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Rising PSA post RP

User
Posted 18 Jul 2017 at 14:09
Had RP surgery in March 2015 at 69 years of age... Gleason 4 + 3.

No major worries post op, incontinence never a problem thank goodness and was informed by the surgeon that the cancer was localised.

Initial PSA readings were good, but after 15 months the dreaded 0.2 reading was shown. Now, 14 months later, this has increased to 0.3. Naturally worried and a 2nd bone scan has been ordered (the 1st bone scan a year ago showed nothing sinister).

Consultant also concerned at this increase, but nothng will be done until the result of the 2nd bone scan is studied by the Consultant and his team.

Not coping with emotionally at this time. My wife has a chronic illness and I am very much needed around the home, but we can't seem to talk about the seriousness of my illness. Surprising really considering we've been married for over 51 years.

David H





User
Posted 04 Mar 2018 at 12:14

It varies so much doesn’t it? John was on 3 monthly until about 4 years post SRT because it was never quite stable but the plan last year was to go to 6 monthly tests .... and then we got the 0.1 and 0.11 so Mr B decided to stay with the 3 monthly monitoring. Others here that have had stable undetectable post SRT seem to go to 6 monthly in three to 5 years post SRT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Jul 2017 at 21:33

Hi, Kevan -

Again, a big thank you to a fellow prostate profesional. It really is reassuring receiving Posts from guys who know the feelings and emotions one is experiencing as this illness does its best to destroy us. I'm certainly not an expert and maybe internet surfing on the subject does sometimes tend to be an explanation too far. But yours and the Auld Codgers words and advice have really heartened me and I'm really appreciative. If you don't mind, I'll update you as and when there are developmemts on my ongoing treatment. Fingers crossed.

Good luck in all of your future PSA tests as well, of course.

David

User
Posted 12 Dec 2017 at 16:49
Thanks, Kevan and I do hope that your post Xmas appointments are positive and that the New Year starts off on a postive note for you. The Season’s Greetings to you and your family.
Show Most Thanked Posts
User
Posted 18 Jul 2017 at 17:03

Hi David, whilst not minimising what you report, there are lots of treatment options available if, as seems likely, the PCa has escaped the prostate capsule. Even if the skeleton is affected, that remains true. I'm sure you'll get good advice from your consultant on next steps and find that you cope with the next ten years or so very well whilst undergoing that treatment. Be reassured - what you have is serious but not life threatening.

Good Luck.

AC

User
Posted 19 Jul 2017 at 13:36
Thanks, AC - it was extremely reassuring getting your Post and, hopefully, you seem to know a lot more about these things than yours truly. Must keep telling myself and especially whilst I still feel in reasonably good health ... LIVE FOR TODAY!! My sincere thanks once again ...
User
Posted 19 Jul 2017 at 17:46
Hi David
8 months post op my PSA had risen to 0.5 so I had salvage RT. The first PSA test post RT was 0.6 and six months later was 1.2 so I started on 12 week Prostap HT injections. Three months after the first injection PSA is undetectable.
I only tell you this because as the very wise Auld Codger has said there are many options available. I found that the onco was very helpful in that he explained what they thought was going on and how various treatments could work but we didn't do any scans because he believed that although the cells were out there somewhere it was most unlikely that they would show up at this stage.
As for the HT - well see the nurse every 12 weeks for an injection so no problem there. Very early days yet but only side effect I have had so far is the occasional hot flush which I reckon to be a fair exchange for an undetectable PSA.
Hope all goes well for you.

Kevan
User
Posted 19 Jul 2017 at 21:33

Hi, Kevan -

Again, a big thank you to a fellow prostate profesional. It really is reassuring receiving Posts from guys who know the feelings and emotions one is experiencing as this illness does its best to destroy us. I'm certainly not an expert and maybe internet surfing on the subject does sometimes tend to be an explanation too far. But yours and the Auld Codgers words and advice have really heartened me and I'm really appreciative. If you don't mind, I'll update you as and when there are developmemts on my ongoing treatment. Fingers crossed.

Good luck in all of your future PSA tests as well, of course.

David

User
Posted 19 Jul 2017 at 22:24
Hi David

Please keep us posted about how things go. Everyone on this site is so helpful and willing to offer support as well as their own experiences that might be relevant.
I just take it a step at a time and am still loving life.

Take care

Kevan
User
Posted 03 Aug 2017 at 09:59

Hi, Kevan and AC -

Had a bone scan on the 25th July which has come back negative. Informed by the Uro Specialist Nurse today that I am about to receive another appointment letter to discuss ongoing treatment. Any advice you can give me regarding this appointment would be most appreciated.

I do hope that you guys are coping well with whatever this nasty illness Is throwing at you.

Best -

David

User
Posted 03 Aug 2017 at 10:20

They will probably talk to you about salvage radiotherapy. Ask whether you would be suitable for 20 sessions (fractions) at a slightly higher dose rather than the usual 37 sessions of 2Gy. Trials have shown the shorter programme at more Gys to be very effective and it would be easier to manage 4 weeks of treatment rather than 7 weeks with your caring responsibilities at home.

Also ask about your original pathology - did you have any positive margins? Do they believe that these are just a few stray cells left behind in the prostate bed? Where would radiotherapy be targeted?

If they don't think you are suitable for RT (or if you don't fancy it) you may be offered long term hormone treatment instead. HT can't cure cancer but hopefully can control it for quite a long time.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Aug 2017 at 11:32

Hi - once again I am in awe at the help this site is giving me.

Thank you so much for your invaluable knowledge and assistance which will undoubtedly be of great help to me.

Best -

David

User
Posted 16 Aug 2017 at 20:36
Hi -

Saw my Consultant yesterday and, for the first time since my operation in March 2015, I was face to face with my Surgeon who I had had many conversations with pre the operation.

A very personable and humorous man, he quickly put me at ease with the words 'Don't panic'. Yes, my rising PSA was a concern but in his opinion the increase to 0.3 had been slow and that perhaps the best course of action for the time being was to keep monitoring my PSA levels over the next months and years and to then respond accordingly. His words, not mine. My nuclear body scan had revealed nothing sinister to him and his team and whilst Salvage Radiation Therapy was an option for the future, it could not be used at this point in time because where would they target the machine? He thought it might be a good idea for me to see the Oncologist sometime soon to discuss future possible treatments and for me to voice my obvious concerns, too.

So that's where I stand. The meeting was extremely positive as far as he was concerned and I suppose to me, too. When I mentioned possible hormone treatment he said it was much too early to go down that route.

Very soon we were discussing Brexit and asking me what my opinion was. Surreal, but I suppose heartening for me all the same. I think ...

David

User
Posted 16 Aug 2017 at 20:46

Well his stance is certainly unusual. Don't delay too long in arranging that appointment with an oncologist ... if he gives the same advice, fair enough.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Aug 2017 at 20:56

Salvage RT is a debatable thing. A slow rise in psa post op is assumed to be remnants of cancer left in the prostate bed. Many consultants offer RT with no real target. It can possibly cause many side effects but most people get through it ok. However 50% of men who have Salvage RT still get further recurrence. It may buy a bit of time so to speak. Although offered to myself , my psa levels show further spread so I don't want the bother and risk.
Good to see you so positive and best wishes


If life gives you lemons , then make lemonade
User
Posted 17 Aug 2017 at 09:11
My PSA a few days ago and 11 weeks post salvage RT was 0.08. Prior to SRT it had risen to 0.27. My RARP was April 2014. I was not offered any scans prior to SRT despite asking about them this was on the basis that the scans were not reliable at such a low PSA. I questioned whether targeting the prostate bed was just a guess and was told based on a slow rising PSA it was a very educated guess combined with years of experience. Like CJ I had doubts about having SRT but decided to take a chance. Direct side effects have so far been negligible, but it is still early days.

Thanks Chris
User
Posted 12 Sep 2017 at 18:21
First off a big thank you to ALL who have taken the time to give me some sound advice regarding my rising PSA. Most appreciated.

Saw the lady Oncologist earlier today and she is of the opinion that I should seriously consider having SRT which would be aimed specifically at the prostate bed. Apparently, when the PSA rises so slowly, as it has done in my case, then there is every chance that the rogue cells are hiding somewhere in the fatty tissue of the prostate bed. She went on to warn me of all the possible side effects, but she thought that any risk was outweighed by the advantage the radiation sessions would give me in hopefully preventing the possible spread of the illness. So, as things stand and after a night's kip, I think I will opt for the 33 radiation sessions.

Realise I'm just a hospital number, but did come away from today's visit with the thought that all concerned were dong their best to help me.

David

User
Posted 12 Sep 2017 at 21:17
Hello again David
Your situation is so similar to the pathway I went down. My onco said the same about the slowly rising PSA indicating cells in the prostate bed which is where they would focus the SRT. The 33 sessions of SRT went well once I had got into the routine of things and I was able to drive myself on the 94 mile round trip every day. By the last 5 sessions I was a bit tired but nothing drastic.
Now for the down side followed by another brilliant upside - the PSA was higher after the SRT and was still continuing to rise so we then started HT and within three months PSA was undetectable 😎
Hopefully your SRT will do the trick but even if it doesn't I wanted you to know that there are other options. You sound in good spirits and I think that makes a difference.
Plod on my friend and I am sure you will get there.
I have been incredibly lucky. I know that HT will not work for ever but for now life is good.
All the best.

Kevan
User
Posted 12 Sep 2017 at 21:52
Thanks, Kevan and so pleased that all is currently well with your prostate prognosis. Long may it continue.

'Plodding On' was a great way of putting things and I intend to do just that ... only I won't have the problem of a 94 mile daily round trip as my SRT machine is situated more like an 8 mile round trip away. My only fear is incontinence both during and after the SRT sessions, because I consider myself extremely fortunate that I have not had an incontince problem since the RP op was performed some 30 months ago. In fact the waterworks have been in excellent working order both post and pre op.

Onwards and upwards and please stay in touch.

David
User
Posted 12 Sep 2017 at 22:54
The great thing about not having incontinence issues is that they like you to have a full bladder when having the RT as this helps to keep the bladder out of the way, which minimises the risk of causing any damage to it. This was a bit of a struggle for me but the team were brilliant at making things as easy as possible for me. The RT didn't cause me any further RT issues so hopefully you should be fine. You get to meet some great people and some of us still ring each other to check on progress. It's very humbling meeting some of the other patients there and it underlined to me how lucky I have been. As one of the RT team said to me "I bet this experience wasn't on your retirement bucket list"

Kevan
User
Posted 12 Sep 2017 at 22:59

Thanks again, Kevan - the oncologist was making noises about the full bladder when she spoke with me earlier, but obviously I wasn't taking it all in. That's very reassuring ...

David

User
Posted 31 Oct 2017 at 17:38
Hi, fellow Bloggers - at whatever stage you’re dealing with concerning this nasty illness, I hope the prognosis at this time is positive for you. On my front I had blast number 1 of 33 salvage radiation sessions at the local hospital today. Wish me well ...
User
Posted 31 Oct 2017 at 18:27
I finished 20 sessions of salvage radiotherapy in April. Next PSA test on Thursday with next Lupron injection the following Thursday. I found the radiotherapy tiring but otherwise coped really well. I hope the next 32 blasts go well and to the job on this nasty disease. Best wishes, Ian.
User
Posted 01 Nov 2017 at 11:42

Thanks, Ian - good luck on Thursday and on all successive appointments.

User
Posted 12 Dec 2017 at 15:06

I finish my 33 Salvage Radiation sessions on 14th December and thankfully all has gone reasonably well. No serious side effects. Worst thing for me was the full bladder one must have whilst being microwaved by the Halo machine at the local hospital. You’re told to keep still when the radiographers leave the room ready for a blasting, but keeping still when the extreme urgency is telling one that you must pee is certainly easier said than done. Fellow sufferers were, of course, in the same situation and we often shared a smile and a laugh at our predicament. As Kevan told me, you do get to meet some great people during this process and the overwhelming feeling is to wish all and sundry every good wish in their continuing fight against PC. The staff at the hospital were superb and treated everyone with great kindness and professionalism. Thank you. The oncologist has given me a 1st March date to see her next, but she also told me that it would be better if I have my first PSA test, post SRT, in April, when I’m booked in to see the urologist. So, health permitting, I’ll try to stop worrying and enjoy Xmas and the New Year to the full. The same sentiment goes out to everyone who is battling to beat this nasty illness. A Merry Xmas and a Happy and HEALTHIER NEW Year to you ALL.

User
Posted 12 Dec 2017 at 15:36
Great news that all has gone well from your point of view so I will raise a glass to you on the 14th
(but possibly not water).
I hope that you will have a relaxed and peaceful Christmas.
I have a blood test on 2nd Jan followed by the onco on the 8th so we'll see how 2018 kicks off.

Anyway, really chuffed for you as you have done well.

Kind regards

Kevan
User
Posted 12 Dec 2017 at 16:49
Thanks, Kevan and I do hope that your post Xmas appointments are positive and that the New Year starts off on a postive note for you. The Season’s Greetings to you and your family.
User
Posted 12 Dec 2017 at 17:12

Great news that all has gone to plan. You do meet some great people in the waiting room. I remember only too well lying on the treatment bed bursting to wee! The radiologist saying you can go to the toilet and reset. We can treat you slightly later. But no, I was on the treatment bed and I wasn't moving until the blast of radiation was finished, then a mad dash for the nearest loo.


I have my next PSA test 1/2/18 and Lupron injection the same day. I then see my oncologist 19/2/18 so like Kevan, and many others we will wait and see what 2018 brings. Meantime I will also raise a glass to all my fellow PC sufferers.


I hope things go well for you. Ian

User
Posted 12 Dec 2017 at 19:37

Hi, Ian - it seems to me that the longer the SRT goes on the more urgency the peeing bit becomes. My worst experience to date was last Friday. The 4 teams at the Queens Hospital in Romford, Essex were running behind schedule, including the state of the art Halo machine I have been fortunate enough to have used. It was almost an hour behind my appointment time when, on being slid into the machine’s tunnel, I realised I would not be able to endure the 5 or 6 minutes the machine takes to complete a prostate bed blasting. The warning bleep had sounded when I suddenly informed the radiologists that I could no longer hold the waterworks. They aborted the session and I swiftly ran down the corridor to the loo. Fortunately, I did a half wee and on returning my bladder was still full enough for the session to start again. The radiologists had seen it all before and were extremely kind to me, but it had been a close run thing. Phew!

Ditto the good wishes for your important appointments in early February and I too will raise a glass of good cheer to you when you hopefully receive good news.

Merry Xmas and a healthy 2019 to you and yours.

User
Posted 12 Dec 2017 at 19:38

Sorry, that should have been 2018 of course ...

User
Posted 03 Mar 2018 at 22:11

Just back from an extended stay in Spain (10 weeks) with my wife and a thoroughly enjoyable time was had by us both. Returned back in the UK on 28th February and was surprised at the icy conditions - brrrr! after recently experiencing the much warmer climes of the Mediterranean. Saw my lady Oncologist the next day who quizzed me on how I had been since finishing my SRT sessions on December 14. I was pleased to tell her that all had been relatively well with no real problems and, yes, I had over indulged at times and especially so over the Festive period. However, my next big hurdle is when I see my Urologist on 16th April. Prior to this appointment I will, of course, have had a PSA test which will reveal if the SRT has worked or not. Pessimistic me is not feeling over optimistic at the outcome but we live in hope.

However, she did ask me if I might be prepared to take part in a 5-year trial named ADD-ASPIRIN CLINICAL TRIAL. Apparently, a clinical trial is soon to begin where the humble aspirin is administered to PC (+ breast & bowel) sufferers to see if the drug might actually prevent the spread of the nasty illness. Selected PC patients will be given daily one of the following three treatments ... 1 x 30mg aspirin tablet, 1 x 10mg aspirin tablet, 1 x placebo tablet. After reading the accompanying literature I am a little reluctant to go ahead because one of the drugs I must not use whilst on the trial would be Iboprofen, a 400mg daily tablet I take which has helped my with my previous painful muscular problems. The fact that I might randomly and unknowingly be selected for the placebo tablet as an alternative to my Iboprofen is not in the least appealing. I have been informed that I am under no pressure whatsoever to take part in the trial, but being a person who would like to help in any trial then I am a little unsure as to how to proceed.

Any suggestions from anyone out there would be greatly appreciated, but I do realise that it will my decision in the end.

Hope all is as well as can be expected with fellow users on this very worthwhile site ...


User
Posted 04 Mar 2018 at 01:05

The ADD-ASPIRIN trial is not new; it has been running for at least a couple of years and we have a few members here that are either on the trial or their onco has advised them to take aspirin anyway. However, if you are rather dependant on iboprofen then it may not be the trial for you.

Also, don’t expect too much of your April appointment - it will not tell you that the SRT has worked. The radiotherapy will continue to kill the cancer cells for up to 2 years and you should expect to reach your nadir about 18 months after the SRT finished.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Mar 2018 at 07:25

Thanks, Lyn - once again I bow to your superior knowledge. The way the Add-Aspirin trial was explained to me I honestly felt it was a trail blazer. You have also educated me on the SRT. When I asked my Oncologist on 1st March what happens next should SRT have failed, she said they would, of course, continue to monitor my PSA and only if there was a dramatic rise would they then consider possible hormone therapy. As she said, so far it has been rising slowly and the longer they delay the therapy then the longer time it also gives me in combating the illness because, eventually, the cancer cells finds away around the hormone treatment.

User
Posted 04 Mar 2018 at 11:27

Yes - I could have worded it better but didn’t want to freak you out. From now on, each PSA test could tell you that the SRT didn’t work but will not be able to tell you that it definitely did work. In other words, the fail would be obvious but the only proof of success is not failing.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Mar 2018 at 12:03
Hi

How often would you expect to have PSA tests post SRT, one urologist said three monthly another said six monthly. My first two psa tests have been dropping.

Thanks Chris
User
Posted 04 Mar 2018 at 12:14

It varies so much doesn’t it? John was on 3 monthly until about 4 years post SRT because it was never quite stable but the plan last year was to go to 6 monthly tests .... and then we got the 0.1 and 0.11 so Mr B decided to stay with the 3 monthly monitoring. Others here that have had stable undetectable post SRT seem to go to 6 monthly in three to 5 years post SRT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Mar 2018 at 13:52
Hi Chris, I am on three monthly PSA tests post SRT.
Best wishes, Ian.
User
Posted 16 Apr 2018 at 11:11

Hi, All - just a quick update on my situation. GREAT news - I saw the Consultant this morning (yet another expert who I had not seen before), and who gave me the extremely encouraging news that my PSA blood test, taken on 3rd April, had revealed a negative reading because it was now below 0.1 and could not therefore be registered on their machine. If you’ve been following my Posts, you will know that I had 33 sessions of SRT late in 2017 when my PSA had risen to 0.3 post RP surgery in March 2015. Heartened by this I did not press him any further and his final words to me were that I now have an appointment booked with the Oncologist in early October when they will monitor the PSA again. Phew! Hopefully, I will now enjoy the summer which, judging by today’s appearance of the ☀️in my part of the country, might well be with us in the very near future.

I just hope that all users of this worthwhile site will also receive a positive outcome when they have their next meeting with their respective expert.

User
Posted 16 Apr 2018 at 11:44
Hi That is indeed great news for you. Couldn't be better could it? Time to forget about the PCa ( or at least put it on the back burner if you can )
Enjoy the good weather and forthcoming summer.😎.

Husband had his 2nd PSA test following his RARP last week so fingers crossed that's still good before we see the Consultant on 3rd May.


Best wishes
Ann

Edited by member 16 Apr 2018 at 11:47  | Reason: Not specified

User
Posted 16 Apr 2018 at 11:52

Thanks, Ann - I know it’s difficult, especially the waiting for results bit, but I do wish hubby all the best for his 3rd May appointment.

User
Posted 16 Apr 2018 at 15:35

Fantastic news - congratulations

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Apr 2018 at 16:10
Great news. Enjoy the summer.
Ian
User
Posted 16 Apr 2018 at 16:44
Great news!! Now you can relax and enjoy the summer. Really pleased that things are going well for you. I shall raise a glass tonight.🍷

All the best

Kevan
User
Posted 16 Apr 2018 at 16:50
Brill
User
Posted 16 Apr 2018 at 17:48
David

Great news,hope it continues.

Thanks Chris
User
Posted 16 Apr 2018 at 17:50

Great News Hammersbest keep it up

Good luck on the 3rd Ann

Cheers

Bill

User
Posted 16 Apr 2018 at 23:15

Thank you - with you guys on my side I feel the force is with me!!

User
Posted 16 Apr 2018 at 23:20

That’s fantastic news !!! 😁😁😁

Viv
X

The only time you should look back is to see how far you have come
User
Posted 17 Apr 2018 at 09:06
Hammersbest
Thank you for posting this good news.I complete my SRT (20 sessions) this afternoon.I saw the oncologist last week who has twice used that great word 'curable' .We don't half cling on to their adjectives don't we.Like you I aim to relax and enjoy the summer as I don't see him again till October.I will also be raising a glass this evening to us all. All the very best mate.
Paul
 
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