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Brachytherapy going forward

User
Posted 13 Dec 2016 at 16:30

Hi all,

My Prostate cancer was picked up in an unusual way as it was discovered when i decided to keep the 7.5 ton part of my driving licence at 70 and needed a private medical from my doctor to fill in the DVLA forms and he picked up a microscopic blood trace in my urine.

THE DIAGNOSIS.

                         GLEASON 3+4 =7,  adenocarcinoma of the prostate, MRI organ defined disease 5 of 20 cores positive of cancer.

                          PSA of 2.19.

Operation- at Mount Vernon=      Iodine-125 seed brachytherapy on September 2016.

 

So far I seem to be ok after a little tenderness while passing urine and the trips to the toilet during the the night.

I am taking tamsulosin x 400mg once a day after my last meal and amlodipine 10 mg once a day for blood pressure.

My first PSA   0.81 -31st Jan 2017.

Stopped Tamulosin 27th April 2017.

Second PSA 0.59 - 3rd May.

UPDATE  23th January 2018  PSA 0.44

UPDATE  at 23 MONTHS.June 2018 PSA 0.39.

UPDATE at 27 months December 24th 2018 PSA 0.22.

Next appointment 8th January 2019 /changed to 15th January.

UPDATE 15th January 2019 PSA 0.22 and blood tests extended to 12 months in January 2020.

UPDATE December 2019 PSA 0.18.

UPDATE 14th January 2020 Oncology meeting

UPDATE 25th September 2020 4 years since Brachytherapy at Mount Vernon.

UPDATE 25th November 2020. PSA 0.08

I have reached 4 years  after my brachytherapy operation and so far it seems to be going well,PSA blood tests extended to 12 months and I have  been handed over to the oncology nurse for future meetings at The Lister Hospital.My last appointment was short and sweet and it seems they are happy with my progress so far with a PSA drop from 0.44 to 0.39. Then on Jan 19th 2019 0.22.and 25th November 2020 0.08.Oncology moved to 3rd March 2021.

Latest test in December 19th 2019 0.18.

Latest November 25th 2020 PSA  0.08.

I am using Viagra to help with ED and find they help and take away a little of the mental pressure. I am finding some natural erections have returned on some mornings  from about march 2020 on but normal sex has not been on the cards for a while as wife is waiting for hip replacement .

After latest meeting at Lister Hospital on the 14th January 2020  Oncology seemed happy with my PSA drop to 0.18 my next meeting and blood test has been extended to November 2020.

At 25th September 2020 I have reached 4 years from my Brachytherapy operation in September 2016 and continuing to be well with no real problems apart from ED.

Update 8 December 2020.  I had a telephone conversation today with my Consultant/ Surgeon from Mount Vernon that performed my Brachytherapy operation in September 2016 and i have been signed off with PSA 0.08.

August 2021 Update.

I decided to get an early blood test this year as this is my 5th year from `Brachytherapy and was pleased to see another drop to 0.05.

 

 

Regards John.

                          

                         

Edited by member 13 Sep 2021 at 11:14  | Reason: update

User
Posted 30 Mar 2017 at 08:33

Hi J, I think in many European countries you can buy Viagra over the counter so you might be able to stock up while you are away? It would be a bit like bringing a toy donkey & a sombrero home from Spain in the 80s :-)

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

User
Posted 30 Mar 2017 at 20:12

Hi John,

I stopped taking Tamsulosin last August and haven't had any problems since.

I can for example go to a football match, have a couple of pints before kick off, stand and sing all through the first half, and then queue for ten minutes to get into the gent's at half time, and still come home with dry trousers.

:)

Dave  

User
Posted 01 Apr 2017 at 19:35

Apparently they have been putting radioactive seeds into tumours since 1917 so this is their centenary! After the war they did used to use open surgery to place the seeds but then they learned to use ultrasound in the late 1960s.

It seems the main reason it fell out of favour for a while was that the medical staff (unprotected ... different times I guess) were getting ill from radiation exposure.

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

User
Posted 17 Aug 2021 at 11:00

Great news 'John the Print', fantastic PSA numbers ,a truly amazing success story and an inspiration for all those early diagnosed who are considering LDR Brachytherapy treatment.                                                                            Thank you Lyn for your enquiry to my PCa current position. I am very happy to tell you all that my most recent PSA Blood Test romped in at 2.9! Yes romped in at 2.9 where it has been hovering for the past 2 years . Since my LDR Brachytherapy procedure in October 2010 my PSA has never dipped below what to me would have been a magical number of -1 but alas that was never to be.  My Consultant Professor comforts me and always reminds me that I still have an intact Prostate and adds that he has never never heard of a patient needing further treatment having reached the 10 years post treatment point.                                                                                         I would like to add for the benefit of newcomers, especially those still deliberating a treatment path, that I am now 77 years old and have played four full rounds of Golf carrying my Golf Clubs, in the last 8 days and on those days that I am not Golfing I ride my Mountain Bike for an hour each time. I am not claiming 'Superman' status but just trying to inspire other men as to how active a man can be after undergoing LDR Brachytherapy. I am one lucky b****** and did the right thing by insisting on regular PSA Blood Tests from 2005 which was four years prior to being diagnosed.

It has just stopped raining here in Chigwell so as they say "on yer bike" well in my case " on me bike" . Best wishes to all and once again "Well done" to John.

 

Michael aka Chigwell2010.                     

Edited by member 17 Aug 2021 at 11:04  | Reason: Not specified

User
Posted 13 Dec 2016 at 16:30

Hi all,

My Prostate cancer was picked up in an unusual way as it was discovered when i decided to keep the 7.5 ton part of my driving licence at 70 and needed a private medical from my doctor to fill in the DVLA forms and he picked up a microscopic blood trace in my urine.

THE DIAGNOSIS.

                         GLEASON 3+4 =7,  adenocarcinoma of the prostate, MRI organ defined disease 5 of 20 cores positive of cancer.

                          PSA of 2.19.

Operation- at Mount Vernon=      Iodine-125 seed brachytherapy on September 2016.

 

So far I seem to be ok after a little tenderness while passing urine and the trips to the toilet during the the night.

I am taking tamsulosin x 400mg once a day after my last meal and amlodipine 10 mg once a day for blood pressure.

My first PSA   0.81 -31st Jan 2017.

Stopped Tamulosin 27th April 2017.

Second PSA 0.59 - 3rd May.

UPDATE  23th January 2018  PSA 0.44

UPDATE  at 23 MONTHS.June 2018 PSA 0.39.

UPDATE at 27 months December 24th 2018 PSA 0.22.

Next appointment 8th January 2019 /changed to 15th January.

UPDATE 15th January 2019 PSA 0.22 and blood tests extended to 12 months in January 2020.

UPDATE December 2019 PSA 0.18.

UPDATE 14th January 2020 Oncology meeting

UPDATE 25th September 2020 4 years since Brachytherapy at Mount Vernon.

UPDATE 25th November 2020. PSA 0.08

I have reached 4 years  after my brachytherapy operation and so far it seems to be going well,PSA blood tests extended to 12 months and I have  been handed over to the oncology nurse for future meetings at The Lister Hospital.My last appointment was short and sweet and it seems they are happy with my progress so far with a PSA drop from 0.44 to 0.39. Then on Jan 19th 2019 0.22.and 25th November 2020 0.08.Oncology moved to 3rd March 2021.

Latest test in December 19th 2019 0.18.

Latest November 25th 2020 PSA  0.08.

I am using Viagra to help with ED and find they help and take away a little of the mental pressure. I am finding some natural erections have returned on some mornings  from about march 2020 on but normal sex has not been on the cards for a while as wife is waiting for hip replacement .

After latest meeting at Lister Hospital on the 14th January 2020  Oncology seemed happy with my PSA drop to 0.18 my next meeting and blood test has been extended to November 2020.

At 25th September 2020 I have reached 4 years from my Brachytherapy operation in September 2016 and continuing to be well with no real problems apart from ED.

Update 8 December 2020.  I had a telephone conversation today with my Consultant/ Surgeon from Mount Vernon that performed my Brachytherapy operation in September 2016 and i have been signed off with PSA 0.08.

August 2021 Update.

I decided to get an early blood test this year as this is my 5th year from `Brachytherapy and was pleased to see another drop to 0.05.

 

 

Regards John.

                          

                         

Edited by member 13 Sep 2021 at 11:14  | Reason: update

User
Posted 13 Dec 2016 at 20:25

Hi John,

Welcome to this site, you will find lots of fellow sufferers able to give useful advice.

My initial diagnosis way back in 2007 was a bit different from yours, and I wasn't a suitable candidate for seed brachytherapy.

However in 2014 I had salvage HDR brachytherapy at Mount Vernon, and found myself needing tamsulosin, I don't know whether the incontinence was a side effect of the brachytherapy or template biopsies?

Anyway the good news is that this year, about 15 months after treatment, I found myself able to cope without tamsulosin.

Take today for instance, my wife took me out Christmas shopping at 9:30 this morning, we stopped for coffee at 11:30 and I visited the gents.

Then we tackled an out of town shopping site and supermarket getting home at 4, by which time I needed the loo, however a year ago I would have been looking for the loo in every shop we went into.  So you may find that your bladder settles down in a year or two.

:)

Dave  

User
Posted 14 Dec 2016 at 08:52

Hello John and welcome from the wife of another John.

My husband had seed brachytherapy too, a couple of years ago now. If you click on my profile you can read the history of his journey so far.

His latest PSA remains unchanged at 0.2 so we are very pleased.

Best Wishes

Sandra

 

PS He was also in the print, having served his 7 year apprenticeship many years ago now (he's 76)

Edited by member 15 Dec 2016 at 11:54  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 15 Dec 2016 at 11:27

Hi John.

Thanks for you reply,like you i was in the print from the 1960s in Letterpress in ST Johns street in London(I'm 70 and retired in 2011.

I have looked at many blogs on line about the different forms this Prostate cancer runs in and at the time was offered the full removal operation but I had an old printer mate that had gone for the Brachytherapy treatment and it seemed that my levels where at a level that would be ok for it.Of course we have no guarantees of any of the future out come so look for some comfort from other people in the same boat,thanks for your reply and good luck in the future.

John

User
Posted 25 Jan 2017 at 15:41

The other thing you can do John is contact the consultant's secretary and explain the circumstances. We have always found the secretaries to be very helpful.

Might be worth thinking about

We can't control the winds - but we can adjust our sails
User
Posted 26 Jan 2017 at 13:38
Hello. My OH also had brachytherapy 2 years ago now. The consultant at the hospital always asks my OH to have his psa tested at the local gp surgery, 2 weeks before the appointment with him. Then my OH phones up for the results. Then we tell the consultant the results ourselves. I suppose different hospitals do it differently.
User
Posted 30 Jan 2017 at 10:31

Great news - that makes the extra wait for your appointment a little easier to bear.

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

User
Posted 23 Mar 2017 at 15:52


what a pain in the backside that is eh. You go there expecting them to have it all at their fingertips and then get met with that. I know that occasionally there is a hiccup but it is so annoying isn't it.

Enjoy your trips away in your motor home. We've not long been the proud owners of a very small, old motor home which we haven't tested out with camping in yet. That will be interesting. It is much smaller than we are used to

We can't control the winds - but we can adjust our sails
User
Posted 23 Mar 2017 at 16:04

Hi Johsan,

Thanks for you reply I must say it is annoying but i am probably in a better place than a lot of the others on here so we have decided to just get away to Europe in April as it has been six months of just waiting and it just causes stress as life seems to be on hold waiting for a ten minute appointment.I have my Daughter nearby to pickup post and as the doctor said just get away and enjoy life as you can always change the appointment and as long as the next PSA is still going down in May that well do me.

 

Regards John.

Edited by member 23 Mar 2017 at 16:06  | Reason: Not specified

User
Posted 30 Mar 2017 at 14:39

Yes you can buy them, over the counter too. Well, you can in the Canary Isles.

We actually took John's prescription box in to the chemist so we didn't need to worry about translating or anything. They weren't cheap.

I think they were about £20 for four 100mg tablets.

We can't control the winds - but we can adjust our sails
User
Posted 31 Mar 2017 at 12:27

John stopped the Tamsulosin ages ago but always carries a couple of tablets in his wallet.

Not sure they would be very useful in an emergency but it makes him feel safe!!

We can't control the winds - but we can adjust our sails
User
Posted 01 Apr 2017 at 17:02

Not actually sure John but a quick Google search says that originally used in the 70s but ti wasn't particularly successful then because of the difficulty placing them accurately. Then in the late 1980s early 90s TRUS and template biopsies made it possible to place them better.

Of course, that may be an American site and it may be different. I don't think they have been doing that long in this country though.

We can't control the winds - but we can adjust our sails
User
Posted 09 May 2017 at 13:25

Well done John. Long may it continue eh ?

We can't control the winds - but we can adjust our sails
User
Posted 28 Jun 2017 at 13:54

Thanks Johsan,

I wish you luck with the tests it's been a long year for us but even longer for you.

 

John.

User
Posted 28 Jun 2017 at 17:17

Great to hear the positive news, John. We are following similar paths, although my Brachytherapy was at the end of January 2017 and my next appointment at The Christie is set for October. Enjoy the travelling!

Good luck for next week, Johsan. My fingers are crossed for yourself and John!

Tom 

User
Posted 25 Sep 2017 at 18:40

Well my John is like you and feels a fraud too.

Good luck with the holiday and congratulations on reaching your year anniversary!! Well done

We can't control the winds - but we can adjust our sails
User
Posted 26 Sep 2017 at 08:04

Great news John - enjoy that extended holiday!

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

User
Posted 30 Jun 2018 at 13:00
Hi John ..so pleased to see your positive progress. Long may it continue

My next PSA measurement is due in about 2 weeks time and I am hoping that it will be lower than the previous one of 3.4 ug/l in April!

Hopefully, I am experiencing the mysterious "flare"?

My current side effects seem to be very similar to yours. 3 to 4 nightly visits to the loo but can always get back to sleep. Little blue pill needed but experiencing dry orgasms?

But looking to the future with confidence.

Regards Tom

User
Posted 01 Jul 2018 at 08:50

Hi Tom,

Thanks for your reply,sounds like you  are winning too long may it go on.I must say in general i am feeling a lot better over the last year and less tired and apart from returning from our trip to Spain early last December to sort out an elderly 98 year old mother in law but that is another story all is fine.

Keep in touch with your next results and good luck.

Regards John.

User
Posted 01 Jul 2018 at 09:16
Well done on your results John.

Best Wishes for future success in them

We can't control the winds - but we can adjust our sails
User
Posted 24 Dec 2018 at 12:52

Hi Guys & Girls,

I have just got my latest blood test PSA results and the my PSA is down to 0.22 from 0.39 in June 2018 not a bad Christmas present.I was a little worried about this result so got it in before Christmas as the last test had only dropped from 0.44 to 0.39 and i was worrying about a possible bump.

I can know relax until the oncology meeting on the 8th of January and have a few beers and wines.

Wishing all the members and families a peaceful Christmas & New Year and thanks for all your support.

John & Pat.

User
Posted 08 Jan 2019 at 07:18
Sounds more like your onco has left and patients are having to be fitted into other oncos' diaries.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2019 at 08:18

I had one meeting with a different consultant oncologist last year and one with a registrar before returning to my original consultant. On both occasions my usual consultant was in the clinic. Not sure why.

Hope appointment goes well next week.

Ian

 

Ido4

User
Posted 15 Jan 2019 at 15:24

Hi Lads and ladies & Brachy Pals,

Just back from my latest oncology meeting at the Lister Hospital and after a good meeting they have extended my tests to one year so fingers crossed that 2019 could be a better year for us.

Hoping you all have a better year too.

Regards John.

User
Posted 24 Jul 2019 at 09:12

Hi Andy,

Good luck with your operation and don't worry about the procedure I found a lot better than i was expecting and was in and out of Mount Vernon in two days.

John.

User
Posted 24 Jul 2019 at 22:23
Hi John, just because the oncologist only wants annual PSA tests, that doesn't necessarily mean that you can't ask your GP practice for a PSA test at the 6 month mark. I suppose the issue is, if there was a little rise the onco wouldn't want to see you to discuss it and would say wait until the planned annual test and see what that says. So getting the in between test could just cause you unnecessary anxiety.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2019 at 10:39

Hello John the Print, I am possibly 'Father of the LDR House' on this forum and like you. read the new posts every single day when in or out of the country. This posting is for you John and I want you to know my situation 10 years after diagnosis. Lyn the Matron is absolutely correct in advising you to seek mid year PSA Blood test results via your own G.P. which is exactly what I have been doing for almost 10 years now. I have just returned home from my GP practice with a print out of my blood test result taken on Monday 22nd July and can see that it is now 2.8 having been at 2.4 six months ago. I am due to see my much admired Consultant next week when we will discuss the need for further treatment or not. If you read my profile you will see my PSA history but in summary I am informing you that the lowest it has ever dipped to is 1.0 which is therefore my nadir. In my case the  Consultant is hinting at further treatment when my PSA reaches 3 but my input to this will be to suggest 5 which should take about another 3 years, fingers crossed on that, by which time I will be 78 years old. I play Golf 3 sometimes 4 times each week and have always kept a diligent eye on my weight which today comes in at 11st.11lbs.

John the Print and anyone come to that who would like any more information please feel free to contact me via prostatecancer.UK or by email direct.

John, you sound like a very nice man to me and I embrace you as a fellow LDR PCa survivor(so far.)

 

 

Edited by member 25 Jul 2019 at 10:41  | Reason: Spellling.

User
Posted 19 Dec 2019 at 09:42

Hi All,

I decided to get my Psa test in before Christmas and my Oncology meeting in January to give me a little peace of mind as it's been a long year since i went over to 12 monthly tests.

I am really pleased to say that my Psa has dropped again to 0.18 from 0.44 in December 2018 this makes it 39 months on Christmas day since my Brachytherapy operation at Mount Vernon.

The last two years have been very difficult for us with elderly parent needing 24/7 care with many callouts day and night so i did not have much time to think about the Brachytherapy and if i was winning or not and it was a relief when she passed on in November 10 days before her 100th birthday.

Wishing all our members the best of luck with their treatments in 2020 and wishing you all a Happy Christmas and New Year.

 

Regard John & Pat.

User
Posted 19 Dec 2019 at 11:42

Great news on your PSA. All the best for Christmas and 2020.

 

Ido4

User
Posted 19 Dec 2019 at 19:23
Good to hear of your ongoing progress John. I am due a PSA test this month and a consultant appointment in January 2020 so fingers crossed. Most of the side effects of my brachy have gone away ( done in October 2018 ) apart from ED but I had that before the brachy in a milder form. I now have "wet" orgasms having been dry for 12 months. I suppose I can't complain being 77 years old.

Still taking Tamsulosin but only every three days.

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

User
Posted 22 Oct 2020 at 14:12

Hi John,

Great news about your wife doing so well after her hip replacement.

Always an anxious time with PSA tests.  Hope all goes well for you and Pat going forward.

Ange x

User
Posted 23 Oct 2020 at 09:52

Hi John, glad to hear your wife is doing well and down to one stick! 
Best wishes for your PSA test, the test anxiety never leaves us unfortunately.

Ido4

User
Posted 23 Oct 2020 at 12:22

Hi John, my wife had 2 x hip replacements and is now nearly back to normal. My Brachy has worked well PSA well down. My motorhome hasn't been abroad this year at all, I usually go twice a year. My PSA test due Dec. has been postponed and a new date to be advised, I am not too worried, my PSA is so low I think moving to 12 months instead of 6 months won't be a problem.

ED is not so good, but it was not good before the Brachy, but now seems worse, the Caverject works but I have had a couple of "mishaps" resulting in a bit of bleeding/bruising so I am a bit wary now.

There was short period when the ED seemed to be much less of a problem but alas it didn't last long. My prostate has made heroic efforts to recover, it is now producing small amounts of thin ejaculate.

Roll on the Covid vaccine, I will be first in line!

John

Edited by member 23 Oct 2020 at 12:24  | Reason: Spelung

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

User
Posted 25 Nov 2020 at 16:02

Hi John, great PSA result. Hope you have a good time at Christmas.

 

Ido4

User
Posted 25 Nov 2020 at 16:13

Hi Idol,

Thank you mate it's been a heavy few years so hopefully we can all have a better Christmas with our loved ones if only for a few days.

Regards John.

User
Posted 26 Nov 2020 at 12:43

Hi Michael,

Thanks for your comments but it always gets a bit worrying when your 12 monthly test date comes around again and the lock down doesn't help too.

We don't have many Brachytherapy guys on here and it was difficult in 2016 to make a decision between Brachytherapy and Robotic removal so friends like you did help going forward as it was maybe a life and death decision and both the surgeons thought their option was the best.You say your numbers are stable but not dropping any more so has the doctors given you any options of further treatment yet.

I always found this site and it members so helpful in the early days so try to log in every day and give advice when i can but would never push anyone towards any of the options as they must make their own choice in the end.

Regards John.

User
Posted 26 Nov 2020 at 13:38
A stable PSA below the threshold for the person's age is an acceptable outcome for LDR as there is less damage to the prostate than with external beam RT - so happily there is no reason for Chigwell's doctors to be considering further treatment 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2020 at 14:20

I am running a new Prostate Brachytherapy UK support group this evening on Zoom, if anyone is interested.

Details are on the end of my profile. Please email me if you intend to come along.

User
Posted 27 Nov 2020 at 10:20
Whatto Matron, Whatto Johntheprint and Whatto all LDR Veterans,

Matron, you are correct there is less Radiation damage to surrounding areas with LDR but I must inform you that I was

suffering with rectal bleeding 4 years after treatment which according to the Consultant was undoubtedly caused by the

Radiation in 2010. An ARGON machine was employed to Zap the damaged blood vessels and happily there has never

been a repeat. I also inform you (with fingers tightly crossed) that my eminent Professor of Urology informed me in my

annual check up(Telephone due to Covid) that he had never known a LDR procedure to require further treatment once

past the 10 year point.

John, I have kept detailed records of every PSA test since I was first tested back in 10/2005 which amounts to a total of

39 tests in all and you can please accept from me that YES it does get less of a worry over the years but you must still

keep at least one eye on the ball. Like you I visit here every single day on the lookout for individuals that my experiences

may help in their own treatment decision making.

I salute all the guys and girls who continue to offer support, advice and comfort to those souls who are ever emerging

into the world of Prostate Cancer.

Michael (Chigwell 2010)

User
Posted 08 Dec 2020 at 17:02

Great news John, really pleased for you.

Best wishes to all going through treatments for PCa.  

Angex 

User
Posted 08 Dec 2020 at 18:27
This is super news. Our onco says that in the future, people will look back and be horrified that men used to have their prostate removed surgically. Every successful brachy is a step towards kinder less life-changing treatment in the future
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Dec 2020 at 09:41

Fantastic news John. Very pleased for you.

 

Ido4

User
Posted 09 Dec 2020 at 22:04

Ah sorry, I misremembered and thought you'd had HDR.

User
Posted 16 Aug 2021 at 16:13

Fantastic result.

Dave

User
Posted 16 Aug 2021 at 17:28

Brilliant result John. 

Ido4

User
Posted 16 Aug 2021 at 21:27

That's brilliant, almost unbelievably low for someone who still has a prostate, but I do know someone else who had brachy, and now has prostatectomy levels of PSA many years later in spite of still having a prostate.

User
Posted 16 Aug 2021 at 22:29

Great result John.

Ange x

User
Posted 17 Aug 2021 at 08:25
Brilliant news for you John. How is your wife - fully recovered?

I hope Chigwell will pop in and give an update on how he is doing as well.

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

Show Most Thanked Posts
User
Posted 13 Dec 2016 at 20:25

Hi John,

Welcome to this site, you will find lots of fellow sufferers able to give useful advice.

My initial diagnosis way back in 2007 was a bit different from yours, and I wasn't a suitable candidate for seed brachytherapy.

However in 2014 I had salvage HDR brachytherapy at Mount Vernon, and found myself needing tamsulosin, I don't know whether the incontinence was a side effect of the brachytherapy or template biopsies?

Anyway the good news is that this year, about 15 months after treatment, I found myself able to cope without tamsulosin.

Take today for instance, my wife took me out Christmas shopping at 9:30 this morning, we stopped for coffee at 11:30 and I visited the gents.

Then we tackled an out of town shopping site and supermarket getting home at 4, by which time I needed the loo, however a year ago I would have been looking for the loo in every shop we went into.  So you may find that your bladder settles down in a year or two.

:)

Dave  

User
Posted 14 Dec 2016 at 08:52

Hello John and welcome from the wife of another John.

My husband had seed brachytherapy too, a couple of years ago now. If you click on my profile you can read the history of his journey so far.

His latest PSA remains unchanged at 0.2 so we are very pleased.

Best Wishes

Sandra

 

PS He was also in the print, having served his 7 year apprenticeship many years ago now (he's 76)

Edited by member 15 Dec 2016 at 11:54  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 15 Dec 2016 at 11:14

Thanks Dave,

It's early days for me yet but i will keep taking the Tamsulosin as it seems to help the problem,i think the hardest bit is waiting for the first PSA result but thats only a few weeks away.

It is a bit easier to speak to some one on line like yourself than the family as you don't wish to worry them to much,thanks for your reply and good luck.

John.

User
Posted 15 Dec 2016 at 11:27

Hi John.

Thanks for you reply,like you i was in the print from the 1960s in Letterpress in ST Johns street in London(I'm 70 and retired in 2011.

I have looked at many blogs on line about the different forms this Prostate cancer runs in and at the time was offered the full removal operation but I had an old printer mate that had gone for the Brachytherapy treatment and it seemed that my levels where at a level that would be ok for it.Of course we have no guarantees of any of the future out come so look for some comfort from other people in the same boat,thanks for your reply and good luck in the future.

John

User
Posted 25 Jan 2017 at 11:48

Hi all.

I was looking forward to my first PSA result post operation of four months ago and received the automatic phone call yesterday to confirm the appointment on the 31st of January only to have it canceled by a Macmillan nurse this morning.

I was not very happy about this as i have booked a week away following it so asked if i could have the Psa results from my Clinical nurse specialist on or about that date.I am not sure if the Specialist will allow this or not,has any one on here had a similar problem or do i have to sweat it out a bit longer.

 

John.

User
Posted 25 Jan 2017 at 13:11

Hello again John.

If I were you I would approach my GP and ask him or her to do the PSA, explaining the reasons.

At our surgery they have always been accommodating about the three monthly tests, even though strictly speaking my John
isn't really entitled to them as he is now on annual review. It puts our minds at rest however so we just request one now from the receptionist. She just print the form off and John takes it for his testing.

It probably won't work like that initially for you as they have to be used to you asking for one but do try your GP first. You don't want to go away with an unresolved PSA hanging over you

 

PS edited to say I've just realised you have had the test and just want the result.  Keep pushing for it. IT isn't acceptable that you have an appointment cancelled within a few hours of one being confirmed

Edited by member 25 Jan 2017 at 13:13  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2017 at 14:27

Hi Johsan ,

Thanks for your reply and yes i had the blood test for the PSA a couple of weeks ago and waiting does cause a bit of stress as i am in the early days of prostate cancer and a result what ever way it goes just helps a little with the road ahead.

I have only spoken to my oncology nurse once since my diaganosis and will ring her when she comes back on duty on Monday as i don't think telling me the result before i see the Specialist as he should understand the extra stress  on me.

 

Regards John.

User
Posted 25 Jan 2017 at 15:41

The other thing you can do John is contact the consultant's secretary and explain the circumstances. We have always found the secretaries to be very helpful.

Might be worth thinking about

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2017 at 17:00

That sounds a good idea Johsan i will give it a try.

John.

User
Posted 26 Jan 2017 at 13:38
Hello. My OH also had brachytherapy 2 years ago now. The consultant at the hospital always asks my OH to have his psa tested at the local gp surgery, 2 weeks before the appointment with him. Then my OH phones up for the results. Then we tell the consultant the results ourselves. I suppose different hospitals do it differently.
User
Posted 30 Jan 2017 at 10:18

Hi all,

I spoke to my oncology nurse at the Hospital to see if i could get the results of my first PSA blood test post OPP as my appointment with the  Specialist had been cancelled last week.

My original PSA before the operation was PSA 2.19 and has know dropped to PSA 0.81 so the journey has started.Thanks to everybody that helped with my initial panic.

 

John.

 

 

User
Posted 30 Jan 2017 at 10:31

Great news - that makes the extra wait for your appointment a little easier to bear.

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

User
Posted 23 Mar 2017 at 14:00

Hi All

As my last appointment was canceled  i decided to ask my oncology nurse for the results that where all good and reduced a bit.So I turned up for my new appointment  yesterday at the hospital and found the staff at oncology a little confused and started to ask questions as to when the procedure was done and what it was etc.

So after explaining the last six months and Brachytherapy operation to them and the canceled first Psa results meeting I was asked to wait and they would check with the consultant doctor that was on my letter also being the same lady that examined me with Dre I think thats the right term.So I was called in by the Doctor who was pleased to see us but had no files or notes on me apart from what i told her and in her opinion i should be seeing the consultant that performed the operation. 

I had gone in with a list of questions and she helped with a couple of them but thought it better to see the consultant that performed the operation and of course i felt a little miffed if you can call it that and as  i seem to remember when i was taken in for my Brachytherapy in the other London hospital they had no notes on me and it became quite a joke with the staff coming into my side ward in the lady's ward and  asking for them and who i was.

I must say the Dr was very helpful and gave me a new PSA blood test appointment for May and another appointment to see her in September 12 months from the Operation unless my Consultant gets on the ball again, strange old day, but she did say i can travel abroad in my motorhome for a few months so off we go.

 

Regards to all John.

 

 

Edited by member 23 Mar 2017 at 14:04  | Reason: Not specified

User
Posted 23 Mar 2017 at 15:52


what a pain in the backside that is eh. You go there expecting them to have it all at their fingertips and then get met with that. I know that occasionally there is a hiccup but it is so annoying isn't it.

Enjoy your trips away in your motor home. We've not long been the proud owners of a very small, old motor home which we haven't tested out with camping in yet. That will be interesting. It is much smaller than we are used to

We can't control the winds - but we can adjust our sails
User
Posted 23 Mar 2017 at 16:04

Hi Johsan,

Thanks for you reply I must say it is annoying but i am probably in a better place than a lot of the others on here so we have decided to just get away to Europe in April as it has been six months of just waiting and it just causes stress as life seems to be on hold waiting for a ten minute appointment.I have my Daughter nearby to pickup post and as the doctor said just get away and enjoy life as you can always change the appointment and as long as the next PSA is still going down in May that well do me.

 

Regards John.

Edited by member 23 Mar 2017 at 16:06  | Reason: Not specified

User
Posted 30 Mar 2017 at 05:45

Hi All

I have decided to try to get off the Tamsulosin from last Monday and so far it's going well but not sure i should tell the doctor at my pill review next week as i don't want him to cancel them yet as i am thinking of traveling abroad soon and may need some while away, I am just on six months since the Brachytherapy and most of it is going well apart from the ED but with only 4 blue pills to practice with a month it may take a little longer and i expect my age and the wine does not help.I am hoping my next PSA in May will continue to drop and maybe my consultant may see me this time after the cancelations and hospital mix ups.

 

Have a Good one Regards John.

User
Posted 30 Mar 2017 at 08:33

Hi J, I think in many European countries you can buy Viagra over the counter so you might be able to stock up while you are away? It would be a bit like bringing a toy donkey & a sombrero home from Spain in the 80s :-)

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

User
Posted 30 Mar 2017 at 14:39

Yes you can buy them, over the counter too. Well, you can in the Canary Isles.

We actually took John's prescription box in to the chemist so we didn't need to worry about translating or anything. They weren't cheap.

I think they were about £20 for four 100mg tablets.

We can't control the winds - but we can adjust our sails
User
Posted 30 Mar 2017 at 20:12

Hi John,

I stopped taking Tamsulosin last August and haven't had any problems since.

I can for example go to a football match, have a couple of pints before kick off, stand and sing all through the first half, and then queue for ten minutes to get into the gent's at half time, and still come home with dry trousers.

:)

Dave  

User
Posted 31 Mar 2017 at 09:49

Thanks Lyn Jonsan Dave.

This is only the forth day of not taking the Tam and the waterworks seem OK and I only got up three times in the night but that is much the same as before the operation,The main reason to stop taking them was I was hoping to take out some of the side affects if any but not sure what they are apart from what the leaflet in the box says and of course my mind will think i have a few of them apart from the permanent erection one.I must say I do feel less tired today but that could be because of the less wine last night and better sleep so the next pill I would like to reduce is the blood pressure tablet but may have to discuss that with the doctor next week.Just the blue pills to work on next maybe the doctor will up the dose if i as him nicely.Thanks for all the replies it does keep the spirits up.

 

Regards John.

User
Posted 31 Mar 2017 at 12:27

John stopped the Tamsulosin ages ago but always carries a couple of tablets in his wallet.

Not sure they would be very useful in an emergency but it makes him feel safe!!

We can't control the winds - but we can adjust our sails
User
Posted 01 Apr 2017 at 15:45

Hi Jonsan,

I think I will do the same and save some up to travel with in Europe just in case, It's nearly a week with out them so fingers crossed we may be winning.

Have you any idea how long they have been doing Brachytherapy as i think i read some where they used to do the early operations by open surgery.

 

John.

User
Posted 01 Apr 2017 at 17:02

Not actually sure John but a quick Google search says that originally used in the 70s but ti wasn't particularly successful then because of the difficulty placing them accurately. Then in the late 1980s early 90s TRUS and template biopsies made it possible to place them better.

Of course, that may be an American site and it may be different. I don't think they have been doing that long in this country though.

We can't control the winds - but we can adjust our sails
User
Posted 01 Apr 2017 at 19:35

Apparently they have been putting radioactive seeds into tumours since 1917 so this is their centenary! After the war they did used to use open surgery to place the seeds but then they learned to use ultrasound in the late 1960s.

It seems the main reason it fell out of favour for a while was that the medical staff (unprotected ... different times I guess) were getting ill from radiation exposure.

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

User
Posted 09 May 2017 at 10:25

Hi

I have just got my latest Psa results from my oncology nurse as i did not want to wait for my next appointment at the end of June and it's down again to 0.59 from the Psa 2.19 at my operation in September.

I also stopped taking the Tamulosin on the 27 of April and so far have no problems passing water so lets hope my next appointment in June is not canceled again.

 

John

User
Posted 09 May 2017 at 13:25

Well done John. Long may it continue eh ?

We can't control the winds - but we can adjust our sails
User
Posted 09 May 2017 at 15:23

Thanks Johsan

 

Lets hope it keeps going down.

Regards John.

User
Posted 09 May 2017 at 15:31

Great news John

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

User
Posted 09 May 2017 at 15:35

Thanks Lyn,

Just the specialist to see at the end of June and then I can plan a holiday.

Regards John,

User
Posted 28 Jun 2017 at 11:10

Hi all,

Just a small up date after my latest appointment with the hospital team,i was a little disappointed that i have still not seen my Specialist but it does say that you may be seen by any member of the Consultants team and i did get some of my questions answered about my last MRI and CAT checkup scans but nothing has been written up about them so i can assume that all was well with the results, I also told them i had taken myself off of the Tamulosan in April and they seemed fine about it.

But the good news is my next PSA blood test will be in January 2018 so we will try to get some traveling done before then and maybe try to put the last year behind us.

Regards John.

 

Edited by member 28 Jun 2017 at 14:11  | Reason: Not specified

User
Posted 28 Jun 2017 at 13:34

Good news John.
We have been fairly lucky in that we usually see John's consultant,with only one exception so far.
John had his PSA taken yesterday ready for his annual checkup next week so fingers crossed for us to.

We can't control the winds - but we can adjust our sails
User
Posted 28 Jun 2017 at 13:54

Thanks Johsan,

I wish you luck with the tests it's been a long year for us but even longer for you.

 

John.

User
Posted 28 Jun 2017 at 17:17

Great to hear the positive news, John. We are following similar paths, although my Brachytherapy was at the end of January 2017 and my next appointment at The Christie is set for October. Enjoy the travelling!

Good luck for next week, Johsan. My fingers are crossed for yourself and John!

Tom 

User
Posted 29 Jun 2017 at 09:52

Hi Tom,

Thanks for your reply it's nice to hear about other people  on the Brachytherapy roads and i am reasonably happy with results but still not over happy with not seeing my Specialist again to get all my questions answered after the last one being canceled, and being sent to the original Doctor that performed  the first biopsy. She had no notes on me so turned out to be a wasted appointment apart from a new date for the last blood test.

At my latest appointment I saw one of the team i had not seen before and of course asked about my post operation MRI & PET scan and where they ok and had any seeds been lost etc and her reply was i have nothing in your notes so it must be ok and they are only taken for their own review, she could not tell me how many seeds i had and just about gave me my TNM staging.

As you talk about in your blog about passing seed it does make me think  if you loose any seeds early does that mean that one or more of the cancers is not getting the full dose of treatment.

It maybe me but am i trying to over think the the whole job or should i try to get more information.Ok my PSA is dropping and thats good any ideas or should i just trust them unconditionally.

 

John. 

 

 

User
Posted 07 Jul 2017 at 17:24

Hi John … apologies for the slow response.

You certainly do seem to be struggling to get answers to your questions from the relevant staff. I’m fortunate in being treated at The Christie in Manchester, a leading cancer hospital. However, I too have to ask for information, it’s not automatically volunteered!

I believe it’s important to know how many seeds were implanted and that they all stay in place and not leave or wander to somewhere else in your body. As you suggest, loss of a seed could leave that particular area of the prostate exposed?

I too find it easy to worry about the future, but my wonderful wife soon  tells me to be positive and of course she is 100% correct.

Compared with some of the cases we read about on this amazing forum, we are very lucky. Our prospects for the future are very encouraging.

Regards Tom         

User
Posted 08 Jul 2017 at 09:24

Hi Tom,

You are so right we are a lot luckier than other guys on here and i think I must get the information as and when i can but it does help that my next blood test is in January so we can get away from the three monthly checks.

I feel that as i am not seeing the original specialist maybe he thinks i am winning so has passed me down to one of his team as a less serious case, but i would still like all the information if only to tick off some of my own worries.

Keep well Tom Regards John.

User
Posted 25 Sep 2017 at 11:27

Hi all,

Just a little catch up with you all and hoping you are still fighting the good fight.

I have reached my 12 months today from operation and so far all sees pretty good, ED could be better but i keep takin the pills and hope things  will improve with time but age may be against me at 71,

We are booked on the tunnel next week to tour Europe for a few months and try to get away from the over thinking of the situation.

I will still be online with any advice i can give on Brachytherapy If very little as i feel a bit of a fraud with my easy run compared what some of you are going through.

 

Regards John.

User
Posted 25 Sep 2017 at 18:40

Well my John is like you and feels a fraud too.

Good luck with the holiday and congratulations on reaching your year anniversary!! Well done

We can't control the winds - but we can adjust our sails
User
Posted 26 Sep 2017 at 07:50

Hi Johsan,

Thanks for that hope you and John are doing well too.

John.

User
Posted 26 Sep 2017 at 08:04

Great news John - enjoy that extended holiday!

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

User
Posted 26 Sep 2017 at 08:05

We are John. Like you to some extent age (probably) has affected ED but then John is 77 soon so only to be expected.

Other than that, he takes no Tamsulosin and hasn't for a couple of years I think it is now, and doesn't appear to have any problems.

PSA still 0.2 so that's good

We are grateful for what we have

Keep safe, keep well

We can't control the winds - but we can adjust our sails
User
Posted 26 Sep 2017 at 10:45

Hi Lynn,

 

Thanks for reply wishing you both well,

 

John.

User
Posted 23 Jan 2018 at 12:18

Hi Guys,

I rang my Macmillan nurse for my latest PSA results today after a six months gap and it has dropped a little to 0.44 and she said it looked good.

I am pleased but don't know how fast it should drop and over what time span, has anybody that had brachytherapy have any comparisons or ideas on time scales etc.

Regards John.

Edited by member 23 Jan 2018 at 12:20  | Reason: Not specified

User
Posted 25 May 2018 at 11:33

Hi All,

Just a small update on my 20th month since  Brachytherapy with only a month to the next 6 monthly blood test and oncology meeting. I must say i am still feeling a little nervous about the results and still feel a little anxious about the next PSA level result and I am trying to think of questions i should ask at the meeting as a lot of questions were not answered at previous appointments when i saw other members of the team.

I seem to have been down graded to an Oncology nurse for the next meet so maybe that means they are happy with the PSA drop so far but only time will tell.As to general health i am getting a better nights sleep but can still get up two to three times a night but that used to happen long before my operation not with any urgency but if i wake up i tend to go. As for ED i think we are winning  with help from the little blue pill but i think age must come into it at 72 next month.

 

John.

 

User
Posted 26 Jun 2018 at 09:53

Hi all

I was 21 months on from my brachytherapy operation yesterday and today i have my six monthly meeting with the Oncology team at Lister hospital and i must say a little nervous about the results but also what questions i should ask the team apart from are we winning.

It seems that i am meeting a member of the team and not the Specialist,should i take this as meaning i am on the mend, lower risk or he has more important people to see.

I will report in later on the results.

 

John.

User
Posted 28 Jun 2018 at 09:56

Hi PC Family,

Good news from my Oncology nurse my PSA is down to 0.39 and she seems to thinks we are going the right way and has extended my next blood test to January 2019 so maybe i can relax a little.Still have none of the old questions answered so maybe i must concentrate on the future.As for the rest of the body,Bowels ok and regular,waterworks not gushing but not slow but still getting up two to three times a night but with no great urgency, just going helps me to go back to sleep.ED not so bad some erections in mornings but still using the blue pill that are prescribed at four a month for how long i have no idea at the moment.

 

Good luck Pc buddys,

 

John.

User
Posted 28 Jun 2018 at 13:29

That all sounds very positive John. Long may it continue like that.

enjoy the summer.

Ido4

Ido4

User
Posted 28 Jun 2018 at 14:02

Hi Ido4,

Thanks for that I wish you well with your treatment.

 

John.

User
Posted 30 Jun 2018 at 13:00
Hi John ..so pleased to see your positive progress. Long may it continue

My next PSA measurement is due in about 2 weeks time and I am hoping that it will be lower than the previous one of 3.4 ug/l in April!

Hopefully, I am experiencing the mysterious "flare"?

My current side effects seem to be very similar to yours. 3 to 4 nightly visits to the loo but can always get back to sleep. Little blue pill needed but experiencing dry orgasms?

But looking to the future with confidence.

Regards Tom

 
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