PROSTATE CANCER - I have it and I'm going to tell you my story

[artwisemills]

I've been thinking about this for some time. I thought it would be good to tell you all what's happening to me. This might help others, at least might make you think and maybe might even make you angry - sorry if it does. I'm not going to write a great mass in one go, I'm going to do this over a week or two. It's a story that really started last October and is still going on. Not looking for members to respond with major stories, by all means make a comment if you wish - try and keep it brief. Here goes...

Last year went away on August holiday feeling a little lethargic, not sure that's the best way to describe it. My waterworks were slow, but when they got going it was fine. Found myself almost talking myself into weeing - and when I'd done I was OK but had this nagging that I still wanted a wee. It sort of spoilt my Summer as I felt I never got going with the jobs I had to do. I'm renovating an old farmhouse - but my bit is limited to decoration and visual things! Anyway I assumed I'd got a water infection and agreed with my wife I'd go to the doctor and get it sorted.

Late August - When I returned home I tried to make Doctors appointment, not going to bore you with how difficult it can be to get an appointment.

'We have no appointments today, Call in the morning'  - next day when I finally get through... 'We have no appointments today, Call in the morning' and so it went on until I got an 'emergency' appointment.

The Doctor sees me and takes a urine test, he gave me a ten day course of antibiotics and says make an appointment after the course - I question if I should try and book as I left the surgery, as I may not get in for 10 days!

Anyway - antibiotics were not working so I go to see the doctor again after 7 days, a blood test is ordered the next day. I think it was at this point the doctor decides to check my 'bottom'. It's the universal test - they put a finger into your rear end to feel if there seem to be anything to concern them.

'Feels perfectly smooth' said my doctor but to be certain I'm sending you to see a specialist and we'll fast track it as the psa reading he had for me showed a slight rise from 4.6 to I think it was 6.4. This was towards the end of August 2016. Around 3 weeks later, on the 20th Sept I had my fast track appointment with the specialist at the Hospital.

20th Sept After a brief discussion the specialist concluded he might want me to have a biopsy in a couple of months time if things did not improve for me. He then examined me - finger up the rear again. He said it felt very rough and because of this he wanted to do the biopsy sooner rather than later. He assured me that it may be absolutely nothing - so don't worry.

Around this time I was also sent for an MRI scan - not sure of the date

30th Sept - I have the biopsy, which I have to say was the most awful and painful experience I've ever had. 17 samples were taken under local anaesthetic! They kept telling me I could have a general anaesthetic, but also kept saying nearly finished. The biopsy resembled a staple gun going off and every time it went off - it hurt in my lower abdomen area. 'Stop anticipating it they said - God how could I not anticipate it!

Anyway - now it was wait for the results.....

I'll continue the next section as and when. Try not to comment until I've written a couple.

[cookiecookuk]

hi I have freinds and relatives who have suffered with this and bowel cancer .if only men would overcome the embarressment and go to docs early..being female we get use to being pulled and prodded from an early age...

I wish you well and hope things go right for you..

[artwisemills]

My biopsy had been done and I waited with all sorts of things running through my mind. Became a little touchy and probably took things out on my wife. Every day went by with worry and still no news. How long does it take to process the results???

I was due to return to my France to see a builder about my house on the evening of 16th October and would not return until 29th October. It was now the 15th October - over two weeks since the biopsy (5 weeks since being fast tracked!) - I asked myself should I be going to France?? Was I ill? Would another two weeks make a difference? What could I do?

I probably should have told you that I was 62 years old at this time, nothing major wrong with me and still enjoying an active lifestyle and sex life! Don't smoke, I do drink alcohol, occasionally act like I'm still a student and do stupid things!

I finally decided to telephone the Specialists secretary and ask if I could have the results over the phone - I REALLY needed to know as this was mentally worrying - and I was already tired.

15th October I call his secretary and explain I am going away Friday evening for 12 days so really would like to put my mind at rest and was it in order to go? She said that he had no appointments available before I was due to go, but she'd speak to him and see if he'd speak to me on the phone. She would call me back.

She called me back within an hour and said Mr George (changed all names in this article) will see me between his appointments on Friday morning but I'd have to wait from 9am and it would be when he could fit me in. I was so grateful to her.

Next day I was at the hospital at 9am and happy to sit waiting. Finally at about 10am Mr George came out in his theatre gowns.

'We'll go and find somewhere to talk' he said.

As we walked into a room I thanked him for seeing me, explaining I really needed to know if I should be going on holiday and if all was OK as it was worrying me.

'Yes - go away and enjoy your holiday' says Mr George. 'As you know we took 17 samples in the biopsy - 9 on the right which were all fine and 8 on the left'. 'I'm sorry to tell you, you do have prostate cancer' - but don't worry we can sort it!!! Of the 8 on the left 5 showed signs of cancer'. But we can fix this. As I told you before Prostate cancer can be a slow moving - you could leave this 3 months without a problem, you could leave 3 years - but I wouldn't'! I will also arrange a bone scan for when you return to make sure that we have everything covered.

I was remarkably calm, can't say I felt a thing, I was alone as my wife had to take my daughter to a prior hospital appointment so I had to ask the questions.

What treatment is available? There are numerous treatments, different types of radiotherapy and surgery, we can discuss this when you return and see whats best for you. Go away and enjoy your holiday!

Which treatment would you have I asked: 'Surgery, cut it out and its gone the end of it'!

I returned home and must admit to feeling quite normal as I had confidence in this man and thought it could all be sorted when I had my next meeting with Mr George. I should at this stage say I completely resisted any thought of going on the net to research prostate cancer as I knew it would probably end with me thinking all sorts of crazy things.

The holiday went fine and even my waterworks seemed better - and I returned home on the 29th October to a letter saying my bone scan was 31st October. Everything was going smoothly - as well as could be expected!

The bone scan was done and I heard nothing - for what around 10 days?

On 7th Nov I had a phone call ... 'Hello it's Diane, I'm going over to Hospital B to discuss your treatment this morning - which have you decided to go for'??? 

Confused I REPLY: Sorry I'm being treated at Hospital A, I'm not at B that's miles away I never asked my GP to go there!

'Oh we don't do the operations at A we do them at B'
REPLY: But I was told we'd have a meeting to discuss the treatments available to me and the advantages/disadvantages???

'Oh Sorry - Have you not had a meeting, I've been away on holiday and I thought...
REPLY: NO i have only had an unofficial meeting which I forced with the specialist, I've not discussed any treatment!

'Oh I'm so Sorry, I've been away on holiday and I thought a colleague had dealt with this - I'll speak to Mr George and try and sort something out for you straight away'

I started at this point to go into complete panic - logic went out of the window and I was concerned that I knew nothing of what was happening to me and needed to find out quickly!

I then recieved another call from Hospital A Registrar - who profusely apologised for the mix up and said he'd arranged an appointment with the specialist for the following day! I would get all my answers then.

But I'd started on the net - and that changed the way I felt and dealt with everything!!!

[jasper149.1785]

Be Brave.

[j_uk643]

Best wishes for successful treatment 

[fallen-archie]

I am certain you will be in safe hands, keep the faith and above all remain positive!

[littleme61_6]

All the very best to you Artwisemills, and so hope everything turns out as well as can be. 

[artwisemills]

Can I just say thanks for all your good wishes - hopefully I'll be OK - this article is more about awareness and trying to explain to you how others may feel/are thinking after being diagnosed. It also will raise certain issues that I think newly diagnosed sufferers should be made aware of. It is lengthy - hence my constant short pieces - try and stick with it, I've had to!

After my panic at being asked what treatment I'd decided upon - having previously been promised a discussion on the benefits of each, I really lost it! The only thing I felt I could do was research the disease and it's treatment - and quick. So it was off to the internet and the dark side!

Below I'm sharing just a few basics about prostate cancer that I picked up in an afternoon of panic!

I was not even sure what the Prostate was... a walnut size organ is responsible for producing seamen (I Know thats spelt wrong - but bleeps are no good to anyone ebay), it's propulsion and certain proteins. It's situated under the bladder and the urine release tube (urethra) which goes from the bladder through the middle of the prostate down to your willy. So if your prostate enlarges it squeezes the tube resulting in slow flow, constant need to go in the night, urine retention etc. Prostate cancer may enlarge your prostate hence the toilet issues.

50% of men over 60 yrs suffer from an enlarged prostate which slows their flow of urine, this jumps to 90% of men in their 70-80's. Its common so don't immediately frighten yourself thinking you have cancer! This enlargement is often talked of as benign prostate enlargement (BPE) - nothing to be immediately concerned about, but something that you should continually monitor and seek help to control.

Prostate Cancer is growing in numbers and 1 in 8 men will get it, some now report it's as high as 1 in 7. It can be a killer, but if caught soon enough it can be treated and cured. Maybe I should add at this point my elder brother got it, he did not know he had it and it killed him 2 years ago. He was much older than me - 84.

If caught early prostate cancer can be cured - the specialist told me at my first meeting that someone was "more likely to die with the disease than because of it".

CURED - there was my issue, what cures or treatments were there??

There were different types of surgery (I'll expand later inc other treatments), there was radiotherapy, a mixture of the two, radiotherapy using cells inserted into the prostate, some men have the cancer and have continulual observation - this is usually with the slow growing types. However the more I looked, the more worried I became. It very quickly became obvious that you might be cured - but it did appear it was at a price! The price was a large percentage end up incontinent and also end up with erectile disfunction to differing degrees. These were issues that I'd never heard anyone talking about, it was always 'Oh yes prostate cancer is cureable if caught early enough'! The thought of becoming an incontinent old man was for me worse than dying of cancer - go on, I can hear lots of you reading this saying 'Does he really mean that, if so he's nut's'.

I could not see me wanting to go around wearing incontinence pads or urine sacks - that was it, period - game over! I quickly became neurotic about the whole issue. I tried looking for help and advice - first stop Prostate Cancer Awareness - for me personally not a good start! I watched a film about a man called Paul (?) - keen golfer, my sort of age. He'd been cured, he could now walk around a golf course and did not have a problem! At first he had a problem, he could not find enough bins on the course to dispose of his incontinence pads, but now with a new catheter system he only had to empty it once! Slash my wrists or what!!!!

I was going no where fast... ...and then I phoned Macmillan and things started to look slightly better.

Never called anyone for help before, but I explained my problem and they LISTENED, they talked to me calmly and understood my feelings.

I'll continue later

[artwisemills]

The lady at Macmillan was incredible. I explained I'd suddenly been asked to decide on a treatment - treatment's of which I knew nothing! She listened, said it should not have happened this way, they should explain with all treatments there are different issues, issues that I should be made aware of. Incontinence was an issue and I needed to be aware of it as a 'possibility' - not necessarily a certainty. She spent over 30 minutes talking to me - asked me what I'd got information wise and said she'd email me links for support groups and information sites. She calmed me down and told me to ask questions at the meeting I'd got next day.

She asked me, what did I know about the type of cancer I had? What my Gleason score was? There were so many things I'd never heard of... Gleason???

I was calmer but still had thoughts that I should prepare myself for the worst and get my mind focused on being in control of what I wanted, not what someone else wanted for me! 

I then had another call from my named nurse Diane, again profusely apologising for her earlier call - I asked what my Gleason score was? 'We can deal with that tomorrow', No - I need to know now..   ...its er, 7 but we can discuss it tomorrow with the specialist.

I put down the phone and called Macmillan back again. I spoke again to the same lady. 'My Gleason score is 7' I said waiting for some acknowledgment that because it wasn't 250 I was going to be cured from above? The reply came - is that a 3+4 or 4+3 gleason? 

"I don't know, she just said 7... ...What is the difference"?

The lady from Macmillan explained that Gleason measures the rate at which the cancer is growing - 3+4 is slower than 4+3.

It appeared Diane had been rather frugal with the facts and this again worried me as obviously in my mind I had a 4+3!

I'd already that afternoon told my wife that if I ended up as a bed wetter (my words, sorry if that offends anyone) then I could not cope with that and it was for me the end. That was not a cure just end of life! She was in tears and probably so was I... I did not want to make her cry, I just wanted to be honest with what was going through my mind. But even I was being economical with the truth!

That evening I continued my research and I discovered that there were different forms of surgery - in laymans terms to keep it simple,

Surgery by hand which is invasive, minimal invasive surgery and robotic surgery. After reading up on these I discovered that incontinence could occur after any of these treatments. However it was much less likely with robotic surgery! The incontinence and impotence occurs because of damage to the nerves (around the prostate connecting to the urethra and baldder) - so 'nerve sparing surgery' is essential to protect yourself against these risks. Robotic surgery was done with a 'DaVinci' machine and far more accurate.

While I concluded that no choice was perfect the one it appeared I had to take was robotic surgery.

My wife persuaded me to draw up a list of questions and we'd deal with it together the following day.

So tomorrow was my meeting with the specialist at 3pm - it was a long night.

[jasper149.1785]

You have been very unfortunate with the care you have been given with your diagnosis and a treatment plan.

Is this NHS? 

[artwisemills]

Yes it was NHS (all the way through), I had been unfortunate, I'll say no more for the moment as you'll understand as the story unfolds - sorry it's so long winded, but I really think it's worthwhile everyone reading this - you'll understand and it might help you even with other illness/hospital situations!

I'll put more up tomorrow.

[jasper149.1785]

I have already been there  a few times, I am female, but love hearing everyones stories.

I was under private health and had wonderful treatment, very supportive family, I am a strong person never once cried and took a VERY positive attitude, my cancer will come back but I am ready for it.

Your doing great opening up about it all, looking forward to the read.

[*.*..lola..*.*]

I was in the same situation as you late summer 3 years ago. The hardest part for me was all the staging scans, biopsies, colonoscopies, blood tests etc. especially because I had bowel cancer so I had to fast for a few days before each one. It was never ending.

Once my cancer had been staged, things moved really quickly. I had a right hemicolectomy on 4 November 2014, followed six weeks later by chemo and daily radiotherapy starting 15 Dec 2014 and ending 21 Jan 2015. Apart from weekends, I only had Christmas day off but the meanies made me go in on the Sunday instead LOL

The most frightening part was being told that my first chemo infusion could trigger an immediate heart attack and/or allergic reaction but don't worry they said, if that happens, you're in the right place

Anyway here I am, two and half years later and I'm finally at a point in my life where I actually believe that I'm going to be OK (fingers crossed) x

I wish you all the luck in the world Artwisemills. It's a truly horrendous experience to go through but it makes you a stronger person for sure - I hope you'll keep us updated with your progress.

[jasper149.1785]

lola

It is very hard, but well done for sticking with it, mind you we have no option do we.

All the very best to you for the future.

[Anonymous]

Are you ok? You haven't posted for a few days.

[*.*..lola..*.*]

Health and happiness to you too, Jasper. Thank you x

[artwisemills]

Yes I'm OK thanks for your concern, its a long story and it really has to be done in bursts. As I say I think its best when I've finished (I will finish!!) if you are really interested it's worth reading in one go. Anyway to resume...

I was going for the hastily arranged appointment with the specialist and my named nurse Diane. They were going to explain the pro's and con's of the different treatment's available to me and hopefully put my mind at rest! (joke)

After going into a panic, I'd spoken to Macmillan (MACMILLAN OFFER A BRILLIANT SERVICE) who had advised me on where to look to find information and suggested I go to this meeting armed with a list of questions - I did!!

My wife and I met Diane and Mr George who began by apologising for the mix up.

I began by asking if my symptoms - slow urine flow and having to talk myself into going were symptomatic of Prostate Cancer. - No they are not neccessarily linked. What was my Gleason score and can you explain what itmeans? Gleason 3+4, its an intermediate cancer not quick moving

So I was lucky to have been diagnosed - almost by fluke. My next question - how long can I wait before I have to do something about this?  Did I have time to wait before making a decision on the type of treatment? Yes I had time, but I did need to do something when I'd decided on my treatment option.

The options? - an operation to cut it out, radiotherapy or possible radiotherapy using a cell inserted in the prostate - and variations of these.

I'd read that nerve sparing surgery was essential to protect against incontinence and erectile disfunction. On reading my questions today I see I'd established 9 in 10 people suffer erectile problems and 20% will end up having difficulty controlling their bladders - to differing degrees!

I asked what is the risk of ending up with urinary problems, will I end up incontinent, what if I end up with erectile problems??

I was told that because my cancer was on the left side they saw no reason why they could not protect nerves on at least one side and that I should be OK. It was common that for a few weeks (maybe months) after the operation I may have leaks but that it would slowly stop and most people fully recover.

I asked why the operation was at a different hospital (Hospital B) (25 miles further away from my home - and difficult to get to) to the one I'd chosen and been dagnosed at?

It's because we are part of the same trust group - we work together and all treatment is done at that hospital (B).

I continued "I understand Robotic Sugery is the most accurate form of surgery and most successful at protecting the nerves?" - Yes... Diane intervenes, 'But its a 6 months waiting time.. ... and you'd have to start again'..

Sorry don't understand what do you mean start again? Robotic surgery is not available at Hospital B - you'd have to go to Hospital C, which is not part of our trust group so we'd have to refer you - and there is at least a 6 month waiting list!

Can I wait 6 months - do I have the time?? yes, but we'd have to refer you to see someone there.

My wife intervenes and asks Mr George - What sort of surgery would you have done? - Robotic surgery - the reply.

It seemed that everything pointed to me having to go in that direction, but I could not help wonder why I had not been offered Robotic Surgery in the first instance????? - With Hindsight the simple answer THEY DIDN'T DO IT - SO THEY DON'T OFFER IT!

They then told me I did not have to make up my mind straight away - think about it and phone and let Diane know the following week.

After the meeting, Diane took me into another room and I was given a host of material, booklets and sheets with telephone numbers of my named nurse. I was told of coffee mornings at the hospital for men with my problem as it sometimes helped to talk to others with the same problem! I agreed as I knew no-one who had openly confessed to having this awful disease.

We left the hospital and I must confess to being slightly less worried, but perhaps I was in a sort of denial? I left it a further two weeks before phoning Diane and saying I'd decided on Robotic Surgery at hospital C, despite the waiting time - as Long as it was safe to do so..

I'll continue again soon

[javikha_4]

My uncle had it, but it was caught early and it's been some years now and all clear, so I hope for the best for both of you.