Out of area treatment NHS rights

User

Posted 05 Feb 2019 at 13:21

Good news on the PSA coming down nicely.

Ido4

User

Posted 08 Feb 2019 at 16:03

This morning I woke up with a 100% erection and I realised that I had not had to get out of bed for a pee all night. The 1" or so my penis has shrunk also appeared to have regenerated. I was elated, Then I woke up. ‘If it be thus to dream, still let me sleep!’ ( Twelfth Night).

Fully awake I realised I did have an erection but only 50% or so, and I had only had to pee twice overnight, I searched in vain for the lost 1" however. Still, things are on the mend, no discomfort now either. Booked my 2 month holiday today, so if Brexit happens while I am away in France I might have to claim asylum or something if I need treatment!

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 04 Mar 2019 at 13:04

Originally Posted by: Online Community Member

Only four more weeks on Tamsulosin, I wonder if I could finish it earlier? I have a few side effects but have stuck with it because it does help one pee!

I had a phone call from the doctors receptionist yesterday, my presence is required to see the doctor, something to do with a sleep apnea test I had done before the Brachytherapy, the hospital have written to the doc. so I assume that is something else to treat. I have decided that I will deny all symptoms of sleep apnea ( not that I have any of them anyway), I cannot have the hassle of not having a driving licence no matter how short the time will be. Nor can I contemplate wearing a "Hanibal" mask all night.

John

Asthma, Hypertension, GERD, PCa, Gout, Hemorrhoids, Eczma, ED, is this not enough God ?

Oh! Joy! Now I have been diagnosed with Atrial Fibrillation, ( I continue to deny Sleep Apnea ),I have had Chest xrays, electrocardiograms, blood tests and so on. I only went to the doc with a chest infection and since antibiotics failed to work I was put on Predisolone (steroids), these also failed to work and then the tests started, the diagnosis was Atrial Fibrillation, resulting in my lungs being part filled with fluid. So now I am on anticoagulants and diuretics as well as the rest of the medications. I make it 12 different medications I take at the moment. I currently feel quite knackered I am sleeping a lot and have no energy at all.

John

Edited by member 04 Mar 2019 at 15:56 | Reason: Speling

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 23 May 2019 at 15:28

After hospital visits, Echo cardiogram, xray of chest, ultra sound of abdomen, stool and urine tests, I was still feeling quite unwell. I couldn't walk more than 50 mtrs without being out of breath and was sleeping a lot during the day.

Having "had enough" I stopped each medication for a week in turn. ( Don't do this without consulting your doctor!) and when I stopped the Amlodipine I felt better after two days. Not completely better but an improvement.

6 weeks on and I am getting there, I actually have some energy! Moral is, anybody can have an adverse reaction to meds, so be aware.

On the prostate side of things I am now having better erections than before the brachy, that puzzles me a bit, however I am grateful for small mercies :-)

My orgasms are no longer dry although the amount of ejaculate is reduced.

I will now wait patiently for me next PSA result a month or so away.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 24 Jun 2019 at 12:51

Things have moved on! I now have heart failure with two leaking valves and an enlarged chamber with atrial fibrillation. I await a cardiologist appointment. I am not sure which ailment to worry about most! Anyway it looks like I won't be dying from Pca, more likely heart failure will get me first!

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 24 Jun 2019 at 15:49

Are you fit enough to have replacement valves?

Ido4

User

Posted 24 Jun 2019 at 19:49

I think I am fit enough, I am walking short distances now, up to 1/2 an hour, although I get tired. I will see what the cardiologist is prepared to do. I would go for the replacement valves if offered, I believe they make a very big difference.

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 25 Jun 2019 at 16:49

Hope that works out for you. It will make a big difference no doubt.

All the best,

Ido4

User

Posted 09 Jul 2019 at 13:45

Just back from my specialist appointment. PSA is 0.7 so falling nicely. Specialist is happy with that and will see me in 6 months.

I am slowly getting back to normal fitness, ever increasing walks, no dairy, no booze, no sugar, no salt and lots of fruit and veg. I can't say I love my new diet but I am getting used to it.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 09 Jul 2019 at 19:51

Did you have HT as well?

User

Posted 10 Jul 2019 at 21:34

No HT, just 74 Brachy pellets, I asked about HT because I was aware that it could be needed but oncologist said no not required.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 11 Jul 2019 at 06:44

I’m surprised at that because I understood HT gives added mojo to any treatment

User

Posted 11 Jul 2019 at 11:44

Yes, I was a bit surprised as well, now I wonder if I had/am getting the best treatment.

Before I had the brachy I did ask the nurse on here about HT and she said it wasn't always needed.

It's probably too late now, it's 8.5 months since the seeds implant so they will have decayed to quite low levels, I suspect HT would work best whilst the radioactivity was still active.

I have a phone number somewhere for my Macmillan nurse, I think a phone call would be in order.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 12 Jul 2019 at 15:23

Nurse tells me "Not all patients have HT, it all depends on the Oncologists assessment of each case".

In my case my Testosterone was already low ( I had come off replacement therapy) and my prostate volume was not so big. Maybe that influenced the decision not to offer HT. Anyway, having read about the side effects I am quite happy not to have had it!

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 12 Jul 2019 at 17:23

Could it be because you were " only" a 3+3 so they thought you were low risk? We know lots of men opt for active surveillance with Gleason 6 since the thinking being it will never become lethal in your lifetime. ( Well maybe if you live to over 100. 😉)

Regards

Ann

User

Posted 13 Jul 2019 at 17:37

Yes, initially I was low risk but when my PSA jumped to 10.8 in a few months I was advised that treatment was required.

I suspect ( although it's just my suspicion) that there was something else other than adenocarcinoma or maybe it was larger than the biopsy indicated. Whatever, with a bit of luck it is in remission now.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 07 Jan 2020 at 12:37

Well, 14 months after Brachy my PSA result is now 0.3 , my importance as a patient has been downgraded to seeing the Sister Specialist, she knows as much as the consultant methinks. She is happy with my results and does not know if the PSA will fall further or not, sometimes it does but I am told that 0.3 is OK.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 07 Jan 2020 at 13:53

Sounds like things are going great John. Long may that continue.

Ido4

User

Posted 08 Jul 2020 at 14:25

Today my PSA result is 0.1 and my Nurse specialist says that it is as good as it gets but it might go down a bit more.

I still get a bit of burning urine and still take Tamsulosin, I might try coming off them again soon.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 08 Jul 2020 at 19:59

Looking good John. Hope the urinary symptoms settle.

Ido4

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