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12 years after prostatectomy and radiotherapy PSA has risen to 8.2

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User

Posted 12 Jul 2021 at 15:18

So, virtually everyone has a phone with a recording facility, so if you have to attend another consultation alone, record the whole event.

Of course it’s polite to ask the Doc if it’s OK.

Cheers, John.

User

Posted 12 Jul 2021 at 16:12

Originally Posted by: Online Community Member

So, virtually everyone has a phone with a recording facility, so if you have to attend another consultation alone, record the whole event.

Of course it’s polite to ask the Doc if it’s OK.

Cheers, John.

Thank you John. Yes, I will check before going next time I'm on my own. However I did once ask if it was ok to record the session a few years ago but on that occasion the doctor indicated he preferred me to take notes.

User

Posted 13 Jul 2021 at 15:35

When I attended the “Dear John” meeting to tell me I had cancer, the Consultant had a CD recorder and a big box of tissues to hand in case I shat myself and burst into tears.

I had already twigged I had the Big C, and was totally chilled about it. They gave me the CD of the consultation, which I have never listened to.

But, yes, it’s important to listen to what is said, even if you don’t understand what they’re on about.

Good luck.

Cheers, John.

User

Posted 22 Aug 2021 at 00:09

Yesterday (Friday) I had my first meeting with the oncologist who will be handling my case, but I cannot pretend it went too smoothly.

The consultation produced one or two unwelcome surprises. First off, the onco advised strongly AGAINST me having a PSMA PET scan. I was somewhat taken aback by this because six weeks earlier the previous consultant on my case had recommended I go ahead and have a PET scan. Furthermore I was led to believe that because there was a waiting list, he would be adding my name to the list asap. He'd even advised I could have the scan straight away if I wanted to go private. Now I was being told by this onco that the waiting list was too long and besides, it wasn't really necessary for me to have a PET scan anyway. He said I could go ahead and waste £2k-£3k on one if I really wanted but it was unlikely to affect the course of HT treatment I get.

Next, the onco advised me that the prostate bed was clear of cancer. Once again I was disconcerted by this, but only because he was basing his conclusion on an MRI scan I'd had in 2019 that had led to the radiographer producing what turned out to be a false report of a bladder tumour measuring 30mm x 38mm!

As a result of that report I'd been obliged to undergo a rigid cystoscopy "in order to whip the tumour out." Now, whilst it was obviously a huge relief to learn that all along there was no such tumour, the insertion of the rigid cystoscopy caused collateral damage to my waterworks that led to immediate, heavy and lasting urinary incontinennce.

Sadly however worse was still to come from this consultation. The oncologist informed me that, given my prostate bed was clear and that my psa has been rising quite rapidly, the likelihood is that the PCa has spread to other parts of my body. As a result he will be arranging for me to have a full body MRI scan at Mount Vernon Hospital within the next fortnight or so and will determine my course of treatment based on its findings coupled with the outcome of the psa test I also had done yesterday.

There were other minor matters that also led me to come away from that meeting feeling, shall we say less than inspired. I retain a lurking suspicion that the only reason I have been denied a PET scan is because the NHS is currently overwhelmed and cannot cope.

But maybe I am just being unreasonable?

Edited by member 22 Aug 2021 at 08:55 | Reason: Mistaken references to 'pelvic floor' corrected to 'prostate bed'!

User

Posted 22 Aug 2021 at 03:58

You will recall that I suggested you try to get a PSMA scan when I responded to your situation on 11th June. Whilst it follows that if your cancer is outside the pelvic area, the full body PSMA scan may be able to identify the number and location of mets. It may then be possible to treat these individually with RT if they are few and outside the treatment paths of previously given RT. Even if the few mets are found and treated, this does not mean that more mets won't grow in time and there comes a limit to how often you can treat them individually. Take a look at this video by a well known doctor in the USA. It is a little dated now, as the C11 Choline scan referred to in the lecture has been bettered by the PSMA scan. https://www.youtube.com/watch?v=60P98QLWf70

I note you are due to have your MRI at Mount Vernon Hopstal shortly. In your situation I would see if you can get a second opinion from an Oncologist there. I had my PSMA scan done at the Paul Strickland Centre which is on the Mount Vernon site and it was interpreted by a Mount Vernon RadioOncologist. At the time you had to be referred by a consultant but I don't know if this is still the case. The cost of the scan was about £2600 and changed my treatment plan, money well spent I think. Your second Consultant seems to have pretermined your situation even before the forthcoming MRI.

If you do opt for the PSMA scan, this should be done before you start HT.

Edited by member 22 Aug 2021 at 04:24 | Reason: Not specified

Barry

User

Posted 22 Aug 2021 at 07:51

Full body MRI with that PSA seems like a reasonable approach to re staging. If the MRI is clear I would be inclined to push for a PSMA scan before any hormonal treatment.

User

Posted 24 Aug 2021 at 13:13

Originally Posted by: Online Community Member

If you do opt for the PSMA scan, this should be done before you start HT.

Many thanks for another hugely helpful response Barry. Yes It was directly as a result of your suggestion back in June that I asked about a PET scan and now, after making further enquiries as you suggested, I have just learned that I am due to have a PET scan done - also at Mount Vernon - in mid-October. This will be four weeks after my appt for an MRI scan which has been arranged for mid-September. Needless to say I shall also be following your advice and will not be agreeing to any offer of HT treatment until after the results of the PET scan have been assessed by the oncologist!!

So once again Barry, many, many thanks for your much needed help. I cannot tell you how much I value it.

Edit: forgot to say, thanks also for the link to the Dr Kwon video. What an eye-opener it was! It will surely help me know what questions to ask in the follow-up to the PET scan.

Edited by member 24 Aug 2021 at 13:23 | Reason: Not specified

User

Posted 26 Aug 2021 at 12:25

Originally Posted by: Online Community Member

Full body MRI with that PSA seems like a reasonable approach to re staging. If the MRI is clear I would be inclined to push for a PSMA scan before any hormonal treatment.

I agree with francij answer above. Have the MRI scan to see if that identifies any mets. If it does and there are more than would be required for treating oligometastastic cancer at least you know. If it doesn’t pick up anything or maybe only one met then I’d push for the PSMA

good luck

Bri

User

Posted 27 Aug 2021 at 23:19

Quite a turn up for the books today. I got a surprise call at 1.05pm from Mount Vernon Hospital asking if it would be possible for me to get there withinn 80 minutes to take up a last minute cancellation for a full body PET scan.

Just a few days ago I'd been informed that the earliest I could expect to get the scan would be mid-October. Because my oncologist felt that would be too long to wait, he'd booked me in for an MRI in mid-September.

So, despite not yet having had my lunch and knowing it would take an hour to get there, I jumped at the chance. I hastily grabbed a bite and hared down the motorway, arriving only just in time.

Phew!

My hope is that the scan will reveal no more than two clear cancer hotspots that can be zapped by targetted radiation. Which, if I have understood things correctly, might then mean I may not after all need to undergo who-knows how many years of the dreaded hormone treatment.

I have all my fingers and toes crossed, but for now all I can do is hope ... and wait.

Edited by member 28 Aug 2021 at 07:24 | Reason: Typos.

User

Posted 28 Aug 2021 at 04:16

Result! Don't forget to let us know the result!

User

Posted 21 Sep 2021 at 10:46

Whooppeeee!!! I'm jumping up and down inside because I've just heard from my oncologist that following his review of my recent PET and MRI scans there'll be no need to take any further action on my PCa just yet.

The MRI scan showed nothing, and whilst the PET scan did show something small in the lymph nodes in my right groin area he said it' not clear enough to draw any firm conclusions about it. Since my PSA also seems to have plateaued at around 9.5 recently he feels it's too soon to start HT at the moment.

He wants me to get another psa in four months time, so once again it feels like I have been given at least a temporary reprieve from a prison sentence, or something.

YIPPEEE !!

User

Posted 21 Sep 2021 at 11:14

That’s great news. All the best going forward…

Ange

User

Posted 21 Sep 2021 at 19:37

This thread has the tenseness of a thriller, if you don't mind me saying. It was elating to read your exhileration at the end.

Perhaps you don't want any more speculation as I recall I found it worrying when I was being diagnosed. However, read on if you want my thoughts. This could go a few ways. Either there is something they can treat directly and it will get to a size where they decide and it might be good. Or you could progress to hormones. Or both. If it was me I'd be looking up what possibilities there are to make it slow or enable me to handle treatment better through diet and exercise.

I think I'd also investigate possible ways to get other treatment perhaps an in between psa test, although that's always risky as results can vary at different places. Those things are perhaps just to make it seem like I'm doing something. But I think I would want to be looking at the options while there is this opportunity. Waiting 4 months sounds comforting and some would be able to wait, I know I wouldn't find it easy, it depends on your temperament.

It's good that it isn't as bad as you thought and you can wait another four months.

All the best, Peter

Edited by member 21 Sep 2021 at 19:40 | Reason: Not specified

User

Posted 21 Sep 2021 at 21:44

Many thanks Peter for your helpful advice above. I will certainly be investigating other possibilities, and maybe also arrange to get my PSA checked a bit sooner, if only to be on the safe side.

User

Posted 22 Sep 2021 at 13:53

Sounds like great news. It’s always such a worry not knowing what’s going on inside. Really hope your PSA stays stable and you can get on with enjoying life!

User

Posted 23 Mar 2022 at 21:11

My heart was pounding for three long hours yesterday as I waited anxiously for a call from my oncologist to find out whether he would recommendi I commence the dreaded hormone therapy treatment. My recurrent PSA has risen from 9.5 last October to 12.2 now, which is comfortably above the baseline watermark of 10.0 that I had been warned might be enough for him to trigger a decision on HT treatment.

The reason I am so anxious about HT is I understand it can hit people with a history of asthma quite hard. Tbf I do enjoy reasonably good health on the whole and keep myself very fit. Also I am aware there are plenty on here who have said it was not as bad as they'd feared, but even so, I do have a history of asthma and whenever I get a chest infection it really knocks me sideways, causing sever chest pain and difficulty breathing. On top of that I also have a number of other health issues, eg OAB and bladder incontinence as well as a resident UTI, all of which I fear could be worsened by HT.

The appointment was for 10am and I had been reminded three times by text to be ready fo take the call, which itself was enough to crank up the nervous tenssion, especially as the phone did not ring until 1pm-ish. When eventually it did come it turned out that the consultant was a stand-in for my regular oncologist so I'm guessing my regular onco must have been off sick or something and that this was the reason for the lateness of the call.

However, much to my relief the stand-in said he will be recommending to my regular oncologist that no further action be taken for the time being. So phew! another welcome delay to D-day, the day I would need to decide whether to agree to the dreaded HT!

Although I've been advised there is no definite number that will trigger HT treatment, the onco has indicated that something around 15 would be the next landmark. So he has asked me to get my PSA checked again in three months time. Wish me luck!

User

Posted 24 Mar 2022 at 09:48

In your late 70s you should seek quality not quantity!

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

Edited by member 24 Mar 2022 at 09:54 | Reason: Not specified

User

Posted 25 Mar 2022 at 03:16

Originally Posted by: Online Community Member

In your late 70s you should seek quality not quantity!

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

This study indicates 68 Gallium PSMA is more sensitive than bone scan and also an Australian Professor said in a lecture (but can't find link again) that he thought it would replace bone scan in OZ eventually. https://pubmed.ncbi.nlm.nih.gov/30120038/

Can't find lecture but this supports https://www.prostate.org.au/news-media/news/benefits-of-psma-pet-scans-for-prostate-cancer-diagnosis/

Edited by member 25 Mar 2022 at 03:31 | Reason: Not specified

Barry

User

Posted 25 Mar 2022 at 09:03

Originally Posted by: Online Community Member

In your late 70s you should seek quality not quantity!

Interesting they haven't done a bone scan? Does anyone know if MRI / PSMA CT is more definitive than a traditional bone scan?

Thanks fancij. Yes, quality vs quantity. Another reason I feel so conflicted about opting for hormone therapy. But my family have different ideas.

I did have a CT bone scan back in 2019 but that was for suspected bladder cancer following several instances of blood in my urine (haematuria). My PSA was 1.8 at that point so the medics were not specifically looking for prostate cancer. The scan was carried out elsewhere by a different team of medics and 'confirmed' a tumour in my bladder, 30mm x 38mm that later, following a rigid cystoscopy, turned out to be a phantom. Though the consultant declined to confirm it, I guessed the phantom tumour must have been merely the 'shadow' from a hip replacement I'd had a couple of years earlier. H'rumph!

So mercifully no bladder cancer anyway.

By 2021 my recurrent PSA had jumped to 9.4 so I was referred to my present oncologist, who studied that bone scan closely and decided that despite the phantom tumour, he was confident that the scan was otherwise clear enough to be relied upon and that it showed no evidence of cancer in the prostate bed. Therefore, he concluded, the PCa must have escaped to other parts of the body, i.e. I now have advanced PCA.

The full-body PET and MRI scans that followed also failed to locate any evidence of cancer cells.

User

Posted 25 Mar 2022 at 09:54

Yes I'm with Francij on that. He put it better than I would have. I was going to say:

You're 78 you are probably going to die of something in 7 years, and whatever it is it won't be pleasant (unless it's a heart attack at an orgy). So you may as well enjoy what time you have less. @ChrisJ delayed HT until his PSA got to 1000. Now lifelong HT might be OK, but if you can delay it until the cancer is giving you a problem, you may enjoy your life better for a few more years, and then have a few years on HT before something does kill you.

I am sure your family mean well, but the quality of life argument is too nuisanced for young healthy people.

Dave

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