Prostate cancer. A useful resource.

[big bertha]

Thank you and BillandHelen. Colin is seeing Oncologist at the Western in a couple of weeks.A Mr Malik. We are used to the Western Oncology dept as I was treated 14 years ago there for tongue cancer. We reckon it'll be radiotherapy as he's been on hormones for 3 months and due another injection soon. He was told by Urologist they don't usually opt for removal.

 

[BillandHelen]

Thank you and BillandHelen. Colin is seeing Oncologist at the Western in a couple of weeks.A Mr Malik. We are used to the Western Oncology dept as I was treated 14 years ago there for tongue cancer. We reckon it'll be radiotherapy as he's been on hormones for 3 months and due another injection soon. He was told by Urologist they don't usually opt for removal.

Looks like Colin is in excellent hands, he is very experienced and also works in the private sector at the Spire hospital.

“Dr Malik is a Consultant in Clinical Oncology at the Edinburgh Cancer Centre and an Honorary Senior Clinical Lecturer at the University of Edinburgh. His main clinical interests are in urological cancers especially prostate, renal, bladder and germ cell cancers. He has extensive experience in clinical trials related to urological cancers, advanced radiotherapy techniques (SABR, VMAT and brachytherapy) and has been a principal investigator on several practice change urological cancer trials.”

 

[DavidG58]

I have just had a telephone consultation with my oncologist, six months after my RT, PSA test last week is in his words barely detectable at 0.004

Next test in 6 months , but all as good as could be hoped, a few minor bowel issues but minor compared to the alternative

 

[pagey]

Same as me just a 6 monthly blood test and surveillance

 

[The general]

Yes par for course overvtome psa will rise and psa reading are much more reliable AFTER TREATMENT, as for bowel problems again par you course i never recovered ref bowel problems

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[Speve]

Unfortunately in my case I already have a bowel condition and I have to perform self catheterisation three times a day as my bladder retention is very high oncology are concerned that if RT is used it could make it worse and long term they feel surgery is my best option.
On talking to the surgeon who showed me my MRI pictures and explained everything I could see a definite shadow of cancer and I feel it’s the right way for me to go it’s going to be Robotic surgery via keyhole and he was very reassuring and informative about the whole process he also told me that he suspects that I will still need to self catheterise as my bladder is twice normal size and walls are thin. I’m now on the list for surgery it’s around three months and I have to start hormone therapy soon.
My GP is investigating my bowel troubles but not very successfully. Watch this space

 

[varaizian]

Unfortunately in my case I already have a bowel condition and I have to perform self catheterisation three times a day as my bladder retention is very high oncology are concerned that if RT is used it could make it worse and long term they feel surgery is my best option.
On talking to the surgeon who showed me my MRI pictures and explained everything I could see a definite shadow of cancer and I feel it’s the right way for me to go it’s going to be Robotic surgery via keyhole and he was very reassuring and informative about the whole process he also told me that he suspects that I will still need to self catheterise as my bladder is twice normal size and walls are thin. I’m now on the list for surgery it’s around three months and I have to start hormone therapy soon.
My GP is investigating my bowel troubles but not very successfully. Watch this space

None of the standard emogies are appropriate so this is just to say that I have huge sympathy for your situation and wish you the very best for a reasonable outcome.

 

[varaizian]

I said I would let people know how my situation panned out. I have finished all the investigative stuff and 2 days ago I was told by the consultant that the urology team have decided that, because my cancer is not particularly invasive and has not spread to other bones or tissue, it and can be treated solely with radiotherapy. My programme starts on Monday next week and will involve around 36 sessions. I have been passed back to the care of my GP equivalent and the next appointment with the consultant is March 2026. I remain completely symptom free apart from needing a pee in the middle of the night: but then who doesn't at 76!

 

[Speve]

needing a pee in the middle of the night: but then who doesn't at 76!

Unfortunately I don’t at 73 but that’s due to retention

 

[big bertha]

Colin had his first Oncologist appointment today.He's on a curative path. It has spread to 1 lymph node so Brachytherapy not an option. He will stay on 3 monthly hormone injections plus Abiraterone and steroid for 2 years and radiotherapy in June for the month. He had a nice lady doctor in Edinburgh today. I believe this drug is not used in England for people with cancer that has not spread unless you pay for it privately. Nice doctor just phoned his liver healthy so safe to go on the pills and his psa down to 0.6 from 136.

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[The general]

0.6 from 136.

HT does it’s work. Ex

 

[phil_in_npton]

Good Morning

This is a brilliant thread to make people more aware of all the options and scenarios that are possible. It’s comforting in a strange way that one is not alone in the worry and stress that begins from that very first “bad news” test.
I had that test, a charity one, £25 and a 6.1 red result. To docs and a NHS test confirmed figure. They booked me in for an MRI a week or so later. A nervous two week wait, then the phone call with results ( on our wedding anniversary)
I am all clear! No lesions visible, however prostate is 35% enlarged, but nothing to worry about. A marker of 7.4 set for future results to see if things need looking at in future.
I feel so lucky and a bit of a fraud reading some of your stories. Best wishes to all in any ongoing treatments and anyone not yet gone for a test, please do so! It’s better to know now and get it sorted than leave it till it’s too late.

Phil in Northampton

 

[rod_vw]

Good Morning

This is a brilliant thread to make people more aware of all the options and scenarios that are possible. It’s comforting in a strange way that one is not alone in the worry and stress that begins from that very first “bad news” test.
I had that test, a charity one, £25 and a 6.1 red result. To docs and a NHS test confirmed figure. They booked me in for an MRI a week or so later. A nervous two week wait, then the phone call with results ( on our wedding anniversary)
I am all clear! No lesions visible, however prostate is 35% enlarged, but nothing to worry about. A marker of 7.4 set for future results to see if things need looking at in future.
I feel so lucky and a bit of a fraud reading some of your stories. Best wishes to all in any ongoing treatments and anyone not yet gone for a test, please do so! It’s better to know now and get it sorted than leave it till it’s too late.

Phil in Northampton

That's a wonderful result from being proactive and going for a test may your future yield the same.

All the very best to you Phil but remember to keep up the regular tests and take care of yourself & your family.

 

[Speve]

God morning All,
As promised I have an update on my treatment my prostectomy operation is on 28th May at Southampton General which is a lot quicker than was originally told so good news as far as I’m concerned I’m told they are confident they will remove all of the cancer so hopefully after a longish recovery period I can start getting on with life again
Good luck to all of you that are still awaiting treatment I can only hope you are treated as well and efficiently as I have

 

[Oldrat]

I’m sure it’ll be fine.

But don’t forget to do your pelvic floor exercises.

Put post it note reminders on the loo, the fridge, all over the place and do 10 reps every time you see a note.

I promise you, it’ll speed your recovery up and reduce the length of time you have to wear a bloomin’ awful catheter.

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[Jimbohorlicks]

God morning All,
As promised I have an update on my treatment my prostectomy operation is on 28th May at Southampton General which is a lot quicker than was originally told so good news as far as I’m concerned I’m told they are confident they will remove all of the cancer so hopefully after a longish recovery period I can start getting on with life again
Good luck to all of you that are still awaiting treatment I can only hope you are treated as well and efficiently as I have

Best of luck and trust all goes well for the op and as said keep doing the pelvic floor exercises before and after the op.

 

[Rapido666F]

DONT do pelvic floor exercises with your catheter in!
My physiotherapist said 3 times per day is sufficient BUT you need to do “long” holds (10s) and “short” holds (on and off). I do 10s then 10x short and repeat 10 times, 3 times per day guided by alarms on my phone
Enjoy! (For the rest of your life)

 

[TheMobileWanderer]

Looks like Colin is in excellent hands, he is very experienced and also works in the private sector at the Spire hospital.

“Dr Malik is a Consultant in Clinical Oncology at the Edinburgh Cancer Centre and an Honorary Senior Clinical Lecturer at the University of Edinburgh. His main clinical interests are in urological cancers especially prostate, renal, bladder and germ cell cancers. He has extensive experience in clinical trials related to urological cancers, advanced radiotherapy techniques (SABR, VMAT and brachytherapy) and has been a principal investigator on several practice change urological cancer trials.”

A triviality from me; I wonder if he's a brother of actor Art, whose brothers are all doctors.

 

[The general]

Southampton General

Thats where i had my RT treatment 2019 and today i had my 6 month psa check results thurs or even tomorrow pm on NHS APP . The general got an ex track record ! Good luck

 

[big bertha]

A triviality from me; I wonder if he's a brother of actor Art, whose brothers are all doctors.

Malik is the consultant but Colin so far has only seen a woman oncologist. Still on fortnightly bloods and phone appointment 2 days after if any concerns. Last psa was 0.1. He's seeing oncologist in a couple of weeks to discuss RT.

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[Speve]

DONT do pelvic floor exercises with your catheter in!
My physiotherapist said 3 times per day is sufficient BUT you need to do “long” holds (10s) and “short” holds (on and off). I do 10s then 10x short and repeat 10 times, 3 times per day guided by alarms on my phone
Enjoy! (For the rest of your life)

I’m a bit unique as I have chronic retention and have to self catheterise three times a day so I don’t have the usual problems of constantly peeing in fact the opposite I never need to get up in the night and very rarely need a pee in the day. However I do have bowel problem that is awaiting a diagnosis from a colonoscopy I had a month ago no results back yet but I do regular pelvic floor exercises to help my bowel. The reason I could not have RT was due to this problem which could be made even worse especially if im diagnosed with IBS or Colitis which has been tested for in biopsies.

 

[varaizian]

I’m a bit unique as I have chronic retention and have to self catheterise three times a day so I don’t have the usual problems of constantly peeing in fact the opposite I never need to get up in the night and very rarely need a pee in the day. However I do have bowel problem that is awaiting a diagnosis from a colonoscopy I had a month ago no results back yet but I do regular pelvic floor exercises to help my bowel. The reason I could not have RT was due to this problem which could be made even worse especially if im diagnosed with IBS or Colitis which has been tested for in biopsies.

Back at #998 I thought I was about to start RT but there were a few anomalies on an MRI scan so the radiologist wanted me to see a gastroenterologist first. My transit habit is always very slow and occasionally grinds to a halt; particularly when travelling in the van. Presumably because of road vibration. Not helped by spicy food either which is a bit of a shame! I did wonder how I was going to keep things moving with a half-hour drive for treatment every day. Sport suspension in the car doesn't help in that regard. Normal laxatives don't have much effect. Appointment next week so not long to find out.

 

[TheMobileWanderer]

Malik is the consultant but Colin so far has only seen a woman oncologist. Still on fortnightly bloods and phone appointment 2 days after if any concerns. Last psa was 0.1. He's seeing oncologist in a couple of weeks to discuss RT.

My thoughts are with you and anyone in similar predicament.
My late Dad was got by it. He discussed it with his wife, of course, but told nobody else of the prognosis so it was only at the end that we became aware of the situation. Told of all of the history and events then but not able to be 'with him' during it all, which still irks me, after 20yrs.
Hoping you both get that which you need.

 

[Abacist]

Apologies but I have not read the preceeding 34 pages of posts so my apologies for that.

After pressure from the better half and peeing two or three times a night I asked the Doc about a prostate test. He had previously said years ago that the test was not reliable.

Saw the Doc who discussed matters and gave me an examination! Said it felt hard and that he should refer me to Urology - Accepted

Today after only a few weeks I had my hospital appointment which included a further discussion about symptoms, a physical exam of torso, testicles, penis and finger up the bum to be advised that I should stick to decaf tea and coffee which I already do, drink more water, and that both my blood test and physical exam of my prostate were normal for a male of my age of 73 peeing twice and sometimes 3 times during the night.

Peace of mind given to me today but I can't sleep a wink tonight!

 

[rod_vw]

Apologies but I have not read the preceeding 34 pages of posts so my apologies for that.

After pressure from the better half and peeing two or three times a night I asked the Doc about a prostate test. He had previously said years ago that the test was not reliable.

Saw the Doc who discussed matters and gave me an examination! Said it felt hard and that he should refer me to Urology - Accepted

Today after only a few weeks I had my hospital appointment which included a further discussion about symptoms, a physical exam of torso, testicles, penis and finger up the bum to be advised that I should stick to decaf tea and coffee which I already do, drink more water, and that both my blood test and physical exam of my prostate were normal for a male of my age of 73 peeing twice and sometimes 3 times during the night.

Peace of mind given to me today but I can't sleep a wink tonight!

Welcome to this thread, you did the right thing in pursuing your concerns that is where so many of us began the cancer journey. Thank goodness the outcome for you has been so much better than for many of us.

However, go and pressure your GP for regular PSA tests in a year or so.

Best wishes,
Rod

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[sedge]

However, go and pressure your GP for regular PSA tests in a year or so.

yeah, what he said! Once you have a result, from then on you can keep track of it so if eg you have another PSA test exactly 12 months later - and the result is vastly different - that is not normal.

 

[Abacist]

I remember being told that most old men have evidence of prostate cancer when post mortems are carried out. It’s just that something else gets a lot of people first like strokes, heart attacks etc.

 

[varaizian]

I remember being told that most old men have evidence of prostate cancer when post mortems are carried out. It’s just that something else gets a lot of people first like strokes, heart attacks etc.

Being in the French system I have comprehensive blood tests every year. My GP doesn’t trust PSA tests either and always said that in Germany most people have post mortem examinations and most old men have prostate cancer. My numbers crept up very slowly over the years and he still stuck to his theory but when it nudged over 5 (the accepted maximum figure here) he conceded that it was worth looking at further a d prescr

 

[sedge]

Think the international consensus now is 'anything over 3' gets referred to hospital for further investigation.

 

[varaizian]

Being in the French system I have comprehensive blood tests every year. My GP doesn’t trust PSA tests either and always said that in Germany most people have post mortem examinations and most old men have prostate cancer. My numbers crept up very slowly over about 15 years and he still stuck to his theory but when it nudged over 5 (the accepted maximum figure here) he conceded that it was worth looking at further and prescribed an MRI test to take to the Urologist. That test found Stage 1/2 cancer but luckily non-aggressive. Please keep a careful watch over your symptoms and don’t get complacent.

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