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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 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.


                          PSA of 2.1.


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 21 MONTHS.June 2018 PSA 0.39.


Next appointment 8th January 2019


 


I have reached 21 months after my brachytherapy operation and so far it seems to be going well.


 


Regards John.


                          


                         

Edited by member 26 Jun 2018 at 17:12  | Reason: Not specified

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
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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

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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