Update October 2017

Update October 2017

On the 22nd September I had my yearly consultation with Dr Wheatley, my endocrinologist, at the Princess Royal Hospital in Haywards Heath. Two week prior to my visit I had blood tests at the same hospital.

During the visit I had my height & weight measured and was pleased that I've lost over 5kgs!

Dr Wheatley ran through the blood test results and I'm pleased to report that they are all normal. My Prolactin level has reduced to 40 Down from a high of >40,000 and the Doctor asked me to reduce my Cabergoline from 5 tablet per week to 4.

The best news was my PSA level which has now fallen to 1.2, down from a high of 4.1 prior to my Brachytherapy. 

All in all it was a great visit and a good start to my holiday the next day.

As our trip to Secrets Silversands in March was a bit of a disaster (I had a bad chest infection and spent half the holiday in bed) we decided to go back in September.

I also decided to splash out & book Virgin Atlantic's Upper Class seats as a bit of a treat & it's certainly a good way of travelling. We had access to the Virgin lounge at Gatwick where we had a good breakfast and some lovely cocktails. 

We were rather let down with the wheelchair assistance that I'd booked in advance for Bev. To be frank the lack of assistance at Gatwick is appalling and I've written to the airports management about it.

On board we were'nt able to have the seats I'd previously reserved which was annoying. The service also came up short which was disappointing. The seat was quite comfortable and I did manage to get some sleep.

The wheelchair assistance at Cancun airport was superb. Although Virgin had not contacted the airport in advance Bev was offered a wheelchair straightaway and we sailed through Immigration and Bagage only to have all our cases searched at customs but this didn't hold us up much. The member of staff took us out to our taxi and there was no fuss.

The reason I've mentioned our holiday is Donna at St Luke's had arranged to call me the following Monday for my six month telephone consultation. I was sitting beside one of the pools with a lovely cocktail when Donna called at 10am (4pm UK time).

Donna was very pleased with my PSA result and my general health so we decided that I can now go onto yearly consultations with six monthly PSA blood tests. If my PSA increases I will contact Donna straight away. It was good news so I celebrated with a few more cocktails.

I'm pleased to say that I didn't put on any weight while on holiday and I'm determined to keep below 100kgs for the foreseeable future.

I'm back at work now and as always October is busy. I've already bookings for November and curiously lots for January & February next year. 

I think I shall end here and I will write again after Christmas.

August 2017

I've just received my next telephone consultation appointment from the Brachytherapy nurses Doona Higgins and Claire Deering at St Lukes in Guildford, Surrey. Every six months I talk about any concerns I have and discuss further treatment options (if required).

Prior to the consultation they send me this form:

The nurses are able to compare my answers with the previous to see how I'm progressing. The first three sections deal with urinary issues in some detail. I'm still taking one Tamulosin tablet each day which helps reduce Prostate swelling. Without the Tamulosin I still have trouble passing urine, even after missing just one capsule it can be difficult. I've pretty much cut out Caffine as this seems to irritate my bladder and I have the urge to urinate much more often. I have caffeine free tea and caffeine free CokeCola.

The pink section deals with erectile disfunction in some detail. I'm still being prescribed Sildenafil (Viagra) which I take twice a week to help with blood flow. I can confirm that it works well most of the time.

The yellow section deals with Bowel function. I haven't experienced any bowel problems at all.

Great to see the work that Jeff Stelling completed with his March for men - 

https://prostatecanceruk.org/get-involved/march-for-men/jeff-stellings-march-for-men

Apart from raising much needed funds for Prostate Cancer UK

 https://prostatecanceruk.org

Jeffs' march raises even more awareness of the disease which is so important.

I've recently had interesting conversations with friends and colleagues and it worries me that the messages are still not betting across. Some men are aware of Prostate Cancer but don't realise that there are generally no symptoms at all at first, in my own case I had none. My Cancer was only discovered as a result of a routine PSA blood test which I started having when I was in my late 40's. My Father died from complications following Prostate Cancer back in the early 80's so I was very aware.

In my opinion  every man over 50 should start having PSA tests. One test in isolation doesn't mean much but it does create a baseline for comparison with future tests. My PSA was measured at 3 until it rose to 4.1 and following further tests the Cancer was discovered

I'd welcome any medical professionals opinion on PSA testing. I don't know the costs to the NHS and I don't know of any other regular test apart from physical examination. 

Am I right in thinking that the physical exam is what puts men off?

At the end of the day it only takes a few seconds and apart from a little discomfort it doesn't hurt.

I urge all men to become aware, there is plenty of information on hand. The NHS, Prostate Cancer UK and Macmillan Cancer Support have very helpful information on their websites.

Men need to talk about Prostate Cancer a lot more.

I've been feeling really fit this year, I think the combination of treatments for Prostate Cancer and my Prolactinoma have worked wonders. Having said that I'm currently experiencing some Sciatic nerve pain. I was working away for a few days and I must have jarred my back somehow, I don't remember doing it though. The pain has been difficult to deal with. I've used Ibuprofen and other painkillers and I've also had a session with a sports therapist John Harris which helped a lot. 

Back in 2015 I met Nicole Ablack-Ramkay and her husband Savik at Secrets Silversands in Mexico. Nicole is a fully qualified Yoga instructor and ran the daily sessions at the resort. we met again in 2016. Nicole is also a Pain Resolution Therapist based in Toronto, Canada 

https://www.nicoleablackramkay.com

and when I messaged her she offered to help. Last Saturday we connected via Google Hangout (similar to Skype) and Nicole was able to see my posture and offered a range of exercises which I've used every day this week with good results. I still have some pain but it is much better.

Work has been very busy and continues through August. I'm currently at One Whitehall Place, London for Eclipse Presentations covering the venue managers' summer vacation and next week I'm back at CTF doing some equipment testing.

Looking forward to our next vacation, back to our favourite resort in Mexico.

Thats all for today.

My Research on the Incidence of Prostate Cancer

Hi, It's me again

I've been spending this evening looking at the ProstateCancerUK website: https://prostatecanceruk.org and thought I would share my views.

I've used some of the data from the Prostate Cancer UK website, (I hope they don't mind)

I've also used data from the CancerResearchUK website:

http://www.cancerresearchuk.org/health-professional/cancer-statistics/incidence/common-cancers-compared#heading-One


Prostate Cancer is the most common cancer in UK males accounting for over a quarter of all male cases! This compares with 14% lung cancers and 13% bowel cancer.

Over 47,000 men are diagnosed with Prostate Cancer every year, thats 130 men every day.

One man dies every hour from Prostate Cancer and related illnesses, more than 11,000 every year.

One in Eight men will get Prostate Cancer in their lifetime.

Over 3000 men are living with, or after Prostate Cancer.

Age  

Prostate cancer mainly affects men over 50, and your risk increases with age. The average age for men to be diagnosed with prostate cancer is between 65 and 69 years. If you are under 50, your risk of getting prostate cancer is very low. Men under 50 can get it, but it isn’t common.

Afro Caribbean men

Afro Caribbean men are more likely to get prostate cancer than other men. In the UK, about 1 in 4 Afro Caribbean men will get prostate cancer at some point in their lives. It's not yet known why this happens, I assume it must be Gene related.

Body weight

Research shows that being overweight or obese increases your risk of getting cancer that’s more likely to spread (called aggressive) or advanced prostate cancer (cancer that has spread outside the prostate).

Height

I've also read that taller men have increased risk of aggressive Prostate cancer - It seems bit odd to me (but what would I know).

Help

When I was first diagnosed the heIp received was fantastic. When I received the bad news there was a Macmillan nurse waiting to talk to my wife and I about the various help options available to me. I received a very helpful booklet:

http://be.macmillan.org.uk/Downloads/CancerInformation/CancerTypes/MAC11639EarlyprostateE420150227.pdf

I visited the Prostate Cancer UK website and contacted one of their nurses to discuss my concerns and she arranged for a fellow sufferer to contact me to offer advice. I found this particularly helpful.

If you have any concerns about the Cancer & Treatment, don't worry, there is lots of help available.

That's all for today, will be writing again soon

Keep Well
Ian

PSA still going down

I had my latest telephone consultation with Donna Higgins, Brachytherapy Nurse, St Luke's, Guildford two weeks ago.

During the consultation we discuss how I'm feeling and any concerns I have. Donna asks a series of questions based around a questionnaire which I fill in a couple of weeks prior to the telephone call. 

We discussed my tiredness which I'm afraid is very common in Prostate Cancer patients. I've been coping quite well but I know it is the cause of some worry at home.

My PSA reduced slightly from 1.7 to 1.6 and Donna seemed very pleased with this. We also discussed any issues I'm having with frequency of urination and any issues with my bowels. As the Prostate is situated very close to the bowel there can be problems with irritation and frequency. I haven't noticed any irritation and there has been little change in my frequency with the exception of some recent constipation.

As part of the consultation we discuss any issues with my potency. At first I found it difficult to talk about but over time it's become easier. I've noticed a general lack of sensation and I had assumed that this was age related. Donna explained that I could, if I wish, visit a specialist PhyscoSexual councillor to discuss this and any other potency related issues. I'm taking one Sildenafil tablet twice a week and this helps with blood flow, but the downside is that I've found it does effect sensation.

I've decided not to visit the Physco Sexual councillor just yet but the option is there at any time.

My general well being has been good, I've been looking after my diet and eating much more fruit. I'm still a little over my ideal weight but as I feel good I don't think it's a problem.

I still take other medication for my Proclactinoma problem. Daily I take 2 Levothyroxine tablets to counteract my low thyroid output. I use a Testosterone supplement and take a vitamin D supplement. I also take one Tamulosin capsule to reduce Prostate swelling. Every two days I inject Genotropin to supplement my low level of growth hormone.

Twice a week I take Cabergoline which has helped reduce my Prolactin from a level of over 40,000 down to less than 400.

It sometimes feels that I'm a drain on NHS resources!

Work was quiet over Easter with the exception of a good event in Oxford for the Skoll World Forum (worth a look on Wiki or YouTube). I'm currently away working at the National Motorcycle Museum for CVS. Tomorrow I'm back in London on a long day on Thursday for Eclipse then at Cheltenham for three days next week again with CVS so can't complain.

Lots in the news today about a 'breakthrough' in the detection of Prostate Cancer using advanced MRI scanning.

To the best of my knowledge MRI has been used for some time and it is a great tool for finding and pinpointing areas of the Prostate which look suspicious. In my own case I had an MRI which showed several abnormalities. I then had a biopsy which proved that I did have several cancerous cells. The MRI is a fantastic guide for the biopsy doctor to use to ensure accurate areas of the gland are tested.

However, MRI is expensive and as far as I'm aware there is no planned national screening planned.

Which leads us to the original problem - How can Prostate Cancer or suspicion of PC be detected in the first place.

In my own case I have had PSA tests for the past 10 years which regularly produced a PSA level of 3. A test in early 2015 produced a result of 4.1. In it's own not a high level but as it showed a 33% increase my doctor thought further investigation was sensible. Even a physical examination failed to detect and problems.

At that time, and indeed never, have I had any symptoms related to Prostate Cancer.

This is obviously a worry for the male population as a whole. It's very easy NOT to have a test

Should GP's advise a regular PSA test in all males over the age of 50? It's a simple blood test which takes very little time. If every male over 50 had, say, a test every 3 years I wonder how many cases could be discovered before it was too late?

I wonder what the cost of such testing would be? And whether the test would save money in the long term by reducing the number os serious PC cases?

Perhaps there are some doctors out there who might wish to comment?

Any advancement in the detection and treatment of this killer is welcome, but we must all remember that PSA testing may well be the place to start.