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Waiting HIFU at UCLH

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User
Posted 03 Aug 2020 at 09:53

Hi, this is my first post. Wish I had read all the conversations on HIFU on this forum before. Very informative. Thanks to all.

Just wish here to ask if anyone is presently on the list with UCLH for a HIFU I have been down for it for 4 months. Obviously COVID-19 paused operations so am told there is a long backlog. However, they say I should have my HIFU this month!?

Anyone in the same boat?

Bill2

 

 

 

User
Posted 03 Aug 2020 at 15:43
Hi Bill,

Sorry you join us due to PCa.

Firstly, be assured that at UCLH you will be in the hands of some of the most experienced clinicians in the UK for your HIFU, which is where I had mine in 2015 and am still monitored by them. However, even prior to Covid - 19 the (possibly overloaded) organization was poor and I would check everything very carefully, particularly with regard to appointments. I have experienced several problems and lack of co-ordination in this respect. I could give several examples but will just mention one. I was given appointments for two scans at overlapping times and in two different buildings and due to the type of scans they should not have been done on the same day anyway.

We don't have many men on this forum who have HIFU as it is more of a niche treatment which is more often given as a salvage procedure for failed RT rather than as a primary treatment for PCa. We hope all goes well and will be interested to learn about your experience and how you progress over time.

Barry
User
Posted 04 Aug 2020 at 00:58

With surgery but with nerve sparing if that proves possible, you get all seen cancer removed or if surgeon and or lab find all cancer has not been removed you can then usually have RT to remove someway beyond where the knife can go. With RT, suspect areas can also be targeted. With HIFU the objective is to focus on tumours deemed significant. Best results are where these are small, few and on one side. The HIFU procedure does not set out to treat suspicious areas or even insignificant tumours. The rationale is that some of these insignificant tumours may never develop in the life of a patient to the point that they need to be treated. (It is known that some men die with rather than of tumours that have not caused a problem. A number of men who had more drastic treatment would be in this number if they had not been treated. This is termed 'overtreatment' and is something that HIFU aims to avoid. However, it has to be accepted that in some cases HIFU has to be repeated or more drastically treated by surgery or RT if the job is too big or in the wrong position for further HIFU. So in short, timely surgery in particular and RT (excluding recurrence years latter with the latter), will more likely end PCa, HIFU still offers a slightly reduced chance of doing this but provides a milder alternative with less severe side effects and maintaining more Prostate function but may require follow up treatment as alluded to.

Hope your HIFU is not delayed.

Edited by member 04 Aug 2020 at 01:03  | Reason: Not specified

Barry
User
Posted 27 Aug 2020 at 17:57
I wouldn't ask too many questions next week, just in case the consultant concludes you are undecided and postpones the procedure 😂

The whole point of HIFU is to target the treatment at a small affected area, minimising the damage to the rest of the prostate - I am sure they will have looked carefully at your images during the planning stage. But yes, it is sensible to ask how they have decided and where / how widely they are targeting.

The difference in biopsies is more likely to be that they hit a different spot on the second attempt than that the cancer evolved in the space of a month - presumably, the second biopsy was done because they were unsure about the reliability of the first?

I think your family history may be a red herring - the main link is that you are all male. The fact that you have all been diagnosed may be down to increased awareness (you & brother were aware of the need for testing because of your dad) or environmental (you and your brother breathed the same air, drank the same water & ate similar foods as your dad when you were young) or simply because the older you get the more likely you are to be diagnosed .... 70% of men in their 70s have some cancer in their prostate although most will die without ever being diagnosed. Truly genetic prostate cancer is very rare - estimated at around 5% of cases - but is more likely if you, your brother, your dad & uncle were diagnosed young (in your 50s or younger) and there is a history of young onset breast, ovarian or endometrial cancer on the female side of the family.

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

User
Posted 08 Sep 2020 at 15:06

Thanks Bill,

That is strange. He had it in 4 nights last time ( 3 nights took it to Sunday) and 3 nights for his FLA. 

you’d think protocols for removal would be roughly the same for NHS v BUPA.

 No PSA planned but an early MRI next week. He hated the last one as first time with a mask. 

If it’s a clear fail then our prof is clear it’s radical for our next steps so fingers crossed.

Have a good week. From memory first time with a catheter was a much bigger deal than this time ( probs due to familiarity)

 

Clare

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User
Posted 03 Aug 2020 at 15:43
Hi Bill,

Sorry you join us due to PCa.

Firstly, be assured that at UCLH you will be in the hands of some of the most experienced clinicians in the UK for your HIFU, which is where I had mine in 2015 and am still monitored by them. However, even prior to Covid - 19 the (possibly overloaded) organization was poor and I would check everything very carefully, particularly with regard to appointments. I have experienced several problems and lack of co-ordination in this respect. I could give several examples but will just mention one. I was given appointments for two scans at overlapping times and in two different buildings and due to the type of scans they should not have been done on the same day anyway.

We don't have many men on this forum who have HIFU as it is more of a niche treatment which is more often given as a salvage procedure for failed RT rather than as a primary treatment for PCa. We hope all goes well and will be interested to learn about your experience and how you progress over time.

Barry
User
Posted 03 Aug 2020 at 18:09
Hi Barry

Thanks your comments. I have just started , where as I see you have been at it for 13 years.

Yes, was recommended UCLH for HIFU by the Royal Free Barnet after MRI and biopsy (PCa.gleason 3+4)following psa of 13.5.

They are the pioneers I am told but as you say, letters don’t arrive etc. The consultants know there job but I never see the same one.

I had another biopsy there in Feb this year as the MRI did not match the biopsy results.

I am down for a right sided focal HIFU although the MRI is suggestive of a suspicious area on the left side.

So seeing some comments here I feel that It may not be a ‘one off’ HIFU.

JUST HOPE It’s not put back because of a second wave of the virus. They tend to be careful with 75 year olds but hope they use a window of opportunity this month with me.

Will let you know.

Bill

User
Posted 04 Aug 2020 at 00:58

With surgery but with nerve sparing if that proves possible, you get all seen cancer removed or if surgeon and or lab find all cancer has not been removed you can then usually have RT to remove someway beyond where the knife can go. With RT, suspect areas can also be targeted. With HIFU the objective is to focus on tumours deemed significant. Best results are where these are small, few and on one side. The HIFU procedure does not set out to treat suspicious areas or even insignificant tumours. The rationale is that some of these insignificant tumours may never develop in the life of a patient to the point that they need to be treated. (It is known that some men die with rather than of tumours that have not caused a problem. A number of men who had more drastic treatment would be in this number if they had not been treated. This is termed 'overtreatment' and is something that HIFU aims to avoid. However, it has to be accepted that in some cases HIFU has to be repeated or more drastically treated by surgery or RT if the job is too big or in the wrong position for further HIFU. So in short, timely surgery in particular and RT (excluding recurrence years latter with the latter), will more likely end PCa, HIFU still offers a slightly reduced chance of doing this but provides a milder alternative with less severe side effects and maintaining more Prostate function but may require follow up treatment as alluded to.

Hope your HIFU is not delayed.

Edited by member 04 Aug 2020 at 01:03  | Reason: Not specified

Barry
User
Posted 04 Aug 2020 at 10:04

Very well put Barry, I think I am doing  the right thing. At the moment though , with all the delay, I just have to put behind me the feeling that I just want any treatment available to slow down the PCa. UCLH did not think that I should go on HT when the HIFU ops were halted. Seems they don’t do HT along side HIFU 

Bill

User
Posted 27 Aug 2020 at 17:30

After 5 months on the waiting list I have a HIFU booked at last for next week 4th September....Yippee!

To be fare I am 75 that may earlier have been risky when the virus was prominent.

They also say that generally at this age you are more likely to die with PCa than because of it. That’s partly why I agreed to have focal only as my first and hopefully only treatment.

However, there are a few factors that may make my PCa  a little more aggressive. (See below).

I mention this as I ask for any advice, be it small, of what questions I should ask my consultant next week before the HIFU.

Could I, or should I influence him into doing a bit more on the right side.ie bigger margins. I presume they go what they can see by the probe ultrasound images and not by the biopsies or MRI. In fact the MRI in November did not show anything on the right side.

The biopsies were done in January and February that did show PCa on the right side. So that’s the side they are doing although the MRI was suggestive of the left side.

The differently between the biopsies in just over one month (ie 3% to 20% Gleason 4) is small as is the core (I think Barry says a gain of sand). But if you were to extrapolate a further 6 months one wonders what you would get?

Another factor is my family’s history. My father and his brother died as a result of PCa. And my older brother,also G7, has just finished HT & RT. All in their 70’s.

User
Posted 27 Aug 2020 at 17:57
I wouldn't ask too many questions next week, just in case the consultant concludes you are undecided and postpones the procedure 😂

The whole point of HIFU is to target the treatment at a small affected area, minimising the damage to the rest of the prostate - I am sure they will have looked carefully at your images during the planning stage. But yes, it is sensible to ask how they have decided and where / how widely they are targeting.

The difference in biopsies is more likely to be that they hit a different spot on the second attempt than that the cancer evolved in the space of a month - presumably, the second biopsy was done because they were unsure about the reliability of the first?

I think your family history may be a red herring - the main link is that you are all male. The fact that you have all been diagnosed may be down to increased awareness (you & brother were aware of the need for testing because of your dad) or environmental (you and your brother breathed the same air, drank the same water & ate similar foods as your dad when you were young) or simply because the older you get the more likely you are to be diagnosed .... 70% of men in their 70s have some cancer in their prostate although most will die without ever being diagnosed. Truly genetic prostate cancer is very rare - estimated at around 5% of cases - but is more likely if you, your brother, your dad & uncle were diagnosed young (in your 50s or younger) and there is a history of young onset breast, ovarian or endometrial cancer on the female side of the family.

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

User
Posted 27 Aug 2020 at 18:05

I think I ran out of space!

I will put the results of the biopsies on here so that those interested can see what I am talking about.

By the way I know I am in good hands with UCLH. It’s just that the more information I have the better.

Biopsy 13.1.2020

Tumour Grade Group 2, Gleason 3+4(3% component 4) length 1.5mm. Cores involved 2/22. Right mid X09 2/4

Biopsy 21.2.2020

Tumour Grade Group 2, Gleason 3+4 (20%component 4) length 2mm. Cores involved 1/14. Right PZ Apex  medial.   Acute inflammation 

Tumour is seen extending to ejaculatory duct focally.

Any comments would be much appreciated.

Bill

 

User
Posted 27 Aug 2020 at 18:16

Thanks Lyn

I will bear that all in mind. Yes, after my long wait no way will I want a postponement! I will ask as you suggest.

Yes my Mother also had Cervical cancer. 

Bill

User
Posted 03 Sep 2020 at 00:35

Hi Bill

Hope you are OK. It is a strange one this cancer with you guys sometimes having choices when in other cancers the pathway is much more determined by the protocols.

A is still on for the 4th having had a COViD test today we are now self isolating together.. which is what we were advised. However he now has to go tomorrow as well for the ‘catheter training and talk’ . I think he could give the training now! 

Hope you are OK

 

Clare

User
Posted 03 Sep 2020 at 08:20
Hi Clare

Yes, I am ready for the HIFU tomorrow too, but have to be there at 7am.

Due a call this morning from the team to finalise assessment etc. Covid was negative .

No mention of catheter training for me.

All the best

Bill

User
Posted 08 Sep 2020 at 14:07

Hi Bill

Hope all is OK for you.

Fingers crossed

Clare

User
Posted 08 Sep 2020 at 14:36

Hi Clare

Yes, no change from my post on your stream, still feel good after HIFU. Unlike your A will have to wait until next Monday to have the TWOC at UCLH. That’s NHS versus BUPA. No worries BUPA were there for my wife when she needed it but their rates double every 5years with age.

Not sure an early PSA will tell me much , so will wait as they suggest for 3 monthly checks, with a MRI after 12 months unless problems show.

May make a new stream then.

Will watch your stream to see your much earlier results with interest.

Good Luck

Bill

 

 

User
Posted 08 Sep 2020 at 15:06

Thanks Bill,

That is strange. He had it in 4 nights last time ( 3 nights took it to Sunday) and 3 nights for his FLA. 

you’d think protocols for removal would be roughly the same for NHS v BUPA.

 No PSA planned but an early MRI next week. He hated the last one as first time with a mask. 

If it’s a clear fail then our prof is clear it’s radical for our next steps so fingers crossed.

Have a good week. From memory first time with a catheter was a much bigger deal than this time ( probs due to familiarity)

 

Clare

 
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