy and depending how well it works after the first or second focal therapy procedure you might the a Prostatectomy or form of RT because it was asking too much of the focal treatment. You have to remember that focal therapy aims to only treat significant tumour, not all tumours, the objective being to maintain as much function as possible.

Most experience with HIFU is as a salvage treatment for failed RT,, there is not being much experience even of this for many years or at many facilities. So this is why it is regarded as experimental due to long term assessment. Certainly there have been improvements in equipment iand techniques n administering focal therapy just as there have been with RP an RT treatment which makes comparisons difficult as results are considered going back some year which will not necessarily reflect current advances.

Whist results from all treatments have improved, they all have their failures and successes for a number of reasons and not least because of variable response of individual patients.

In my experience the second application of HIFU was easier than the first and only after about 3 hours following it II was driven home some 200 miles to my home in Devon, The worst aspect for me was the catheter, which I found uncomfortable until it was removed about 7 days later. Can't think of any side effects after the op. If cancer takes hold again which is always a possibility, at least I have set it back and with it the threatened Hormone treatment I have tried to avoid. I did write in more detail and will add this if I can find link.

I no longer do personal messages except in exceptional circumstances, In this I take the same view as Lyn that any matter that can be referred to can be usefully posted on the forum which may also help others. Furthermore, this gives other members the chance to offer a different point of view or updated information.

https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience

 

Edited by member 11 Jul 2023 at 01:04  | Reason: Not specified

Barry
 
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