Some here may remember that in 2015 I had HIFU within the 'FORECAST' Study providing treatment for men who had failed RT. I gave an account of that here which rather extended more than I expected. https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience
The HIFU did reduce my PSA but it has since risen very slowly but persistently and I did consider FLA in America but decided not to pursue this for personal reasons.
In January 2021, I spoke with the Oncologist who administered my HIFU in 2015 and she agreed to give it another go provided a template biopsy showed I was suitable and that I passed a preop for the procedures. The MRI was done in February so off to a good start. Unfortunately, delays not of my making followed . The template biopsy scheduled for the 18th May had to be cancelled because my local GP Surgery organized only a 'dip' urine test instead of the required full cultured one and this was not acceptable for the biopsy and there was insufficient time to do the required test. The Biopsy was then done on 8th June . I was then given a date of 27th August for the HIFU, quickly followed by this being cancelled due to lack of a technician. A rescheduled date of 31st August was given but then I was told that the Anaesthetist was not happy with the ECG and wanted cardiac tests done. The hospital letter had let slip that concern had been expressed when my ECG was examined prior to my biopsy on 8th June but they went ahead because the biopsy was only under deep sedation rather than anaesthesia. Knowing I was going on to have to have anaesthetic for the HIFU, they ought to have expressed concern then and not waited just before the operation on 31st August to voice concern leading to the operation being cancelled again.
So we are now into September and with the support of my GP, a request was made for my local hospital to organise the various tests required asap. Someone there omitted to fast track these tests and I had to personally intercede. So cardiac tests not completed until 2nd October. (Had to wait for a strap on 48 hour monitor to become available). Results studied and sent to my GP copied to me by letter of 19th October. Report concluded in view of reassuring tests no follow up required. So by November I now start emailing the person who I had been previously asked to contact at UCLH but emails were unanswered as she was on long leave but did not leave automatic reply to say so and to contact someone else. I did eventually start ringing and emailing somebody else and said I would refer this to PALS as I have been let down.
I was then given an appointment for the HIFU procedure on 14th December which much to my surprise went off without problem. However, my GP had to get preop tests done at short notice to facilitate this, doing some of the tests himself. He picked the moment to ask whether I would give another talk to students on the HIFU and the earlier Hadron treatment I had – a sort of quid pro quo. If nothing else, this shows the need to prod things along sometimes, especially at UCLH where the treatment is excellent but the administration is very poor but this is by no means unique to UCLH.
As to the HIFU last Tuesday, this was pretty much identical to my previous time I linked to at the beginning of this post so I will not repeat detail.
I have just received a follow up appointment for next May but will be wanting to see how much PSA has fallen from the 1.97 immediately before the HIFU, much sooner than that.
Just as well I had procedure when I did as was told UCLH is cutting back on operations due to Covid pressure.
If anybody has any questions, I will do my best to answer.
Edited by member 22 Dec 2021 at 19:25
| Reason: Deleted ref to another way with Catheter Bag as told not good to use my way
Barry |
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Great stuff Barry. It's interesting and inspiring reading your high tech reports, the research and travelling you're willing to do. All the best Peter
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I received focal therapy (NanoKnife) at UCLH for an anterior lesion on the same day! We may have crossed paths (Westmoreland St??). I was released with an indwelling catheter, to be removed locally 3 days later, on Friday. Basically both the District Nurse and Urology at the local hospital wouldn’t do it and told me to go back to London. I’m interested in how you have arranged to get it removed? Also in your strategy of using the night bag to avoid pulling.
Anyway - and this becomes quite a story (do let me know if I should move it elsewhere) - back I went early on Friday to UCLH and sat around for hours drinking water but only passing very small quantities of urine. However, bladder scans apparently showed I was not approaching urinary retention and they discharged me with around a dozen tubes to self-catheterise and a jug to measure and record how much urine was left in the bladder each evening. In retrospect this baffles me, as I had passed so little (possibly my body absorbed a lot of the water), but at the time I so wanted rid of the catheter that I agreed.
On the approach to Euston station I went into retention (had desperate urge to pee but couldn’t pass a thing). I self-cathetered there and all the way home on the train, it was a nightmare journey - as was the wait in A&E. Self-cathetering kept me going - there was a lot of blood and clots, and I think I was actually deprioritised because I was managing to keep my bladder from being completely full and their bladder scans reflected this! I was highly anxious about running out of them and only used them when it became truly unbearable. Eventually a doctor with some urology experience put me on a 3 way catheter (it also irrigated my bladder), drips (antibiotics I think) and took blood. This was a relief, and I fell asleep with the help of some valium just after midnight. Just before 3am a urologist woke me up, said my urine was now running clear, the bloods were fine apart from low sodium (kidneys ok), and could I take a pee. Which I was able to do - copiously! it felt so wonderful I didn’t question being kicked out of hospital without further ado at 3.30am. They needed the bed, but they too discharged me too early: by 6am I was back in retention, then back in A&E with the remaining self-cathetering devices. By the afternoon a doctor installed an indwelling catheter and sent me home with further antibiotics. To be removed on 25 December by the District Nurse! I’m nervous about that not just because of the day but because the DN wouldn’t remove the first one. And that it could happen again. It’s a bit more flexible as there’s no superglued holder on my thigh, but still hurts when sitting down, putting on socks etc.
Is it the night bag’s tube you run under your belt? Is that enough to hold the bag in place on your stomach? Is the urine ok flowing up?
The IRE itself apparently went according to plan (MRI on 31 Dec) - though I didn’t expect my testicles and penis to come out badly bruised, given it’s transperineal. It was a small lesion but the procedure seems to have generated a lot of clots.
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Great you’ve had it done eventually! Hoping your PSA responds well to this latest treatment Barry.
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great news Barry - keep on being you x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thank you for member support and also post from JAJ on his focal experience of Nano Knife (Irreversible Electroporation.) Some considerable time ago I did consider this treatment but UCLH told me the trial of this had ended and they had stopped doing it. They also said that a Choline Pet scan they had given me showed I had cancer in an Iliac Lymph Node which would rule out this treatment anyway, also HIFU. It was important for me to know whether this was correct, because if so, my options would be reduced to various systemic forms of treatment. I therefore sent the scan to 3 other major hospitals I had been previously involved with and none of them thought the node was infected as the uptake of Choline was not great and the node was still the same size and shape that showed on scans done in 2007/8 when compared. I therefore asked UCLH if they would do a 68 Gallium PSMA on the NHS which they declined. So I paid for this scan to be done privately elsewhere and presented it to them. UCLH then did another MRI from which it was concluded that the cancer was thought to be confined to the Prostate only and eventually having initially been told they would not administer a second HIFU treatment, the surgeon who did my first HIFU agreed to do this as detailed in my post. So I had done a bit of research on Nano Knife and discussed treatment with a centre in Germany before this was ruled out because of the supposed affected Lymph Node. Maybe I did well to avoid Nano Knife although hopefully the experience related here is normally not so bad.
My HIFU was done at the UCLH Macmillan centre, although I know the UCLH Westmoreland former Heart Hospital building where I have had previous tests/treatment. I live in North Devon and am about 50 miles drive away from my nearest connecting train link to Paddington Station after which I usually get a bus or cab to one of the UCLH buildings for appointments. However, due to Covid precautions and the wish for me to avoid travelling on public transport for so long, plus I was not to drive for 24 hours after anaesthesia, I passed an assessment to be picked up early by car and returned home to Devon after my Transperineal Biopsy and on attending for the HIFU. So left home about 5.30 am and arrived home about 11pm the same day. each time. I was released in the care of the driver but it was just door to door and without problem.
Before leaving UCLH they arranged for my catheter to be removed by my local catheter clinic at a minor hospital near me. I received a telephone call on 15th December asking me to attend the catheter clinic next Wednesday for this purpose. Antibiotics, pain killers and laxatives were handed to me along with pretty comprehensive notes, urine bags and valves. I fitted one of the two leg bags before being taken home.
Edited by member 22 Dec 2021 at 16:38
| Reason: Deleted ref to night bag with catheter as told best not used way I adopted.
Barry |
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My experience was perhaps not specific to the IRE treatment - going into retention is always a possibility, and the TWOC didn’t, well, go the way it should have. Must admit one of the attractions was not being catheterised for long - now it’s in until some as yet unspecified time after Christmas. The follow-up scan at the end of the month will shed light on the treatment itself, which has only just become available via the NHS.
I was the opposite of you - had tests at UCLH Macmillan, treatment at Westmoreland St. I do prefer the former - new, friendly customer-facing staff…closer to Euston! - getting done in one day like you did sounds ideal. I stayed at a hotel the night before and after. I saw a few patients wheeling cases around Westmoreland St, presumably having stayed the night before and returning home the same day..
I wish there were a ‘catheter clinic’ here, it seems such an obvious thing to have. And it’s as if there’s no ‘N’ in NHS: I had to travel over 200 miles to London because my District Nurses wouldn’t do it. Being so far from home is not good when you run into retention. They’ll remove the one I've got now, apparently because it was fitted in my local A&E - some time after Christmas.
I had ProSys stuff from both UCLH and my local A&E, it seems to be standard issue. A&E gave me 7 single-use 2 litre night bags as well as the reusable one (still using the reusable one). Neither gave me a night stand. UCLH stuck an anchor thing to my thigh to hold it in place, A&E didn’t. Both have pros and cons. I could walk more easily with the fixture in place, but can now adjust more easily - including switching legs to my side of the bed! Strap it very tight to my thigh but it still slips a bit when walking. Still nervous about passing stools, though I’ve been on the lactulose for 8 days.
Good luck with the TWOC tomorrow, Barry - let us know how it goes.
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Hi Barry
Glad to see it all went well ,
I am under the UCLH in W Street
Operation in June 2021 for removal of stones in Urethra , all good for two days , stones now back in Urethra constant pain , bleeding day and night , next appointment by Telephone Jan 2022.
Good luck
Barry
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Hi Folks,
Catheter removed as planned this morning. I was a little concerned that it might hurt but after the nurse let the air out of the balloon, it was withdrawn without my even realizing it had been done! I was to drink plenty of liquid and ring her back four hours later to advise whether I had been able to pass urine, which I had. I used a dedicated transparent receptacle for this so I could see whether there was blood in the urine. There must have only been a miniscule amount as the urine was almost imperceptibly tinged. As when I had the HIFU procedure in 2015, the soreness/pain was caused by the catheter and was the only reason I took some of the supplied pain killers, so with this done there remains only a slight soreness where the inside of the penis head was irritated and this should be better in a couple of days or so. This apart, I wouldn't know the HIFU had been administered were it not for a very few small dark specks I saw in the urine bag.
By opportunity of this post, I report that I was told that it is not good practice to have the urine going upwards to a bag, (although this worked fine for me). The blue holder for the bag is meant to be hung on the side rails of hospital beds, NOT from the headboard. In the circumstances, I have deleted previous references I made to the way I used it. So if ever I need a catheter again, hopefully not, it's back to leg bags for day use and bag in pail at night.
About three years ago I was told that further treatment would not be administered direct to my my Prostate by UCLH as it already had been subjected to RT and HIFU. There was also the possibility that calcification could make it difficult to focus the ultrasound on the tumour. This was when I started looking at FLA (Focal Laser Ablation) in the USA. However, there were a few reasons why I decided against this and looked for alternatives nearer home. I found that the lady surgeon who had done my HIFU previously at UCLH was Chief Investigator for a trial using Photo Dynamic therapy for Prostate Cancer (SpectraCure P18). I asked if I could be considered for this and received a call from her in which she said that the fact that I had had HIFU previously made me ineligible. However, she said she would be prepared to do another HIFI if scans, biopsy and preop favourable. This was a big surprise in view of what the other consultant had told me. And so it happened but for the last time. If PSA and scans show more treatment is needed in future, it will have to be systemic, most probably HT, something I have been shying away from since 2008. Actually, UCLH wanted to start me on HT in 2015 but the Marsden agreed with me to hold off.
A lesson you can take from this is that some consultants take a different view to others and some are more flexible than others.
Barry |
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Great information of your perseverance should I require another HIFU with UCLH. Thanks a lot. Good luck and Merry Christmas.
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It's impressive that the different hospitals didn't automatically support each other and a major hospital would change its mind. All based on your research and perseverance.
Keep it up, Peter