"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