Rog T's Cancer Blog - Important information if you are having a Prostate Biopsy

For those of you who are regular readers and have read the previous posts on Cancer, 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 51 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 gives 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. My latest PSA test in August was not quite so promising,  back up to 4.0, in other words the downward trend has stopped. 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 yesterday I had a prostate biopsy. This was the second time I've experienced this procedure. I wrote about the first one here - http://barneteye.blogspot.co.uk/2011/10/psa-tests-and-prostate-biopsy-blog-you.html - back on the 25th October 2011. Before writing this article, I reread this. When I wrote the blog, a week after the procedure, I didn't know I had prostate cancer and didn't expect a positive result. In fact I was convinced I was Ok and the whole thing would just be a a passing fancy in a midnight nightmare. Sadly, for me at least, it wasn't and I have had a lot of things to get my head around. Perhaps the most important thing I wrote in that blog was the key questions to ask your doctor

So what should I have asked?
a) Can I be knocked out or at least doped up?
b) When is it safe to have sex/masturbate?
c) How many samples will they take?
e) What happens if the test comes back as negative. What happens then?
f) How much fluid should I drink (I've been drinking as much water as possible)?
g) What should I avoid?

Yippee, I thought as I reread this. A strange response you may think. Well no not really. You see I learned one thing as a result of the first procedure. Question a). I asked this time. The doctor said I could have a general anaesthetic, but advised against it. Well let me tell you something very important. When I had the first procedure under local anaesthetic, I found the experience as disturbing as anything I've ever experienced. It has confirmed something I knew since I was given a suppository when I was four years old, having my tonsils out. I don't like having things shoved up my bum. As if that wasn't bad enough, as each of the ten samples was taken I had the sensation of someone flicking my testicles from the inside. By the time the procedure was over I was traumatised. I discussed the issue with my brother in law, who is a doctor in the USA. He informed me that they would never perform such a procedure under local anaesthetic. So this time I insisted on a general.

So what happened yesterday. I arrived at the day procedure department at Barnet General hospital at noon. I'd brought the Guardian and the Express to read during the wait. At around 1pm, I was called through. A nurse took my BP 128/88 and pulse - 51. All was good to go. Then I saw the anaesthetist.. I was asked a whole stack of questions. My name, date of birth, allergies etc. I was told that if it went wrong, I'd loose a few teeth (a bit like a bad night at the Bald Faced Stagg in Burnt Oak). Then the surgeon came down and started the consults. Each patient had the curtains drawn. There were four of us. Rather bizarrely, the curtain is drawn, but you hear every detail. One guy was having his forskin "eased", another guy was having a circumcision, the third was having a vasectomy. Then there was me. Now tell me if I'm wrong, but I was not impressed. We were all able to walk. Why on earth should our deepest medical secrets be discussed in earshot of other people, strangers? There was no earthly reason why we couldn't have the consult in a room with privacy. I am the worlds greatest defender of the NHS, but such matters should be dealt with in a manner that gives respect to the patient.

I was told I'd be the last patient to be treated. The doctor explained that they always started with the most problematical patient. The diabetic with high BP was clearly in front of me. I took the opportunity to read and have a snooze. The anaesthetist commented that I was extremely calm and relaxed. I replied that I relished the chance to chill out and relax. I think he concluded that I was a lunatic. A nurse fitted a line into my hand, through which anaesthetics would be administered.

Eventually I was taken to theatre. I walked down. I was asked to lie on my side. Monitors were fitted and then the anaesthatist announced they were giving me a gin and tonic to help me relax. I replied "Good". I looked up at the monitors and thought "this is having no effect at all". The next feeling I was aware of was one of warmth and comfort. I felt great. Then I woke up. I was back on the ward and it was all done. I felt absolutely fine. A nurse came up and asked if I wanted a tea. I asked for a bottle to relieve myself. I got a nice cup of tea, had a couple of biscuits and did a wee. The surgeon then came up and said "It all went well, your prostate was normal sized. You'll get the results in 3/4 weeks". I had a rather odd feeling in my nether regions, but apart from that I felt absolutely fine. The contrast with the first biopsy could not be more marked.

In 3-4 weeks, I will get the news. I am hoping and praying that this will be good. Whatever happens, I know that opting for the general anaesthetic was the right decision for me. I have been dreading the procedure. I can imagine that many men simply refuse to go back. The down side of that is that you will not know whether your cancer is developing and you are putting yourself in grave danger. Here is the answers to those questions as best I can find out

a) Can I be knocked out or at least doped up? Yes - the procedure can be done under  a general anaesthetic
b) When is it safe to have sex/masturbate? The consensus seems to be 3-4 days
c) How many samples will they take? At my hospital ten, don't know if this is standard. 
e) What happens if the test comes back as negative. What happens then? They monitor your PSA
f) How much fluid should I drink (I've been drinking as much water as possible)? At least an extra litre of water
g) What should I avoid? Vigorous exercise for 1 week

Of course we are all different. Some of the people I've spoken to have taken the biopsy procedure in their stride under local. If you genuinely think that it won't bother you, then have it under local, there are far less risks. People have asked me why I choose to share this private information on a public blog. The reason is quite simple. I was never offered the option of a general anaesthetic and I was discouraged from having one when I asked. Given the feelings of dread I had about the procedure, I had put it off for nine months. Having had the procedure under general anaesthetic, I now know that I have nothing to fear from it. The idea that anyone may not be getting necessary treatment out of the same fear chills me to the core. Our health is the most important gift we have. Cancer robs that gift from us, therefore anything which can help in the fight is the right thing to do. The reaction I've had to this series of blogs has been overwhelmingly positive. I believe that we should respond to cancer as a community, not as scared, frightened, lonely individuals, overwhelmed with fear.

Mr Tichborne, the result of your Prostate Biopsy is ....

So those of you who are regular readers of the blog will know (and thanks for all the support) that I had a Prostate biopsy a couple of weeks ago and today was the Big "C" day. In the various information I've read,  it said that for people with a PSA between 4-10, there is a 1 in 5 chance that you'll have the dreaded "C". I guess those are odds I'd take be happy to see for a team playing against Manchester City. You can currently get odds of 5/1 on Manchester City to beat Newcastle 2-0 with Sky Bet. I liked these odds, but when you are playing Russian roulette, the odds suddenly seem far more real - if I could avoid it, I wouldn't take a bet against cancer at all.

So anyway, as the appointment was at 9.50 at Barnet General, I had the luxury of a lie in. My usual tasty breakfast of a bowl of fruit and a bowl of porridge was at 9am instead of 7.15 am. Was I worried? Not really. With no symptoms and good odds, I've all along felt that it is good to have the peace of mind of knowing. So off I went. As Barnet General charge an extortionate £4 to park, I always park 1/2 a mile away in a sideroad and walk. As I walked up Wellhouse Lane, with the autumnal wind blowing and the rain lighly licking my face exlaimed "It's a fine day  for a hangin" with a grin, much to the bemusement of a nurse having a crafty fag.

As I enter the grounds of the hospital, I see someones Oyster card and library card lying in the bushes. I instinctively pick it up and hand it in at reception. "Thank you" the lady said. Always good to keep your Karma topped up on such occasions. As I was early, I had taken the Daily Express and read the views of Mr Yaya Toure on the current Manchester City team. He thinks that we have the two best teams in the premiership and that the second team would qualify for the Champions League. He's probably right. A good omen indeed.

Slightly early, my name was called. In I go and I sit down. The good doctor calmly announces "You had 10 sticks taken (Tissue samples). One from the left came back as slightly abnormal and one from the right right had 2mm of low grade cancerous tissue. We grade these on the Gleason scale and this is a 3/3, which is the most benign that we actually measure as a cancer". At this moment a rather strange thought popped into my head. Maybe I should write a song in 3/3 time in tribute to my problematic prostate. The cancer nurse was then summoned in to discuss all of the options. As there is a small amount of cancer and it is not of an aggressive type, it was suggested that a follow up biopsy and active monitoring may be the order of the day. I replied "I really did not enjoy the prostate biopsy and would rather have a look at another option if possible." The doctor asked whether it was the procedure or the side effects? -  I replied "Both". He suggested that maybe a scan could help. This seemed sensible. He agreed that it may help indicate where a follow up biopsy could be best targetted. He then explained that approx 30% of post mortems of men my age who die of unrelated causes show similar early stage cancers. He explained that if it had gone undetected, I'd probably have had no symptoms for ten years. The good news is that as it has been caught early, it can be monitored and dealt with.

There are options for treatment immediately, but there are side effects and implications for these. Given that I have no symptoms and a non problematic cancer at the moment, my inclination is to wait. We discussed changes to diet. It seems that dairy products can irritate it (high amounts of hormones) and various foodstuffs - brocolli, Pomagranite juice, tomato, green tea and watercress have been reported as slowing tumour growth. Much as I love cheese, I think that this will now become a very occasional treat. I intend to read up more on the nutritional aspects of this and I will report them here. My strategy would be to have a  scan to get a better assessment of tumour size. Assuming this doesn't spring a nasty surprise, have regular PSA tests and maybe an annual biopsy. At the time when it appears that the cancer is becoming less benign, I will then consider the various treatment options.

It is a bit daunting to be given the packs of info for MacMillan Cancer nurses. I feel a bit of a fraud and it all feels a bit unreal. The key thing is I'm not ill as such. I don't have symptoms, I don't feel unwell. If I make sensible lifestyle choices to my diet, it may have no effect on my life expectency whatsoever. What is odd is that I've always thought such news would freak me out, but I don't feel overly concerned right now. I've not discounted the fact that this could be denial, but I can't see what there is to deny.

I suppose the biggest irony of the lot is that as I typed this, an email from MacMillan Cancer relief popped into my inbox. It suggested I do this :-

London to Paris cycling challenge

4-8 July 2012 One of the most iconic rides in the world, you’ll cover nearly 500km in just four days and be part of a large team experiencing the undulations, flats and beautiful scenery of northern France. Finishing up under the Eiffel Tower in Paris, you will experience cycling down the famous Champs Elysées and wheeling around the Arc de Triomphe as part of our Macmillan peloton. Our most popular cycling challenge, you can find out more at macmillan.org.uk/londontoparis.

My first thought? Is it morally acceptable to campaign for a charity, when you are a beneficiary (not that I'm going to be needing MacMillan support any time soon). I've long supported MacMillan and other charities, so I am not going to stop now. I'm minded to do this run and once again ask my generous blog readers, who helped us raise £500 for Cancer research UK earlier this year to dip into your pockets again.

We live in an age where we have the technology and the scientific means to deal with many illnesses that 100 years ago where lethal. In many cases the secret is early detection. I've had my problems diagnosed early. As such, all things being equal, I will live longer than anyone my age who has exactly the same condition as me, but finds out about it when the symptoms blow up in 5, 10 or 15 years. That is why we should all use the fantastic services of the NHS to ensure we are screened for such illnesses.

And a final word on the NHS. One of the questions I asked, as I have private health insurance trhough my company, is whether or not the treatment and prognosis was in any way different if I used my private medical insurance. I was most heartened that the response came back "Most certainly not. When we are dealing with Cancer we give you the best treatment we can regardless of your ability to pay for private treatment".

When I was told that I felt very proud to be British and very proud of the NHS.Today has been a rough day. I've had far worse though.

PSA tests and Prostate biopsy - The blog you don't want to read

November the 8th. On that day I will either drink a lot of alcohol to celebrate or my life will presumably fundamentally change. That is the day I get the result of a Prostate biopsy. It has taken me from last Tuesday, when I was told I needed it, until today, to get my head around it. Some of us keep these things private. That was my first inclination, but hey, I'm a blogger - loud and proud. It would be a cop out to say nothing. It's not in my nature. I was in my favourite cafe, having a cup of tea and some advice my Dad gave me many years ago came to me. "Everything happens for a reason, if a bad thing happens to you and you can make a good thing happen to someone else, then you have a moral responsibility to do it". It seems that there isn't a wealth of information on the subject out there. The doctors always say "Do you have any questions" but generally you haven't thought of the most important ones at the time. I'm writing this in the hope that

a) It helps a few people understand whats happening
b) Anyone who has anything useful to add can leave a comment
c) Answers a few of those questions that you forgot to ask

So how did it start? In May I went to see the doctor because I had a problem with my knee and needed a referal for a consultant. He commented that he hadn't seen me for a while and suggested that as I was 49 an "MOT" would be a good idea. So I rolled up and had a plethora of blood tests.

When I went back for the good news, he said the PSA test has come back slightly raised. What is that, I asked. It is a new test which can indicate Prostate Cancer. At your age, it should be under 2.1 and it's 2.8. We discussed it and he advised a trip to the Urology department. He went on to explain that generally people with Prostate Cancer would have a far higher PSA, but it is best to be cautious.

So I went to see the consultant,w ho advised that the usual course of action is a course of anti-biotics and a follow up test. He advised that the test is pretty unreliable and can vary on a day to day basis. So in August I took the Anti Biotics and gave some more blood. The appointment was changed a couple of times and I eventually went back last Tuesday. The consultant said "Well the urine test was clear, but your PSA has gone up to 4.1. As this is on an upwards curve, I'd recommend a Prostate biopsy." We discussed the options and he advised that this was a logical next step. His advice was that it was unlikely given the state of my prostate and the relatively low reading that I'd have anything requiring radical surgery, but the earlier these things are caught, the better. He said that for many people with early stage prostate cancer all that happens is that it is monitored. I must admit I was shocked. I had expected the test to come back as OK. I was phoned later in the afternoon and the procedure was booked for last Saturday.

I'd not given any thought to what it entails and I'd not thought  to ask. I'd had a leaflet that explained "afterwards there may be some blood in stools, semen and urine". I certainly hadn't thought how this might affect me. It also said it would be done under local anaestic (ie I'd be awake). So on Saturday I rocked up for the appointment at Barnet Hospital. I changed into a gown and was told that they were running late. I sat in the waiting room, watching the saturday cooking show. Quite surreal really. A certain gallows humour amongst the other poor mugs pervaded. I suspect that the British have a fundamentally different approach to such problems than most nations. Bad jokes was order of the day and a general mood of mutual support "Don't worry, I've had four of them, it's horrible". I felt like a condemned man.

Into the treatment room. Again, I hadn't realised what the treatment consisted of. They stick something that looks like one of the spark machines that lights gas hobs up you bum and snip bits off your prostate. It makes a similar noise as well. The local anaesthetic is applied first. You still feel something. It is far more unpleasant than it is painful. After the fourth click, I asked "how many do you actually take?" I'd thought they took 1. The answer came back "10". This didn't make me feel happy and I wished I'd been given the option of something to dope me up. I will most certainly ask if that is an option if I ever have to have another one. After the 10th snip, they said "Now we'll adminster an anti biotic suppository". After that I lay on my back and got the good news about the side effects. "You'll be peeing blood for a few days and there will be plenty of blood when you do a poo. You'll also find clots and fresh blood in your semen". How long for? "For some people a few days, for some people several weeks". It's now Tuesday and so far I get a small amount of blood maybe 50% of the time when I pee. The blood in the stools was bad on the first day. As to the semen? I've been too scared to even think about that so far. I didn't ask how long you should leave it before testing the equipment. The consensus on the internet seems to be 3-4 days. I must say so far I'm not ready to cross that bridge as it is bad enough with the blood in the pee (even though it is a small amount).

So what should I have asked?
a) Can I be knocked out or at least doped up?
b) When is it safe to have sex/masturbate?
c) How many samples will they take?
e) What happens if the test comes back as negative. What happens then?
f) How much fluid should I drink (I've been drinking as much water as possible)?
g) What should I avoid?

In answer to g) The doctor told me not to play football or go to the gym for at least a week. If they had told me before, I could have cancelled my training session today a little earlier. Fortunately I had cancelled our Sunday night five a side already, but they should have notified me before.

Whatever happens, I'll be glad I had the tests. The earlier that anything is found the better. If there is nothing, then they have a baseline to monitor my levels going forward. I've found out that approx 1 in 5 people with a PSA between 4-10 have Prostate Cancer. As I'm at the bottom end of that, the odds are not too worrying. The examination said it was normal sized, so again that makes me cautiously hopeful.

If the news is bad then if nothing else, I've caught it far earlier than if I'd waited till  I had symptoms. As I've a family, even if the news is terrible, it means that I can sort things out in an orderly fashion. Sadly many people believe that burying their heads in the sand is the answer. It isn't. It just makes a bad situation worse and reduces any treatment options that may crop up. I hope to God that the tests come back all clear. If they don't then that bridge will be crossed at the time. I'm not worried right now although it is a bit of a black cloud on the horizon.

My advice? If you are approaching (or older than) 50 and you've not been to the doctor for a few years, get yourself an MOT. I really did not enjoy any of what I described above, but statistically you should be fine. I have no symptoms of anything, so don't assume that because you feel OK everything is OK. We live in an age where medical science can sort many things out. We live in a country where sorting it out won't bankrupt us. We are lucky. God Bless the NHS !