I have opted for Brachytherapy but it is not done locally.
My urologist has written to see if another hospital will take this on.
I have a copy of letter that was sent and it mentions the possibility that my CCG may not pay.
Since I want to be ready to fight my corner so to speak, what are my rights? Can I insist on treatment at a hospital of my choice?
I should mention that in my are it is open surgery or external beam radiotherapy, no other choices, hence my interest in going "out of area".
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
I have opted for Brachytherapy but it is not done locally.
My urologist has written to see if another hospital will take this on.
I have a copy of letter that was sent and it mentions the possibility that my CCG may not pay.
Since I want to be ready to fight my corner so to speak, what are my rights? Can I insist on treatment at a hospital of my choice?
I should mention that in my are it is open surgery or external beam radiotherapy, no other choices, hence my interest in going "out of area".
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
Well, I just had a nice lady from NHS England phone me, she confirms that there is "no problem" with funding the out of area treatment :-)
Now I just need the consultants to come back from holidays and get the ball rolling.
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
Well, I am now back home after my Brachytherapy on the 25th, all went as to be expected and I had 74 “seeds” through 25 needle holes. I was left with the catheter in place for about 3 hours as there was a bit of bleeding into my bladder but I narrowly avoided a transfusion, so had to pass some large clots, by large I mean they were the size of a Titanic ‘berg.
The boredom of hanging around was alleviated to some extent by walking around the other beds in other rooms ( I had the single bedded “Royal” room with TV and radio ) and enquiring as to how many seeds they had had. I won! The nearest to me was 68, a walk in the park to my 74. I believe I will save a fortune on torch batteries as the seeds warm up. The trip to the theatre was a bit disappointing, I was looking forward to a ride on a trolley with blue lights and two tone horn, but no, I had to walk, down the lift along the passageway up some stairs and round the corner, all in my dressing gown from Asda ( £14, A BARGAIN) and my stripey red supportive underpants. I also bought a pair of real leather slippers to complete the outfit (£12 from Asda). Then I had to take them all off and put them in a plastic bag, another £26 wasted, my old slippers and dressing gown would have done, I admit my old grey (they used to be white) M&S underpants were past it, so the new stripey underpants won’t be wasted. The shaving between my legs was expertly done but they forgot the aftershave lotion, but since I was under by that time I never knew who did it, they could have done my chest and back as well.
In keeping with my first class room I had fish and chips with mushy peas for tea, “Royal” food indeed, the food was very good considering it travelled 1 mile on a stainless trolley.
I had toast and peanut butter for breakfast but I couldn’t eat my shredded wheat as the kitchen had run out of milk! Anyway I was satiated by the two slices of wholemeal bread.
I have never exposed my willy to so many young ladies as on this occasion ( the Police reports are incorrect) , they had to check the catheter and urine colour of course, but I didn’t understand the laughter as they left?
So, if you are going to have brachy, I hope this comprehensive and descriptive account will be of interest, feel free to ask if you need any further information.
John
Edited by member 27 Oct 2018 at 14:08
| 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 |
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User
No you can’t insist. You sort of missed the boat - your legal right was to choose a different hospital for your first appointment but now you are under one, the CCG is not obliged to pay for treatment that they don’t offer. In practice, I think many CCGs would pay for brachy so hopefully it will not be an issue and your treatment will soon be underway. If you are refused, you can complain to the CCG. As far as I can remember, each CCG has to publish info about complaints received so it might be worth you checking their website to see whether there have been any complaints about brachy not being available.
There is an explanation of your legal rights on the NHS Choices website.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I can understand your wanting clarification on this rather than getting treatment delayed due to potential wrangling between CCG's. The situation normally arises when a patient wishes specialized individual treatment or non standard treatment where a special funding application has to be made. However, Brachytherapy is a well recognized treatment for PCa and hopefully your CCG would fund it . If nobody can give you an authoritative answer, you could ask your CCG what their policy on this is. If the answer is unfavorable, you could ask NHS England, who have a sort of overarching role over CCG's, if a negative decision could be overruled. We did have a similar situation with a forum member several years ago who wanted Robotic Prostatectomy but his CCG were unable to offer it but declined to fund it in another area. (This was when very few hospitals had the Da Vinci Robot). Unfortunately, I can't remember the outcome.
Edited by member 26 Jul 2018 at 00:39
| Reason: Not specified
Barry |
User
Thanks you both, I suspected that I "had missed the boat" when I read through the NHS web pages. It's a strange way of doing things, it assumes that patients will know what is wrong before having any investigations and which treatment they would want and where before diagnosis.
Oh well, at least I know. The trouble is, I don't want any delays now, my PSA is rising (10.5) and my urologist is advising treatment "shortly".
I might be pushed into treatment that is not my first choice. Its all jumping the gun anyway, I will have to wait and see what the CCG say. I am off now to see if I can find contact info, a short enquiry might provide an answer.
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
It happens but for a range of reasons. Brachy was John's first choice but in our city at the time, it was not offered to 'young men' due to concerns about long term risk of additional cancer. They have a different policy now.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I am in Worcestershire, and I have a reply from the CCG ( amazing how quick an email can be) they are telling me it has to be funded by NHS England not by them ! So now the request has gone to NHS England and I await a reply.
I think I had better start researching the appeals procedure and maybe a letter to my MP.
It seems we no longer have a "National" Health Service at all.
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
No we haven't had that for a long time. Take a look at what is happening in the South West where urology services prostate cancer diagnostic tests have been outsourced to community GPs. Or Swindon where all paediatric services have been sold to Virgin and very sick and disabled children haven't seen a paediatrician for over 18 months.
Anyway, you are on the case. Good luck.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
True, we now have a post code lottery based National Health Service.
Also, there are situations where private Hospitals cannot provide effective alternative treatment to match what is available in the best or more comprehensively able NHS Hospitals or these are few and far between. The patient can therefore miss out and perhaps is one of the reasons why some men seek more advanced and more quickly available treatment abroad. This is not a reflection on the hard working and competent NHS staff but rather due to insufficient funding and the way the NHS is organized and administered.
Barry |
User
Our NHS spending is considerably less than many other EU countries, i.e. the ones with no waiting lists, and the likes of Theresa May and Jeremy *unt keep saying they are putting more money in, around 3% p.a.
But they never mention that this is to cover a population increase of around 20%, all of whom are entitled to free treatment on the NHS. Many of whom have never paid a penny in.
It’s just down to money. And don’t get me started on doctor training places - thousands of kids with top A-levels apply to medical schools every year with limited places. Instead we rape other countries and steal their medics from them.
And if our indigenous students do qualify, as soon as they can they bugger off to Australia and the States where they are appreciated and can make loads more money!
Edited by member 26 Jul 2018 at 17:45
| Reason: Not specified
User
Your hospital leaflet says 'If you have been told you have, or may have, cancer there are several other alternatives that may be available including radiotherapy and brachytherapy. Your Consultant will discuss these options with you.'
As you have said as long as it doesn't delay the operation too much. Hopefully they're processing your request rapidly and it shouldn't be your problem.
If they only offer Open Surgery it seems a bit limited and you'd expect quite a few people to want to go out of area.
Where I live urology surgery is done in neighbouring Preston, whereas my local hospital specialises in heart surgery. The trend is towards specialist centres and from what I read that's a good thing.
Edited by member 27 Jul 2018 at 20:16
| Reason: Not specified
User
Well, I just had a nice lady from NHS England phone me, she confirms that there is "no problem" with funding the out of area treatment :-)
Now I just need the consultants to come back from holidays and get the ball rolling.
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
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Good news indeed. It does not always work for a patient but is certainly worth pushing for what you feel is your best option. I hope my case will be able to provide an example of this shortly, more in due course.
Barry |
User
Still waiting.....
I have a question, is hormone treatment always used with brachytherapy or is it depending on how good / bad things are?
I want to avoid a general anesthetic is it possible to have just the spinal block?
I know I can ask the specialist when I get an appointment but I like to be prepared.
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
My understanding, which is based on my own situation and is probably incomplete, is that HT is only used with brachytherapy as a way of reducing the prostate and tumour size sufficiently for brachytherapy to be viable. Even then you are only likely to be offered this if only a little too large for treatment. I was well oversize and although they didn't actually say they wouldn't do it I was strongly advised against it. The Oncologist on that occasion suggested that no young man (under 70!) should choose HT if there was a viable alternative! Because side effects I suppose......
Nick
User
Thanks Nick, I think I should avoid the HT then, my prostate is "only" 41 or 48cc ( I have two figures, one from ultrasound and one from MRI, MRI being the larger one and maybe the more accurate).
I am 75 and have had ED for several years now so any side effects can only make things a bit worse if at all :-)
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
Not sure that Nikko’s reply is always the case. Some oncos will always want their patient to have hormones with brachytherapy; I think it is quite unusual now to have brachy on its own.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Today I got a letter, 1st Class as well. I have an appointment to see someone in oncology on the 22nd Aug, things are moving at last.
I will make a list of things to ask.
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
Yesterday I had a urine flow test locally, last week I had an ECG at my GPs, all in preparation for the forthcoming Brachytherapy.
I still have to go for the pre op tests at the Royal Berkshire and then maybe a date for the op.
I am now very keen to get this operation done and maybe start getting over any side effects in time for next spring. I have missed my main holiday of two months touring EU this year so I am looking forward to March 2019 to be able to go off again.
Flow test result was fine, ECG was OK, Stage 1 AV but Doc said nothing to worry about, not unusual for a 75 year old.
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
Progress at last. Pre op on the 17th Oct and actual Brachytherapy op on 25th Oct. Should I be pleased? Well sort of, mixed feeling really!
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
Good news - fingers crossed everything moves smoothly now.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hope all goes well and to plan.
Ian
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User
Good luck,it sounds like you have an excellent plan and I am very interested in following your story.
User
I left the hospital after my pre-op appointment with a prescription for tamsulosin, antibiotics and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave
oven. I will discuss MoviPrep in detail later; for now suffice it to say that we
must never allow it to fall into the hands of terrorists.
Having read the MoviPrep instructions I spent the next few days sitting around being nervous.
Then, today, the day before my Brachytherapy, I began my preparation. In accordance
with my instructions, I stopped eating at 1600 hours and started MoviPrep at 1700 hours, this has been planned like a military operation, hence the time format.
You mix two packets of powder together in a one litre plastic jug, then you fill it with lukewarm water. (For
those unfamiliar with the metric system, a litre is about 32 gallons). Then you
have to drink the whole jug. This takes about an hour, because MoviPrep tastes -
and here I am being kind - like a mixture of goat spit and urinal cleanser, with
just a hint of lemon.
The instructions for MoviPrep, clearly written by somebody with a great sense of
humor, state that after you drink it, 'a loose, watery bowel movement may
result.'
This is kind of like saying that after you jump off your roof, you may
experience contact with the ground.
MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but, have
you ever seen a space-shuttle launch? This is pretty much the MoviPrep
experience, with you as the shuttle. There are times when you wish the toilet
had a seat belt. You spend several hours pretty much confined to the bathroom,
spurting violently. You eliminate everything. And then, when you figure you must
be totally empty, there is a final burst just like the end of a fireworks display, at which point,
as far as I can tell, your bowels travel into the future and start eliminating
food that you have not even eaten yet.
Tonight I will sleep in two pairs of my extra thick M&S cotton underpants with a towel under me. I took the old ground sheet off the bed, on reflection it was a bit over the top.
Finally, the downstairs toilet being occupied I was forced to make a run for the upstairs toilet this was during the finale spurt. I nearly made it, the stairs carpet should clean up with a good shampoo but my favourite corduroy trousers may need replacing.
The brachy op tomorrow should be a doddle after the MoviPrep!
John
Edited by member 24 Oct 2018 at 21:44
| 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
Ha ha ha ha - the best description of Moviprep I have ever read.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Sparrow
Might be a bit late now but my advice is "dab" don't wipe. My moviprep was for a colonoscopy, my first litre 13 hours before the procedure had no effect and at 2300 I went to bed the second litre was 0500 at 0600 the eruption started .A few minutes before the colonoscopy was due they cancelled the procedure.
Best wishes Chris
User
Yes, I have had it for a colonoscopy - drinking that stuff was my idea of hell so dealing with the other end seemed quite easy in comparison
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Well, I am now back home after my Brachytherapy on the 25th, all went as to be expected and I had 74 “seeds” through 25 needle holes. I was left with the catheter in place for about 3 hours as there was a bit of bleeding into my bladder but I narrowly avoided a transfusion, so had to pass some large clots, by large I mean they were the size of a Titanic ‘berg.
The boredom of hanging around was alleviated to some extent by walking around the other beds in other rooms ( I had the single bedded “Royal” room with TV and radio ) and enquiring as to how many seeds they had had. I won! The nearest to me was 68, a walk in the park to my 74. I believe I will save a fortune on torch batteries as the seeds warm up. The trip to the theatre was a bit disappointing, I was looking forward to a ride on a trolley with blue lights and two tone horn, but no, I had to walk, down the lift along the passageway up some stairs and round the corner, all in my dressing gown from Asda ( £14, A BARGAIN) and my stripey red supportive underpants. I also bought a pair of real leather slippers to complete the outfit (£12 from Asda). Then I had to take them all off and put them in a plastic bag, another £26 wasted, my old slippers and dressing gown would have done, I admit my old grey (they used to be white) M&S underpants were past it, so the new stripey underpants won’t be wasted. The shaving between my legs was expertly done but they forgot the aftershave lotion, but since I was under by that time I never knew who did it, they could have done my chest and back as well.
In keeping with my first class room I had fish and chips with mushy peas for tea, “Royal” food indeed, the food was very good considering it travelled 1 mile on a stainless trolley.
I had toast and peanut butter for breakfast but I couldn’t eat my shredded wheat as the kitchen had run out of milk! Anyway I was satiated by the two slices of wholemeal bread.
I have never exposed my willy to so many young ladies as on this occasion ( the Police reports are incorrect) , they had to check the catheter and urine colour of course, but I didn’t understand the laughter as they left?
So, if you are going to have brachy, I hope this comprehensive and descriptive account will be of interest, feel free to ask if you need any further information.
John
Edited by member 27 Oct 2018 at 14:08
| 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
Not having bracky but thanks for the ammusing post. It made me laugh as I sit recovering from hernia op yesterday.
Cheers
Bill
User
Many thanks Sparrow for your very amusing and entertaining description of your Brachytherapy experience.
I too had Permanent Seed Brachy nearly 2 yrs ago (only 55 seeds!) and fortunately my "clear out" was performed in hospital on the day of the procedure with the aid of a very large syringe!!
Good luck with the recovery
Regards Tom
User
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User
Well, I have survived a good three weeks, some bruising around my scrotum and willy, I say some, actually I was mainly a dark blue /purple with my willy a strange but appealing striped effect like a blue and red zebra. Unfortunately my wife was not impressed and forbade any attempt at rumpty tumpty in case of further injury. Not to worry, I doubt I would have been much good anyway.
The radiation seems to be working away in the background, I have little in the way of side effects, maybe it's a bit early yet and I have that pleasure to come? The only thing that is bothering me is bowel control, yes, yes, I do have a thing about bowels and movements etc., but the fact is I am going for a poo about four or five times a day and I am frightened to go to far in case there is no toilet!
I wrote my GP a nice letter explaining the problem and requesting some more Tamsulosin and something for the loose bowels, she ignored the bit in my letter about bowels and just gave me a repeat prescription for Tamsulosin.
I wrote " my bowels have been objecting to the radiation and have been voiding themselves without my direct control up to five times a day. As you know Doctor I am not one to complain without good cause, and I wonder if you could prescribe one of the 20 or so Antidiarrheals ( I had to look that one up) for me?" What is there to ignore there? Quite polite and to the point I thought.
Anyway, I have requested an urgent phone call from the duty doctor, when I will make my point about being ignored.
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
Best of luck obtaining the ‘stoppers’ John, or better still, some ‘slowers-down’! You may find a used Champagne cork efficacious in an emergency....
We do sometimes like a laugh in the face of adversity, don’t we?
Cheers, John.
User
Fybogel helps with controlling my bowel movements. (Yes, I know it contains fibre but it apparently works for loose bowels too by helping the excreta form properly!) My cancer centre prescribed it during radiotherapy and I have continued taking one sachet most days.
Ian
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User
Fibogel also works for me having had long term IBS for many years. It contains soluble fiber rather than non soluble fiber, so creats bulk and can work for both condtipation and diahria. Worth a try.
Cheers
Bill
User
The Doc. phoned she has prescribed "Loperamide" up to eight a day!! I doubt I will need that many.
OK on the fibre based remedies, I do have some Laxido that is soluble fibre based, I am a bit reluctant to give it a try though, I have had a rather trying time with laxatives recently!
Interestingly the Doc suggested Codeine as an alternative but they are addictive and no doubt I would finish up "mainlining" and "on the streets" so I opted for the non addictive alternative.
Another trip to the pharmacy tomorrow, I am becoming well known there, I must account for a sizeable part of their turnover.
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
We are off to Egypt next month for two weeks, so Loperamide will definitely be in our toilet bag in the case of ‘Gyppy Tummy”.
I think you are best to avoid opioids such as Codeine. Its stronger counterpart, Co-Codamol carries a warning not to use it for longer than five days.
I am on an oral Corticosteroid for a skin problem, and the long information leaflet warns of dependency, and I am to be weaned off it over the next three weeks. It also warns of suicidal tendencies and mood swings as side effects - rather frightening - no sign of the former, but Her Loveliness thinks I have become much more of a Grumpy Old Git than usual!
No change there then.
Cheers, John.
User
Enjoy Egypt John, my beloved will not go anywhere that she regards as "suspect" and that is most of the countries outside the EU!
I get eczema and use various ointments for it, strangely my wife thinks I am a grumpy old git as well! Must be the drugs.
I can confirm that the Loperamide is doing the trick, no more having to stand having a wee with my buttocks firmly clamped together! Not an easy job I assure you.
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
Thanks for your amusing posts John, they've made good reading
My John had 58 seeds put in in June 2014 but without the overnight stay and we came home by train and tube!!
We can't control the winds - but we can adjust our sails |
User
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
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
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
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
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
Originally Posted by: Online Community MemberHello 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
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
Originally Posted by: Online Community MemberHello 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.
John
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
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User
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
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 |