THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
Until diagnosis, my end of years life plan was in place ie: Sell my business at around age 60. Thereafter live the summers in England and between travelling spend the less pleasant months at my home in Miami USA where I am now.
Then it all changed.
My partner and I were on holiday in Canada in July 2014 during which time my ejaculate (sperm) reduced to around 5% of normal. I'd had a successful hemorrhoidectomy in May 2014 and wondered were the two related so went to see my GP on return from the trip. He commenced with the usual finger up the bum and found nothing. A blood test was taken and PSA 45 was identified which triggered an immediate referral to a urologist, who advised that there was a 90% chance of cancer. Seeing those words come from his lips was gobsmacking.
He commissioned a prostate biopsy along with bone, ultrasound and MRI scans.
I returned to hear the following outcome - At age 58 I was Gleason 9 (result from the biopsy) Cancer Grading T3b N1 M0 (result from the scans) meaning this was a serious cancer which had spread into the seminal vesicles and into a lymph node but not into my bones or organs. Definitely a case of the silent killer doing its job.
My first reaction was to go into overdrive and crawl the internet looking for the worst case scenarios, survival statistics, etc and sure enough there was plenty of bad news. This caused me to plan for what I perceived was my imminent demise.
I also joined the MacMillan blog which thereafter did help me calm down a little.
However my biggest struggle was finding people on there with my grading who had survived and were living well, several years after diagnosis.
It was thus with great joy that I found this website which has gave much hope and plenty of new vigour for life, albeit living with cancer.
After diagnosis my urologist said my aim is to cure you of this cancer whilst my oncologist said my treatment would give me a 40% chance of surviving 5 years. Clearly very diverse prognoses. Why? I then spoke to my GP who is caring and rational. He put it all into context and said ultimately it is my body which will control events... and that I could still be here in 5, 10, 15 or 20 years. That gave me perspective making me happy to live and move forward with that advice.
To be frank, I feel great, am on my 3rd Prostrap injection with 6 weeks radiotherapy due to start in February. The only side effects are hot sweats + flushes which I am coping with. I've had a couple of urgent pee accidents which were a little traumatic. My libido has distinctly subsided but I can still get an erection. I intend to get a PSA test on return to the UK in January which I hope will be where it needs to be.
After on-line research, I've adjusted my already good diet to include virtually no red meat, even more fruit + vegetables along with selenium, lycopene and vitamin E supplements all of which I hope will help.
Finally, although more than grateful for the treatment I'm receiving, I feel I've been fed into the machine called the NHS where contact with those providing treatment is quite matter of fact and very to the point especially considering the very varied prognoses I have been given.
This is my first post. I sincerely hope there will be many more as my journey progresses.
Just had my 4th hormone injection and I feel absolutely fit and normal apart from the ongoing hot sweats. These are easy to deal with. Just find a way to cool your face and they are gone in a minute or two. I've known many ladies go through this over the years and to be frank, like most men, haven't been that sympathetic. Ladies I beg your forgiveness and now fully empathise.
At the time as the injection, I requested a fresh blood test to reasssure me that my PSA had gone down. It turned out to be 6.5. I expected lower, but my GP and treatment team said be grateful it is now this low.
Last Friday I was prepared for radiotherapy which begins next Friday and will last 6 weeks. This was a case of taking bloods, an enema, a CT scan and general chat about what to expect plus being tatooed twice on each leg and once on my stomach in order to provide reference points that help ensure that the machine delivering the radiotherapy is in the same position each time.
I asked about the likely prognosis after radiotherapy and the nurse in charge repeated the words of my urologist and team lead nurse "our aim is to cure you" and once again contradicting my urologist.
I've decided to keep his prognisis at the forefront of my brain, stay totally positive and see if cure turns out to be true. Bring on the radiotherapy.
Externeal radiotherapy began in early February 2015.
35 daily appointments, with weekends off. Luckily all of my appointments were at 0830 which allowed me to attend and then move on thereafter back to work. The daily early start and 50 mile round trip were initially a chore, but ultimately as the mornings lightened, it was easy.
The treatment essentially means turn up, when instructed empty ones bladder, drink a couple of glasses of water, then wait 20 minutes. Once on the radiation delivery machine, the nurses are meticulous in ensuring that you are located within less than a mm of where you need to be, then the process begins. It lasts around 8 minutes. You feel nothing.
Over the first couple of weeks I had no side effects.
Thereafter I was finding my need to urinate increasing significantly whilst at the same time the flow diminished to almost a dribble. This was dealt with immediately by the fabulous nursing team by way of meds and advice.
By the end of the RT I had some soreness in the anal passage and in the penis when urinating. My abdominal hair has became patchy and that on my legs and stomach has gone.
My biggest problem is some urinal incontinence which continues 4 weeks out from RT. Incontinence pants are currently part of my daily routine. But apart from that, considering the intention is to cure me, the experience has barely affected my life. I've attended work as normal and carried on with my family and social life.
On May 11 the results from first of my PSA bloodtests will be known. This will be baseline PSA.
A month after I'm hoping that a second PSA test will see my PSA static and not rising.
Currently in the UK we are holding a general election. The NHS as always is a political football. My treatment overall has been exceptional and provided by a Tory led government. I'm sure would be identical if the socialists were in office.
However whilst in the NHS machine, it is important to make sure you keep yourself heard, ask questions at your regular treatment reviews and make sure your oncologist, doctors and nurses know how you feel and whether anything is bothering you. My experience has shown that they will do their utmost to help you and make your situation better.
I intend to post again after my 2nd blood test.
With trepidation I went to my oncologist to hear the first PSA result after radiotherapy. A wonderful older guy I had befriended during RT had heard his the week before. He came up as negligible. A great result.
Mine turned up at 3.6 which disappointed me. However the oncologist said, be happy, this is an excellent reduction. He told me to obtain another blood test after 3 months.
Post RT the involuntary peeing problems slowly but surely disappeared. The incontinence pants are no longer needed. I continue to take a drug which allows me to pee easily. Without it my flow is a dribble at best. My GP states I may have to take this med for a while.
I have continued to work from diagnosis of cancer through to now.
My main symptom post RT had been mid afternoon fatigue where the desire to sleep around 3pm was overwhelming. I countered this by going home earlier than normal and just laying on the bed for a hour, where sleep was instantaneous.
7 months out from RT the fatigue has all but gone. I feel great. The only downside has been an expanding waist line which I'm battling to minimise, amazing hot sweats plus an almost total depletion of body hair. My previoisly great libido has diminished to virtually nil. Despite that I can still get an erection. My testicles have reduced in size. Ultimately all very liveable with.
My second post RT PSA was a month ago. It has dropped to 0.9 Fantastic news. My oncologist has discharged me from his care and told me to have 6 monthly PSA tests, referring only to my GP for the results. He advised me to do this until October 2017 at which time the hormone injections will stop.
This date I now feel is the next danger point. By October 2017 the effects of the hormones will have degraded. If there is any of this disease still in me, the journey will restart in a new direction
So up to now all good. My frame of mind is positive. However sometimes I find myself on the other side of the fence, crying, thinking about the what ifs. Those occasions though are thankfully rare
Best of all, I've decided to hedge my bets and distribute some of my savings that I may never spend. My beautiful daughter is the beneficiary of a lovely new home in London and my sister and family will enjoy a trip to Disney they may never have afforded. There will be more treats for everyone along the way. In fact giving it away has been much more fun than keeping it hoarded in the bank. The smiles of appreciation have been immensely uplifting.
I turn 60 in February. My target is to get to 65. If I do I'll set a new target. Can you tell I'm in sales?
From now on I'm focused on ticking as many of my bucket list boxes as possible and no longer work on Friday. I'm finding the 4 day work week perfect.
Finally the British NHS can be a political football with politicians constantly harping on about what needs to be done. My experience to date is of exceptional compassionate care from the whole range of doctors, nurses and others I have met through the process. They are a credit to our great national institution.
It's now 19 months since diagnosis.
I still feel great, continue to work and apart from the odd "wrong side of the fence, gloom and tear moment" remain upbeat and positive.
The 3 monthly stomach injections continue whilst the battle with my mid rift bulge rages on. I'm yo-yoing over a 10 pound range. I lose it. Then gain it again, usually whilst on holiday.
After my PSA had fallen to 0.9, the last one, taken after 6 months showed an increase to 3.6. My GP was totally dismissive of this and told me not to worry. Difficult not to, when the trend had been down.
We've agreed that the next one should be after 3 months.
In the meantime I've turned 60 and am hedging my bets by putting into place a schedule for all the bucket list items I intended to do in later life. Some have already been ticked off. Carrying them out has been fun and uplifting for me and my partner.
If I survive beyond them, no doubt fresh items will be added.
Today I compose this post on my Friday, not at work day. The 4 day week certainly helps living with this disease.
Denis's e-mail address is: denisdowen AT aol.com (replace "AT" with "@")
NOTE: Denis has not updated his story for more than 15 months, so you may not receive any response from him.