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LDR Brachytherapy after HT

User
Posted 19 Jan 2017 at 13:22

This is my 1st post so hope everything goes OK.

In June 2015, I was told that my brother (14 months younger than me) had recently been found to have ADVANCED LOCALISED Pc (G9(5+4 I think))

So I went for a check up and in Aug 2015 I was diagnosed with INTERMEDIATE LOCALISED Pc G7(4+3); PSA approx 10 and chose to go on ACTIVE SURVEILANCE. This gave me time to accustom myself to the enormity of what had just happened!

Having reached my early 70’s without any serious medical problems , I had got used to a feeling of near immortality. But it obviously could not last!!! I was in denial until a nurse at The Christie Hospital convinced me that I had CANCER!!

PROSTATE CANCER certainly can run in families!!

I felt well; no obvious symptoms (apart from more frequent nightly visits to the toilet).   

My family eventually convinced me that I should be more proactive.

So in March 2016, I chose to follow the LDR BRACHYTHERAPY route

23/9/2016 : Christies for Pre-op

30/9/2016 : Christies for Volume Study under general anaesthetic. Prostate found to be too large (70cc). Hormone therapy was required to shrink the prostate to about 40cc.

CYPROTERONE tablets (100 mg) were prescribed for about 3 weeks

ZOLADEX (3.6mg) 4 injections spaced 4 weeks apart (last and 4th one given 18th Jan2017)

What an experience HT has been – more like HOT and COLD treatment! My hands have never been so cold! I’ve certainly had more HOT FLUSHES than HOT DINNERS! I’m so glad I had to experience this during the winter!!

Ladies I salute you. I know just what you have to go through now!

6/1/2017 : Christies for 2nd Pre-op

17/1/2017 : Christies for 2nd Volume Study – given the go-ahead for full LDR BRACHYTHERAPY implant  on  31st January 2017. Prostate must have shrunk sufficiently but I don’t have details yet.

Will keep post going as and when required

User
Posted 06 Feb 2017 at 12:32

Hello again.

My implant procedure went ahead as planned on 31st January 2017 and this post will describe my experience of that day (Day 0) and subsequent recovery over the next 5 days.

Tuesday (31/1/2017) (D+0):  Implants of 55 Iodine 125 seeds into my 40cc prostate (HT over previous months had reduced the volume from 70cc!) completed successfully and was allowed home after producing the required volume of wee.

At home, drank plenty of fluids, as advised, but it quickly became obvious that I could not wee!

Phoned The Christie and was advised to walk round the house but after about 2 hrs of this, still no joy, so phoned the hospital again. They immediately instructed me to return for catheterisation.

About midnight was catheterised and was quickly relieved of about 1 litre of urine! What a relief!!

Wednesday 1st Feb 2017 (D+1): Recovering in hospital all day. 1st Tamsulosin and Antibiotics taken.

Thursday 2nd Feb 2017 (D+2): Catheter removed about 6:30am and 15 min later produce about 5 ml of “red wine”! This was followed by 30ml (8am); 30ml (10am); 25ml (11am); 35ml (1pm). I thought to myself “This is hard work”. Then one of the nurses suggested my wife and I go for a walk outside in the lovely gardens. This seemed to do the trick because when I got back, “joy of joys” I managed 150ml (3pm) followed by another 150ml (4:30pm).

I was free at last and discharged at 5pm

Great to be home again; but started to have difficulty weeing again! Usually started with a bloody fluid but one bonus was my first poo!! .Worried that far more fluids were entering my body than leaving it! I was reluctant to drink too much as advised. Thoughts of a repeat of Tuesday night began to alarm me.

Friday 3rd Feb 2017 (D+3): Again very difficult to wee normally – not very productive. Took following tablets about 4am: 1xTamsulosin; 2xIbuprofen and 1xParacetamol

7am: had breakfast (cereals; toast and fruit tea) and went back to bed. I was absolutely exhausted from restless night.

9:30am: got up and had a more productive wee, so slightly relieved and enjoyed a lovely shower.

10:30 am: had a very productive wee (about 100ml). Can I see the light at the end of the tunnel at last?

11am: felt well enough to go out shopping

Afternoon:  More frequent urges to wee and these were very short and bloody to start with.

Throughout the night about 8 visits to the loo for short weeing sessions were necessary!

Saturday 4th Feb 2017 (D+4):  Up about 7:30am. Took all appropriate tablets with breakfast, but not long afterwards felt a bit lightheaded so went back to bed for about an hour.

10am: feeling much better now. Got up had a shower and a cup of tea.

11:30am: Walked to the local shop for a paper

Afternoon and evening uneventful - weeing reasonably effectively but invariably preceded by small bloody discharge. Had second poo since leaving the hospital

Sunday 5th Feb 2017 (D+5): Early hours frequent visits to the loo. Difficult to start with and not very productive.

6am: got up had my tablets and breakfast. Went to the loo managed a “wee” wee and 3rd poo

Mid morning: more productive “red free” weeing now. Dare I hope that this is “the end of the beginning”?

I hope my experience will be of help to others contemplating the Brachytherapy route and will add to this as and when I feel it would be usefull

My follow up appointment at The Christie hospital is set for April 28th 2017  

User
Posted 19 Jan 2017 at 16:00

Many thanks Johsan for your good wishes.

I have already read your posts on this subject (and printed it off for my wife) and found it extremely helpful in deciding what course to take and what side effects to expect post op. 

It's a tricky balance at our age (early 70's).

There is a lot of statistical evidence to suggest that we could easily die with it rather than from it?!

However, I did not want to hang around to find out!

Roll on 31st Jan 2017! 

User
Posted 07 Feb 2017 at 10:11
Hi tp

I read with interest your post. My brother just been dx and we have had to make decisions. Please visit my profile. Although our journeys are different I find your post very informative as part of the whole picture for people to gain real life latest experience. Do you think you could cut and paste ongoing diary into your profile? I actually need to update my profile with my brothers data. May I ask how is your brother and what treatment path is he on ?

Do you think you could have been dealt with any differently re. Retention? Is this common? If you had been living on your own do people still get realised ASAP ???

I do keep a basic diary.. as easy to forget info. I had da vinci and was dry practically immediately. . My visit to a & e was required due to excruciating pain / spasms not retention.

Best wishes

Gordon

User
Posted 04 Apr 2017 at 12:17

Many thanks Lola for your good wishes. Please accept my very best wishes for yourself and your husband, Paco
Tom

User
Posted 08 May 2017 at 14:35

Hello to all again. As promised here is the latest update.

28th April 2017 (approx D + 3 months) – 1st follow up appointment at The Christie :

Pleased with progress:

Scan shows all 55 radioactive seeds present and correct.

Bloods taken: PSA 0.92.

Advised to keep taking Tamsulosin until next appointment in 6 months time.

Hot flushes showed signs of diminishing in frequency and severity from the middle of April 2017. Thankfully, as of now (8th May), I am now completely free of this side effect!!

I feel that the weeing situation is improving with time. Presumably as the physical and radioactive effects of the Brachytherapy procedure subside.

I regularly read other posts on this excellent forum and am constantly reminded how lucky I currently appear to be. I was in my early 70’s before I was diagnosed, but I can hope for a treatment which will probably allow me to eventually die WITH this horrible disease and not from it!!

I am constantly saddened by the many far more serious cases that I read about, especially when it involves younger men, and my heart and good wishes go out to all those affected, both patients and family members. Thank you for the strength and fortitude you all demonstrate. You are an inspiration.

User
Posted 02 Aug 2017 at 14:08

Many thanks, John. Pleased you are progressing OK. It is very useful to contrast and compare experiences with others undergoing the same treatment paths.
Regards Tom

User
Posted 06 Nov 2017 at 16:14

November 6th 2017

Now approximately 9 months since my Brachytherapy operation and can report that my latest PSA is 1.3 and that The Christie Hospital have moved me onto 6 monthly monitoring appointments.

I have to request a PSA test from my GP about 2 weeks before each appointment so am now effectively back on Active Surveillance.

Until recently, my large prostate (70cc) would have ruled out Brachytherapy as a treatment option but this is no longer the case if HT is first used to shrink it.

Still taking Tamsulosin but trying just 1 tablet every 3 days. Will probably stop altogether at the end of the week and see how I get on?!

Regular night time trips to the loo still a bit of a problem, but showing signs of improving.

ED issues are slowly improving with the aid of Viagra!!

Mean while, can I take the opportunity to wish all my fellow sufferers all the very best for the future.

To those families whose loved ones sadly do not see the light at the end of the tunnel, my sincerest condolences.

Tom        

       

User
Posted 24 Apr 2018 at 16:19

Many thanks Ian for your best wishes.
You certainly have been on a bigger roller coaster ride than I have and at a younger age too!!
May your good news continue for many years to come
Best Wishes, Tom

User
Posted 24 Oct 2018 at 12:10

Hi John .. good to hear from you again and glad to see you are in "good health"!

As you indicate there are not many of us LDR patients on the forum therefore it is important that we keep our threads going.

It was thanks to yours and Johsans husband's latest PSA results of <1 that I realised that my treatment may not have been 100% effective.

We will just have to wait and see what happens.

Will update again in Jan 2019

Meanwhile, hope you have a great Christmas

Regards Tom     

User
Posted 01 Dec 2018 at 15:10

Many thanks, John for your best wishes for the future. As you say better to find that the problem is confined to the prostate. Just have to be patient and maybe wait until the new year before further investigation can ascertain whether the suspect area is benign or not!

Good luck with your next check up and best wishes for Christmas

ps. Apologies for the delay but I'd like to thank all fellow members for their messages of condolences following the death of my dear younger brother.

I still cannot believe he's gone!

Regards Tom    

User
Posted 11 Apr 2021 at 13:37
Hi John

Many thanks for your kind reply... it's very comforting and helps me to mainrain a positve attitude.

Yes we both had the Brachytherapy procedure at roughly the same time and your successful outcome (PSA down to 1) was an early indication for me that all was not well in my case!

Just started on Bicalutamide tablets and will have another hospital appointment in 2 weeks time.

I will certainly keep adding to my story for the benefit of all other fellow travellers!

Regards to you and your wife love Tom and Colette XXX

User
Posted 23 Jun 2021 at 14:48

 

Back again fellow travellers:

Good news for a change ....my latest PSA is now down to 0.56 and my Testosterone level is down to 0.60 after :

BICALUTAMIDE for 4 weeks from 10th April

ZOLADEX 3 month implant from 6th May.... probably for life or while it still works

ENZALUTAMIDE from 7th May

Good luck to every one else

Regards Tom              

Show Most Thanked Posts
User
Posted 19 Jan 2017 at 15:22

Hello tp1944 and welcome to the site

 

My husband (also in his 70s) opted initially for AS and then followed that with permanent seed Brachytherapy.  You can click on my profile and see what his journey was like.

 

There are a number of men on here who chose that option.

I wish you well with the treatment.  Any questions you may want to ask then feel free.  No question is regarded as stupid or too personal.

 

We are all in this together (including us ladies who have undergone the hot flushes etc and those who still have that "pleasure" to come)

 

 

Edited by member 19 Jan 2017 at 16:57  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 19 Jan 2017 at 16:00

Many thanks Johsan for your good wishes.

I have already read your posts on this subject (and printed it off for my wife) and found it extremely helpful in deciding what course to take and what side effects to expect post op. 

It's a tricky balance at our age (early 70's).

There is a lot of statistical evidence to suggest that we could easily die with it rather than from it?!

However, I did not want to hang around to find out!

Roll on 31st Jan 2017! 

User
Posted 06 Feb 2017 at 12:32

Hello again.

My implant procedure went ahead as planned on 31st January 2017 and this post will describe my experience of that day (Day 0) and subsequent recovery over the next 5 days.

Tuesday (31/1/2017) (D+0):  Implants of 55 Iodine 125 seeds into my 40cc prostate (HT over previous months had reduced the volume from 70cc!) completed successfully and was allowed home after producing the required volume of wee.

At home, drank plenty of fluids, as advised, but it quickly became obvious that I could not wee!

Phoned The Christie and was advised to walk round the house but after about 2 hrs of this, still no joy, so phoned the hospital again. They immediately instructed me to return for catheterisation.

About midnight was catheterised and was quickly relieved of about 1 litre of urine! What a relief!!

Wednesday 1st Feb 2017 (D+1): Recovering in hospital all day. 1st Tamsulosin and Antibiotics taken.

Thursday 2nd Feb 2017 (D+2): Catheter removed about 6:30am and 15 min later produce about 5 ml of “red wine”! This was followed by 30ml (8am); 30ml (10am); 25ml (11am); 35ml (1pm). I thought to myself “This is hard work”. Then one of the nurses suggested my wife and I go for a walk outside in the lovely gardens. This seemed to do the trick because when I got back, “joy of joys” I managed 150ml (3pm) followed by another 150ml (4:30pm).

I was free at last and discharged at 5pm

Great to be home again; but started to have difficulty weeing again! Usually started with a bloody fluid but one bonus was my first poo!! .Worried that far more fluids were entering my body than leaving it! I was reluctant to drink too much as advised. Thoughts of a repeat of Tuesday night began to alarm me.

Friday 3rd Feb 2017 (D+3): Again very difficult to wee normally – not very productive. Took following tablets about 4am: 1xTamsulosin; 2xIbuprofen and 1xParacetamol

7am: had breakfast (cereals; toast and fruit tea) and went back to bed. I was absolutely exhausted from restless night.

9:30am: got up and had a more productive wee, so slightly relieved and enjoyed a lovely shower.

10:30 am: had a very productive wee (about 100ml). Can I see the light at the end of the tunnel at last?

11am: felt well enough to go out shopping

Afternoon:  More frequent urges to wee and these were very short and bloody to start with.

Throughout the night about 8 visits to the loo for short weeing sessions were necessary!

Saturday 4th Feb 2017 (D+4):  Up about 7:30am. Took all appropriate tablets with breakfast, but not long afterwards felt a bit lightheaded so went back to bed for about an hour.

10am: feeling much better now. Got up had a shower and a cup of tea.

11:30am: Walked to the local shop for a paper

Afternoon and evening uneventful - weeing reasonably effectively but invariably preceded by small bloody discharge. Had second poo since leaving the hospital

Sunday 5th Feb 2017 (D+5): Early hours frequent visits to the loo. Difficult to start with and not very productive.

6am: got up had my tablets and breakfast. Went to the loo managed a “wee” wee and 3rd poo

Mid morning: more productive “red free” weeing now. Dare I hope that this is “the end of the beginning”?

I hope my experience will be of help to others contemplating the Brachytherapy route and will add to this as and when I feel it would be usefull

My follow up appointment at The Christie hospital is set for April 28th 2017  

User
Posted 07 Feb 2017 at 10:11
Hi tp

I read with interest your post. My brother just been dx and we have had to make decisions. Please visit my profile. Although our journeys are different I find your post very informative as part of the whole picture for people to gain real life latest experience. Do you think you could cut and paste ongoing diary into your profile? I actually need to update my profile with my brothers data. May I ask how is your brother and what treatment path is he on ?

Do you think you could have been dealt with any differently re. Retention? Is this common? If you had been living on your own do people still get realised ASAP ???

I do keep a basic diary.. as easy to forget info. I had da vinci and was dry practically immediately. . My visit to a & e was required due to excruciating pain / spasms not retention.

Best wishes

Gordon

User
Posted 10 Feb 2017 at 09:24

Hi Gordon .. apologies for the delay. Been celebrating my wife's 70th birthday and our latest grandchild's 1st birthday!

After reading many posts on this forum, it has been obvious that I have not been very proactive in accumulating more detailed info regarding my condition apart from "INTERMEDIATE LOCALISED CANCER" Gleason 7 (4,3) and PSA about 10 and that it can be treated.

I will seek more info from now on!!

My brother's cancer is more aggressive than mine and he is currently receiving anti-androgen hormone treatment (daily BICALUTAMIDE tablet). Sadly my brother is also showing signs of early onset Dementia.

Regards my experience with total urine retention, I was beginning to suspect that weeing was becoming more difficult after reaching the required target and mentioned this to the nurse. So it was largely my own fault for rejecting her suggestion that I could wait longer before going home. Two factors influenced this decision : my wife was on her way to collect me and the central heating engineer was visiting at this precise time to repair our boiler (we had been without hot water and central heating for about 5 days) and I was keen to be home to oversee the repair!!! - What perfect timing!!

Regards

Tom   

User
Posted 10 Feb 2017 at 15:09

Many thanks for your posts i start my brachy on 1st of march and my treatment is the high dose Brachaytherapy
I am not getting the seed implants as my treatment appears to be slightly different in that the radiation source is not left within the prostate but is taken out after a particular period of time. This all happens of course whilst I am under the anaesthetic so I will not feel anything even the catheter would be removed before I left the theatre. If all goes well I would then be discharged in the early evening,I have also been assured that they have had very few complications with any of thier patients. I may have to take that with a pinch of salt as i have heard quite a number of stories regarding urine retention after this particular procedure and so the light side effects that I am currently experiencing after my radiotherapy could soon turn into major ones. Lets hope not eh?
I hope your urine flow is okay now and you have no further complications please let us know.

Edited by member 18 Apr 2017 at 16:02  | Reason: Not specified

User
Posted 16 Feb 2017 at 11:02

16th Feb 2017 (D+16) : Just visited GP to confirm continued supply of TAMSULOSIN! Without it catheterisation would be a very distinct possibility.

Currently weeing OK during the daytime, but waking up frequently during the night and struggling. It’s difficult to start and sometimes just a trickle or nothing at all. Because of this poor quality of sleep, I often have to nap during the day. However, I have not needed pads or “nappies”!

I asked the doctor for a copy of the Histology report dated 26th Aug 2015. I have added the following details to my Profile :

I was diagnosed with GLEASON 7 CARCINOMA OF THE PROSTATE

PSA currently 9.1 (normally around the 5 mark). Sudden jump up to 12 but now declining again

5 out of 7 cores on the left-hand side. Gleason 7 (3+4)

Right hand side benign

DRE T2 (only just)

It is now 4 weeks since my 4th and final ZOLADEX hormone implant so can hopefully look forward to regaining my masculinity and say goodbye to the HOT FLUSHES!!!

Will continue to report my progress as and when appropriate

In the meantime good luck to all who choose LDR BRACHYTHERAPY. It's not been as bad as I thought it might be!   

Edited by member 16 Feb 2017 at 11:22  | Reason: Not specified

User
Posted 01 Mar 2017 at 11:58

22nd Feb 2017 - Received latest blood test results from GP : 
Total PSA Level 1.0 nmol/L
Testosterone Level <0.2 nmol/L (normal range 6.7 to 25.7).
Although I have now finished with HT, I clearly have a long way to go before I recover my masculinity!!

If anyone has any idea how long this might take I would very pleased to hear from you!!

Regards Tom

User
Posted 04 Apr 2017 at 11:35

4th April 2017 (D + 9 weeks): Just passed one half life of the radioactive decay of iodine 125

The Intervening period has been dominated by two inconveniences:

1) Still experiencing many hot flushes even though my last Zoladex 4 week implant was on the 18th Jan 2017.

2) Each night 3 to 5 nocturnal visits to the loo are required for a wee and the flow can be very weak and intermittent! This is almost always followed by a hot flush requiring the use of my rechargeable battery operated fan to cool me down! Consequently, I am getting quite tired during the day!

Could I be experiencing mild radioactive cystitis?

Apart from some tiredness and fatigue during the day, the urine flow is quite strong and apart from the urge to wee can suddenly surprise me, I am coping quite comfortably and day to day activities are not being too inconvenienced.

Will update with further stats and news after my next appointment on 28th April 2017.

User
Posted 04 Apr 2017 at 12:02

Good luck for your next appointment.

By that time Paco will have his da Vinci don't. I wish the best to you and my husband.

User
Posted 04 Apr 2017 at 12:17

Many thanks Lola for your good wishes. Please accept my very best wishes for yourself and your husband, Paco
Tom

User
Posted 04 Apr 2017 at 12:29

Great to hear you are managing I had my HDR (no seeds three weeks ago and I have no real side effects apart from the one visit to the toilet at night ,the hot flushes, and the daytime fatigue(which I work through)
My follow up appointment, with yet another doctor that I had never seen before, appeared to be rushed and it was as if he was reading from a script. I asked about the Tamousolin as the course finishes in another two weeks and he basicaly told me to get some more off of the GP and see how it went. He seemed more interested in the little survey that I filled out than to answering any of my questions. I even had to ask him what my PSA was (which was .1
I have another appointment in three months and I hope its with the consultant that did my Brachytherapy as his bedside manner was as it should expect from a consultant as t may be run of the mill to them but to us its a frightening experience.
So I am still in the dark about the actual results of the treatment, or is it to early to tell?
Good luck with your progress as I have another four months to run on my hormone treatment which means a lot more hot flushes and I hope that i have not become to reliant on the Tamosulin.

Edited by member 18 Apr 2017 at 16:05  | Reason: Not specified

User
Posted 04 Apr 2017 at 21:14

Thanks Bob, pleased to hear you are coping well after your treatment, but I envy your single trip to the loo each night!!

I am noticing a gradual fall in frequency of hot flushes. May it continue.

I too experience fatigue which can be overcome with a quick nap, usually in the afternoon. Fortunately I have the luxury of being retired!!

Sorry to hear about your experience with your follow up appointment. I get the impression that we need to be a bit more assertive at these meetings and ask plenty of questions.

Good luck with your continuing HT. I'm glad I'm finished with it, at least for the time being???!!!

Regards Tom 

   

User
Posted 05 Apr 2017 at 09:39

Hi BB, I'm interested in your HT treatment.  I was put on HT about 5 monthd before my HDR Brachy. was told not to continue after the HDR. I don't miss taking the Ht, but shold I have done?

Thanks.

Dave.

User
Posted 08 May 2017 at 14:35

Hello to all again. As promised here is the latest update.

28th April 2017 (approx D + 3 months) – 1st follow up appointment at The Christie :

Pleased with progress:

Scan shows all 55 radioactive seeds present and correct.

Bloods taken: PSA 0.92.

Advised to keep taking Tamsulosin until next appointment in 6 months time.

Hot flushes showed signs of diminishing in frequency and severity from the middle of April 2017. Thankfully, as of now (8th May), I am now completely free of this side effect!!

I feel that the weeing situation is improving with time. Presumably as the physical and radioactive effects of the Brachytherapy procedure subside.

I regularly read other posts on this excellent forum and am constantly reminded how lucky I currently appear to be. I was in my early 70’s before I was diagnosed, but I can hope for a treatment which will probably allow me to eventually die WITH this horrible disease and not from it!!

I am constantly saddened by the many far more serious cases that I read about, especially when it involves younger men, and my heart and good wishes go out to all those affected, both patients and family members. Thank you for the strength and fortitude you all demonstrate. You are an inspiration.

User
Posted 08 May 2017 at 15:41

Hello again tp.

Glad you've made good progress.

I agree with your sentiments regarding how lucky we are compared to some.

I really feel for some on here and they are so brave in how they deal with it all

We can't control the winds - but we can adjust our sails
User
Posted 02 Aug 2017 at 12:40

Back again with latest update :

26th July 2017 (approx D + 6 months) 

PSA 1.1 ug/l (acceptable level <5 for age >70)

Testosterone 10.3 nmol/l (acceptable range 6.7 to 25.7)

Radiation level now down to approximately 10% of original strength.

Glad to have my Testosterone back but unfortunately still having ED problems!! Maybe a Tamsulosin side effect?  

Still require 4 to 5 nocturnal visits to the toilet during the night which is proving rather tiring.

Hopefully, the situation will improve over time and that I can eventually survive without Tamsulosin!!!

Will update after my next meeting at The Christie at end of October

User
Posted 02 Aug 2017 at 13:51

Hi Tp,

Good results hope it continues,I was not sure about the side affects of the tamulosin and managed  to get off them in April and water works are ok so far but can still get up a few times in the night but no real urgency but if i wake up i just tend to go.

At six months i was still had a bit of urgency but it does improve with time, (10 months on) my PSA is only down to 0.56 but don't go back till January  for next blood test.Good luck.

 

John.

User
Posted 02 Aug 2017 at 14:08

Many thanks, John. Pleased you are progressing OK. It is very useful to contrast and compare experiences with others undergoing the same treatment paths.
Regards Tom

User
Posted 06 Nov 2017 at 16:14

November 6th 2017

Now approximately 9 months since my Brachytherapy operation and can report that my latest PSA is 1.3 and that The Christie Hospital have moved me onto 6 monthly monitoring appointments.

I have to request a PSA test from my GP about 2 weeks before each appointment so am now effectively back on Active Surveillance.

Until recently, my large prostate (70cc) would have ruled out Brachytherapy as a treatment option but this is no longer the case if HT is first used to shrink it.

Still taking Tamsulosin but trying just 1 tablet every 3 days. Will probably stop altogether at the end of the week and see how I get on?!

Regular night time trips to the loo still a bit of a problem, but showing signs of improving.

ED issues are slowly improving with the aid of Viagra!!

Mean while, can I take the opportunity to wish all my fellow sufferers all the very best for the future.

To those families whose loved ones sadly do not see the light at the end of the tunnel, my sincerest condolences.

Tom        

       

User
Posted 06 Nov 2017 at 22:16

Thanks for the update Tom, I love threads like yours- giving the full journey and being prepared to update post treatment on the big 3! Of cancer control, continence and functionality?

Really helpful to those who may follow a similar path!

Thank you and great news that it's all going well.

Clare

User
Posted 07 Nov 2017 at 10:12

Hi Tp,

Sounds like you are winning I am a few months ahead of you from operation it will be 14 months on the 25th November.I got off the Tamulosen last April and my last PSA was down to 0.59 and at last meet with the specialist team they seemed happy but i did not get all my questions answered.

Apart from that it's nice to hear from another LDR Brachytherapy patient as it does boost the spirit a bit.I still have the dreaded Ed but like you we can get by with the pills.I was also given a three month break to my next blood test in mid January so have come over to Europe in my motorhome and will tour till the New Year ( Spain at moment) before returning to the UK.I am finding being away from home very useful as it gets me away from the over thinking and analysing what's happing to me.

Good luck for the future and keep us all posted on your progress.

And high all the rest of the members on here I have not forgotten you all and your own journeys with PC and still follow you and try to give some help if i can.

 

John.

User
Posted 24 Apr 2018 at 15:33

Still here folks and able to update you all on my progress!

April 24th 2018 (D + 15 months)

PSA 3.4 ng/ml …up from 1.3 on 27/10/2017

Testosterone 10.0 nmol/l …down from 10.3 on 26/07/2017 (acceptable range 6.7 to 25.7) so still lowish

No Tamsulosin since December 2017

6 month check up with The Christie Urology Nurse … raised PSA level could be due to “The Bounce”. Switch to PSA every 3 months until long term trend established

Still 3 to 6 nightly visits to the loo (very occasionally just 2!). Was reassured that the trauma exerted by the Brachytherapy procedure can take a relatively long time to settle down! WE SHALL SEE?

Currently finding that it is a difficult balance between taking on board sufficient fluids and minimising the urgency to find the nearest loo!!

I dare so I am not alone in finding that this disease not only has a fairly severe physical impact but a psychological one too!!    

However, I am feeling a bit more positive since seeing the nurse today.

Next appointment in approximately 6 months time

Tom

 

User
Posted 24 Apr 2018 at 15:40
Hi tp1944,

Hopefully as you say the increase in PSA is a bounce and not a trend.

You are so right in saying the physical side effects and psychological effects of Prostate cancer and it’s treatment are a roller coaster.

Stay as positive as you can,

Best wishes, Ian

Ido4

User
Posted 24 Apr 2018 at 16:19

Many thanks Ian for your best wishes.
You certainly have been on a bigger roller coaster ride than I have and at a younger age too!!
May your good news continue for many years to come
Best Wishes, Tom

User
Posted 26 Jul 2018 at 09:57

Latest update on my "Living with Prostate Cancer" journey

July 26th July 2018 (D + 18 months)

PSA 4.6 ng/ml ….. up from 3.4 on 24/04/2018

Testosterone 9.6 nmol/l …. Down from 10.0 on 24/04/2018

Not the good news I was hoping for!! Both parameters trending in the wrong direction still!

User
Posted 23 Oct 2018 at 18:00

Oct 23rd 2018  (D + 21 months) … 6 monthly review today at the Christie Community Prostate Clinic so time for an update :

PSA 4.7 ng/ml ….. up from 4.6 on 17/07/2018

Testosterone 9.1 nmol/l …. Down from 9.6 on 17/07/2018

Still disappointing but at least the PSA rise is not so steep so no need to be too concerned (yet?!)

Next review date in 3 months time (rather than 6)  

Tom

User
Posted 23 Oct 2018 at 18:27

Your PSA rise is small but three month review seems sensible. I presume you are still on active surveillance?

Best wishes.

Ido4

User
Posted 23 Oct 2018 at 19:07

Many thanks Ido4. Yes I guess it is Active Surveillance for the moment. Just thankful I was in my 70's before I had to deal with this desease!

Regards Tom 

User
Posted 23 Oct 2018 at 23:57
TP did they say anything at the review appointment about next steps if your PSA has risen again in 3 months? Or at what PSA level they would start to be concerned?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Oct 2018 at 10:24

The Urology nurse I saw at the latest review was slightly concerned at the elevated PSA and indicated that the next review in January will be the point at which they decide on what course of action needs to be taken (if any). She reassured me that there were several options available. I am currently awaiting a follow up letter from this recent review.  

Regards Tom   

User
Posted 24 Oct 2018 at 11:28

Hi Tom,

I am still here following you on the Brachytherapy road and so far my results have been good and dropping.Sorry to hear yours are rising a bit but i am sure you are in the best hands.

There are not many of us LDR on here and i find i am not much help or comfort to the Radical operations members not having had their treatments.

Good luck in January i am sure they will give you a good going over for the best result.

Regards John.

 

 

User
Posted 24 Oct 2018 at 12:10

Hi John .. good to hear from you again and glad to see you are in "good health"!

As you indicate there are not many of us LDR patients on the forum therefore it is important that we keep our threads going.

It was thanks to yours and Johsans husband's latest PSA results of <1 that I realised that my treatment may not have been 100% effective.

We will just have to wait and see what happens.

Will update again in Jan 2019

Meanwhile, hope you have a great Christmas

Regards Tom     

User
Posted 24 Oct 2018 at 17:18

Whatto John the Print, TP1944 and Johsan,and all other LDR Implantees,

As my profile will tell my LDR (Seed Implant)Brachytherapy goes back to April 2010 which kind of makes me feel like Kenneth Clark where he sits in the Commons as 'Father of the House.' If anyone wants to deprive me of 'Longest LDR Seed Implantee' then go right ahead.

I have enjoyed a spectacularly healthy 8.5years since LDR and have monitored my PSA level every 3 to 6 months throughout this time. The lowest PSA I ever recorded was in January 2013, almost 3 years after treatment, when the level dipped to 1.0 which therefore became my nadir. It is a little worrying that my most resent PSA test in August 2018 came back at 2.4 but by constant closely monitoring I am aware that my PCa can be described as slow growing but taking no chances I am looking to a NHS MRI scan mid November 2018. My most wonderful Consultant is keeping his eye steadily on my PSA ball and if and when it reaches 3 he will decide if intervention is necessary. There are several treatment possibilities available to me but I see no point in chasing rainbows until the make your mind up time is in my face.

I am 74 years old and play Golf 3 or 4 times every week. I have no symptoms now nor have I ever had even prior to diagnosis in October 2009.For me, even if I drop dead tomorrow, Low Dose Radiotherapy has been a monumental ,side effect free, success.

I have given my honest advice to many posters on this forum and will continue to so if I can be of assistance to anyone. I find that that the best way to get my message over to anyone is by direct email which becomes of course much more personal.

My advice, in line pretty much with that of Bollinge, is for anyone living under the threat of PCa for goodness sake by fair means or foul get your  PSA blood tests done as regularly as you can and if the numbers become worrying get your arse down to the Quacks or get on to your Consultant's Secretary for an appointment.

I have read the Prostate Cancer UK forum every single day since my diagnosis looking perhaps to help a newcomer and I ask that all posters keep it in mind that there is a need to extend compassion and just as the medical profession preaches 'first do no harm'. Just imagine the thoughts of a first time poster when he/she arrives here and is met with what seems like some kind of confrontation.

 

I am an authority on Low Dose Radiation Brachytherapy but not remotely authoritive.

 

Kind regards to everyone.

Edited by member 24 Oct 2018 at 17:48  | Reason: An after thought.

User
Posted 24 Oct 2018 at 17:44

Hi Chigwell,

Thanks for your interest in the Brachy guys sorry i have not picked up on you before and i tended to think was i right in going for the Brachytherapy as against  the Radical surgery that the first specialist told was they way to go.

It was only that i had a friend from the print had been diagnosed with PC and had taken the brachytherapy option that was very successful and was on remission after two years,unfortunatly he died of a heart attack while on holiday in Spain so we will never know if he beat it.

So maybe it pays not to worry about the PC to much as there are many more other ways to meet your maker out there.

But i must say it is nice to hear from other members on here from time to time and their own personal journeys that had the same procedures.

I still find the PSA scores very confusing as mine was lower than your start at 2.19 with gleason 3+4 =7 but 5 out 20 samples positive and yet the normal PSA for a 70 year old is about 5-7.

I think i have been very lucky with the results so far and the specialist has handed me over to the oncology nurse for six monthly blood tests.

 

Regards John.

User
Posted 10 Nov 2018 at 11:00

Nov 10th 2018 ….It is with great sadness that I now inform fellow forum members of the death of my dear younger brother yesterday morning from this s**t disease .

He was rushed into hospital about a week ago and a scan showed that his cancer had spread though out his body and there was nothing they could do. An added complication was Alzheimers.

He will be sadly missed by all his family and friends, but his suffering is now over.

I had an MRI scan yesterday and a Bone scan a week ago so now just awaiting the results. Hopefully they will help provide explanations as to why my PSA is so high.

Tom  

User
Posted 10 Nov 2018 at 11:37
Sorry to see this TP.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Nov 2018 at 13:08

Sorry to hear that TP, this disease is truly awful.

Ian

Ido4

User
Posted 12 Nov 2018 at 14:23

Hi Tom,

Sorry for late reply I just read about your loss. Its bad enough to have the PC yourself but when it affects your brother it gets very hard.We are thinking about you at this sad time and hope the pain will lessen with time.

Wishing you the best of luck with your next appointment please keep in touch.

 

John.

User
Posted 12 Nov 2018 at 16:04
So sorry for you loss Tom

barbara x

User
Posted 13 Nov 2018 at 16:14
Condolences on your loss, so sad for family and friends.
Barry
User
Posted 30 Nov 2018 at 20:31

Saw the Urologist today and got the scan results. 

Have drawn a "long" and a "short"straw!

Bone scan is clear (thank goodness), but the MRI scan has revealed a suspicious area in the prostate!

Suggested that only a "guided" biopsy can reveal with some certainty how serious this could be!

Now waiting for an appointment to discuss this with the surgeon!

HD Brachy and/or HT might be needed

What fun it is "Living with Prostate Cancer"

Regards Tom

       

User
Posted 01 Dec 2018 at 11:20

Hi Tom,

Sorry to here you are back for more possible treatment but the bone scan being clear is a good start so they can give you a good checkup on just the prostate part

I expect that being so close to Christmas you may have a wait till the New Year and that does not help you thinking about it,If like me if there's a problem i want to get in there.But stick in there mate you have a few of us rooting for you.I am due for my six monthly blood test mid December for a meeting on January the 8th so the thinking process is setting off again.

I wish you all the luck with your next meeting and hope its all good news.

Regards John.

Edited by member 01 Dec 2018 at 11:22  | Reason: Not specified

User
Posted 01 Dec 2018 at 15:10

Many thanks, John for your best wishes for the future. As you say better to find that the problem is confined to the prostate. Just have to be patient and maybe wait until the new year before further investigation can ascertain whether the suspect area is benign or not!

Good luck with your next check up and best wishes for Christmas

ps. Apologies for the delay but I'd like to thank all fellow members for their messages of condolences following the death of my dear younger brother.

I still cannot believe he's gone!

Regards Tom    

User
Posted 12 Mar 2019 at 13:39

Mar 12th 2019 :- Received the results of a Template Biopsy performed on 18th Feb 2019 and unfortunately it confirms the presence of residual cancer cells in the left half of my prostate, hence the elevated PSA! So salvage treatment will be required; probably HDR Brachy, but yet to decide when I meet the Urologist.

What a roller coaster ride I am on, but the consultant surgeon I saw today was very optimistic and suggested I had many years ahead of me.  

Tom      

User
Posted 12 Mar 2019 at 14:14

Hi Tom,

Fingers crossed for you looks like the consultant has your back,keep fighting mate i am sure you can beat it.

regards John.

User
Posted 12 Mar 2019 at 14:22

Many thanks, John for your good wishes. All I can do is stay positive and not let this nasty disease have the last laugh. Still got too much living to do. I have a wonderful loving wife; four children and eight grandchildren!. The 8th one arrived on Christmas day!!

Tom    

User
Posted 29 May 2019 at 16:32

The next stage of my journey has now been established!

I have decided to accept the recommendation of the hospital medical team that further retreatment with HDR Brachytherapy could lead to urinary tract symptoms and significantly worse lower urinary tract symptoms!

I cannot therefore hope for a "cure" from this bloody disease and have to resign myself to going back on Active Surveillance until such time as Hormone treatment is required!!

At least I have got "old age" on my side!!

Tom     

User
Posted 18 Dec 2020 at 11:18

Hello fellow travellers ... time for an update!!

15th July 2019 : PSA 5.7 (back down from 6.3) Wow, the first reversal!! 

25th Nov 2019 : PSA 6.4 - Steady as she goes!   

5th Mar 2020 : PSA 7.1 

22nd May 2020 - Telephone conversation with Onco - No alarm bells yet? Another PSA and appointment in Nov 2020

14th Sept 2020 - PSA 7.9 - If goes above 10 will have further CT and Bone scans.

18th Dec 2020 - PSA 8.6 - Still increasing!

To summarise my journey ... I'm certain that the treatment I have received will increase my life span but it has left me slightly incontinent (need to wear Tena Pads) and suffer from Dry or Retrograde Ejaculation and ED problems but at my age it's not a big issue?!  

 
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