Rog T's Cancer Blog - Everything you wanted to know about receiving HIFU treatment for Prostate Cancer

For those of you who are regular readers and have read the previous posts on Cancer, you can skip this first paragraph. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested. This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 53 years old and in October 2011 I  had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I'm now on a program of active monitoring.  In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0,  February 2015 it was  up to 5.5  and my latest in August 2015 was down againg at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer), albiet with small mass. Today I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

So here I am, post procedure. Given that HIFU is a relatively new procedure and that there is not a huge amount of info about it, I thought I'd write up my experiences, so that if youa re going to have the procedure, you know what to expect. The doctors tell you what to expect, but like many things, they really can't share the experience with you as they are not on the receiving end.

Lets start with the pre procedure protoclol. I'd been through a pre-op admission procedure in December, where they checked I was healthy enough to be anaestetised. As the treatment is part of a trial, I also had an extensive session with a consultant, to fill in any questions I may have had. So I was told not to eat anything after midnight last night and then to drink only water until 7am. I had to be at UCH at 7.30am, which meant catching the 6.34am train. They'd advised me to bring pygamas just in case it all went horribly wrong as well as any medication I may need (I don't take anything).

So I arrived at 7.15am a the MacMillan Cancer Centre of UCH. I was fifteen minutes early and so had to wait in the main reception. There were a few other rather worried looking chaps lurking around. At 7.30, we were told to go down to the day surgery reception. So I went down and shortly after was asked to follow a rather nice nurse into the ward. As with all hospital procedures, there is the process of confirming names, addresses, DOB's, checking allergies, next of kin, etc. Then they took my blood pressure. This is normally pretty good, but was slightly higher than usual 135/95. They asked if I had high BP usually. I said no, so the nurse said "you are probably worried". I'm a pretty calm individual, but yes, I always think I am going to die when I have anasethetic. I don't usually tell anyone though (aprt from youd ear reader).  It is the same as flying. I have never yet boarded a plane thinking it would land safely.

Then a member of the consultants team came around and gave me the figures. One in 500 have something horrible where the back passage and the urine tracts have an issue that may require surgery to correct. One in twenty have "leakage" three in ten need tablets to maintain an erection following the treatment. He explains that the bum will be sore after due to a rather large probe beng shoved up it, that I will have a cathetar for 5-10 days, that I'll have to come back to have it removed and that most patients say the cathetar is the worst bit of the experience (interestingly a friend who has had the treatment emailed me ast night to say the same thing). He also explained that the first thing would be an enema. Once all of this has been explained (again), I sign the consent form. There may be a few other things I was told, but I wasn't writing notes.

 Then the anaesthetist comes around, and explains just how they will medicate you. He said that they'd take me down, put an oxygen mask on me, a line in my hand and knock me out. I'd be out for 1-2 hours. Once more they checked my name, DOB and allergies. he asked if I'd had a general anaesthetic before. Yep, quite a few times actually. Three prostate biposies, two ear operatoions, one inguinal hernia and partridge in a pear tree. No reaction? Nope.

Once he was satisfied that he wasn't going to kill me, he departed with a cheery "see you later". Then the nurse came in. I was given two theatre robes, a pair of paper grundies, some stockings to stop blood clots and some slippers. I was told that I could put these on shortly before I was ready to go down.

After about twenty minutes, the nurse came back and said "right get ready, then I'll give you an enema". So the process began in deadly earnest. After the enema, she said "right, you have to wait 5-10 minutes before going to the toilet. This is one time when my Roman Catholic upbringing comes in highly useful. As regular readers will know I am massively superstitious. At such times, I simply shut my eyes and say the rosary, counting it out on my fingers. Whilst I am sure Richard Dawkins wouldn't approve, it helps pass the time and makes me feel calmer and as if I am doing something positive to help my chances of surviving in the great health lottery. The rational part of my brain may say otherwise, but if you have ten minutes to focus on not doing a poo, it is as good a way as I've found (not trying to preach here, but it is  a serious point that it is good to have some sort of mental exercise to make the time pass when you literally can't do anything and have to wait for something - it is worth having sort of brain stimulation, be it reciting the lyrics of Sgt Pepper, reciting your times tables or saying a repetitive prayer - it really does help). It worked so well that the nurs ethen came in and said "right go to the toilet now". Shortly after that I gathered my stuff together and walked with a member of the anaestetic team to pre op. It was around 9.15am.

They put a line in my arm, attached me up to a monitor. My blood pressure was now even higher 195/105. Clearly I was less calm than I wanted to be. An oxygen mask was put on my face, I was advised to breath heavily and then the anaesthetist said "right we are making you go to sleep now".

And how lovely a sleep it was. In fact, had I not woken up at all, it was so lovely I really wouldn't have minded. But happily, wake up I did. The clock said 12.15. The consultant came in and told me it went well. He said a few other things, but I didn't recall. Then I had a chat with the rather lovely nurse, who originated from Nigeria. She told me that she was planning her 60th birthday party. I was surprised, she looked much younger. I told her this which went down very well! She got me a cup of water and we had a good old chinwag. Ignorant fools will tell youy that the NHS can't cope with the number of immigrants in the UK. I can assure you, and I've seen rather too much of hospitals, it certainly couldn't cope without them.

Once I was deemed to be compos mentis, I was wheeled back to the ward. More blood pressure checks and a small snack and a cup of tea. I was told that I'd be given a bag of meds to take home and when I was  deemed ready. A quick examination the cathater bag was done, which was duly emptied. Having been told the cathater was the worst thing (and sure this is early days), it is not half as awful as I imagined. I do have the sensation that I want to  pee and poo all the time, but I was told this is quite normal.

The doctor came around and asked if I remembered seeing him after the op and what he'd said. Initially I didn't but then it came back to me. The message was all good. The next stage is to heal up. The meds included some antibiotics, some laxatives and something to "ease the flow", as well as a couple of spare bags. I was advised to try and "use the tap" after 24 hours. I must say having a catheter is an odd feeling. Not great, but hopefully be next week a thing of the past. It should come out on the 25th.


At around 3pm, I was deemed ready to go home. And here I am. It may seem a strange thing to do when you get home, to spend an hour writing a blog, but it focusses the brain and takes the mind off the discomfort. I hope if you are reading this in preparation for HIFU it helps.

Although it is unpleasant, it is not painful and the potential for side effects is considerably less than radical surgery. I do hope I am in the 70% who are completely Ok






---------------------------------- Ranty footnote ---------------------
If you just want to know about the procedure and are not interested in my views on the NHS, then stop here. As a blogger, I do however have to pass on what I've learned. 

Once again I am struck by just how blessed we are to have the NHS. I guess that if I was in a country without such a thing (ie nearly everywhere else), I'd have paid thousands for this. I am probably uninsurable to boot. I was quite irritated by another patient who was moaning at the nursing staff that he was last on the list. He was asking why he had been made to turn up at 8am, when he had to wait for hours. I felt like shouting at him "Go private if you want to choose such things", but thought better of it. We do take it for granted. We are one tiny island that is blessed to have chosen an enlightened government in 1945, who changed us for the better. As far as I am concerned, any politician who attacks the NHS is attacking me personally (and my children). In UK law we all have the right to self defence, don't we. I am a pacifist and I don't subscribe to harming other people, but I do wholeheartedly believe that any politician who attacks the NHS is either extremely ignorant or extremely dangerous (or both). We can afford a society that gives tax breaks to billionaires and foreign multinational companies, so don't tell me we can't afford to fund the NHS.

Rog T's Cancer Blog - Part II - Friday the 13th, The day of doom? The NHS crisis bites

This blog is part II of todays Cancer Blog series (read part one here). I urge all Barnet residents who are under treatment for Cancer to read this blog and complete the poll in the sidebar.

I am in a state of shock. Today I discovered something which I cannot quite comprehend. As I mentioned, I had my appointment changed from a face to face meeting to a "telephone consultation" at 11.40 (see scanned letter), so I arranged my day around this.

I planned all of my meetings & business commitments to fit in with this schedule. I had an important work related call at between 10am & 11am. The plan was have a cup of tea and chill until I got the call.

So at 10.40, I was in the middle of a call on my work mobile and the home phone rings. So I pick it up and sure enough it is the Urology department. I quickly had to end the other call. The one rule I have always had is that my health comes first.



As I mentioned, I had recently had an MRI scan and a PSA test that had seen a rise from 4.0 to 5.5. On previous visits to the consultant, he's shown me the scans and drawn diagrams etc to explain the diagnosis. I wasn't happy that this wasn't available as an option. So I started the conversation by asking why the appointment had been changed. The answer shcoked me. I was told that there was a huge backlog of appointments due to a lack of facilities and meeting rooms. To me this was shocking. Cancer patients are being denied the opportunity to have a proper consultation in Barnet. However great a telephone manner, how on earth can you be reassurred if you cannot see the MRI scan results? The person who called was not a member of the team I'd met previously (to my recollection) so how could I even be sure it was a qualified doctor? Now as it happens the person I spoke to seemed knowledgable enough, but as I mentioned earlier, I was seeking a degree of reassurrance.

So what was the news? Well they want me to come in for a full biopsy under general anaesthetic. Apparently this is a different kind of biopsy to the previous one. They take far more core samples and they do not access the Prostate via th anus. Apparently the side effects are pretty similar, but the risk of infection is far less. So not only am I having a telephone consultation, but we are discussing surgery for a potentially life threatening disease on the phone. For me this is disgusting.

This is the situation that the NHS finds itself in as a result of the current Tory lead government. Barnet Hospital trust effectively went bust and has been taken over by The Royal Free. The Royal Free have now put in place a huge cost cutting exercise, to remove face to face appointments and replace them with phonecalls, do discuss surgery with cancer patients. Now if we simply accept this, then what will be next? So I told the person I was speaking to that I wanted him to tell his management that I considered this highly inappropriate. I said that I wanted it recorded that I think that anyone getting results of tests, discussing surgery or anything else which is beyond the level of simply getting routine test results should get a proper face to face consultation.

So on to the results. Well he reassurred me that the biopsy was "just part of the protocol" and not related to the MRI reslt, I asked what the MRI result was. What I heard did not quite make sense. I was told that there was no change from the previous and that the rating was 3. Now previously I was told that the mass was undetectable. As the radiographer marks the scan, how can it be 3 if it's undetectable? As I wasn't there to see, how could I be reassurred.

As to the rising PSA? Well again "Nothing to worry about" as it is within normal limits. He stated that I should only be worried if it doubled. Well the thing is that it has. My first test in 2011 was 2.8. It is now 5.5 which is virtually double. I pointed this out. He said "That was 2011 and it has been stable since. He explained that the Prostate grows and this raises the PSA naturally.

So where am I? Well I have yet another procedure to be performed. I've been told that the MRI is OK and the PSA is OK. And I've also been told that my local hospital has not got enough meeting rooms to let me see my consultant.

When it comes down to it, my health comes first. If the government cannot run a health service where I can get to see my consultant, then we need a different government. I am angry, frustrated and worried about what the future holds for me and the hundreds of other people who are "on the waiting list" and are getting a phone call over the next few weeks. This is not trivial. Please complete the poll in the sidebar. It is anonymous. The more people who complete it, the stronger the message we can send.

Rog T's Cancer blog - The results of your MRI scan are

For those of you who are regular readers and have read the previous posts, you can skip this first paragraph.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.  For those of you who aren't, here's a quick summary. I'm 49 years old and I recently had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gives me a 3+3 on the Gleason scale. I'm now on a program of active monitoring. I've no symptoms and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?

Well, if you've read all of these cancer blogs, next time you read it the previous paragraph will change. Today I had the first of my follow up sessions on active survelliance since I was diagnosed as having a low grade prostate cancer on 8th November. I received my latest PSA test result and the result of my MRI scan. Which means that the next blog will have to have the preamble updated.

It may sound odd, but I hadn't actually given todays consultation much thought. I have just been too busy. I have a studio to build, a blog to write and another couple of projects which have completely filled my mental bandwidth. I also have a friend who has a serious cancer and a bad prognosis to cope with. This morning, I had my meeting with the specialist at 11.55am. How did I prepare? I went to North Finchley to video the traders protest against parking fees. I bumped into Mrs Angry and VickiM, the two esteemed lady bloggers of Barnet, along with a whole bevvy of traders, photographers and filmmakers. It seems that the idea of traders carrying a coffin down Finchley High Road was a great draw. I felt a strange sense of irony that I was going to an imaginary funeral before a meeting which may (although unlikely) give me some very bad news.

My good lady wife insisted on accompanying me to the meeting. As I've been in rude good health recently, I suspected she wanted to make sure I hadn't made the whole thing up as an excuse to have a permanently bad mood (only joking, she wanted to make sure that if I found out something horrible, I'd have her support). I picked her up on the way back from the demo. She wanted to make sure I was mentally OK, I wanted to show her the video I'd shot.

As regular readers of this cancer blog will know, I've made a few lifestyle changes. I've gone semi vegetarian. I've cut out meat (mostly apart from the odd treat) and gone organic. I'm drinking green tea instead of black with milk. I'm drinking the pomegranite and eating my broccoli (which I loath). I've always been fairly active, so my sport has simply been maintained. I'm now  10kg lighter than when I started. This is down to better eating (not the cancer eating me).

Oddly enough, I rather suspect that I wish I'd adopted this diet years ago. Eating meat as a treat rather than a norm agrees with me. I enjoy the odd steak (I had a beautiful cut of venison on saturday, first meat for a week). I enjoy cooking, so the challenge of transforming a box of organic veg from Abel and Cole into a weeks worth of tasty meals is a challenge I relish. I enjoy eating the mushrooms with tumeric, pepper and ginger that the diet I'm following recommends. I enjoy the fact that the green tea and water I'm drinking has resulted in the fact I've not had a hangover for three months, even though I've drunk way enough to warrant a monster headache. I believe that this is because my liver and kidneys are working far more efficiently than they have done for years, without all of the fat, omega VI and other crap to clean up. In May I was told my cholesterol was "slightly high". I had it tested again last week and will be interested to see how this has responded to the new diet.

So as you may have gathered, I entered the meeting with a positive mental attitude. We sat down. I must confess that my doctor is not a man I'd like to play poker with. He gives absolutely nothing away. When he gave me the cancer diagnosis, I honestly thought he was going to give me good news, until he pulled the "C" trump card out. "Left side 5 sticks clear, 4 of five on right clear, 1 stick with 2mm tumourous mass, Mr Tichborne you have cancer" or words to that effect. With this guy, I don't know how good or bad it is till I'm out of the room and the door is shut. Please don't take this as a criticism of him, it isn't. If my job was to give people bad news, I've no idea how I'd approach it.

So we sat down. "The results of the MRI scan are clear. Your PSA level is down to 3.5" he said. I responded "So we can cautiously say that this is good news?". He said "Well it is better news than if they had found a tumour or the PSA level was up". He then said "You are sure you don't want to consider treatment options?". Now to me this sounded like there was something I'd missed. I asked what exactly the MRI report said. He read it out and it indicated everything was OK. He then said "Sadly, we can only tell you what the limited technology at our disposal indicates, it is not necessarily accurate". So I enquired further. He responded "Mr Tichborne, you are 49 and you have a long way to go. Things can change". He then informed me that I should have another PSA test in May and another biopsy in October. This was the course I'd already agreed previously. I really didn't enjoy the previous biopsy and I do wonder how beneficial it really is at this stage. I am however not a doctor and there are graveyards full of people who thought that they knew better than the bloke in the white coat.

I have a friend who was a doctor and I asked him why on earth we can never get a straight answer from a doctor on anything related to cancer treatment. He gave me an answer, which I sort of understood. he explained "Listen Rog, for years you've said how much you fancy Uma Thurman. Hypothetically, Just suppose that I told you, I'd managed to get her phone number and got her round for an evening of passion, with my smooth talking charm, I could tell you what her phone number was and what I said to her, but would it necessarily work for you?" I responded "We'll I'd certainly give it a go". He then said "But just suppose I caught her at a time when she was lonely and vulnerable and she just wanted to see someone she didn't know. Just suppose she'd got that out of her system and moved on. You wouldn't know why your approach hadn't worked and mine had, would you". I said "Well I see what you are saying". He continued "Cancers are a little like that. Two people can have the same cancer and yet the same approach will work completely for one person and fail miserably for another. We don't know why. Just as you'd never know why your approach failed with Uma". He then continued "That is why you need to be careful when people say that "it worked for me"". Ignorant fool that I am, I still don't completely get it. Last week I had a pleasant evening with a friend who told me quantum physics and mathematics will ultimately resolve every problem in the Universe,  he believes with no shadow of a doubt that science is the solution to everything. Two days later I was told that to understand the treatment of cancer, I had to understand the whims of fancy of Uma Thurman. It's a strange world we live in.  

Of course, I'm happily married, so if I was caught having an evening of passion with Uma Thurman, that would probably prove far more deadly than my prostate cancer seems right now. Have a pleasant evening. I certainly intend to.