Just diagnosed APC 10

User

Posted 22 Aug 2018 at 17:57

Hi all,

I am looking for a bit of advice regarding the below:

My dad has previously had bladder cancer which returned a couple of times but for the past 2 years he has been cancer free until recently...

He has just been diagnosed with advanced prostate cancer with a score of 10 (5+5) T4 N1 (I hope that makes sense to you all because I'm still trying to get my head around it all!) It has spread to his lymph nodes and we are just waiting to see whether or not it has spread to his other organs because of how advanced it is and the pain that he is in. He has been given hormones and had his first injection after the tablets today and is going in for an operation tomorrow so that he can hopefully have his catheter removed and urinate normally.

My big concern is that he is in so much pain all the time, he was given Zapain for the pain but this wasn't strong enough so they gave him morphine but even with morphine pills and oramorph he is still in agony. The pain is in his penis, balls, anus, back, pelvis etc. generally everywhere. His pain relief makes him constipated and when he goes toilet he is screaming in agony. There is blood coming out both ends. I have seen him crying from the pain which is upsetting my sister and I. He has lost so much weight he doesn't even look like himself anymore.

I am just wondering if there is anyone else out there that has been through this and lived a few years or whether the amount of pain that he is in along with the weight loss are really bad signs?

I hate seeing him like this, he is also bipolar and I am worried that this will affect his mental state, he keeps talking about committing suicide because he literally has not quality of life. He was in all this pain for months before he was even diagnosed and it has taken months to get here. I am wondering if it is all too late or can he get back to having a reasonable quality of life where he doesn't just go from the toilet to bed all day.

He is also a heavy smoker (20 a day!) and he will not quit (I have been telling him for years!). Has anyone continued to smoke despite their diagnosis and lived for a long time?

Thanks in advance!

Emma

User

Posted 22 Aug 2018 at 20:23

Okay so the pain is not an indicator of how long he will live - once the hormones kick in and his testosterone levels drop (which then starves the cancer) the tumours should reduce which will in turn reduce the pain.

T4 means that when they look at the prostate (or feel it) in a scan, they can see that the tumour has sprung out of the tumour wall and attached to local tissue like the bladder or bowel. The N1 means that it has spread to his lymph nodes, which you already knew. The final bit of the jigsaw will be an M code for whether it has also spread to his bones - they will know that after the bone scan and will give it an M0 (no bone mets) or M1 (bone mets).

Was he constipated before the pain relief? Sometimes the tumour affects the bowel and causes a blockage; again, the hormones will hopefully reduce that very quickly.

Some men live for many years, even with a diagnosis like your dad's. They can't predict anything yet though - it will become clearer over the next few months as they monitor how effective the hormone therapy is.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Aug 2018 at 20:25

I forgot to say, download the toolkit from the website or phone the number at the top of this page and order a hard copy. It explains all the results and treatment options.

How old is your dad?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Aug 2018 at 21:44

Emma, constipation is a normal side-effect of opioid pain medication such as morphine. Your dad should speak to his GP or the hospital about which type of laxative would be most effective in sorting out the problem.

Chris

User

Posted 23 Aug 2018 at 18:05

Emma, something in this sorry tale does not make sense. If your Dad has been bladder cancer free for a couple of years that suggests that uroscopies have been performed to see what has been happening inside the bladder. They would normally detect abnormalities in the prostate on the way through. With Gleason 10, they must have been visible. Or was it simply that bleeding from the bladder cancer was no longer occurring?

If he was treated with Cisplatin chemotherapy for bladder cancer, as I was, this tends to deal with prostate cancer as a side effect. For example, my current treatment with it has reduced my PSA by 80%. It is also slightly odd that with a recurrence of bladder cancer he was not advised to have a precautionary bladder removal - or perhaps he refused this?

Had your Dad been having regular PSA Tests throughout the past two years? If so, unless this is a very aggressive PCa, it would have been detected before the present serious situation arose.

One thing is certain, his chances of surviving this are greatly reduced by his smoking. He is being exposed to carcinogens all the time he continues. Stopping will quickly boost the odds in his favour.

I hope the scan shows no spread as this may perhaps give him a lift and promote some positive thinking!

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