Prostate cancer

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Discussion

GT3Manthey

4,738 posts

57 months

Friday 6th November 2020
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ArtyP said:
Hi, my experiences...

Aged 53, I'd been having water works troubles, usually when going from a hot to a cold environment, or visa versa, finally went to the Docs, the appointment lasted barely 5 mins before I was dispatched for a blood test that PM, the result, elevated PSA, so a rapid series of hospital appointments, CT / MRI (Bone scan I think) a Biopsy (delightful !!!!) I scored 8/10 on the Gleeson and Prostate cancer was confirmed, choices, chemotherapy, radiotherapy or surgery, with a recommendation of surgery, I took the latter, robotic prostate removal......

The recovery hasn't been easy, lots of frustrations, but I'm still here, I got to walk my daughter down the aisle this summer

Amusing bit, got medication for the erectile disfunction, worked great, took as recommended for a first time, but after 8 hours it was a beyond a joke, LOL, now reduced the level to 25% of the starting dose

Now over 2 years on, 6 monthly blood tests, moving to 12 monthly, life is good, a bit different but definatly good
Sorry to hear what you've been through but you are clearly coming out the other side of it.

Good luck

rovermorris999

5,271 posts

197 months

Friday 6th November 2020
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Nice to hear a positive outcome. Best of luck.

RC1807

13,019 posts

176 months

Saturday 28th November 2020
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Arty P: I'm pleased to read of your treatment, and I wish you all the best for your recovery.
My brother is pending treatment at the movement in the U.S. He's 56.

His insurance company is arguing the toss over his preferred $7k treatment cost (proton therapy) vs. their preferred route of $5k for prostate removal. They'd then be adding up the associated post-op treatment costs.

He's been waiting 5 months now! His cancer hadn't spread when he had his bone scan in July, but who knows now?
He's obviously very concerned.

(FWIW, my brother's employer pays this insurance co. >$3k / month in premiums for my brother and his family, so a $7k bill with a 25% deductible isn't a big deal at all. He even offered to pay the $2k difference. No deal!)

The_Doc

5,142 posts

228 months

Sunday 20th December 2020
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New rules for the use of PSA in the UK

new NHS rules said:
Where PSA testing is clinically indicated (see below), or requested by the man
aged 50 and over, he should have a careful discussion about the potential
risks and benefits of PSA testing which allows for shared decision making
before a PSA test. Various tools are available to assist with shared decision
making (see below)

PSA testing should be considered in asymptomatic men over age 40 who are
at higher risk of prostate cancer due if they are Black and/or have a family
history of prostate cancer

PSA testing should be considered when clinically indicated (ideally after
counselling on the potential risks and benefits of testing) in men when there
is clinical suspicion of prostate cancer, which may include the following
symptoms:

— Lower urinary tract symptoms (LUTS), such nocturia, urinary frequency,
hesitancy, reduced flow, urgency or retention.
— Erectile dysfunction.
— Visible haematuria.
— Unexplained symptoms that could be due to advanced prostate cancer
(for example lower back pain, bone pain, weight loss).


PSA testing for prostate cancer is not recommended in asymptomatic men
(unless they are at high risk of prostate cancer i.e. Black and/or family
history) is not recommended. This is because the benefits have not been
shown to clearly outweigh the harms. In particular, there is concern about
the high risk of false positive results.

Where PSA test results are mildly raised above the age specific range for an
individual patient, it may be appropriate to repeat the test within two to three
months to monitor the trend.
Note: PSA testing for prostate cancer should be avoided if the man has:
— An active or recent urinary infection (PSA may remain raised for many
months).
— Had a prostate biopsy in the previous 6 weeks
both of which are likely to raise PSA and give a false positive result.
Source: NHS England Evidence Based Interventions – Wave 2 publication
https://www.aomrc.org.uk/wp-content/uploads/2020/1...
an enjoyable 147 page read for us clinicians, although not proof read very well.....

Take home message:
Use PSA very carefully, because it needs careful interpretation and isn't accurate for Prostate Cancer

rovermorris999

5,271 posts

197 months

Sunday 20th December 2020
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Interesting that it says a UTI can cause a high PSA for months. I was told six weeks so perhaps the guidance has changed.

RC1807

13,019 posts

176 months

Monday 11th January 2021
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I was very pleased to learn this weekend that, after my brother's employer opened their insurance scheme to other plans, my brother finally has approval for his proton treatment for prostate cancer approved.
He was first diagnosed 6 months ago! frown

He still has to pay something like $15k towards the total cost, though, which is more than he was originally told the total treatment was going to be, but it's the treatment he wanted.
The US "healthcare" system is so fked up.

db10

281 posts

271 months

Tuesday 19th January 2021
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i have a prostate exam every year as part of my medical - it takes 2 seconds and is totally painless (the doc making polite conversation during the process is the most amusing part).

Also had a colonoscopy as part of the medical which was interesting - worst bit was the prep (you have to drink a formula which clears your bowels out). I was sedated and dont remember a thing about it other than the most glorious cheese and pickle sandwich they woke me up with !

I would encourage any bloke to get these checks done - they really are nothing and I am the most squeamish person you will ever meet !

ArtyP

29 posts

102 months

Tuesday 19th January 2021
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The worst part of the colonoscopy is the formula that has to be drunk beforehand

In mine, there was a screen that allowed the procedure to be followed, with a running commentary from Doc, sounds weird, but strangely fascinating.....

I think that PSA screening should be treated like Smear Tests / Mammograms, regular from age 40......

spaximus

4,289 posts

261 months

Tuesday 19th January 2021
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Yep Movie Prep is a thing to be hold. The instructions simple said take first pack the at the prescribed time take a second pack.

It helpfully said do not go far from home!

It took ages for mine to kick in but when it did it was a twinge so I made a move toward the library. which turned into a sprint where I would have outrun Linford Christie.

Next Day I too watched in a lightly sedated haze as the endoscope was driven around my body. It was strangely entertaining.

Apparently my American friends say this is a normal event every couple of years as part of medicals over there.

RC1807

13,019 posts

176 months

Thursday 4th February 2021
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db10 said:
i have a prostate exam every year as part of my medical - it takes 2 seconds and is totally painless (the doc making polite conversation during the process is the most amusing part).

Also had a colonoscopy as part of the medical which was interesting - worst bit was the prep (you have to drink a formula which clears your bowels out). I was sedated and dont remember a thing about it other than the most glorious cheese and pickle sandwich they woke me up with !

I would encourage any bloke to get these checks done - they really are nothing and I am the most squeamish person you will ever meet !
None of my brother's symptoms were picked up in his annual colonoscopy. He was having memory problems. Dr told him it was a testosterone deficiency and was going to treat with pills ... as they do. My brother refused the scrip and wanted to find out WHY he had a testosterone deficiency .... enlarged prostate. Pushed furthet to investigate that = cancer.
He's started his set-up for his proton therapy, which involved having some gold markers instered to his prostate. The clinic are now defining the measurements for the proton treatment which should start in a couple of weeks, and will last a couple of weeks.

The maddest thing about this: my brother's had to fight tooth and nail for the tests, then to get his preferred treatment.
However, now it's starting, he really looks like the world has been lifted from his shoulders, which is great already. It's been 7 months since he was diagnosed.

(I've had 3 colonoscopies now. I made the mistake with the 2nd one to not have the sedative. fk me that was uncomfortable (!!) .... especially when you learn the Dr is a whole METRE inside your intestines with the camera! Until the lack of sedative, the worst part was the preparation meds the day before.... WHOOSH!)

RC1807

13,019 posts

176 months

Sunday 21st February 2021
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My brother's had 5/7 of his proton therapy treatment sessions so far, with no side effects.
Just Monday and Wednesday mornings' sessions to go, then he should be done. *fingers crossed*

Derek Smith

46,551 posts

256 months

Wednesday 24th February 2021
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I’m 74, active, and I do a few light weights regularly. I'm fiarly healthy, although have three broken vertebrae which give me a bit of stick.

I have an elevated PSA and had an MRI where the consultant found an area that concerned him and he reckoned that what I've got is not age related enlarged prostrate. I’ve had 6-monthly PSA tests and the latest came back 13.7, having increased from 10.5 six months ago. I’m going to have another MRI, but this time to help with a biopsy, scheduled within the next month.

I have a problem with full anaesthetics. My heart stopped once, and even a later ‘light’ full med put me out for 4 days, and that was in my 40s. So surgery would appear to be out.

Taking my age into consideration, I’d be realistic and opt for something that would delay what is, after all, inevitable. Anyone experienced the options?

N7GTX

8,075 posts

151 months

Wednesday 24th February 2021
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My brother was 62 when diagnosed with P.C. At that time his preferred option would have been surgery (prostatectomy) but due to a heart condition he couldn't have surgery. The next option was radiotherapy with hormone therapy but after discussion with his team they advised not to. So, since then he has been on hormone therapy alone and will remain on it indefinitely. The hormones are suppressed which in turn prevents the cancer spreading and so far his PSA readings have remained stable for the last 3 years. The side effects can cause some men issues so they are not for everyone. He is on Bicalutamide (Casodex) which is a pill taken every day.
There are many treatments now so discuss these in detail with your team. The best advice is on Prostate Cancer UK with a good forum - https://prostatecanceruk.org/prostate-information For any other help contact Mcmillan - https://www.macmillan.org.uk/

Derek Smith

46,551 posts

256 months

Wednesday 24th February 2021
quotequote all
N7GTX said:
My brother was 62 when diagnosed with P.C. At that time his preferred option would have been surgery (prostatectomy) but due to a heart condition he couldn't have surgery. The next option was radiotherapy with hormone therapy but after discussion with his team they advised not to. So, since then he has been on hormone therapy alone and will remain on it indefinitely. The hormones are suppressed which in turn prevents the cancer spreading and so far his PSA readings have remained stable for the last 3 years. The side effects can cause some men issues so they are not for everyone. He is on Bicalutamide (Casodex) which is a pill taken every day.
There are many treatments now so discuss these in detail with your team. The best advice is on Prostate Cancer UK with a good forum - https://prostatecanceruk.org/prostate-information For any other help contact Mcmillan - https://www.macmillan.org.uk/
Thanks for that.

Pumps100

22 posts

42 months

Tuesday 29th June 2021
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Interesting discussion. I first got my PSA checked in 2008 aged 51. It was 6.6. GP asked me what I wanted to do. I declined going for a biopsy. In the intervening years I suffered from a couple of instances when I had urine infections - frequent peeing and never quite fully emptying the bladder. GP put it down to too much alcohol and sun (been to a festival).

Over the years I would get a PSA test and it crept up from 6.6, 8.6, 12, 10, and so on. In 2016 go for MRI scan - all clear. Nothing suspect. In the summer of 2019 wife and I going holiday to Spain. Suitcases in the car. Mate of mine is leaving his caravan on my drive. I helps him manoeuvre it and in doing so did my back in big time. Anyway, don't say anything to wife, take painkillers and we get the flight to Spain. I am in absolute agony. Confess all to wife and attend local clinic - prescribed anti-inflammatory drugs and painkillers (tramadol) and gets a shot in my rear end analgesic pain relief. Back to hotel. Back better but unable to pee. Won't bore you with gory details but had to be hospitalised for emergency catheter intervention. Made it home and was six weeks with catheter before it was removed and I was able to pee on my own. Tip: if you are prescribed Tamsulosis take it.

In the early spring of 2020 aged 63 PSA now 17.5. MRI & bone scan followed by biopsy at the height of Covid Lockdown No. 1. Prostate Cancer diagnosed. I had the Robotic Prostatectomy 2nd July 2020 so almost one year on now. Catheter in for a week or so but I was well used to this because of my previous experience. I was never much bothered by incontinence and was completely OK by day 30 - I was very lucky - many people really suffer. Recovery took some months - by late September I got involved in some major renovation stuff in the house. Hard work but this helped me regain some fitness and flexibility in my core.

Sex life has never recovered. Tried all the ED drugs none worked. Even tried the injection drug Alprostadil - that did not work either. In hindsight I wish I had tried a different route for this. Low dose ED drugs taken daily or every other day to get some blood into your nether regions - use it or lose it as they say.

Key things looking back

Urine Infections are a warning

Peeing issues are a warning

If you are prescribed Tamsulosis take it

Don't be scared of the biopsy

Take with pinch of salt what your GP says about PSA results. Listen to your Urologist - they know better than all

Don't leave it too late for surgery - the older you are the less likely you'll have it

I have other practical tips post surgery which I'll share on request.

Take ED drugs as soon as you are able to. Cut them up into small bits and take daily.

Anyway that is my story.

Edited by Pumps100 on Tuesday 29th June 13:31

IJWS15

1,944 posts

93 months

Friday 23rd July 2021
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Experience so far . .

At 48 went out for a drink (end of contract and a lot of the team leaving the company) visited to loo and struggled to pee although I needed to - real wake up call.

Visited doctor, PSA test done - just under 10. Referred to specialist. He described it as the level he would expect in a man 20-25 years older than I was.

Specialist view after 6 months and reduced PSA levels (well to 3-4) by medication (Stated on Finasteride(?) now on Dutasteride) was that I had prostate cancer as nothing else would explain the test results.

Biopsy found nothing but as the specialist says it could be pinhead size and they just miss it with the needle. Never seen such a big antibiotic tablet.

Couple of years later PSA rises and a further biopsy done, still nothing found - they were still shooting blind.

Couple of years later - happens again and this time I get sent for an MRI to see if they can give the guy with the needle a target to shoot at . . they can't see anything so no biopsy done - big sigh of relief.

My GP says I haven't got cancer because they haven't found it. The specialist says it is the only reason for the blood test results. I know who I believe and it isn't the one I want to believe.

14 years later I am treating the enlarged prostate with medication and the last PSA was below 2. Had a full body MRI scan 5 years ago to track down the cause of shoulder pain and the outcome of that was several issues found but, other than it being enlarged, no sign of anything in the prostate.

I am on 6 monthly PSA tests (which reminds me - I am about due a test) and the first thing I do if it changes is get another test to see if it was an anomaly - if the second is high as well then I seek a referral back to the specialist.


Please remember the objective is to die with it, not of it.

The_Doc

5,142 posts

228 months

Friday 23rd July 2021
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IJWS15 said:
My GP says I haven't got cancer because they haven't found it.
It's this in a nutshell, with so much medicine.

PSA isn't a cancer test and therefore you only worry when you have a biopsy result.
Why spend the last 20 years of your life worrying about a number...?

Edited by The_Doc on Saturday 24th July 07:16

crankedup5

10,804 posts

43 months

Wednesday 8th September 2021
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I started a thread recently ‘blood in pee’, and will update as I tread the pathway.
Liver, bladder and kidneys all clear.
Prostate has. ‘nodule’ consultant is booking me in fro MRI and biopsy. At the ripe old age of 70 and have been fortunate with generally good health this has come as a bit of a shock. Still fingers crossed.
Update to follow.

crankedup5

10,804 posts

43 months

Saturday 11th September 2021
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MRI today, thirty five minutes in the tunnel, now a frustrating nine day wait for a CT scan. Maybe that will change when urology have a look at my MRI images?

crankedup5

10,804 posts

43 months

Thursday 16th September 2021
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I have a ‘significantly raised PSA at 43. Decimal point missing I assume?
CT urogram on Monday. 20/9/21