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Salvage radiotherapy

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User
Posted 01 Mar 2017 at 19:25
I have prostate cancer progression after a radical prostatectomy in July 2015. Currently on hormone therapy (prostap)

My oncolgist was initially very reluctant to recommend radiotherapy for the two local recurrences I have (one on the prostate bed and one is in a remnant seminal vesicle). The reasons were test treating the seminal vesicle area would result in a lot of bowel being hit. I had another appointment on Monday the result of which is I am going to have a radiotherapy planning scan on Friday 3rd March with a full bladder to see if this pushes some of the bowel away from where radiation will strike. I will meet again on 27/3 to get the results of the scan and a risk assessment on the possible toxicity of radiotherapy,

Has anyone else on this forum had salvage radiotherapy after radical prostatectomy?

How were the side effects? What as the outcome?

Thanks in anticipation.

Ian.

Ido4

User
Posted 23 Apr 2018 at 12:56

That’s mostly good news isn’t it !! You know my views and I know they are different from most people’s. The less time on HT the better I reckon. I think I’m right in saying that the HT isn’t a curative element whereas the RT was ?? Depends whether QOL is important to you. I’m three years post op nearly and only accepted 11 months Bical HT. My psa is now over 24 and I’m having a really good life with scans showing nothing. Running the gauntlet maybe but I want to enjoy life to the full. I’m scared of dying but I’m more scared of not living

User
Posted 13 Nov 2020 at 17:29

Latest PSA result from blood draw 9/11/2020. PSA <0.1, undetectable. So pleased. Both Sandra and I were very nervous about this one. The stress never disappears. 

I’m now 3.5 years post salvage radiotherapy and around 21 months since the last three month HT injection.
White cells, lymphocytes and neutrophils all too low so will have to be careful as that makes me more susceptible to infection. 
Best wishes to all. 

Ido4

User
Posted 01 Mar 2017 at 20:14
Hi Ian

I had my op the month after you and had salvage RT ending in June 2016 but have not had HT.

I had no real problems with the RT itself apart from the feeling that my bladder often felt as though it needed emptying when it didn't. To be fair I had urinary incontinence following the op which when it cleared up left my bladder more sensitive. In the past 3 weeks I have had some bowel discomfort which may or may not be as a result of RT but I am seeing the onco in 2 weeks for a 6 month update. My PSA before the RT was 0.5 and the PSA test in Sept was 0.6. I am having a PSA test next week and will get the result when I see the onco but as they say it can take 18-24 months to reach a PSA nadir it is possibly too early to come to any conclusion. To sum up - I had no real problems with RT and am still waiting to find out if it was successful.

I am happy that it was done and have too say that I can't bring myself to worry about the result as between us we will live with whatever happens and carry on enjoying what life has to offer. Hope all goes well for you.

Kind regards

Kevan

User
Posted 01 Mar 2021 at 16:42

Hi The Plumber, I am really sorry to hear your wife passed away last year. 
Have you had your planning scan for the radiotherapy?

I had a planning scan where I had to drink a fixed amount of water after emptying my bladder. They added three dot tattoos to help the radiologists line me up on the treatment machine.

Not having a prostate makes lining up slightly trickier so I was given a cone CT scan on the treatment machine every day to make sure I was in the right place with the radiologist able to make slight final adjustments before blasting me! 
I also had to use a micro enema for the first ten treatments to get rid of any gas in the bowel. 
I was advised not to use normal shower gel or any creams for the 4 weeks of radiotherapy as these can contain metals which can affect the X-rays as they enter your body.

I was also given a dietary sheet telling me to eat white bread, peel apples etc to reduce fibre during treatment but I believe different centres have different protocols.

The radiotherapy was straightforward, I arrived at least 30 minutes before my appointment time to allow use of the micro enema and empty my bladder.

The team were fantastic. I received 55 Grays over 20 sessions. I did find I got pretty tired at the end of each week but it passed quickly. I remained on hormone therapy for 2 years post radiotherapy.

I hope that helps, all the best with the treatment.

 

 

 

Ido4

User
Posted 16 Jul 2022 at 11:32

Ido4 - I spoke to someone at the Pelvic Radiation Disease Association about my symptoms.  I was initially diagnosed with Radiation Proctitis.

The lady at the PRDA said that most hospitals are useless at managing it.  She warned me not to see a surgeon.  When I asked my Oncologist what the plan was, she said, 'I'll speak to one of the surgeons' .

I politely declined and asked for a referral and got a referral to a specialist in Harrow recommended by the PRDA.  That doctor was fantastic.

They did the SEHCAT scan for bile salt reabsorption.  Mine came back borderline.  She said she could start me on medication for it but I opted for imodium and normacol.  It has worked.  

The PRDA has a list of gastroenterogists who accept referrals for suspected PRD.  Might work differently in Scotland, but I had no problem getting a referral to an out of area hospital.

 

User
Posted 04 Apr 2023 at 19:13

Quick update. Surgery 23/7/2015, salvage radiotherapy March/April 2017. Hormone therapy December 2016 to April 2019. Latest PSA tested 23/3/2023, still <0.1, always a great relief considering my oncologist’s view that I am incurable.

Still waiting to see the gastro team re my bowel issues………

Best wishes to all. 

Ido4

User
Posted 04 Apr 2023 at 19:57

Good news re PSA.  Hope they sort out yhe gastric issues.  Have you been seen by anyone yet ?

User
Posted 08 Sep 2023 at 17:55

Ido4 , great news on the PSA ,long may it continue, no Idea on the haemoglobin.

Keep going mate. 

Thanks Chris.

User
Posted 08 Mar 2017 at 20:27

Thanks for the reply Brian, your PSA in October was amazingly low. We don't seem to have the sensitive PSA test in the Edinburgh area yet, still to one decimal place so 0.1 is the lowest detectable. Can I ask when you had RT did the radiation target seminal vesicle areas or just the prostate bed? One of the two tumours I have is in a seminal vesicle remnant and it is this area the oncologist is worried about due to potential bowel toxicity. I sincerely hope your next PSA is still as low. Best wishes, Ian.

Ido4

User
Posted 28 Mar 2017 at 18:41

Thanks for the reply radar, sounds like this worked out for you so far. How did you fare with side effects?

Ido4

User
Posted 31 Mar 2017 at 08:54

i,found low fibre helped me with gas.

User
Posted 01 Apr 2017 at 17:15
Hi Kevan,

I will keep you posted on the RT. I am also on PROSTAP and will be for at least two years post RT. I have found for some reason I am getting more hot flushes having changed from the 4 week injection to the 12 week one. Otherwise I find the HT ok.

You are quite right to enjoy the lovely weather today. I have been out for a walk and it is glorious, uplifting for the soul!

Hope the HT goes ok for you.

Best wishes,

Ian

Ido4

User
Posted 03 May 2017 at 15:41
I thought I would post an update on my salvage radiotherapy. I finished the last of my 20 sessions last Wednesday 26th April with 55 Grays bring targeted at the Prostate bed and the seminal vesicle remnant with active cancer. I have coped surprisingly well so far but feel pretty tired and am having bowel issues in terms of urgency. I am using Fybogel to calm this aspect down. I find I need to go to the loo multiple times before I begin to settle down. I am managing to go out but am trying to time it so that I am not cuaght out. My next PROSTAP 3 injection is on 18th May and I will continue on this for two years post radiotherapy I believe.

I am trying to visualise the cancer has gone and hope that in two years time my PSA will stay down after HT stops.

My body has been hammered with laparoscopic radical prostatectomy, HT and now radiotherapy in a period of about 21 months. I am trying to remain positive and to that end have managed to get travel insurance and have booked flights to Canad in July to see our eldest son who is working in Calgary for a few months. Something to really look forward to which is really important for all of us in our situation. You are all amazing people and this site is so useful. I would find life much more difficult without it as well as my family and friends too of course. Best wishes, Ian.

Ido4

User
Posted 05 May 2017 at 18:45

Ido4, ultra-sensitive PSA testing seems to have been brought into disrepute and our hospital has put a halt to all PSA tests at smaller than 1dp. Hard for us to get used to as John has had 7 years of ultra-sensitive but I am comfortable that as long as it stays less than 0.1 we should assume all is okay.

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

User
Posted 23 Apr 2018 at 20:33

Hi Ian I can’t have routine scans again till September. My psa then is expected to be 96 !
I have repeat bloods June , where my psa is expected at 48. Not sure if they will want to act then but they’ll have to wait as I have 2 holidays booked :-) ......
I think I’m a way I’ve rocked their protocol by refusing RT. They said themselves it would be non-curative but I guess they can’t go throwing thousands of pounds at me until they have sure proof of advanced diagnosis. Keep well

User
Posted 08 Aug 2018 at 19:06
Scores on the doors good. Long may it continue!
User
Posted 08 Aug 2018 at 21:33

Well done, Ian. It’s, hopefully, a long slog for us all, but latest figures look very encouraging. After finishing SRT last December, my bowel movements recently have become quite alarming at times and I think it must be a side effect of the radiotherapy. Have upped my fibre intake and thankfully it’s settled down. Don’t see my Oncologist until late October, but at one stage I thought I might have to book an earlier appointment with her. Good luck with your next blood test in November, Ian.

User
Posted 08 Aug 2018 at 21:53

Hi Ian

Good news concerning PSA and long may it continue.

I had a hernia op last year and the surgeon said that it took a bit longer due to thickening  of some of the layers as a result of RT so it can have an effect.

Hope they sort things for you.

Kind regards 

Kevan 

User
Posted 08 Aug 2018 at 22:20

Fantastic!!

Long may this continue!!

P

User
Posted 09 Aug 2018 at 09:09
Great news Ian, I am very happy for you!

(by the way I had my consultation last night I am going back to your recommendation of "Fybogel" after 3 months of problems :\).

Richard

User
Posted 02 Nov 2018 at 15:22
Congratulations! (I won't segue into singing "and Jubilations!" as you don't want ear damage added to the list :)

Time to focus on living well and having fun!

User
Posted 02 Nov 2018 at 16:38

In the main it was extremely good viewing your latest Post, Ian and long may the excellent readings continue. Agree very much with your last sentence though ... this awful illness makes one very sceptical even when we receive good results. Memo to self ... I must, MUST remain positive! David.

User
Posted 09 Jan 2019 at 12:04
Good news about final injection. Hopefully the effects will wear off quite quickly but could be up to two years I hear. Bad news about continence. It’s horrible ain’t it. I hope things improve
User
Posted 21 Jan 2019 at 22:49
Great news re PSA, no idea re rest of it!
User
Posted 22 Jan 2019 at 07:18

Whoop! Whoop! Brilliant news. Keep it up 👍

I’m due for my first post RT check in three weeks and am in a bit of a funk. This will help lift me out of it.

User
Posted 22 Jan 2019 at 07:30
Good news Ian and good luck in three months with the next PSA.

Hopefully the rest of the bloods can be sorted too

Cheers

Bill

User
Posted 22 Jan 2019 at 17:45

I

Good news on the PSA can't help with the others.

Thanks Chris

User
Posted 22 Jan 2019 at 18:08
At least the psa is gone hopefully for a long time. Are you on Cialis , can’t remember. Causes bad gastric probs. Best wishes to you.
User
Posted 03 Jul 2019 at 18:03
Great result. Keep at it

Bri

User
Posted 03 Jul 2019 at 22:27
Bank it and celebrate!

I was < 0.1 after about the same time scale post HT and an even better result four months later so the good news doors are open for your future!

User
Posted 04 Jul 2019 at 17:35
Good news, keep that going and enjoy the success.

Ray

User
Posted 04 Jul 2019 at 19:21
Good news. You’ve thrown everything at it for sure so here is hoping all the best for you.
User
Posted 04 Jul 2019 at 21:56

Great news, hope it continues.

Thanks Chris

User
Posted 09 Jul 2019 at 09:15
Good idea. The thing is that he THINKS you are still low T. That is not a replacement for actually knowing. Surprised he did not ask for one. I would ring up and request one and if they say no, ask your GP.
User
Posted 07 Aug 2019 at 14:15
Sounds like your onco was correct - you are still suppressed? Don't think you are going to be any the wiser for at least 6 months
User
Posted 07 Aug 2019 at 15:02

Ian

Sounds like the Prostap is withdrawing from your body. I'm still on it and my T score was 0.4 at the last count.

Anything up to 0.7 is considered castrate level.

Rgds

John

Edited by member 07 Aug 2019 at 15:59  | Reason: +

User
Posted 07 Aug 2019 at 15:57
Mine recovered and actually from pre treatment rates doubled after six months but I was on triptorelin which is less powerful (?)

Just need to keep monitoring.

User
Posted 09 Oct 2019 at 12:11
Great news. Looking good all round
User
Posted 09 Oct 2019 at 18:55
Great news. Keep at it

Bri

User
Posted 06 Jan 2020 at 14:30

I thought I would update this thread since I have latest PSA result plus I saw my oncologist this morning.

PSA measured 30/11/19 is <0.1, happy days. The oncologist today was very happy with things as they stand.

He has cautioned that I am not cured but because the PSA is <0.1, 9 months after HT ended he has moved me to 6 monthly reviews by letter rather than face to face appointments. He has ensured I still have the telephone number for the specialist nurses and should get in touch if anything changes.

I have been here before so am naturally cautious too but also very happy that PSA is still undetectable.

I feel so much better off the HT so hope that I stay off it long term.

Keep fighting.

 

 

 

 

Ido4

User
Posted 06 Jan 2020 at 14:53
That's excellent news. Delighted to hear it!

Best wishes,

Chris

User
Posted 06 Jan 2020 at 15:21
Really pleased for you mate. What a relief hey !
User
Posted 06 Jan 2020 at 16:56

So pleased for you - happy new year!

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

User
Posted 06 Jan 2020 at 17:07
Missed this. Nice one, Centurion!

My next test is in about four weeks. I hope get the same after my last dissapointment!

User
Posted 06 Jan 2020 at 18:10

Thanks CC,CJ, Lyn and PP. The relief on my wife’s face is fantastic to see.

We we’re chatting on our way to the cancer centre about it being almost 5 years since diagnosis. 4 of those 5 years have been either in treatment or attending appointments with oncology or urology.

I am by nature cautious so won’t be assuming the fight is over but it’s good today.

PP, I have everything crossed for your next test.

CJ, I am thinking about you as treatment will be resuming reasonably soon I guess. 

Ian

 

 

Ido4

User
Posted 06 Jan 2020 at 19:03
Cheer Ian

It’s been three and a bit years for me. Feels like five minutes. Just gotta keep looking forward, eh?

User
Posted 06 Jan 2020 at 21:46

Great news Ian!

User
Posted 06 Jan 2020 at 22:07

It is great news and let's hope the break from treatment is a long one.

User
Posted 06 Jan 2020 at 22:19

Pleased for you, Ian.  Happy new year.

ulsterman

User
Posted 06 Jan 2020 at 22:24

Ido4

Great news on the PSA, sometimes treatment and issues seem never ending.  Hope you get some respite from more treatment.

Thanks Chris

User
Posted 06 Jan 2020 at 22:50
Great news mate

Happy new year. Up your neck of the woods for a couple of nights next week

Bri

User
Posted 06 Jan 2020 at 23:44
😱 You are going across the wall, Bri??? Have you had your jabs?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jun 2020 at 18:50

Ido4

Great news about the PSA. The other problems  don't seem too good, but sounds like you are being looked after.

Thanks Chris

User
Posted 04 Jul 2020 at 15:08

Hi Chris 1st video appointment with oncologist 23/6 then scan 2/7 . Thanks to all the information on here I now have a list of questions for my consultant. With such a low PSA I wasn't expecting RT.

Edited by member 04 Jul 2020 at 15:13  | Reason: Not specified

User
Posted 04 Jul 2020 at 18:46

K

No doubt they are looking at patterns and other data, not just the value of the PSA.

Thanks Chris

User
Posted 13 Nov 2020 at 18:00

Fabulous news.....relax and enjoy the weekend.

My husband had fraction 10/33 adjuvant RT today (RALP July ).

How long after the RT do they check PSA and does it go up to begin with sometimes?

Best wishes to you.

User
Posted 13 Nov 2020 at 18:19
That’s fantastic news for you both. Long may it continue mate. No the anxiety never goes away. I’ve been mostly ok as I never have PSA done anymore , but did spend the whole day in hospital yesterday which led to massive levels of panic - exactly what I’m trying to avoid. Not posted on my thread but updated profile. Just live every day and when Covid calms down live even more. Being on an acute Oncology ward brings it all to home. Just take care friend.
User
Posted 13 Nov 2020 at 18:35
Amazing news Ido!

You mentioned low lymphocites, I have this as well since I had SRT in February/March, remains constant around 0.6 x 10^9/L, any idea if it is related to SRT?

User
Posted 13 Nov 2020 at 18:41

Originally Posted by: Online Community Member

Fabulous news.....relax and enjoy the weekend.

My husband had fraction 10/33 adjuvant RT today (RALP July ).

How long after the RT do they check PSA and does it go up to begin with sometimes?

Best wishes to you.

 

Mine was checked halfway through SRT and every 3 months after that. My PSA went down rapidly but probably due to bicalutamide, RT takes about a year to be fully effective they said. So could go up initially I suppose...

User
Posted 13 Nov 2020 at 18:52

Ido4

Fantastic news,  that sounds very promising, think that calls for a celebration. Thank you for your support

Thanks Chris

User
Posted 13 Nov 2020 at 19:50

Ido,

That's fantastic news!

Good health. 

User
Posted 13 Nov 2020 at 20:50
👍 long may the good news continue

Cheers

Bill

User
Posted 13 Nov 2020 at 20:52

Thanks Lexi, I am still on three monthly PSA tests which was the case after surgery and salvage radiotherapy. Wishing your husband all the best with the rest of his radiotherapy.

 

Ido4

User
Posted 13 Nov 2020 at 20:53

Thanks Chris, you are in my thoughts a lot. I read your updated profile, take care.

Ido4

User
Posted 14 Nov 2020 at 01:09
Yay 🎉
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Nov 2020 at 10:25

Hi Ido4,

Great news nice to get it in before the festive season, long may it continue and stay strong.

 

Regards John.

User
Posted 14 Nov 2020 at 11:39

Hi Ido4,

Great result, long may they continue 

Arthur

User
Posted 16 Nov 2020 at 09:39
Great results mate 👍👍
User
Posted 16 Nov 2020 at 10:42

Fantastic news!!

Ange x

User
Posted 18 Feb 2021 at 15:42

I had my PSA tested last Wednesday 10/2/2021, result today is <0.1. What a relief especially given I coughed up a blood clot a few weeks back and that set off some diagnostics. My chest CT scan is normal so I must have had an infection when I coughed up the blood, all seems ok thank goodness. I had my last PROSTAP 3 injection in January 2019, don't want that again if I can avoid it! Salvage Radiotherapy completed end April 2017.

Stay strong, best wishes to everyone.

 

 

Ido4

User
Posted 18 Feb 2021 at 15:43
Well done! Keep smashing those numbers out of the park!
User
Posted 18 Feb 2021 at 16:20

Ido4 

Good to hear things are going well,apart from the Blood. 

Thanks Chris

 

 

 

Edited by member 18 Feb 2021 at 16:57  | Reason: Missing word

User
Posted 18 Feb 2021 at 16:24
Good news mate. Re your comment on HT I’m still dreading the future as I’m on HT forever now unless it impacts me too much ! But the alternative .....?

Anyway really glad for you , not sure about the blood but I guess a CT would have shown anything up.

User
Posted 18 Feb 2021 at 19:32
Oh that wonderful < sign. Long may it continue

Cheers

Bill

User
Posted 18 Feb 2021 at 21:02

Great news. My husband completed adjuvant RT at Christmas and his first PSA is due next month....I’m starting to feel a bit twitchy.

User
Posted 18 Feb 2021 at 23:13

Lexi, I hope the PSA result is less than 0.1 next month. The twitchiness doesn’t go away sadly. 

Ido4

User
Posted 19 Feb 2021 at 09:59
Great news 👍

Bri

User
Posted 19 Feb 2021 at 10:08

Fantastic news, what a relief for you.  Long may this continue.

Angex 

User
Posted 01 Mar 2021 at 16:46

The plumber, probably best to start your own thread..

Sounds like good news they have found the recurrence and can treat it..

User
Posted 02 Mar 2021 at 00:50
Grays are the dose of radiotherapy - so a man might have 37 fractions (sessions) of 2Gy totalling 74Gy or might have 19 or 20 fractions of 3Gy or 3.2Gy or similar.

It sounds like men who have 20 sessions at 3Gy are getting less than their peers who get 37 sessions but research a few years ago showed that fewer sessions at a slightly higher dose was just as successful but with fewer side effects. Oncologists use either your diagnostic data or their personal preference to decide how many Grays to give you over how many fractions

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

User
Posted 19 Sep 2021 at 14:55

Hi Willyhae, I had salvage radiotherapy after prostatectomy so brachytherapy was never an option. I had the radiotherapy alongside 27 months or so of HT. (Prostap)
This was because my PSADT was 1.2 months.

As others have said in your thread I haven’t heard of salvage brachytherapy, might be worth trying to find people who have had this.

Wishing you all the best,

Ido4

User
Posted 28 Sep 2021 at 14:42

Hi ido4,

Great news mate long may it continue and best wishes on the new Grandchild they will soon have you chasing about.

John.

User
Posted 28 Sep 2021 at 14:44
Fab news!
User
Posted 28 Sep 2021 at 18:02

👍Great news

 

Cheers

Bill

Edited by member 28 Sep 2021 at 18:03  | Reason: Not specified

User
Posted 28 Sep 2021 at 21:10

Congratulations on the PSA result and awaited Grandchild. Best wishes for good health to you all.

User
Posted 28 Sep 2021 at 21:19
Double congrats xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Sep 2021 at 07:55

Ido 

Another good result, and congratulations on your other good news.

Thanks Chris

User
Posted 29 Sep 2021 at 15:27
Superb!

Every bit of good news is a lift in these mad times!

User
Posted 29 Sep 2021 at 22:04

Fantastic news!!  A lovely Grandchild to look forward to in 2022 who will bring you so much joy and pleasure.

Ange x

User
Posted 10 Jan 2022 at 16:50
So happy to read that! Now it's time for you to enjoy the great news, both your PSA and your grandson about to come.

And don't forget: parents' duty is educating their kids, grandparents', spoiling them.

User
Posted 10 Jan 2022 at 22:58

Happy for you on both counts

User
Posted 10 Jan 2022 at 23:18

Ido4 

Great news , best wishes for the future. 

Thanks Chris

 

 

User
Posted 11 Jan 2022 at 00:02
👏🥳
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jan 2022 at 08:07
Brill
User
Posted 11 Jan 2022 at 09:21
Excellent, long may it continue

Cheers

Bill

User
Posted 11 Jan 2022 at 18:34
Great result 👍
User
Posted 08 Jul 2022 at 19:50
Really pleased for you mate apart from the obvious. Glad you had a good break too ! Keep on enjoying life more each day 👍
User
Posted 08 Jul 2022 at 20:23

Idol, all sounds to be going well, let's hope it continues. 

Thanks Chris 

User
Posted 08 Jul 2022 at 22:22

Glad to read you! Everything seems to be going pretty well!

Congrats on your PSA, on your lovely wife, on your having become a happy grandpa - wellcome to the club- and on your holiday in Mallorca. 

User
Posted 08 Jul 2022 at 23:14

Great news with your latest PSA. Hopefully you can get the bowel problems sorted soon aswell. Keep enjoying the holidays and the grandad duties.

User
Posted 08 Jul 2022 at 23:53

Well done.

Dave

User
Posted 09 Jul 2022 at 03:59

It's our duty, Ido.

I've already spoilt five of them💪

User
Posted 09 Jul 2022 at 08:33

Fantastic news on PSA and 5 years since salvage RT.

I just read through this fascinating thread, I hope you can get the bowel problem sorted and crack on with enjoying life.

Good luck, 

Kev.

User
Posted 09 Jul 2022 at 09:43

Great news  - long may it continue and more holidays! .  Have fun with your grandchild, grandchildren are so special.

Arthur

User
Posted 09 Jul 2022 at 10:13

Great reading your update Ido4.   Keep enjoying happy times with your lovely Grandson and all your family.  Hope you can get your bowel problems sorted soon.  Best wishes.

Angex

User
Posted 10 Jul 2022 at 13:42

Ido4,

Looking good lets hope they can sort your big end out mate.

Regards John &Pat.

User
Posted 10 Jul 2022 at 18:52

Hey Ido4,

Have followed your brilliantly documented story these last 6 months,  Love your positive attitude. Wishing you all the best.

Jamie.

User
Posted 04 Oct 2022 at 15:21

Update time. My latest PSA tested on 28/9/2022 is still undetectable at <0.10.

Very happy with that. I finished hormone therapy in Spring 2019 after salvage radiotherapy in March/April 2017 and prostatectomy July 2015.

 

Ido4

User
Posted 04 Oct 2022 at 15:29

Hi ido4,

Great results long may it last.

Regards John.

User
Posted 04 Oct 2022 at 15:35
👏👏👏

Glad to read that.

My OH's current treatment is similar to the one you had. On HT now. Crossing fingers at next PSA in November. Last one was 0.04.

Best wishes to you and every guy here.

Lola

User
Posted 07 Oct 2022 at 17:49
Great results Ido4

Keep kicking its a**e

Bri

User
Posted 09 Oct 2022 at 20:20
Well done! Not been on the forum for a while so it is nice to come on and see some good news!
User
Posted 09 Oct 2022 at 21:29
Hi Ido that’s really good news and very pleased for you. You’ve just jogged my memory that my next psa is in 10 days time. I do 4 monthly now. Funny but I’d forgotten about it believe it or not. Fingers crossed and may your health continue 👍👍
User
Posted 09 Oct 2022 at 22:00
👍thumbs up to another good result ido4

Cheers

Bill

User
Posted 04 Apr 2023 at 19:31

Ido4, great news on the PSA, hope you get the bowel sorted.

Thanks Chris 

User
Posted 04 Apr 2023 at 19:36
Nice one and best wishes / good luck 🤞
User
Posted 04 Apr 2023 at 23:32
Great news on the PSA.

Hope you get to see someone soon on the bowel issues x

User
Posted 01 Sep 2023 at 16:24

Some physicians go like "Let's wait and check PSA again and see how it's going". Be watchful. When my hub got PSA 0.2 , two or three years after RP, that was just what the urologist said. Thankfully, a different urologist saw him the following appointment. At that moment PSA was over 0.3 and he was referred to onco. Then given PSMA PET SCAN, two spots clearly located,  therefore easier to fight them. He was put in HT and given RT. 

Still in HT . Last PSA this week 0.01

Next appointment with both onco and uro in 2 weeks.

Good luck.

 

 

 

User
Posted 01 Sep 2023 at 16:39

Thanks for the info. I'll keep that in mind.

User
Posted 09 Sep 2023 at 14:51

Hi ido4,

Great results long may it last, sorry i have never heard about the other result.

Regards John.

User
Posted 20 Dec 2023 at 11:10

Thanks Chris. This will be my fifth colonoscopy, I’m dreading the prep, dabbing certainly helps!

 

Ido4

User
Posted 20 Dec 2023 at 18:09

That’s what I like about this forum…we always seem to get to the bottom of it!

Really pleased your PSA is <0.1…I live in Hope that one day I will get that magic < sign in front of my 0.1.
I hope you get your bowel issues sorted🤞

Derek

Show Most Thanked Posts
User
Posted 01 Mar 2017 at 20:14
Hi Ian

I had my op the month after you and had salvage RT ending in June 2016 but have not had HT.

I had no real problems with the RT itself apart from the feeling that my bladder often felt as though it needed emptying when it didn't. To be fair I had urinary incontinence following the op which when it cleared up left my bladder more sensitive. In the past 3 weeks I have had some bowel discomfort which may or may not be as a result of RT but I am seeing the onco in 2 weeks for a 6 month update. My PSA before the RT was 0.5 and the PSA test in Sept was 0.6. I am having a PSA test next week and will get the result when I see the onco but as they say it can take 18-24 months to reach a PSA nadir it is possibly too early to come to any conclusion. To sum up - I had no real problems with RT and am still waiting to find out if it was successful.

I am happy that it was done and have too say that I can't bring myself to worry about the result as between us we will live with whatever happens and carry on enjoying what life has to offer. Hope all goes well for you.

Kind regards

Kevan

User
Posted 02 Mar 2017 at 13:59

Hi Ian
I had Salvage RT 1n 2011
No problems whatsoever. No side effects.
In fact I quite enjoyed the attention I got from the radiographers and I was almost
sorry when I had my last session. They are very discreet and there was no embarrassment
at all.
Had haematura last year ( maye slight long term damage from RT or just broken veins in bladder)
Had cystoscopy . All clear.
Once again no problem, it has not recurred
I am not on any drugs.
All The Best
Ray

User
Posted 03 Mar 2017 at 08:57

Hi I had follow up RT in 2013 and sailed through it. My routine was hospital first thing. Drink the water to fill the bladder. Two minutes RT then off to work for the day. Don't recall any side effects as such

Going for my latest PSA in two weeks. Last one in October was 0.02

Bri

User
Posted 08 Mar 2017 at 20:18

Thanks for the reply Kevan, I just found it tonight for some strange reason! I had a planning scan last Friday 3/3/17 and am meeting my oncologist again soon to discuss results before deciding whether to proceed with RT. If I decide to go ahead RT will start 28/3/17.

My PSA has dropped from 0.7 at the end of November to 0.1 as a result of HT which will continue for now too.

One thing I would like to know is the area that you had RT over, did it include the seminal vesicle sites?

Hope all is well with you, kind regards, Ian.

Ido4

User
Posted 08 Mar 2017 at 20:23

Thanks for the reply Ray, I had a planning scan 3/3/17 and will meet with oncologist again to discuss results and whether to proceed with RT starting 28/3/17. I am a scientist so like to make well informed decisions but am overwhelmed by the different information out there.

I am trying to balance my desire to try for a cure against the possible toxic side effects like the haematura you describe and bowel issues.

It isn't an easy decision and today I find myself being a bit low about all of this but I will pick myself up and make a decision soon. Hope things continue to be good for you, Ian.

Ido4

User
Posted 08 Mar 2017 at 20:27

Thanks for the reply Brian, your PSA in October was amazingly low. We don't seem to have the sensitive PSA test in the Edinburgh area yet, still to one decimal place so 0.1 is the lowest detectable. Can I ask when you had RT did the radiation target seminal vesicle areas or just the prostate bed? One of the two tumours I have is in a seminal vesicle remnant and it is this area the oncologist is worried about due to potential bowel toxicity. I sincerely hope your next PSA is still as low. Best wishes, Ian.

Ido4

User
Posted 08 Mar 2017 at 20:56
Hi Ian

As far as I know it was just the prostate bed that was targeted.

I am seeing the oncologist on Monday 13th March to get my latest PSA result so am a little apprehensive. I will try to remember to post the outcome.

Kind regards

Kevan

User
Posted 08 Mar 2017 at 21:31
Thanks Kevan,

I think the seminal vesicle area is the problem for me in terms of higher possibility of serious side effects. Difficult decision .....

I will be thinking of you on Monday, hope it is good news for you.

Kind regards, Ian

Ido4

User
Posted 08 Mar 2017 at 22:30

Originally Posted by: Online Community Member

Thanks for the reply Brian, your PSA in October was amazingly low. We don't seem to have the sensitive PSA test in the Edinburgh area yet, still to one decimal place so 0.1 is the lowest detectable. Can I ask when you had RT did the radiation target seminal vesicle areas or just the prostate bed? One of the two tumours I have is in a seminal vesicle remnant and it is this area the oncologist is worried about due to potential bowel toxicity. I sincerely hope your next PSA is still as low. Best wishes, Ian.

 

Apparently scientists have concluded that the ultra-sensitive test is unreliable. Our hospital has completely stopped doing them now. However, if your hospital offers results to one dp, they should be reporting whether your PSA was actually 0.1 or whether it was <0.1 - you will know better than most how significant that sign is. 

 

The sv area is within the prostate bed. 

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

User
Posted 09 Mar 2017 at 07:37

Thanks, I understand that my PSA was <0.1 for the first 9 months after surgery but 13 months later it was 0.3 and then by November it was 0.7. You are correct in pointing out the significance of my latest reading which was 0.1 so I guess it could be anywhere between 0.1 and 0.14 so definitely not zero but I am hoping the HT brings it down to <0.1.

My understanding is that SV is any radiotherapy delivered after primary treatment e.g. radical prostatectomy. It is generally delivered to the prostate bed but can be adjusted to hit seminal vesicles and lymph nodes but this is less common I think.

I would really like to hear from anyone who had SV to the prostate bed and the seminal vesicle ares at the same time and how it worked out for them. There are so many confusing and different opinions on whether this is a good option or not.

I would dearly love to be cured but realistically not at any cost in terms of quality of life.

 

Best wishes, Ian

Ido4

User
Posted 28 Mar 2017 at 16:59
An update on salvage radiotherapy. My oncologist was happy with the planning scan and I have gone ahead today with my first treatment after he went through the details of the plan. 19 to follow. He is targeting the prostate bed and the seminal vesicle remnant where one of my tumours is. I am nervous about this but also hopeful that my recurrent prostate cancer can be dealt with despite my oncologist being highly suspicious of microscopic metastasis. I will remain on HT for two years after the RT with PSA readings taken every three months. Best wishes to all. Ian.

Ido4

User
Posted 28 Mar 2017 at 17:43

i have seminal vesiccle invasion,when i was having rt i asked the radiographer if my sv were targeted and she said yes,that was in 2014,so far so good.

User
Posted 28 Mar 2017 at 18:41

Thanks for the reply radar, sounds like this worked out for you so far. How did you fare with side effects?

Ido4

User
Posted 29 Mar 2017 at 09:02

ido4,ok so far no problems except my willy is a bit fragile,and some constipation now and again which laxido sorts out.good luck.

User
Posted 30 Mar 2017 at 21:32
Hi All, I am three treatments in out of 20, each dose is 2.75 Grays(55 in total). I am finding today I am passing water from my rectum and feel very windy. Any advice would be greatly appreciated. I will mention it when I am at the hospital tomorrow for treatment 4. I hope this isn't a bad sign, Best wishes, Ian

Ido4

Ido4

User
Posted 30 Mar 2017 at 22:26
This happened to me a couple of times and I found that a couple of digestive biscuits and some dry toast seemed to sort it. Had the problem in the evening but it had disappered by the morning. As you say, mention it to your team and they will advise you if medication is required but I think most people will have experienced this once or twice.

All the best.

Kevan

User
Posted 31 Mar 2017 at 08:54

i,found low fibre helped me with gas.

User
Posted 01 Apr 2017 at 11:01
Thanks for the information Kevan, hope all is well with you.

Ido4

User
Posted 01 Apr 2017 at 13:07
Hi Ian

Had my first Prostap injection yesterday so having had the op and the RT thought we would give HT a go.

Feeling really good today and have been out for a run on the bike over the Marlborough Downs in this lovely weather.

Hernia op on the 13th and then I am sorted hopefully.

Really hope that the RT will go ok for you. Keep us posted 😎

Kevan

User
Posted 01 Apr 2017 at 17:15
Hi Kevan,

I will keep you posted on the RT. I am also on PROSTAP and will be for at least two years post RT. I have found for some reason I am getting more hot flushes having changed from the 4 week injection to the 12 week one. Otherwise I find the HT ok.

You are quite right to enjoy the lovely weather today. I have been out for a walk and it is glorious, uplifting for the soul!

Hope the HT goes ok for you.

Best wishes,

Ian

Ido4

User
Posted 03 May 2017 at 15:41
I thought I would post an update on my salvage radiotherapy. I finished the last of my 20 sessions last Wednesday 26th April with 55 Grays bring targeted at the Prostate bed and the seminal vesicle remnant with active cancer. I have coped surprisingly well so far but feel pretty tired and am having bowel issues in terms of urgency. I am using Fybogel to calm this aspect down. I find I need to go to the loo multiple times before I begin to settle down. I am managing to go out but am trying to time it so that I am not cuaght out. My next PROSTAP 3 injection is on 18th May and I will continue on this for two years post radiotherapy I believe.

I am trying to visualise the cancer has gone and hope that in two years time my PSA will stay down after HT stops.

My body has been hammered with laparoscopic radical prostatectomy, HT and now radiotherapy in a period of about 21 months. I am trying to remain positive and to that end have managed to get travel insurance and have booked flights to Canad in July to see our eldest son who is working in Calgary for a few months. Something to really look forward to which is really important for all of us in our situation. You are all amazing people and this site is so useful. I would find life much more difficult without it as well as my family and friends too of course. Best wishes, Ian.

Ido4

User
Posted 03 May 2017 at 18:29
Hi Ian

Lovely feeling when you have finished the RT isn't it. Another step along the road completed so fingers crossed for a good result.

Good on you for booking your trip to Canada and I hope that you will enjoy it and have a relaxing time.

I have only had one Prostap injection so far which has been fine but I am 3 weeks post hernia op so am just very frustrated at not being able to get on with the garden at the moment. The surgeon said that the hernia op was a bit more difficult as a result of the salvage RT as it damages some of the tissue as it passes through which makes some of it thicker. Anyway, three more weeks and I should be back to normal.

Glad things have not been too bad for you. All the best for the future.

Kevan

User
Posted 03 May 2017 at 19:08
Hi Kevan, it is really good as you say when RT finishes, not least the driving into hospital every day and filling your bladder in preparation. I am really hoping that it has been fully successful. I am not surprised your hernia op was made more difficult as the radiation damages a whole range of tissues as it passes to the target area. The rotation of the machine helps to minimise this. I am sorry you are frustrated that you cannot do some of the things you want to and hope you recover well and get back to normal soon. Here's to a good summer!

Best wishes, Ian.

Ido4

User
Posted 05 May 2017 at 17:58

A quick update, I had my PSA measured on Tuesday and it is <0.1 which is good news for now but it is very early days.

I don't have PSA testing to three decimal places that would appear to be the norm elsewhere so who knows how much below 0.1 it is.

My PSA doubling time was between 1 and 2 months so the oncologist has repeatedly suggested that there are microscopic mets in addition to the local recurrence the RT has hit. Time will tell. At least for now the number is very good, long may that continue.

Ido4

User
Posted 05 May 2017 at 18:45

Ido4, ultra-sensitive PSA testing seems to have been brought into disrepute and our hospital has put a halt to all PSA tests at smaller than 1dp. Hard for us to get used to as John has had 7 years of ultra-sensitive but I am comfortable that as long as it stays less than 0.1 we should assume all is okay.

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

User
Posted 05 May 2017 at 20:33
Thanks Lynn, that is useful to know. <0.1 seems like the best place to be. Long may it continue.

Best wishes, Ian,

Ido4

User
Posted 19 Jun 2017 at 09:00
I am now nearly 8 weeks post salvage radiotherapy and wondered if anyone knows when it is sensible to start using supplements etc again? Before the salvage treatment I was drinking pomegranate juice every morning, drinking green tea, taking vitamin D3, talking a calcium/zinc supplement and taking selenium. I was told to stop all these as they also protect the cancer cells the radiation was targeting.

I am going to phone an onco nurse but I know many on this forum have a really good knowledge and understanding of those type of questions.

I also note that I have become a bit incontinent again especially when tired, seeming to become a bit leaky between 6 and 8 p.m.

I was OK a month or so after surgery so this is a bit of a shock. Also I am up to the toilet a few times every night due to bladder irritation. Hopefully these side effects will settle again given time.

Still being on HT Is Adding to the tiredness.

Best wishes to all, Ian.

Ido4

User
Posted 14 Aug 2017 at 14:11

I thought I would update on my progress and get the view of the wider experience on the online forum. I finished salvage radiotherapy 26/4/17. My PSA <0.1 on 2nd May 2017 and again 1st August 2017. Prior to this my PSA doubling tome was around 1.2 months and started rising approx. 1 year from surgery.

My neutrophill count was 0.85 on 2nd May and is now 1.1. I saw a different oncologist from the one I usually see today. He is happy that the PSA is undetectable(as am I) and is unperturbed by the low neutrophil count.

Since my PSA return was early and the PSADT rapid I asked his view on early chemotherapy given that my previous oncologist said that the quick return and rapid rise in PSA almost certainly meant I had metastasis but it wasn't big enough for scans to pick it up, particularly since the resolution of the PET scan is a minimum of 5mm. He told me that since the PET scan I had last December was negative for any spread (my PSA at the time was around 0.8) that he didn't think any further treatment was necessary or desirable. I will remain on HT (PROSTAP 3) until the end of April 2019.

I will be so happy if this salvage radiotherapy has cured me but worry that if I have microscopic metastasis that by the time this is picked up chemo won't be as efficient as it would be earlier. That said I don't want to unnecessarily intervene for the sake of it having read some of the problems fellow sufferers have had during and after chemo.

Shall I just accept this advice and hope that I am cured or should I seek a second opinion? I really don't know what to do for the best.

Your views and advice on the above would be very welcome. 

Ido4

User
Posted 14 Aug 2017 at 14:42

Firstly lets assume the best and say that there are no metastases. Having chemo in that situation would be madness, no gain and lots to lose.

Now lets assume the worst and say that there are metastases. In that case the PCa is incurable (just like mine). Chemo can only slow the PCa up a bit. However, your PSA indicates that any metastases are still very small. Not much there for the chemo to attack. Therefore, little gain and lots to lose.

The decision therefore seems to be simple. Don't do chemo unless and until PSA changes indicate it is necessary.

User
Posted 14 Aug 2017 at 14:52

I think you've been really brave and tackled it head on. You've more or less done all you can for now I think. Oncologists around the country treat things differently but I feel you've had good advice. Click my picture and read my profile. Sort of similar to you I think although my psa post surgery was instantly high and racing. They are so convinced I have mets that I've refused the RT. They said I was off the cure path with my lymph node involvement. I'm not even back on HT thankfully and in very good health. We're going to wait till psa around 20 and then re-try PET scans etc. I'm not in denial but living life to the full off treatment rather than maybe going bananas with stress having it. I've been working as a Healthcare Assistant at an old folks nursing home for the last four months and it has been giving me an immense amount of satisfaction in my retirement. My wife says it's an unbottled talent we didn't know I have.
I hope you can relax a bit now and enjoy your time without worrying about psa. You've done good !!!

User
Posted 14 Aug 2017 at 15:39

Thanks for your very logical and sensible reasoning, my head gets so messed up with trying to decide on the right course of action.

Let's hope there are no nasty little micro sods around and that I can have a period of relative stability. With the progression of the disease so soon after surgery and the pathological findings showing intraductal cancer as well as an adenocarcinoma tumour which had breached the capsule  I can feel very unsettled. I am sure that isn't unique to me. My PSA was probably around 0.8/0.9 before I started HT last December and my oncologist couldn't equate the size of the tumour on my prostate bed and the tumour in a seminal vesicle remnant producing so much PSA hence the worry.

I just ultimately want to make sure I've done everything I can to stop this horrible monster.

i hope you are continuing to improve after the pneumonia, Ian.

 

Ido4

User
Posted 14 Aug 2017 at 16:01

Thanks Chris, your story has many similarities. It is unbelievably disappointing when the surgery fails, I can't describe how dark I felt when I received the news. I was initially told in January I was incurable and that RT was off the table. I asked for a second opinion and three oncologists met to discuss my case. Apparently they do this sort of thing routinely on each Tuesday lunch time. The decision was to proceed with RT and that the chance of success in curing me was around 40%. Like you my PSA was rising rapidly but after a period of being undetectable (It was undetectable on 1/6/16 and then 0.3 1/9/16, 0.4 8/9/16 and 0.7 around 22/10/16). I had the surgery 23/7/15.

I admire your take on things and coming off treatment if and until your PSA reaches a pre agreed point. I think the choline F18 or C-11 scans seem to be unable to see a lot until PSA reaches about 20 so that seems sensible. That said I had a Choline F18 PET/CT scan last December when my PSA would be around 0.8 or so and it picked up tumour activity on an SV remnant but I think it did that because the tumour was very metabolically active. I had a prostate bed tumour picked up on a Gadolinium enhanced MRI scan last October which didn't really register much on the PET/CT scan as it was not very active metabolically.

I am now suffering increased side effects but generally they are very manageable and other than fatigue I feel well.

I return to my job as a head of science at a secondary school tomorrow (I teach Physics) so we will see how juggling a demanding job and fatigue goes!

I am so grateful that this forum exists and has many knowledgeable and supportive fellow sufferers and their partners.

Many thanks for your comments about next steps and keep in touch re how you are doing too.

Best wishes, Ian.

Ido4

User
Posted 14 Aug 2017 at 16:02

Originally Posted by: Online Community Member

the pathological findings showing intraductal cancer as well as an adenocarcinoma tumour which had breached the capsule

Intraductal cancer. I'd hadn't heard of this before so I've just googled it. I'd assumed you were adenocarcinoma only just like me. I am now not confident of the advice I gave above. This is one for the specialists and I think you should follow their advice, not mine.

User
Posted 14 Aug 2017 at 16:18

Thanks Col, yes it throws a spanner in the works as it is quite rare but tends to behave aggressively and not throw much PSA out. I was told my prognosis is worse because of it's involvement but the urologists couldn't quantify how much worse.

I will seek further advice,.

best wishes, Ian.

Ido4

User
Posted 14 Aug 2017 at 16:39

It depends whether the intraductal was invasive or non-invasive. Generally, intraductal PCa recurs very quickly after RP and does not respond well to radiotherapy so the fact that you have achieved & maintained an undetectable score since then may suggest that the rising PSA was being generated by adenocarinoma rather than the ductal.

Is it likely that you will see the original oncologist at your next review? I would want his take on what difference the ductal carcinoma might make, particularly as some ductals do not generate high PSA.

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

User
Posted 14 Aug 2017 at 18:05

Thanks Lyn, I'm not sure if the intraductal spread was invasive or non-invasive, I will see if I can find that out. I wasn't told at the time of the surgical review, they just said that it made my prognosis worse, more unpredictable and raised the chances of recurrence. They also mentioned a tendency for this type of cancer to be more aggressive and suggested that moved me from a Gleason 7 to at least an 8. The appointments I get say you can be seen by any of three oncologists. I'm not sure if I will see my original oncologist in February. He has said in the past that surgery was the right first choice for me as the intraductal cancer doesn't respond well to radiotherapy as you have also pointed out. It also disguises its presence by not throwing out much in the way of PSA. Despite having adenocarcinoma and intraductal cancer my PSA was around 7 or 8. I hope I can take comfort from the fact that the PSA is undetectable after radiotherapy and continued hormone therapy. Do you know if intraductal cancer responds well to other treatments?

Ido4

User
Posted 14 Aug 2017 at 19:14

There have been some good results from docetaxel but I think the jury was out on other forms of chemo. The last research paper I read indicated that even if ductal PCa is identified at biopsy, surgery should be first choice if it is still possible. The blessing in your case was that you had both cancers, I think, as it meant you were diagnosed rather earlier than men with purely ductal would normally be.

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

User
Posted 14 Aug 2017 at 19:17

Are you on 6 monthly appointments???

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

User
Posted 14 Aug 2017 at 19:34
Yes, I agree that I was fortunate that the ductal cancer was alongside "normal" prostate cancer as I believe some poor guys discover things too late and too advanced when it is purely ductal due to the lack of PSA it produces. I would seem to be on six monthly appointments just now. What are your thoughts on that?

Ido4

User
Posted 14 Aug 2017 at 23:00

Everyone is different, aren't they? John has been on 3 monthly testing for nearly 8 years and I think we would both be nervous leaving it 6 months - however, he hasn't always seen the urologist or oncologist every time. Others here have found that 3 monthly appointments & testing means there is no real respite from PSA anxiety and so 6 monthly works better for them. Others have the test 3 monthly and an appointment (real or by telephone) every 6 or 12 months and I can think of members who never saw their surgeon again after the op, getting any aftercare solely from the GP.

You should do whatever gives you peace of mind.

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

User
Posted 15 Aug 2017 at 05:21
I know what you mean. I never saw my surgeon again after surgery. I should have pointed out that I am testing my PSA every three months and seeing an oncologist again in six months. Like you and John I couldn't cope with having PSA tests at six month intervals at this point. Especially since my reading was undetectable in June 2016 and then 0.3 three months later. It would have gone from undetectable to around 0.9 or even 1.0 over six months and introduced further delays and doubt over any salvage treatment. Best wishes, Ian.

Ido4

User
Posted 23 Apr 2018 at 12:09
I thought I would post an update on how things are going. My profile should be up to date.

I had a bone scan and pelvic MRI in February and March respectively.

Bone scan is clear and MRI shows no signs of further recurrence.

A polyp or slight thickening of the rectal wall was picked up so I have the joy of a sigmoidoscopy to look forward to.

My PSA remains <0.1 i.e. undetectable.

I saw my consultant oncologist today. He is happy with the way things are going. I have a bit of weeping from my back passage at times so was told to cut the fibre down a bit.

He has changed his tune slightly on HT. Initially he wanted me to stay on HT until the end of April 2019 which would be two years after radiotherapy finished.

He now wants me to come off HT next January which will give me two years total on it.

He is keen to find out if radiotherapy has worked or I do indeed have micro metastasis.

He said if the radiotherapy has worked it will make his day, I told him it would make my life!

I see him again in six months and would appreciate any thoughts about how long I should stay on HT.

Ian

Ido4

User
Posted 23 Apr 2018 at 12:56

That’s mostly good news isn’t it !! You know my views and I know they are different from most people’s. The less time on HT the better I reckon. I think I’m right in saying that the HT isn’t a curative element whereas the RT was ?? Depends whether QOL is important to you. I’m three years post op nearly and only accepted 11 months Bical HT. My psa is now over 24 and I’m having a really good life with scans showing nothing. Running the gauntlet maybe but I want to enjoy life to the full. I’m scared of dying but I’m more scared of not living

User
Posted 23 Apr 2018 at 20:20
Thanks Chris. Yes, I know your views and I admire your steadfastness in what you’re doing.

The RT was a final curative attempt with a 40% chance quoted of success.

As you have said the HT isn’t curative. Whilst I am looking for an improvement in QOL I also want to give the HT a chance to help things along as a combination of HT/RT seems to give better control.

Time will tell.

Hope things are ok with you, are you getting any scans soon?

All the best, Ian,

Ido4

User
Posted 23 Apr 2018 at 20:24
“Posted 14 August 2017 16:39:56 by LynEyre

It depends whether the intraductal was invasive or non-invasive. Generally, intraductal PCa recurs very quickly after RP and does not respond well to radiotherapy so the fact that you have achieved & maintained an undetectable score since then may suggest that the rising PSA was being generated by adenocarinoma rather than the ductal.

Is it likely that you will see the original oncologist at your next review? I would want his take on what difference the ductal carcinoma might make, particularly as some ductals do not generate high PSA.”

I asked today if my intraductal cancer was invasive or non invasive. The oncologist seemed puzzled by this question saying “all cancers are by their nature invasive” and Ducati cancers behave significantly more aggressively.

I am non the wiser!

Ido4

User
Posted 23 Apr 2018 at 20:25
Isn’t predictive text marvellous? It changed ductal to Ducati!

Ido4

User
Posted 23 Apr 2018 at 20:33

Hi Ian I can’t have routine scans again till September. My psa then is expected to be 96 !
I have repeat bloods June , where my psa is expected at 48. Not sure if they will want to act then but they’ll have to wait as I have 2 holidays booked :-) ......
I think I’m a way I’ve rocked their protocol by refusing RT. They said themselves it would be non-curative but I guess they can’t go throwing thousands of pounds at me until they have sure proof of advanced diagnosis. Keep well

User
Posted 24 Apr 2018 at 00:11

Sorry Ido, invasive or non-invasive means whether the cancer has spread from the ducts into neighbouring tissue or it hasn’t. So I think what I was asking you last year was had the ductal cancer stayed in the ducts or had it moved into the prostatic tissue where the adenocarcinoma was?

I think it is probably irrelevant now anyway; the prostate was removed and hopefully all the ductal went with it leaving you only some bits of adeno to be zapped and starved :-)

This might help - p141 https://onlinelibrary.wiley.com/doi/pdf/10.1111/iju.12657

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

User
Posted 24 Apr 2018 at 08:29
Thanks Lyn, i think you’re right that the invasive/non-invasive question is irrelevant now.

I will have a look at the link.

Ian

Ido4

 
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