How long does SRT take to work? - - Page 3Localised cancer

User

Posted 27 Feb 2018 at 12:56

So Lyn, no hope, you think, that the rise is peaking due to cancer cells dying....and still a few months to go for the full 18 months?

David

User

Posted 27 Feb 2018 at 14:44

David

I started my SRT 3 years post RARP at a PSA of 0.27, 3 months post SRT it was 0.08, at 6 months it was 0.04.

Next test tomorrow. I did not have HT.

Thanks Chris

User

Posted 27 Feb 2018 at 15:12

Thanks Chris. Let us know about tomorrow.

So Lyn...John's went up to 0.1 then dropped below again? That's hopeful, surely? I know mine wavered between 0.03 and 0.05 for a year so why indeed shouldnt it drop from 0.1, as indeed John's did.

Edited by member 27 Feb 2018 at 15:34 | Reason: Not specified

User

Posted 27 Feb 2018 at 15:57

I am about to start 37 sessions of salvage radiotherapy. I asked for 20 sessions to get it over and done with quicker. My oncologist said no for two reasons. Firstly, she feels the intensity is such it increases the risk of permanent vascular damage. Secondly, it is a prostate bed only treatment and I need some lymph nodes to be zapped. Her standard treatment is 32 sessions to the prostate bed but I'll do 37 sessions to move further up the prostate bed to the nodes.

With regards to the sensitive testing, what I have to say may risk some criticism. My oncologist is convinced of the benefits of the sensitive test. I went from 0.014 to 0.023 over the space of the year post prostatectomy. In another hospital, I may have been told that my PSA was less than 0.1 and therefore undetectable. My onco said my PSA was persistent and indicated salvage radiotherapy was needed. But she also recommended a PSMA scan and cells showed up in two lymph nodes. I don't know enough about the data regarding the sensitive PSA tests, but based on my experience, I'm happy with them.

Finally, I asked her what PSA level she would look for post salvage radiotherapy- she said 0.003. That's low.

Ulsterman

User

Posted 27 Feb 2018 at 17:03

Originally Posted by: Online Community Member

Thanks Chris. Let us know about tomorrow.

So Lyn...John's went up to 0.1 then dropped below again? That's hopeful, surely? I know mine wavered between 0.03 and 0.05 for a year so why indeed shouldnt it drop from 0.1, as indeed John's did.

John's was rising on the ultrasensitive test before the hospital stopped offering it. It then went to 0.1, <0.1 0.11 and then has been <0.1 for a couple so it could be sitting at 0.08 or 0.099999 - it doesn't really matter. It went over 0.1 which is too high to be explained by adrenal activity or cycling or sex in a man with no prostate. He won't want to go on HT unless he is forced so we will keep on having the tests and see how long it is before it starts to rise properly, knowing that it might be years before he has to do anything about it.

The science says ultra-sensitive testing is unreliable at readings below 0.1 - a reading of 0.11 is therefore considered reliable because it is beyond the point of being detectable.

Ulsterman, the 20 sessions at higher dose was a trial being run at specific hospitals so perhaps your onco wasn't involved. She should be aware of the trail though as the findings so far are that fit men can take a dose of up to 3.2Gy without major problems, it is more effective that 37 fractions at 2Gy and has less side effects. John's was targeted at the prostate bed and bladder but not the higher lymph nodes.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2018 at 17:41

Thanks Lyn.

It's useful knowing John had similar stats here. Is it also not relevant now that, 14 months after SRT some cancer cells are still dying and producing more PSA, something you said a previous time? Also, something I will ask my onco, I had 22 nodes removed, all ok, and the bed got RT....so where could any cancer cells now still be growing ...absolutely anywherein the body? ie. they escaped pre SRT....or just survived the SRT? And does this mean, officially, I have metastasis?

Thanks very much

David

User

Posted 27 Feb 2018 at 18:58

David it is too soon after RT to panic - yes your cells are still dying and you may have to wait another few months before you hit your nadir. John is nearly 6 years past SRT so it is rather different.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Feb 2018 at 20:03

Lyn after today's bad result (a jump up from 0.05 to full fat 0.11) after a steady year where I was beginning to have some confidence, I REALLY needed someone to give me some hope. I know I'm not on the edge of death, but I DO know that if it hasn't all been got, it will rise and rise. And I know HT does not work for ever. I'm 57 so.....

YOU, with that sentence above, have given me some hope! With my cancer diagnosed unexpectedly, supposedly sorted by RP, failed so SRT, looking dubious, I'm pretty down.

It may be dashed in 3 months' time when I will be at 18 months post SRT ending. I realise that. I do still wonder though why it's gone up now at 14 months when it was pretty steady, but there we are....

THANK YOU!

But I just recalled earlier you said:

it seems that you are now detectable and will need to decide with your onco at what point you start hormones again.

That's a bit different to not panicking!!

Edited by member 27 Feb 2018 at 20:12 | Reason: Not specified

User

Posted 09 Mar 2018 at 11:42

Well, just back from my 3 monthly meeting with the relatively new somewhat lacking charisma consultant, following my latest PSA of 0.1, up after the steady 0.03.0.05 wavy line for 12 months.
I'm getting mixed messages from folks on here, and onE of 2 PCUK nurses I spoke to, that it could still be peaking post SRT, as it's not 18 months yet. And the consultant who doesn't suspect it's going to go down again. The best he had to offer is that it could stabilise, but essentially 'something' escaped before or soon after surgery/SRT.
Hmm...it would do, wouldn't it?!
Needless to say, I am devastated, as this feels like the 3rd diagnosis within 2 years. All with no symptoms, and checked only because of my brother's diagnosis.
My doubling rate worked out at 5-6 years before surgery. My hope, my prayer, is that it stays at that rate. Yes - I know it can change but I have to hope for something here, as my hopes have been dashed several times already.

If the growth stays as slow as it did, I may be alright. That's the only hope I have really, in terms of avoiding HT, which 2 years ago seemed so unlikley.

Thanks for listening.

David

Age now 57, G3+4

Edited by member 09 Mar 2018 at 13:06 | Reason: Not specified

User

Posted 09 Mar 2018 at 13:10

Don't be devastated - look at my profile for John's results. He has gone up to 0.11 and then back to 0.1 and the last 2 results were <0.1 and we are a bit nervous but not devastated - the onco thinks that he may just settle there and bob around without ever having any more treatment, or it may rise again and at some point there will be a need for long term HT but since it is still hovering at 5.5 years post SRT if there is some cancer still lurking it certainly doesn't seem to be very active.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Mar 2018 at 13:21

Thanks, again, Lyn. John's slight rise etc is several years post SRT. Mine seemed to drop from where it probably was (0.2) at time of SRT down to 0.03/0.05 well within the year. Just seems odd that at 14 months it should be up at 0.1, rather than maintaining the sub 0.1 So it's the SHORT time that it's got back up to 0.1, rather than years later, like John's, which would have been nice, to say the least? Lots of crying - again - but there we are.

Edited by member 09 Mar 2018 at 17:30 | Reason: Not specified

User

Posted 12 Mar 2018 at 13:21

good day fellow sufferers and esteemed professionals.

Ok so first time at this so bare with me if I go over old ground. Reason for my inclusion is that I have hit a brick wall when it comes to my healthcare and looking for a way forward. I guess you may call me lucky in some respects as I have survived prostate Ca for nearly 19 years, my surgeon Urologist has retired so have been referred locally. now the fun begins. Long story short, I have rising PSA. 2 Choline PET scans prove negative. been told this morning PSMA PET scan is £3000 if I want to move forward. failing that Hormone therapy (which I take intermittently anyway) wait till PSA hits double figures and re-scan or I can sign myself off ... I feel I have been thrown to the wolves .. believe Royal Marsden offers the scan, and I'm awaiting response. any other ideas??

User

Posted 12 Mar 2018 at 13:53

Sorry Spook but you have started this thread in David's so your post is not relevant there. Perhaps start your own thread and you will then probably get some answers.😊

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How long does SRT take to work? - salvage radiotherapy

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