Rising PSA post RP

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

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

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

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.

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

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

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

'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

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

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.

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 ...

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.

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

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

Fantastic news - congratulations

All the best

Kevan

Great news,hope it continues.

Thanks Chris

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

Hi, Everyone - hope all OK with you guys and that you are all as well as can be expected whilst battling this nasty illness.

It’s another me, me, me Post I’m afraid, but I feel I must share with you the good news my Oncologist gave me at my local hospital this morning. For the third PSA reading in a row, since finishing SRT in December 2017, she was delighted to inform me that my reading is currently undetectable on the machinery they use. You can imagine how happy I was to receive this fantastic information.

In my file she was sorry to see that I had recently undergone a Colonoscopy procedure (18/10), because for the past three months my bowel actions have been very urgent, unpredictable and often accompanied with blood. The guy who did the procedure cut out nine polyps which were then sent for biopsy. To date I have received no news on the biopsies. He also wants to do another Colonoscopy session in the near future because there are two polyps still to be dealt with. Lucky me!!! However, the good news was that on his camera reaching the bowel, his trained eye could see nothing too sinister. There was radiotherapy damage showing in the lining of the anal tube and he said this was the nasty side effect of the radiation and hence my current ‘number two‘ problems. My Oncologist sympathised but wasn’t too peturbed by this side effect. She is hopeful that, in time, the problem will clear up naturally and so told me to keep on using the steroid cream that has been prescribed. If it doesn’t heal, then she also told me that other sufferers, who have experienced the same complaint, had been helped with laser surgery. So this mght be a future option for me.

However, this didn’t deter from the grateful feelings I’d had from my very good PSA reading. I have to see the Urologist in March 2019 and if the good news continues then the Oncologist will next see me in the September.

Best wishes to you ALL - David