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Tom Lisett lives in England. He was 53 when he was diagnosed in February, 2008. His initial PSA was 21.80 ng/ml, his Gleason Score was 7, and he was staged T1c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

I was diagnosed with prostate cancer two days before my 53rd birthday. On the very same day my father-in-law was kidnapped by pirates off the Somalia coast. No....I am not joking! He was eventually released 47 days later!

I did not react to the news of my cancer very well at all. To start with, I was fine but as time went by and I was waiting for MRI / bone scans and then the results....I became very agitated and was not nice to live with. I have a young family, two beautiful girls (10 + 13 at the time) and I feared leaving them.

My operation went well on the 28th April and I was discharged 2 days later. Incontinence has not been a problem and I was "dry" 6weeks after the op. Unfortunately, I am impotent and still am some 10 months after the op.

I have just seen my consultant today and been told that my PSA has doubled again for the 3rd consecutive month and that he is going to refer me to the radiologist to start RT.

UPDATED

April 2009

23rd April. I have just returned from my appointment with the radiologist. She has recommended a six and a half week course of EBRT and she has referred me to the BRI in Bristol, over an hour away. I asked if treatment could be delayed as my local hospital (less than 1 mile away) is due to open a dedicated RT building on 1 May. She will not let me wait and I have to start my treatment ASAP.

I will let you know how I get on.

UPDATED

June 2009

Hi Folks

Just a quick update on my treatment; I am now on my third week of RT at the BRI in Bristol. I am having to get up two or three times in the night to relieve myself and also have some minor bowel iritations. However, apart from feeling a bit tired, ( I think this is due to the 100 mile round trip each day ), I feel really good.

I do not know what I was expecting from my treatment, but I feel very positive that this is going to be the final thing that we have to go through and life will soon get back to normal after the treatment is finished.

I will let you all know how things progress from here....take good care of each other.

Tom

UPDATED

July 2009

I finished my EBRT treatment two weeks ago and I am feeling on top of the world (nearly!)

Looking back over the last few months, I have been pleasantly surprised at how mild this form of treatment has been. Yes, I have been very tired on occasions but a 100 mile a day round trip, continuing to work and the treatment itself must contribute to tiredness!!

I had a few problems both during the treatment and for the past two weeks with having to get up 3 or 4 times a night with both bladder and bowel problems. Fortunately these problems are getting much better.

I now feel almost in a sort of limbo situation. I am now back to the waiting game and should get a letter in another few weeks to go back and see my consultant radiologist. Hopefully she will be able to give me the all-clear and I can start to rebuild my life.

I feel good. I feel confident. I just hope I am not disappointed again.

Take good care of each other.

Tom

UPDATED

November 2009

I thought that I should share my recent experiences with you all. I was originally diagnosed in Feb 2008 which was then followed by surgery. Following 3 post op rises in PSA, I underwent 37 sessions of RT at Bristol. Throughout my RT, I carried on working and was "man enough" to handle and deal with things.

What a fool I was. I have only just returned to work after an enforced absence of seven weeks due to severe depression. The first two weeks were spent sleeping for at least 14 hours a day....I was exhausted and emotionally drained. I have had some tremendous support from my GP and more importantly my wonderful wife without whom I would never have been able to see the light at the end of the tunnel.

My advice is simple; whatever stage of the treatment journey you are on, be very aware of your emotional well being. It is a very long journey and we all need to take time and ensure we get enough rest. Depression is a nightmare; recognise the signs and seek help as soon as possible. [Dr. Charles "Snuffy" Myers has said that depression is one of the most under-diagnosed aspects of PCa that he comes across in his practice. Tom is right on the money here.]

It is now over five months since I finished my RT and as yet I have not had any follow up consultations; perhaps that also played a part in my recent problems.

UPDATED

January 2010

I had the best ever Christmas present by being told that my PSA was now undetectable. To quote my consultant "the RT has done it's job". We had a really happy time over Christmas and now feel that I can concentrate on the rest of my life.

My next appointment is not until June 2010.

Tom

UPDATED

April 2011

I have continued to be monitored every six months and am happy to report that my PSA appears to be behaving itself!

However, I have begun to suffer a lot from passing blood in the urine. This started three months ago and I had Ultra sound and CT scans. This did not indicate any problems so I was told to forget about it. However, I have recently returned from holiday in Dubai where I spent three days in hospital with chronic blood loss through my urine. This time the CT scan has shown a thickening of the bladder wall and a 13 x 13 x 15 lesion on the inside of my bladder. I do not yet know if this is Cancer related as I am still awaiting an appointment with my Urologist.

UPDATED

May 2012

It has been over a year since I last updated and my situation has changed considerably.

Since my last post, I have had three major incidents of frank Hematuria, a large loss of blood through the urine which required hospitalisation. I have also continued to suffer from severe bowel problems which unfortunately has had a major impact on my life.

My self esteem and confidence sank to such a low point that I was offered early retirement on the grounds of ill-health. I was severely depressed and, on occassions, had to go home to change after soiling myself.

Despite complaining to my Consultant about my bowel problems at every 6 monthly check-up, I was never offered any treatment for my bowel condition. I was simply told that it "will get better".

It was not until my own GP stepped in and suggested a colonoscopy, that it was discovered that my bowel was damaged and that I had Radiation Colitis. However this diagnosis, and subsequent steroid treatment has come over two years too late. I feel quite bitter and let down by this.

When I was first diagnosed with Prostate Cancer, I knew that my life would never be the same again. However, whilst delighted that I appear to have beaten the Cancer, the consequences of my treatment choices will be with me for ever.

I write this update not to depress or worry anybody unnecessarily, but to make those unfortunate enough to be faced with tough decisions about their treatment to have as much honest information as possible. Good luck to you all and feel free to contact me at any time.

UPDATED

June 2013

It is now over five years since I was diagnosed with Prostate cancer and thankfully I can now talk in terms of being "cured".

I chose surgery as my primary choice of treatment and used Radio Therapy as a salvage option.

However, my quality of life has been poor since treatment started. Despite having Nerve Sparing surgery, my impotence has had a major impact on our lives. The toxic damage to my bowels caused by the RT caused me such distress and embarassment that I was forced to give up work.

I have learned to live with these side effects but would caution everybody in a similar position to take careful note of these side effects risks when deciding on treatment. However, having issed that caution, I reiterate that I am now cancer free so perhaps it was all worth it anyway.

UPDATED

July 2014

Since my last post several major events have happened. I suppose the most important event is that my PSA is still undetectable. I therefore consider myself cured and cancer-free.

You will have noted from previous posts that I have had to give up work due to depression caused by being doubly incontinent. However, after a FOUR YEAR delay, I was referred to University Hospital in London for a consultation with a gastroenterologist about my uncontrollable bowel problems. Up to this point, my "treatment" consisted of lots of sympathy and Imodium. I was also treated with steroid enemas to no benefit.

It took this Registrar approximately 6 minutes to diagnose that I was suffering from acute bacterial overgrowth in my lower intestine. He told me that this IS COMMON in patients who have had pelvic radiation. He prescribed a rotating course of three different antibiotics; two weeks with type one, one week off, two weeks with type two etc.

The result.......total cure. I no longer am confined to the house for fear of defecating myself. What a difference this has made to my life.

Although I am mightily releived and greatful to have this problem solved, I am extremely angry that it took four years to get the referral that I was promised at the six month stage.

UPDATED

August 2015

As I write this update I am lying by the pool in sunny Cyprus.

It came as a bit of a shock when I received the email from YANA; has it really been a year since my last update? I re read my own story and became quite tearful (silly old bugger ). However I can now look back at those very dark times and smile BECAUSE I HAVE SURVIVED. It has now been over seven years since diagnosis - seven very long and painful years for my wife and girls. I sometime have to keep reminding myself that they too have been with me every step of the way I think emotional roller coaster of a journey. They are amazing.

I don't want to state the obvious, but as much as you need the support of your family, they too need support and help from their extended family. It is vital that they have other people that they can talk too. There will be dark times when they will need to download without upsetting you.

I am honoured to be a YANA mentor. My email address is published and I and my wife are here to offer any help that we can give. Never be afraid or ashamed to ask for help. I could not have managed without it.

This disease come into our lives and shakes us to the core - beat it like I have. God bless.

UPDATED

November 2017

It is now nearly 10 years since my diagnosis and I'm very happy to report that all is well.

My general health has improved to the extent that I felt able to return to work. My recent PSA was undetectable and I now consider myself completely cancer free.

My wife and I have recently emigrated to Bahrain and I am enjoying my retirement in the sun.

I was prompted to update my story as I got talking to a young physiotherapist whose father has recently been diagnosed. I was able to point her in the direction of this site and to provide living proof that this disease is bearable.

Stay strong.

Tom's e-mail address is: tscmlisett AT btinternet.com (replace "AT" with "@")


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