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.

Rog T's Cancer Blog - The midnight Wee Wee dilemma

Just a quick note before I start, for those of you who know the story, or are not interested in the background, read on. If you want the context of this before you start, scroll to the bottom and read the bit in bold. 

These days, finding inspiration for blogs is not always easy, but sometimes you see something that makes you chuckle, then makes you think. This blog is one such example, as I was inspired by a tweet from one of my favourite tweeters.

pic.twitter.com/RDxdzSl6MN

— Claire J Cheeseman (@cjcheesecake) January 18, 2021

I was surprised when I saw this. I didn't realise females had this issue, just goes to show how much I know! This picture got me thinking about the whole issue of 'getting up for a wee'. I have really no idea what is a normal pattern, despite being asked many times "are your patterns normal". I 've also no idea what is something we should worry about. I've never actually been asked to detail my getting up in the night pattern and I've no idea if it's actually relevant, so Ithought I'd share it and see if any of you had any ideas.

For those of us whe are male and suffering with one of the myriad of issues that are lumped together as "Prostate Problems", this is a daily dilemma. Although I have never suffered from any of the more serious symptoms of Prostate cancer, I have long needed a wee more than the next man! I've never been 100% sure if this is down to overconsumption of tea/beer/wine, especially at night. My mum would be turning in her grave, as she felt it impolite to discuss going for a wee, but I happen to think that sharing information on matters medical is a good way to help us live longer/healthier. 

When it comes to visiting the bathroom, I've noticed that Green Tea, which is meant to be good at slowing the advance of prostate cancer, is a nightmare for me. It literally goes straight through me. I have always assumed that this was a good thing, but I now never drink Green tea after 6pm, when I am going somewhere without a loo, or going on a long journey. For my nightly slumers, if I only have a glass of water by about 9pm, I might get through the night with one wee or even no getting up. If I drink tea, I'll get up at around 1am and again at around 4-5pm. If I have several pints of beer, it may even be four times. A glass of wine, will often spare me getting up, but a couple of bottles, I am not sure as I can't remember!

One of the most annoying things though is when you wake up sort of needing to go (as per Claires picture above). It's cold and you don't feel like going to the loo, so you lie there and realise that if you don't go, you won't sleep. So you stagger up, have your wee, then stagger back to bed. Only when you lie down, you realise that you were so keen to get back to bed, you hadn't emptied your bladder properly. You are back where you started. I have developed a strategy to avoid this. When I finish, I count to ten and then see if I need to do a bit more. Although this means that I don't get back to bed as quickly as I'd like, it also means that I don't get the dreaded double visit scenario and get back to sleep sooner.

Am I the only person who believes that overnight we get rid of far more fluid than we took in during the day. The number of times I've just had a cup of tea in the evening and had to get up two or three times, removing what seems like six litres of fluid? Does your body save it all up from the night before to teach you a lesson. I've been tempted to actually measure the amount, but I suspect if I used the measuring jug we make gravy in, my wife would conclude I am a weirdo and divorce me. This is nothing more than curiosity, but I am convinced that what goes out is never the same as what goes in. I did an A level in biology, but they never teach you useful things like this. 

One of the pieces of advice that we get when we are diagnosed with cancer is to "look out for changes". In truth, I have no idea whether any of this has got worse. I have noticed that I find it hard to make the journey from the City back to Mill Hill on the train without going to the loo, far more than I used to, if I've drunk a lot of beer. It is a godsend that the new Thameslink trains have multiple loos. The older rolling stock was far less well supplied and the toilets were far more often out of service. It was not unknown for me to get off en route, find a pub, use the loo and have another pint! Another key factor is the ambient temperature outside. When it is cold, it seems that you are far more likely to need the loo. I've never really understood this, as you'd think the body would seek to retain warmth rather than remove it more efficiently.

I don't feel that there's been any rapid change. I actually always had to nip to the loo quite frequently. I can remember hearing a radio program on prostate cancer when I was about 30, convincing myself that I had it as I used the loo far more often than recommended. I went to see the docter who told me not to be so ridiculous and try drinking less beer. Ironically, when I was diagnosed aged 49, I was quite surprised.

So anyway, I guess what I've been trying to say, ina very roundabout way, if you have noticed an sort of change in your patterns, go and see a Doctor and get it checked out. The earlier they catch these issues, the more options you have. None are necessarily pleasant if you have got Prostate cancer, but if you are caught early, as I was, you can have treatments that have less unwanted side effects. Had I not been diagnosed in 2011, I'd not have realised it was turning nasty in 2015 and right now I would be in nowhere near as good a place.

----
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 54years 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.

  I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?