"Living" with prostate cancer.

[rustic]

As most of you guys know, I have advanced prostate cancer, and with the latest TV campaign, it's time you guys got yourselves checked out.
I am not after sympathy, I just want to tell you as it is, from a sufferer, and if I can help prevent you guys going through what I am going through, so much the better.
Some things look out for.
Note, don't panic, not all these symptoms say you have prostate cancer, some will be infections, some will be a large benign prostate.
Frequency of urination.
Urgency, rushing to the toilet
Blood in your urine or semen
Getting up several times a night
Pain whilst urinating
A low flow or low volume
Difficulty going or starting
Dribbling
There may be other signs, and you might only have a couple of these to justify going to the doctor.

Now listen very carefully... I shall say this only once..
Doctors do get things wrong, I had been going to the doctor for over 10 years, nearer 15 with some of the above systems, had three seperate doctors with the rubber glove...
Yes the prostate is enlarged, nothing to worry about, then 9 months after the last check ...I was referred to a specialist, where I had 12 biopsies of the prostate, not a nice experience, several CT MRI and neuclonic scans.
"you have advanced and aggressive prostate cancer, T4 (worst) you have a gleason score of 9 ( max is 10). It is metastatic, ie spread outside your prostate, surgery to remove the prostate is not an option.
The cancer has spread to your lymph glands, your bladder, your pelvis, your sternum, your spine. There is no cure, some treatment will be an option, but it won't cure it. Any question?" Next patient please... yes that's how the breaking news appeared to me...

These are not words you want to hear. There is no going back, it's not like a broken arm or leg. It's best that it doesn't get this bad to start with, so guys, Time is of the essence. Do not wait 9 months... Do not wait a month, do it now, today... Use my case as an example, show them this thread.

This all kicked off in August 2015
I was offerred hormone treatment, chemo and radiotherapy was not considered an option as the cancer was widely spread.
I had the option of going on a drugs trial, called the "stampede trial" rather than have hormone drugs one after the other, they thought that having three hormone drugs together, not been tried this way in UK, so not licenced, hence the trial. With the drugs taken sequentially, life expectancy 1+1+1 =3
however with the trial, they were hoping that 1+1+1=4 or greater, so I opted for the trial.

Since August I have been going for regular checks, with umpteen blood tests, more CT scans, more MRI scans etc and it showed a progressive reduction in my PSA value, and on the last scan 3 months ago it showed a 25% shrinkage in most of my cancers

Right... had my 3 monthly meeting on monday this week with my oncologist, my PSA has risen slightly 0.9 to 1.4, my oncologist said it was normal to see fluctuations. I also mentioned a pain in my chest, and he checked past scans on the cancer in my sternum, that had shrunk, but it may now have started to grow, so he has arranged a scan coupled with radio therapy, initial scan and set up booked for Tuesday next week in Derby, then radio therapy after that.
That should zap that. but what worries me is, have other cancers started to grow?
There are side effects with the hormones, any one of which causes fatigue, hot flushes, dizzyness, high blood pressure, sleepless nights, forgetfulness, mood swings, and emotional changes. Then you have to remember, I am on 4 of these.
1 a three monthly injection, 2 for the trial, another to try and counter some side effects of the others. I am also on steroids, and blood pressure tablets, again to help counter some of the side effects too.

As my bladder is totally shot, I initially had an indwelling catheter for three months, this caused 3 infections, it was difficult to walk, there were embarrassing bypasses and blockages, midnight visits to A&E
Since then, by my own research, I will say, I am using an external condom catheter, a "Conveen"with a leg bag, and I am now trying a larger night bag on a stand for night time use. All this changing and setting up takes time morning and night, and sometimes I sit on the bed in despair as I look at the pipes attached to my previous pride and joy... (hormones affect that too).
The conveen has allowed me to go out during the day, I still drive, i still have a drink or two. Going abroad is a no no, no one will insure me, at a decent rate and being on a trial even worse.

So to come back to the title, "living with prostate cancer" It's not good, things are getting worse, better not to have it, or better to get it diagnosed early.
I am posting this, hoping to make a difference, I have posted some of my issues in other threads, but I thought, with the current TV campaign, it deserves it's own thread.
I has not been easy to write this thread, I am still "man enough" I think to tell you, I am in tears writing this, but if I can save one life or make some lives have a greater quality of life then it has been worth it.
It seems guys, I have looked after my mav better than I have looked after myself, but like most things, I left my health in the hands of others, whereby my Mav has been left in my hands... Makes you think doesn't it.

Posted with sincerity.
Richard
aka Uncle Rustic, or just plain Rustic

[Blocky10]

That made my eyes water Rustic. Its a sad private story and I thank you for sharing as many wouldn't. I can not imagine what you and your family are going through and send you my best.
Only this week my brother n law went to the doctors with a sore knee. He hadn't been for 8 years, turns out it was water on the knee. (housemaids knee). While he was there he mentioned he was having to get up in the night 3 or 4 times for the toilet. Out came the rubber gloves and was told he had the signs for prostate cancer.
He had a blood test yesterday and is awaiting results.
He is a private person and wouldn't have gone to the doctors about frequently needing the toilet.
This is where it needs to change. There is nothing to be embarrassed about. If in doubt, seek advice. The doctors chose the profession, it is their choice, what they wanted to do, to help people, so people should use them.

Again Rustic, thank you for the post. Months back you posted about getting your "paperwork" in order. That you realized your family wouldn't know where to start with the day to day things you have done for years.
This opened my eyes and I have now an a4 book with details of everything listed, and still things crop up that I've missed.

People with experience in something are always worth listening to, its just unfair that someone has to suffer.

Ian.

[makeitfit]

Damn fine post there Rustic and bloody unfair as is life unfortunately.
I went to see the quack last year for a prostate check. I had faffed around a while before going , thinking my ailments would just go away . Many stupid man thoughts later I did actually go and get the finger of fudge test
I'd just noticed a slowing of the flow , it may even have been after your earlier posts last year. Anyway it turned out I did have an enlarged prostate
Further tests proved to be cancer negative . I've since reduced my coffee intake radically and remain vigilant to any further changes.
That said , your post today has prompted me to go and check again.
Good luck with the trial and let's hope for a speedy remission

[macabethiel]

Well Uncle Rustic I booked my appointment to see my GP a week on Friday.

Not looking forward to going it's all a bit embarrassing the thought of the Doctor doing the Fudge test but your post has driven me to go even though I feel confident I am okay.

Decided against the woman doctor and have gone for the bloke instead - hope that does not sound a bit Gay!

Your post has reached me any roads and it was a bit of a tear jerker when I read it out to Wendy.

[makeitfit]

Originally Posted by macabethiel

Decided against the woman doctor and have gone for the bloke instead - hope that does not sound a bit Gay!

I know I take the mickey on the gay side but the finger of fudge was well over rated . I asked for the lady doctor thinking nice petite finger Access denied I got the bloke
Just remember, have good old dump before you go
Good luck

[Monaro Pete]

I don't know what to say Rustic.

Though there's nothing wrong with shedding a tear or two, especially when you've been through & going through what you are.
It can't be easy for you. I know my dad has a problems with his bladder, but it's nothing compared to what you have.
All I can say is............ I've read your joke (no more please ) & you still have your sense of humour which goes a long way. It tells me you're a fighter & you will carry on fighting.

Keep fighting. Keep that chin up & keep proud

[rustic]

Thank you all for replying to the original post, my aim is to inform as many people as possible.
Now there are members on this forum, that maybe wish to share their own experience, but not have their name made public, if you wish, you can PM me and I will pass on your comments, as from a forum friend, and I will keep your name in confidence, or you may wish to ask a moderator or other forum member to do this for you, after all, the more we know, the quicker we can beat this.
Uncle Rustic.

[perelaar]

Rustic, thanks for posting. Even though I don't have it myself (I think), several of my family members do, although not as advanced.
As of what age would one need regular checks?

[rustic]

Originally Posted by perelaar

Rustic, thanks for posting. Even though I don't have it myself (I think), several of my family members do, although not as advanced.
As of what age would one need regular checks?

Well I was diagnosed last year at 60, having been concerned for 10-15 years, so I would say from 45 onwards in my case... but that didn't work for me.
Just a quick note, the PSA test alone is NOT a reliable indicator of prostate cancer either way.

[rustic]

Following my earlier post I am aware already of at least two forum members that headed my similar post several months ago. Both were checked out and both found to be fine, and one is having regular follow ups.
They are so relieved they had their checkup.

For those in fear of the glove puppet, it goes like this...
You lie on the bed, facing the wall, you put your knees to your chest, you drop your pants, nothing but your bum is exposed...
10 seconds later... job done, pants up, get off bed.
Sorry ladies if you are reading this, but you might be pursuaded to get your partner to get them selves checked out.

[kitchenman]

Slightly different but still Big C
I was in for Gall stones, guy was admitted, story short,
He told me he had been bleeding from the bum for a few years, scared to go to doctor, hoped it was piles.
It was advanced colon cancer, prognosis, terminal.
So as Rustic says get it checked

[don simon]

Great post Rustic and thanks for putting it up.
I value my health and am not embarassed to go and talk to the doc about things. I've done the macho thing with sports injuries, but the dark art of the functioning of the body I won't play with. I had a prostate test 18 months ago and given the all clear.
As an ex-smoker I do have some concerns about my health and for this I do plenty of exercise (though this isn't a guarantee).
Thanks for being strong and an inspiration Rustic.

[solarman216]

Yes Rustic, a great post by a great man, I knew you were a fighter when I first talked to you about this issue a good while ago, and glad to see you are still around and fighting, best regards Rick & Maggs

[jims-terrano]

A quite amazing thread and being so very open about a subject we all should be open and honest about. Rustic I'm convinced that you are likely to have saved people by your openness. Keep fighting it buddy we are all here for you. Of course you are fighting it on two fronts as well so the very best of wishes to Roz as well.

[Paultrol]

A very sobering read.
My thoughts are with you.
Thank you for sharing.