Out of area treatment NHS rights

User

Posted 18 Nov 2018 at 12:33

I am seeing the Oncologist who did the Brachytherapy on the 22nd Nov. I will have a scan of some sort (MRI? ) and then I will be passed onto my local urologist I think. That will cut out the travelling for me. I wonder when I will have a PSA test? I appreciate that my prostate has been "insulted" and that PSA testing will be pointless until things settle down, how long should that be? How often should I have a PSA test, 3 or 4 monthly?

John

EDIT The scan is a CT

Edited by member 18 Nov 2018 at 15:52 | Reason: Not specified

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 22 Nov 2018 at 20:55

I had a consultation with my oncologist today. Lots of questions about how things are and then it was my turn Seems I will have a PSA test sometime in February 19, there is apparently no point in doing one earlier as things will not have settled down enough. All my further follow ups will be done locally, whoopee! I have been driving for 5.5 hours today, drunk litres of coffee,eaten four egg mayo sandwiches and stopped four times en route for a wee.

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 23 Nov 2018 at 01:07

Egg mayo - my favourite

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 23 Nov 2018 at 08:41

As I am new to the forum I have just caught up with this post and have read though it while having breakfast (just as well I have a strong stomach)

i found it a very enlightening look int Brachytherap, you don’t find descriptions like that on any official site 😁.

i am being treated at Cheltenham Hospital and was not offer Brachytherapy and when questioned the told me that it is no longer on offer there. Not really an issue with me because I think I may have rejected it because of the implications of not being able to be around children for too long (don’t worry I’m not one of those) I do part time work and there is a new baby there.

i have opted for HT/RT and am happy with my choice.

Once again John thank you for the post And I hope you recovery continues well.

Bob

User

Posted 24 Nov 2018 at 11:17

Hello Bob, welcome here, sorry you have " joined the club". The radiation from Brachytherapy is not a danger to anyone else even children or pregnant women, prolonged contact for more than 10 minutes or so is not advised though, at least for the first few months.

If you wish you might put your Gleason score and stage etc in your profile, ir makes it a lot easier when offering advice.

Brachytherapy is usually for those of us who have a Gleason of 6 or 7 , PCa contained in the prostate, a prostate volume of around 50cc and so on. As usual in the medical world, these guidelines are treated as flexible, so vary from place to place.

I went to the Royal Berkshire in Reading for treatment ( not to far from you) and have had very good treatment. Side effects are, all joking put aside, really quite minor.

We all have to make our choices and since the outcomes are much the same I suppose it doesn't make much difference, my friend has had HT/RT and is reasonably happy with the results so far (apart from the side effects of the HT that is).

Good luck, keep us informed of how things are going.

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 Nov 2018 at 11:40

Originally Posted by: Online Community Member

Hello Bob,
If you wish you might put your Gleason score and stage etc in your profile, ir makes it a lot easier when offering advice.

Good luck, keep us informed of how things are going.

John

Hi John.

Done

User

Posted 10 Dec 2018 at 12:45

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 ?

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 10 Dec 2018 at 15:58

Originally Posted by: Online Community Member

That's not quite right - i think it depends on whether you are going for permanent seed or high dose brachy. Our friend cancelled his brachy When he was informed that he would not be allowed to have his baby granddaughter on his knee for about 6 months, that he would need to be careful around his pregnant daughter and must have a toilet for his sole use. Since he and his wife are the main day care for the grandchildren, he felt this was too risky and opted for surgery instead.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Dec 2018 at 18:00

I should have said " permanent seed brachytherapy " sorry! High dose non permanent brachytherapy involves some risk to other persons, lower dose permanent seed still has some risks to other persons but only for a short period and it is a very low risk.

John ( Less radioactive by half now and still going down )

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 20 Dec 2018 at 15:40

Today and last night have been a bit " not so normal ". I decided to stop taking the Tamsulosin yesterday, after all I was peeing well and had few side effects, bad mistake! I had a poor night, peeing with difficulty starting and a low flow, today I have had urgency and frequent peeing so I took a Tamsulosin and now, 3 hours on things are getting back to "normal".

I lost sleep last night so I had a 20 mins nap today, most unusual, I feel better now.

I won't stop the Tamsulosin for a while I think!

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 25 Dec 2018 at 19:15

I have been taking occasional Loperamide to help with bowel looseness and the Loperamide has helped a lot with this.

However, I have had problems with bottom wind, not a gentle breeze but a full blown hurricane at times. This has caused some discomfort not only to me but also to those around me. Discussing this with another vegetarian she mentioned probiotic yoghourt so I decided to give it a try. I was a bit sceptical but started with two a day four days ago. The results have been spectacular! Now I have a gentle breeze at best, no more hurricanes, and the bowel looseness is greatly reduced.

I hope this mention may help others who may search for such information, so I include the words diarrhoea, fart and flatulence for search purposes.

I wish I had known of the benefits of probiotics two months ago, it would have saved me some discomfort.

John

PS Try " Kefir "

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 Dec 2018 at 22:40

Thank you for posting. I get acute stomach pain in the morning but am not sure of the cause and this only abates after I have passed wind - will give probiotic yogs a try.

Barry

User

Posted 18 Jan 2019 at 12:57

I am three months "down the line" and I still have some issues, I get tired, I never used to, but now I have a couple of 20 minute naps each day. I still pee up to 5 times a night and night time flow is poor. I guess getting up so much in the night could make me tired.

I have what I think is radiation cystitis, burning when I pee, but not always so maybe that is getting better. I tried cranberry juice and dried cranberries, I think they made it worse!

I wonder if inreasing the Tamsulosin dose would help? I am on 20 mg and I have tried 40mg a couple of times, it seems to help.

John ( a bit fed up )

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 18 Jan 2019 at 17:34

Sparrow, I think mucking around with a prescribed dose is unwise. Might you have a UTI? Perhaps check with your GP and have a urine test?

User

Posted 18 Jan 2019 at 19:03

I don't think I have a UTI, I have no fever, blood in urine etc, however I think I will see my GP for a urine test and rule UTI out ( or in!).

I am not sure how long I should expect these side effects to last, maybe I have to be patient and wait a bit?

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 23 Jan 2019 at 16:30

Thanks AC, your remote diagnosis was spot on! I visited the "out of hours" doc over the weekend who did a dip test, told me "something is there" and prescribed antibiotics. Today the burning has gone but the frequency of peeing is much the same.

Still, that's one little problem sorted, and the diarrhoea ( from the antibiotics) should soon clear up.

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 Jan 2019 at 15:49

Excellent. You were lucky the first anti-biotic worked. Sometimes it takes some experimentation to get it right. But those damned side effects! Very common but short lived.

User

Posted 26 Jan 2019 at 12:24

After a visit to my normal GP I am now also on Oxybutynin 5mg twice a day. They seem to help a bit with the frequency but I was told they take up to a week to fully work. Anybody any experience of this medication?

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 26 Jan 2019 at 17:48

Sparrow

I have tried many of the anti spasm medications including oxybutinin, most of them take a while to kick in and I also found they become less effective after contined use.

Thanks Chris

User

Posted 05 Feb 2019 at 12:59

Todays PSA 1.2 (5th Feb)

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

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