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Salvage radiotherapy

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 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 23 Apr 2018 at 11:56

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

If life gives you lemons , then make lemonade

User
Posted 01 Apr 2017 at 16:15
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 05 May 2017 at 17:45

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 19:33

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

If life gives you lemons , then make lemonade

User
Posted 08 Aug 2018 at 18:06
Scores on the doors good. Long may it continue!

If life gives you lemons , then make lemonade

User
Posted 08 Aug 2018 at 20:33

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 20:53

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 21:20

Fantastic!!

Long may this continue!!

P

User
Posted 09 Aug 2018 at 08:09
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

If life gives you lemons , then make lemonade

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.

If life gives you lemons , then make lemonade

User
Posted 03 Jul 2019 at 17:03
Great result. Keep at it

Bri

User
Posted 03 Jul 2019 at 21:27
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 16:35
Good news, keep that going and enjoy the success.

Ray

User
Posted 04 Jul 2019 at 18:21
Good news. You’ve thrown everything at it for sure so here is hoping all the best for you.

If life gives you lemons , then make lemonade

User
Posted 04 Jul 2019 at 20:56

Great news, hope it continues.

Thanks Chris

User
Posted 09 Jul 2019 at 08:15
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 13:15
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 14:02

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 14:59  | Reason: +

User
Posted 07 Aug 2019 at 14:57
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 11:11
Great news. Looking good all round

If life gives you lemons , then make lemonade

User
Posted 09 Oct 2019 at 17:55
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 !

If life gives you lemons , then make lemonade

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 17:50

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 14:08

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 14:13  | Reason: Not specified

User
Posted 04 Jul 2020 at 17:46

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.

If life gives you lemons , then make lemonade

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.

If life gives you lemons , then make lemonade

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 16:42

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 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..

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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 15:59
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 16:43

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 17:41

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 08:02

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 20:32
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 21:26
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 07:54

i,found low fibre helped me with gas.

User
Posted 01 Apr 2017 at 10:01
Thanks for the information Kevan, hope all is well with you.

Ido4

User
Posted 01 Apr 2017 at 12:07
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

 
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