Prostate cancer

[mhnmale]

I am interested to hear what everyone's experience with prostate cancer risk factors has been. Most research points out that often once there are physical symptoms of prostate cancer it has already spread. That is a pretty scary thing. So I am interested in what most guys are doing to protect themselves or for prostate cancer survivors/patients what is the way the found out they had prostate cancer?

[dtech]

This is something that annoys me the lack of organised screening for prostate cancer. Women are called for breast and cervical cancer screening. Why not men for prostate? A friend of mine aged 65,decided to go for a test purely by chance as his older brother had recently been diagnosed. Luckily he persuaded his GP to do it. The factors were way up and he was straight onto x-Ray, chemo etc therapy. They told him if they hadn't caught it then it would have been too late! End of rant. Lol.

[mhnmale Partner in reply to dtech]

Agreed! It really is a "silent" crisis because prostate cancer is very treatable if found early. In some parts there is a big debate about the value of taking a PSA which causes many men to not want to be screened. At the very least the PSA gets guys in to see their GP and take about prostate cancer risk!

[CornishBrian]

I found out because my PSA level was unusually high. Since then, I have been fro various test and examinations over the last 18 months and have my PSA levels monitored. Treatment has been none, tests have been various. I did a lot of searching around the internet and asked my urologist a lot of questions. The basics is, the worse thing is not cancer but an enlarged prostrate. Treatment for enlargement can go seriously wrong and quite often does. The reassuring thing with prostrate cancer is that most men died with it and very few die of it. If it remains local there is generally no problems apart from the symptoms. However, if it migrates, then there is a problem. The PSA levels that I had initial, were in their low 30's which did alarm me....normally below 6. Since then on my monitoring they have gone up and down....infections affect them, some foods affect them, in fact they are tempermental little beasties. Unless you are told that the cancer is migrating, you will go on as normal...hard thing to say "don't worry" because you will but be assured the initial panic will diminish. I had incontinence issues which had been triggered by my other conditions. This wetting became more and more and I used pads and nappies. Problem was, I became paranoid about smell of pee and so more or less shut myself away from family and friends. My wife couldn't help because she had lost her sense of smell years ago. The solution I came up with and was agreed by my urologist and GP was an indwelling catheter. I only us a bag at night, mainly to cut out the number of trips to the toilet but by day I use a flow valve on the catheter...or stop cock. I can still feel when my bladder wants emptying but the vale prevents it emptying at the wrong time. Now I just tootle off to the loo and open the stop cock....life is back to normal.

[Hidden in reply to CornishBrian]

Hi but when using flo valve do try to keep it level or higher than bladder or you increase trauma where by bladder wall gets sucked into catheter tip think of it like a plug hole in bath when emptying and if you place hand near hole it gets sucked in that's what happens to bladder wall this is where the things like the Rusch belly bag is great as bladder works more like normal in that it's pushing urine out rather than just draining it does empty properly when using one plus with that and valve you can use bladder like normal(constant drain is not good)then when need to empty maybe urgently you have the bag to use then empty that when somewhere convenient.

[MartyMcMe]

Thanks Cornish, that's useful. My Dad has a raised PSA but it's borderline significant (so they are not acting on it even for biopsy) and he's not got symptoms at all. Has been told to sit on it (literally I guess!) and wait. It's an interesting idea that cancer is not the worst possibility (because you don't die of it), as it goes against what the main fear is - i.e. cancer!

[PhilC]

i have been taking Pom-T capsule, nothing ventured nothing gained me thinks

[CornishBrian]

Once you reach 50/55, most GP's will do a test for prostrate cancer if you ask. It's only a blood test initially.

[Hidden]

Diagnosed with prostate cancer about two years ago. Started with waterworks problems. My PSA and Gleason scale results were not particularly high but nonetheless I had to undergo radiation treatment. 37 consecutive visits including christmas eve! Then there was hormone supressant treatment as prostate cancer is driven by testerone. That wasn't nice. When the treatment was over I started on 6 monthly consultations. The PSA scores were going down and then suddenly leapt again. They've brought the next appointment forward and I'm hoping for good news. If I wasn't a particularly serious case originally why should I be one now? Actually I'm not sure if that's very logical.

[CornishBrian in reply to Hidden]

Your PSA level can go up if you take medications for other conditions and if you happen to have a urine infection it will go sky high so may not be anything too drastic.

[Ed_Leaf in reply to Hidden]

I was told by my urologist that the psa frequently makes a jump a year to a year and a half after radiation treatments and then retreats. They are not sure why

[Charles3]

Hi, i am about 10 months into treatment for prostate cancer. I had thought getting up a few times a night and a limited pee flow was normal for 'a man of my age'.

My GP added on a PSA onto another set of tests we were doing for ME/CFS and it came back with a raised level of 42 (too much for a man of my age). In the UK any man over 50 can request the test at the GPs and they have to give it to you. So that is the first step.

Within days I was at the hospital for an MRI scan and a gamma scan, they showed a 'body' so onto biopsies which give you a Gleason scale. this tells you how serious it is and will dictate the treatment options.

I was immediately started on hormone tablets prior to 20 sessions of radiotherapy after a recovery period another PSA test and a level of 0.1 - Yipee! Ongoing hormone jabs for a total of two years with three monthly PSA tests. The side effects although not pleasant are better than the option.

I joined the local Prostate Cancer support group which I have found useful for informal help and information. You will meet a wide range of guys, there seems to be no common factor.

My way forward is to find ways to boost my immune system. I can recommend the Penny Brohn Cancer Care's 'Living Well' course. Its run around the UK and is free. They are based in Bristol.

I also use the Alexander Technique and have found it helps me through the whole complicated process. You will find there is a wealth of information and support organisations out there - unfortunately some conflicting advice as well.

So -

1. Stay calm - there is a way forward and plenty of men recover

2. Listen to the options (talk to the support group) and advice.

3. Do what you are told. If you are doing the treatment do it properly - diet etc.

4. Have fun. I have met a lot of people through this and there have been lots of laughs.

5. Stay away from negative people, the energy vampires.

6. Go full at it. Your wellbeing comes first.

Good luck

Charles

[Hidden]

Hi if anyone wants/needs any help/info about things like Catheters/bags etc and how to cope/live with them etc or things like washable pad types which work better for many than throw away types message me as helped on quite a few forums and was in the 21ccp and B&BF

Many things people do wrong when using a catheter for instance that makes them harder to live with.

Or just follow up on here as added this to me communities now

[Hidden]

One thing many never know or even told Enlarged prostate can be treated with progesterone natural or micronised far better than many pills they give you that cause side effects as progesterone is the thing that controls it but many are low in it as get older both males and females need/have it as it's the precursor to T and E.

funny thing was my specialist in urology didn't even know that!!! and was so excited and rushed off after seeing me to read/look into it.

sure makes me wonder about the health service/quacks

[Hidden]

Waterworks problems. When they did a biopsy the levels weren't all that high but they put me on prostap, testerone supresssor, and 37 consecutive visits to get radiation treatment ( including christmas eve. About 2 - 3 years ago.)

Three months ago I had a scheduled PSA which was raised. A more recent one was raised even more.

I won't say any more just now Mhnmale.

[Hidden]

After all the radiotherapy and the hormone treatment for prostate cancer my PSA levels started going up again, 3.7, 14. pretty high. Then I was complaining of pains in my back which I ascribed to a bad knee in need of replacing. My doctor didn't think much of that one. She told me to make sure I had my oncoming PSA test. I did and at a score of 14 they booked me in straight away for a scan. Then the truth came out. Prostate cancer secondaries were detected in the lower spine. No cure but can be controlled by radiotherapy and hormones. I've had the radio plus 3 more scans and will see the specialist next week and they will start me on hormones. Right now I'm looking for an effective painkiller. What a palaver!

[mhnmale Partner in reply to Hidden]

Wow, very nasty stuff. I can't imagine having to go through all that. Do they still have you on the Testosterone suppressor?

-Austin

[Hidden in reply to mhnmale]

mhnmale HI. They took me off the testosterone suppressor well before the prescribed time. The next PSA test showed my score going up. They reduced my schedule from 6 monthly tests to 3 monthly, but when I had the next PSA 3 months later the score had gone up quite seriously. In the last two weeks I've had 4 radiotherapy sessions 3 scans and a consultation and will be going on to a suppressor next week. I personaally think going on to 3 monthly PSAs was too little, it should have been monthly. They would have caught things sooner.

[Ed_Leaf]

I found mine by having yearly psa and physical check-ups with my Urologist. I had no physical symptoms. Good stream, never had to get up at night to urinate.

pa went to 4.7 and digital showed a bit of hardness on one side. Had a biopsy and cancer was found.

It was determined that my best path was radiation so I received radiation for 45 days.

finished radiation just before Christmas 2014. Six month psa was 1.1, 12 month was .56

some side effects, but nothing too terrible. some ed but that was there previous to radiation

[Earl2345]

I can't provide an answer, as I had bladder cancer, not prostate cancer. BUT I can offer a simple form of activism to let these bozos that focus on breast cancer, but pay only scattered reference to prostate cancer, know how we feel about the lack of attention.

There is an online program called "The Truth About Cancer" (thetruthaboutcancer.com). It deals with more natural methods of treatment. They devoted one out of nine segments to breast cancer, but information about prostate cancer is scattered piecemeal. You can do an online chat, or send an email, to let them know how it feels to be a second-class citizen in their book.