Prostate cancer. A useful resource.

[rod_vw]

Three months into my hormone treatment , I have had concerns about what is actually happening , allegedly my cancer is being shrunk due to lack of testosterone, but my oncology team do no blood tests to check anything

Trying to get into our doctors is a joke , so I found an online self test option and ordered one. Arrived today , I didn’t realise (or read properly) when ordering but it only says positive or negative , above or below 4

Test done , it’s a bit like a Covid test but using a blood prick sample , 10 mins later confirmed negative

Definitely put my head in a better place

£25 well spent annoying that its so hard to get done as part of my treatment

My main concern was that the cancer wasn’t reducing and if PSA isn’t below 30 I can’t start the RT trial

All good now

David I can understand your anguish I was in the same position four months into my HT. I simply rang my Health Centre and requested a telephone appointment with a GP. As it happened I didn't have to get insistent but I would have done if necessary. When I spoke to the GP she totally agreed with me that I should know the current PSA figure and issued a blood test form.
Moral of story is that it's your body and your illness so not up to the medics to deny you such things. If necessary do like I did to get my RT appointment dates, go and eye-ball them and be assertive but never rude.

 

[pagey]

ok david trust me on this you will get an appt to see the oncologist and he will also ask you to have a blood test shortly before you meet (3 or 4 days.) mine was very low at that stage and i suspect yours will be as well, at this stage you will be given a start date for your rt .. at my rt sessions all patients i spoke to had the above. There may be variations at different health services but this is the norm at St Barts

 

[DavidG58]

Natural to have concerns , ‘ allegedly ‘ please ,respectfully , remove that word

Sadly I do stand by the statement , we have to be advised that a very small % of cases do not follow expectations and I think a simple thing like a blood test to check PSA for a reassurance for the patient if nothing else isn’t much to ask

While I am here, update on the sage tablets suggested to control hot sweats , they appear to have had absolutely no effect, I am three weeks in and will keep trying though I have 60 tablets

 

[sedge]

A friend of ours not only grew man boobs on HT but also suffered from permanent PMT - although it was his wife that suffered the latter not him! He said that as a married man with a daughter perhaps he was just getting his own back for what he'd had to suffer previously ......

 

[pagey]

A friend of ours not only grew man boobs on HT but also suffered from permanent PMT - although it was his wife that suffered the latter not him! He said that as a married man with a daughter perhaps he was just getting his own back for what he'd had to suffer previously ......

ive been lucky got the boobs but nothing else

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[rod_vw]

Sadly I do stand by the statement , we have to be advised that a very small % of cases do not follow expectations and I think a simple thing like a blood test to check PSA for a reassurance for the patient if nothing else isn’t much to ask

While I am here, update on the sage tablets suggested to control hot sweats , they appear to have had absolutely no effect, I am three weeks in and will keep trying though I have 60 tablets

I'll agree with the sage tablet theory, they were no help to me either and I took almost all of two bottles of them from Holland and Barrett.
I just hope that the sweats and ED will deminish or dissappear when I've been off the HT for a few months. My consultant indicates that I will be off the HT six months after my RT ends which should be mid August.

 

[Hettie's Crew]

My PSA has gone down of its’s own accord.
July 23 it was 4, resulting in referral, DRE, MRI, Biopsies and diagnosis of Cancer. Active surveillance agreed, no treatment.
Jan 24 up to 4.5
Apr 24 up again to 4.7
July 24 down, to 4.3, was expecting a further increase.
Another biopsy experience arranged for 29th August, so I’ll see what the story is then.
Just another reminder to any men who haven’t been tested, please get it done.

 

[The general]

My PSA has gone down of its’s own accord.
July 23 it was 4, resulting in referral, DRE, MRI, Biopsies and diagnosis of Cancer. Active surveillance agreed, no treatment.
Jan 24 up to 4.5
Apr 24 up again to 4.7
July 24 down, to 4.3, was expecting a further increase.
Another biopsy experience arranged for 29th August, so I’ll see what the story is then.
Just another reminder to any men who haven’t been tested, please get it done.

Active surveillance good , not sure why another biopsy ? Still i am not medical trained

 

[pagey]

my rt finished on 19/06 all they said to me was you will get an appointment to see the consultant take this label and order a blood test a few days before the app im not happy am i cured no idea i am still having hormone injections but now have a few problems like constant wind more weight gain frequent trips to pee including the night none of which i had before rt my app with the consultant is on 26/08 and i can see that its not going to go well

 

[Nirvanauk]

What do you mean when you say that it’s not going to go well? I’m sure your consultant will update you.

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[Hettie's Crew]

Active surveillance good , not sure why another biopsy ? Still i am not medical trained

When I had my first biopsies last year they concentrated on the side that felt (DRE) a little firm and showed up on the MRI, 9 on the suspect side and 5 on the other.
That turned out to be NAD but on the other side one of the biopsies proved positive, so I expect they might want to test that area more.

 

[arthur49]

my rt finished on 19/06 all they said to me was you will get an appointment to see the consultant take this label and order a blood test a few days before the app im not happy am i cured no idea i am still having hormone injections but now have a few problems like constant wind more weight gain frequent trips to pee including the night none of which i had before rt my app with the consultant is on 26/08 and i can see that its not going to go well

I was diagnosed in 2017. Too far gone to take out so radiotherapy and 2 years of hormone therapy. Annual PSA test which so far have been fine - waiting for results of latest at the moment.
I am not a medic but I would not read too much into changes since radiotherapy. My bowel has been damaged by RT and I am very "windy"! Problem is the RT treats the prostate but everything in its path gets a dose as well, so bowel, bladder can be affected.
Try to remain positive - I kept saying to myself "nothing is ever as bad as I think its going to be!" ............... and I was right ...........

 

[Nirvanauk]

Must admit since the scarring caused by the RT my rectum does what it wants, when it wants and I have absolutely no control. But it’s better than the alternative.

 

[InvictaMoto]

My July 11th blood test showed my PSA was 3.2 and I continue with the drugs and another test in October....

My friend John who started on the road about a fortnight after me in Nov 23 has been through the ringer with the hormone treatment and then a month of radiotherapy. He's 74 but after that he has aged visibly. It makes me thankful that I am on active surveillance.

 

[The general]

my rt finished on 19/06 all they said to me was you will get an appointment to see the consultant take this label and order a blood test a few days before the app im not happy am i cured no idea i am still having hormone injections but now have a few problems like constant wind more weight gain frequent trips to pee including the night none of which i had before rt my app with the consultant is on 26/08 and i can see that its not going to go well

All normal , steady yourself , i had AWR after treatment ! All normal procedures ‘ cure ‘ time will tell , i remember my appointment after 20 fractions Psa driven down to 0.03 remember about 96% success rate ??

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[The general]

It makes me thankful that I am on active surveillance.

Thats the best option , maybe not the safest thou

 

[The general]

I still have after effects after 5yrs but can live with it

 

[pagey]

What do you mean when you say that it’s not going to go well? I’m sure your consultant will update you.

I don't want to continue with hormone injections

 

[DavidG58]

I see my RT consultant tomorrow after what seems a very long 4 and a bit months since I saw anybody

Hoping to be given a start date for RT and which level I am going into on the trial I have been accepted on to

Started hormone treatment just after my last appointment , not suffered too badly, lot of hot sweats, swelling where I have been injected and nearly a stone heavier

I keep telling myself treatment is better than being told it’s too late

 

[The general]

I don't want to continue with hormone injections

I was very lucky only had 3

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[The general]

I am going into on the trial I

Is it a trail RT ??

 

[Nirvanauk]

Had mine for 2 years with no side effects other than I put on a shed load of weight especially around the belly, oh and my what’s it shrunk but the missus said that was a good thing.

 

[DavidG58]

Is it a trail RT ??

Yes, can’t remember the trial name now, will look it up later

Electronically selected between

1. Standard RT

2. Higher dose RT

3. Higher dose and also targeting lymph nodes

 

[pagey]

Me and others also had nodes done as a matter of course apparently

 

[pagey]

I was very lucky only had 3

I've had 3x3month and 1x1 month last one 2 weeks ago

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[DavidG58]

 

[rod_vw]

My HT has been...
1 x 1 month
1 x 3 month
1 x 1 month (to shift the sequence to avoid holidays)
2 x 3 month the last of which was last week

I am now twelve days into twenty of my RT with the expectation of being on HT for a further six months from the end of my RT according to the medics.

Side effects of the HT have been the obvious personal and hot sweats, I've managed to keep my weight static at just over 90kg (200lbs).
Side effects of the RT have been some bowel disruption and more frequent passing of urine most of which I put down to religiously keeping up a water intake of 2litres per day. I'm beginning to feel some fatigue creeping in but it's very minor.

More holidays into Europe with the camper begin on September 4th all being well, fingers crossed.

 

[pagey]

My HT has been...
1 x 1 month
1 x 3 month
1 x 1 month (to shift the sequence to avoid holidays)
2 x 3 month the last of which was last week

I am now twelve days into twenty of my RT with the expectation of being on HT for a further six months from the end of my RT according to the medics.

Side effects of the HT have been the obvious personal and hot sweats, I've managed to keep my weight static at just over 90kg (200lbs).
Side effects of the RT have been some bowel disruption and more frequent passing of urine most of which I put down to religiously keeping up a water intake of 2litres per day. I'm beginning to feel some fatigue creeping in but it's very minor.

More holidays into Europe with the camper begin on September 4th all being well, fingers crossed.

I'm the same except I have an app for another problem and hope to get into Europe around Sept 10

 

[DavidG58]

More holidays into Europe with the camper begin on September 4th all being well, fingers crossed.

I'm the same except I have an app for another problem and hope to get into Europe around Sept 10

My RT hasn’t started but I can’t get travel insurance , well I can but with virtually every permutation of medical issue excluded

Hoping it will change after RT

 

[pagey]

My RT hasn’t started but I can’t get travel insurance , well I can but with virtually every permutation of medical issue excluded

Hoping it will change after RT

I'm just going with my ghic card

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