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Rising PSA post RP

User
Posted 18 July 2017 13:09:20(UTC)
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 19 July 2017 20:33:12(UTC)

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

Thanked 1 time
User
Posted 12 December 2017 16:49:55(UTC)
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.
Thanked 1 time
User
Posted 12 December 2017 19:37:38(UTC)

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.

Thanked 1 time
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User
Posted 18 July 2017 16:03:10(UTC)

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 July 2017 12:36:36(UTC)
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 July 2017 16:46:23(UTC)
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 July 2017 20:33:12(UTC)

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

Thanked 1 time
User
Posted 19 July 2017 21:24:26(UTC)
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 August 2017 08:59:16(UTC)

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 August 2017 09:20:59(UTC)

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 August 2017 10:32:17(UTC)

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 August 2017 19:36:55(UTC)
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 August 2017 19:46:40(UTC)

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 August 2017 19:56:43(UTC)

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 August 2017 08:11:57(UTC)
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 September 2017 17:21:36(UTC)
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 September 2017 20:17:32(UTC)
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 September 2017 20:52:36(UTC)
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 September 2017 21:54:55(UTC)
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 September 2017 21:59:34(UTC)

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 October 2017 17:38:07(UTC)
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 October 2017 18:27:13(UTC)
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 November 2017 11:42:17(UTC)

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

User
Posted 12 December 2017 15:06:55(UTC)

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 December 2017 15:36:32(UTC)
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 December 2017 16:49:55(UTC)
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.
Thanked 1 time
User
Posted 12 December 2017 17:12:06(UTC)

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 December 2017 19:37:38(UTC)

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.

Thanked 1 time
User
Posted 12 December 2017 19:38:32(UTC)

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

Thanked 1 time
 
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