Rog T's Cancer Blog - My six monthly review

So where are with me with my cancer journey. Last Tuesday, I had a PSA test and I received the result on Thursday. This was a precursor for my consultation today with Professor Eden who performed my radical prostatectomy on August 9th 2023. Anyone who has ever been through a cancer experience knows that the period between the test and the result is one of the most tense and stressful periods. Although a sane and rational response to such events is to not worry and wait and see, human beings are not robots and we worry. The test result arrived on Thursday morning, which meant that I only had two days fretting. I was delighted that PSA levels were recorded as undetectable. That means that from a cancer perspective, I have no worries for three months, until we repeat it all again. As I already knew the result, the conversation with professor Eden was rather short in regards to cancer. 

We then discussed the issue of continence. This is to do with how your own body is healing and adapting to the 'plumbing changes' between the bladder and the penis. I have had virtually no issues. I was functionally dry from the moment I had the cathetar out. I had a couple of spills when drinking excessively. As I've moderated this significantly of late, this has no reared it's ugly head. I have however found that certain movements, such as straining to lift heavy items (a part of my job) can cause a small spill, especially when my bladder is full. If I have a PA speaker to move, I take the precaution of doing a wee first, but sometimes I forget. Professor Eden assured me that this will improve for up to 18 months. It has only happened a couple of times, with small amounts, I am not massively concerned, but it is not overly pleasant. 

Then we got to the issue of sexual function. This has improved significantly of late. With the aid of 5mg of Cialis, I am able to get erections. This was a major issue for me. Professor Eden tells me that the HIFU treatment I had in 2016 will, to some degree, impair this. He feels that my recovery would be far more advanced, had I not had HIFU in 2016. I explained that as I was 54 at the time and I was not given a convincing argument for nerve sparing, I felt HIFU was the right decision then. In fact, had I not had the HIFU and just taken what was suggested to me then, I'd not know about the neurosafe procedure (a procedure that offers the highest and most scientifically viable prospects of preserved sexual function following a radical prostatectomy) and may have been worse off than I am now. He is of the view that HIFU is an ineffective method of cancer control in many cases. All I can really say is that I am comfortable with my personal decisions, but respect his clinical opinion with regards to cancer control. I would still make the same choices presented with the same information. 

As my mental resilience has improved, I also felt that I should send an email to my previous consultant, Professor Mark Emberton at UCLH, who performed the HIFU procedure. Most men opt for HIFU due to concerns about sexual function. Those who put primacy on cancer control would, sensibly, opt for a radical prostatectomy in the first place. I felt very disappointed that neither the UCLH surgical or HIFU team mentioned neurosafe or that there was a possibility for nerve sparing following HIFU. I only found out via a chance conversation with a friend, who's father had the procedure. He persuaded me to get a second opinion. I do feel that patients should be told there are options available, but you may need to fuind them yourself. I was lucky in as much as I had health insurance. In the end, it was a no brainer for me, even though I had to fund a part of the treatment. 

I shared these thoughts. To my mind, even if neurosafe is not available on the NHS, for men that put a Professor Emberton sent a courteous reply and mentioned and stated 

"Any treatment that has to be administered after a primary treatment can be challenging. When surgery fails radiotherapy is the only option. When radiation fails options are limited and we often resort to salvage focal HIFU, but with increased side-effects and risk. We are finding that men can have a very good outcome if surgery is necessary after focal treatments. You are a testimony to that. 

Neurosafe is being done at UCLH as part of clinical trial and the lead on this is Prof Greg Shaw (https://pubmed.ncbi.nlm.nih.gov/35869497/). The NHS is unlikely to approve it until the publication of the study. There are not studies that I could find on the use of NEURSAFE in a post-radiation or post-focal therapy setting. 

I very much believe that the salvage prostatectomy should be an expert operation and done by those with experience. That is what we do at UCLH and that is what they do at Guy’s as well. This is the best way to ensure the best outcomes."

I am pleased that UCLH are taking this seriously. I do hope that neurosafe is certified and adopted as a treatment by the NHS. I struggled to get my head around the implications of surgery for a long time and I am only now really feeling comfortable with where I am in my recovery. Had I not opted for the neurosafe option, I would almost certainly be in a darker place mentally. 

Quite by chance, this morning, BBC Radio London contacted me and asked if I could contribute to their Trends at 12 slot. For this I had to pick three current news topics and discuss them with Eddie Nestor - You can hear this at www.bbc.co.uk/sounds/play/p0h3wdwn (LISTEN AT 2.11.22)

As King Charles is in hospital with a dodgy prostate, it seemed a good excuse to discuss a few issues around the subject, not least the fact that I was having my six month review (also a good opportunity to plug my band's gig on Saturday - wegottickets.com/event/600663 but that's another matter). I like a chat with Eddie as he doesn't hold back. If nothing else, Charles speaking publicly will mean a few more guys get checked, which will mean a few more of us will be alive in ten years time. I am not necessarily a fan of the Monarchy, but I support anyone with a platform who uses it to promote good preventative medicine. 

My biggest criticism of the NHS is not the National Health Service, it is the National Sickness Service. It does far to little to stop us needing it's services and as a result is overwhelmed. But that is another blog.

--- About this feature 

For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about.  On 9th August, I had a radical prostatectomy and am currently clear of cancer, six months on. Early days, but hopefully the surgery has cured the problem of cancer. My continence is good, the next batttle is erectile function.

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 61 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 was put 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 again 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). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). 

My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. 

In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12 and I opted for a radical prostatectomy, using the neurosafe process to give the best chance of maintaining sexual function and continence. 

Got the picture?

And finally. I'm a musician. I am blessed to play guitar and sing in the finest band - The False Dots -  on Planet Earth and I wrote a song to get blokes to get a PSA test and talk about this stuff. Please have a listen. It's a banging tune! There is nothing more uplifting than hearing an audience join in for the last line!

Radical prostatectomy post op consultation four weeks on - Rog T's cancer blog

 This monring I had an 8am call with Professor Eden following my radical prostate biopsy on 9th August. Professor Eden was pleased with the results. The pathology report showed that 10% of my prostate was cancerous. This was a far higher percentage than I'd previously thought (4% was mentioned).

Here is what the pathology report said

Microscopy: Adenocarcinoma of acinar type; Gleason score 4 + 3 = 7, right lobe; 3 + 3 = 6, left lobe; Approximate tumour volume 10%; There is no extraprostatic extension and the tumour does not involve the base/bladder neck or seminal vesicles; There is no lymphovascular invasion; The apical, base/bladder neck and circumferential margins are clear of tumour. The paraffin sections confirm the frozen section findings of clear margins. There is focal fibrosis in the right lobe posteriorly that would be in keeping with previous HIFU. 

Here is what the picture looked like. Note being a pathologist I cannot really draw too many conclusions, but I am assuming that the circles on the picture denote cancer. 

This is positive and seems to indicate that with regards to the cancer I am cured, although I will be having regular PSA tests for the foreseeable future to ensure that this is the case.  With regards to continence, I have had no major accidents. There is a small degree of spillage, mainly after urinating, if I forget to count to 10 before 'tucking up'.

As to the erectile function. Professor Eden has written to my GP to request tadalafil 5 mg a day to try and restore function. According to the professor, the nerves in the area are quite bruised. The medication, which is similar to viagra, will help stimulate blood flow. 

Professsor Eden feels expressed the opinion that surgery was definitely the correct option given the condition of the prostate. I am relatively lucky in as much as the cancer was caught at an early stage and had not spread beyond the boundaries of the prostate.

In life, you have to deal with the cards the way they are dealt. This journey has been a difficult one. I imagine that for the foreseeable future, every PSA test will be dreaded and any positive results treated with great relief. Cancer is deemed a lifetime disablity. For me, the process was a slow burn over 12 years. In the intervening time, several of my friends have also developed the disease. One in eight white men and one in four BAME men will fall foul of this disease. Just consider that when you are out with friends. I am a passionate believer in men getting screened, be it PSA tests or MRI scans, which seems to be a more accurate measure. If I hadn't had a PSA test in 2011, I'd not have known. I would have found out when the cancer had spread. Men do not talk about these issues, which is not healthy behaviour. Some people have said to me that things like erectile function are private and have questioned motivations for speaking about it here. To me this is a childish and foolish view. I belong to several Facebook prostate support groups  (here's one and here's another) and through these I've learned a lot. Sharing information helps you to get the best options. If the medication I've been prescribed has the desired effect, I will mention it here, so that if there are people who are being given different treatment options that don't work see it, they can ask their doctors. Likewise, if it doesn't work, I will ask my doctors about other treatments I've heard about. 

Bear this in mind. There has never been a better time in the history of the planet to be diagnosed with prostate cancer. It can be devastating, but there are new treatments being developed all of the time. There's more and better support for everyone. The treatment I had, with neurosafe and nerve sparing was not available when I was first diagnosed. When my uncle was diagnosed in the 1970's, his testicles were removed, to lower his testosterone levels. Things have moved on. Sadly, my Uncle died eventually due to the cancer. If any member of your family has had Prostate cancer, you are far more likely to develop it, so you really should be considering a test. Early treatment is the key. 

I wrote a song to encourage men to get tested, based on my own experiences. If you like the music, please come along to the Dublin Castle, Camden Town on Fri 15th September, to help me celebrate my survival of this phase of my life!

--- About this feature 

For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. 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 61 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 was put 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 again 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). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). 

My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. 

In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August, I had a radical prostatectomy and am currently recovering. Early days, but hopefully the surgery has curedthe problem of cancer. The new challenge is to recover full continence and erectile function.

Got the picture?

3 days on from Catheter removal, how is it going? Rog T's Cancer blog

Wednesday was a big day for me. It was 14 days since my radical prostectomy procedure and I had my catheter removed. Just in case you don't know what a catheter is, it is a plastic pipe that goes into your bladder and is connected to a bag, which allows your body to remove urine whilst your body recovers from the surgery. At the end bladder end of your catheter is an inflateable balloon, that, once in place, is inflated to ensure that the pipe doesn't come out. 

When you have a catheter, you feel like you need a wee the whole time. The inflated bag tells your brain that your bladder is not empty. You get day bags and night bags. The day bag is a small bag that can hold half a litre of fluid. The night bag connects to this and contains 2 litres. There are stop cocks on both to allow you drain them. You tend to drain them as often as you drink, although the night catheter is emptied in the morning.

It is inserted under anaestehtic, so I've no idea what that sensation is like. When it is removed, the balloon is deflated and then it is pulled out. It is one of the more unpleasant sensations I've ever experienced. It is only painful for maybe half a second, but it is a horrible feeling. Once it is removed, you have to drink a litre of fluid over 2 hours, then urinate naturally, to the level where your bladder is empty (or functionally empty). There are two potential problems at this point. The first is that you can't urinate. If this happens, the catheter goes in and you will need further medical examination. The second, for men following a radical prostatectomy is that you are incontinent and have no bladder control.

I am pleased to report that my bladder function is almost normal. I've had no major accidents, just a few small dribbles. I'll be wearing pads until this stops. The other issue for men is erectile function. This is affected as the nerves that manage erections are next to the prostate. I had nerve sparing surgery, so theoretically, I will be able to get normal erections eventually if the nerves have not been affected. For me, this was a big deal, and informed my decision of surgeon. Professor Eden felt there was a good chance that the nerves could be preserved. After the op, he said the surgery went well. Apparently it can take up to three years for this function to come back, if it does. Thus far, there are no signs of life, but there is still a degree of soreness and bruising and so it is not abnormal. So fingers crossed. 

The big question is how is my mental health following the procedure. The last six months has been extremely stressful. Once I had made my mind up to have the procedure, I've felt a lot better mentally. Now that the op is done, I feel that a cloud has lifted. Of course, there are many possibilities that may occur that will not be great. I probably won't know for a several years whether the cancer has definitely been despatched. I have a consultation on the 4th September with Professor Eden, where he will discuss things like pathology results. I will hopefully have a clearer indication then. That will, most likely, be the next installment of this blog. The other thing I have to still get my head around is the implications on my sex life of the changes to my body. Again, I will have a clearer idea after I've spoken to my consultant. It is early days. I've started to accept that my life may have taken a turn in a direction that I didn't want in regards to my sexual function. Of course it is early days at the moment, no conclusions can be drawn. I do however feel it is necessary to get your mind in the right place. The bottom line is that whatever will be. One way or another, I've got to live with that and get used to it. For now, it is fingers crossed.

So what''s it like having a RARP Radical Prosatectomy? - Rog T's cancer blog

 So here I am, back at home, having a cup of tea with a cathetar in and a very sore midriff. Excuse the spelling, which may well be even worse than usual. It's 2pm on Friday afternoon, I've just taken 2 paracetamol and I thought that as a diligent blogger, I really should share what this was like, just in case anyone was wondering. 

On Wednesday morning I got up at 5am. A quick swig of water (nothing else allowed). A quick shower and then off to Mill Hill Broadway for the 5.47am train. It was a glorious morning, as my Dad would always say "a fine day for a hanging", when the sun shone but he had to do something he really wasn't looking forward to. My destinatation was the London Bridge Hospital at the Guys Cancer Centre. I had to change trains at Blackfriars, which is always a station that I enjoy visiting just for the views of London.

I used to see this on a daily basis, now it is a rare treat. I arrived at the Guys hospital 20 minutes earlier than my 7am admission time.

I was ushered up to the 12th floor (I think - my brain is a bit fogged due to the residual effects of the anaesthetic). I was ushered into my room by a porter and put the telly on. A nurse came around, checked all of my vital statistics, asked my name and date of birth ( A process repeated ad infinitum over the next two hours). A nice red wristband was attached to my wrist. We had a brief discussion about the procedure and I signed a few consent forms. Just after 8am, Professor Christopher Eden, who was performing the procedure came in. He explained what he was going to do and asked me if I wanted to change my mind. I informed him that I wanted him to get on with it. He explained the intricasies of the RARP Radical Prostatectomy with Neurosafe procedure performed by a DaVinci robot, which is used to ensure that all of the cancerous tissue is removed, with the minimal damage to the nerve bundles in the prostate area. This treatment is not available on the NHS to the best of my knowledge. It gives men the best possible chance of preserving erectile function and avoiding incontinence. I am lucky to have private medical health care, which made this affordable (there is another blog coming on this subject, but today I am talking solely about my experience with the operation). 

I also saw the anaesthetist. She was very matter of fact in her manner and enquired about allergies, reactions to anaesthetics etc. After all of the paperwork was done, I had about an hours wait before I was walked down to the operating theatre, by a very nice young Italian nurse from Verona. We had a pleasant chat about how she was finding London. When we arrived, there was a debate about the trolley I was on and whether it was long enough. I was given a spinal block and a full anaesthetic. I said a quick hello to professor Eden as he went in. The spinal block was not overly pleasant. As it takes effect, it feels like sciatica, but the sensation doesn't last very long. Then I was given oxygen and the anaesthatist asked me where I was planning to go on holiday next. I don't recall the answer, as the general anaesthetic knocked me out.

I woke up around three hours later. I hadn't got a clue where I was. My initial thought was that I was still in Lourdes with my HCPT group (I was there last week) and I had to get up to help someone who needed care. The nurse in recovery was rather bemused when I tried to get up. I realised that this would not be possible. Around my midriff was rather sore and I was very tired. I was wheeled back to my room. I must have dozed off when a nurse woke me up. She advised me to try and have a drink. I was told that I could have light meals, as people generally felt nauseous (I didn't). A short while later, Professor Eden arrived. He informed me he'd spoken to my wife and that the procedure had been successful. He had been able to completely spare my nerve bundles. I thanked him and he went off. I just wanted to rest. I had a few glasses of water and asked for a cup of tea. As I started to feel more with it, I realised just how painful my midriff felt. The nurse was keen to get me up and in the chair. She informed me that the more quickly you move, the better you recover. For my evening meal, I had a light consomme and some bread. I wasn't that hungry. 

I had a fitful nights sleep. The cathetar is not particularly pleasant and when I moved it hurt. I was able to take paracetamol every six hours, which to some degree numbed the pain. I the morning, Professor Eden popped in again and told me I could have some tea and toast if I was hungry. He'd seen the tweet I'd posted and we discussed the issue of prostate cancer and men. I told him that I was very relieved to have now had surgery. Treatments such as neurosafe, which give men the best option for maintained sexual function, should allay many mens fears about surgery. There are men dying as they do not want to lose function. I am 60 and it bothered me. For a younger man with no children, it could be devastating to be rendered impotent. IN my opinion, the NHS and NICE need to recognise this and give younger men, without the money, the option of neurosafe. Professor Eden told me that the NHS simply doesn't have the resources or pathologists to do it. I suggested that the NHS needed a plan to change this. His opinion was that the NHS doesn't have a plan for anything and our politicians are to blame, being focused on the short term electoral cycle. Regular readers will not be surprised to learn that I wholeheartedly agreed with him.

I spent the rest of the day being cajoled to get up and walk around. I had a visit from the physio team, who took me for a little walk. It was rather painful due to the operation wounds. I was told not to lift more than 5kg, not to drive for at least 7 days and to walk around as much as possible, as this is key to getting your body working. I will have to wear the cathetar for two weeks and then I will have to do some serious pelvic floor exercises, to get my full continence back. I was also told that whilst the stitches are in place they may affect this. The view is that I should be back where I want to be within six weeks.

I spent last night in hospital. I got a better nights sleep. This morning I had a quick handshake and thank you very much with Professor Eden, then going through the discharge protocol. This involved making sure I knew how to manage the Cathetar, which I will have to change/empty myself. My dressings were changed, the view was that they looked in good shape. Some blood tests were done and then at 11am, Clare arrived to take me home.

As I mentioned, I am sitting here, having a tea, feeling a bit sore and tired. I am immensely relieved that I have had the treatment and from what Professor Eden has told me it is very likely to be successful. A journey that started with a PSA test in 2011hopefuly finishes with this procedure, although there will be follow up checks etc. Had I not had that PSA test, given that I had no symptoms at the time, I probably would never have realised there was a problem until it is too late. Prostate Cancer kills 11,000 British men a year. If the government and the NHS got their act together, than number could be nearer zero. When you think of it, that is criminal.

Here's a little song I wrote about my situation

The False Dots · Dont be scared of a finger up your bum