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!