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PSA fluctuating wildly

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User

Posted 29 Nov 2020 at 10:42

I was diagnosed with locally advanced prostate cancer in August 2019 after two PSA tests. The first in June was 576, followed 5 weeks later by 950 - off the scale as my consultant said. It was probably well over 1000 some 3 weeks later when I had a DRE/biopsy. I started on Degarelix, which saw my PSA drop to 1.85 within 3 months, afterwhich I started chemotherapy (Docataxel). Levels fluctuated slightly during chemotherapy, but 5 weeks after the last treatment (late March) my PSA was 1.5 - all seemed well for a few weeks. But by mid-April 2020 when I started radiotherapy (6 treaments at weekly intervals) my PSA had already risen to 2.52 and by early July it was up to 25. This was put down to all the treatment reeking havoc with my prostate, and I was told it would settle down in time.

Summer passed and my PSA was tested at the end of October - I was hoping for a result in single figures. I got 199, which suggests an increase roughly by a factor of 10 every three months. Not very encouraging to say the least, and it's becoming difficult to stay at all positive about the whole cancer thing.

Every search I've done on the internet leads me to people talking about PSA scores in single figures or less than 1, occassionally somebody mentions a score of between 10-19, but never any higher. Even those research papers published by researchers talk in terms of very low PSA scores, and about how an increase from 0.5 to 0.6 over several months or a year is significant. I'd be interested to know what any of them thought about my scores.

Has anyone else here had this sort of experience, or known of others in my situation?

Edited by member 02 Feb 2021 at 09:45 | Reason: Not specified

User

Posted 29 Nov 2020 at 13:37

Hi,

My husband's PSA was 1303 when diagnosed into bones and lymph nodes. Following HT and Docataxel it went down to 1.1. Then 5 weeks later it had doubled and continued growing at about same pace until started a trial with Abi and possibly a trial drug. This worked for a while until very high ALT (liver function) and he had to stop. Was able to have Enzo as the other was a trial and that helped for a while. PSA then started climbing March 19 was 2.8 fairly slowly and by end of 2019 was 29. He has tried a number of trials this year but none have worked for him. PSA still climbing by September 20 it was 596 and October 20 had reached 1114 so something needed to be done urgently so Cabataxel was started and after first cycle it was 764 and hopefully will continue to come down a bit. September he was in a lot of pain and started Morphine but now with Cabataxel pain has mostly stopped and able to stop Morphine but PSA still too high but we are working on how he feels rather than just PSA. We walked over 3 miles yesterday so we think that is good.

User

Posted 10 Jan 2021 at 20:41

I think you are correct about the relevance of PSA to men with very high levels - the highest we have seen on here was Trevor_Boothe who was diagnosed at 13,000 and lived for 5 years - his PSA ranged widely during treatment. Our urologist says that the highest PSA reading he has ever seen in a patient was 160,000.

Marcellus, hopefully your onco will have access to abiraterone or enzalutimide to add to your Zoladex - or they may suggest adding bicalutimide first. There is also the possibility of Radium 223 further along the line.

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

User

Posted 19 Jan 2021 at 02:58

Men who have had their PSA rising just above 1 have usually had their Prostates removed and even a very small rise is of concern. Those that have had HT/RT are concerned if their PSA rises above 2 plus the lowest PSA they have had (their nadir). This is the point where they have biochemical failure also called relapse. Hence, quite small increases for these men, particularly if their PSA continues to increase, is mentioned on here as a concern because the radical treatment they have had as not been successful. So this is quite different to where a man's cancer has advanced and spread sometimes with an escalating PSA. This could be because his PCa was not identified and treated before it was already advanced or because the original surgery or HT/RT was unsuccessful and PSA started to escalate some time later.

It should be noted that rarely with PCa it can be advanced but the PSA remain low. So PSA generally can be a useful indicator especially where PSA is high and there is an increasing trend. But you can't rely absolutely on PSA and sometimes men with a high PSA may feel less affected than those with a much lower ones. In this respect at least, PCa can be like Osteoarthritis where some hardly know they have it, yet it is quite extensive, whereas others have it in a less extensive way but it's presence is more obvious.

The majority of men who join us do so with early to intermediate cancer so this explains why there is a lot discussion about low PSA figures and small increases.

Barry

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User

Posted 29 Nov 2020 at 13:37

Hi,

User

Posted 29 Nov 2020 at 13:50

Hi Dean, can you clarify - has the onco changed your hormone treatment from degarelix to another one, or added an extra hormone treatment to the mix?

It is patently clear that the Degarelix is not controlling your cancer the way it should - this is often referred to as being castrate resistant or hormone independent. Some men can have HT for many years before it fails but in other cases like yours, that happens very quickly. If your treatment hasn't been changed since the PSA started to rocket, I would be expecting the onco to explain why. There are a number of options (adding bicalutimide, stopping bicalutimide, adding enzalutimide or abiraterone, trying a different chemo called cabazitaxel) but I would be a bit doubtful of the value in having docetaxel again since it didn't seem to do much good the first time round.

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

User

Posted 29 Nov 2020 at 21:39

Hi Dean, the first thing I would suggest you need to do is get a blood test for Testosterone to see if the HT is working, tomorrow if possible. If that's the problem, it could be just a case of changing to a different one.

I get your point about PSA levels, I assumed mine would get down into the fractions looking at other posts. Mine was 55 at diagnosis 18 months ago, Decapeptyl and the up front 6 shots of Docetaxel brought it down to around 1.5. Next test due just before Christmas so keeping fingers crossed it wont be a carp Christmas...Lyn has covered the next steps that probably need taking.

Good luck to everyone coping with the insidious big C

User

Posted 29 Nov 2020 at 23:54

Perhaps look at your last couple of blood results first to see whether your testosterone is already being checked? If you don't receive print outs of your blood results, your GP practice should be able to email these to you or print them off for you to collect from reception.

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

User

Posted 02 Dec 2020 at 10:30

Thanks for responding. I'm wondering whether I'm reading too much into the PSA scores, and fixating on these rather than on how I'm feeling generally. It's a bit of a roller coaster all round. Most of the time things are OK, but when I hit a low point everything starts to pile up and I spend too much time thinking about it and my outlook.

The Degarelix seemed really effective at first, but after 8 months I started suffering from its' side effects - these got worse, so back in July I was switched to Prostap (which I get injected into my arm?), but PSA has kept rising.

I'm back at hospital in a few days time to start on Enzalutamide, and for a new round of Radiotherapy - the cancer has spread to the hip/pelic bone and enlarged enough to put pressure on a nerve. This is the first time I've become physically aware of the cancer. I try to keep as active as possible - local walks every day - it helps, although sometimes I'm staggering around a bit by the time I get back. Hopeful that the treatment will be effective.

Before I started the chemotherapy the oncologist mapped out the likely course of events - continueing Hormone Treatment, Chemotherapy followed by Radiotherapy. Then I'd be set for a few years of monitoring before the cancer became more active and I'd be back for the next stage of treatment. The few years has turned out to be a few months. Feels like I got caught in a revolving door as I left, and instead of walking away I'm straight back into the place (sigh...).

One of the nurses did mention that they treat people with PSA scores of 3000, so I'm still wondering what it really means.

Edited by member 02 Dec 2020 at 10:48 | Reason: add further info

User

Posted 02 Dec 2020 at 20:14

It isn't the number that matters as much as the rate of rise - your doubling time is around 5 weeks which is very concerning - that is why they are adding the enzalutimide.

Some men last for years on HT, sadly for some men, it just doesn't work well for more than a few months. As you say, how you are feeling is more indicative than the bald numbers.

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

User

Posted 01 Jan 2021 at 11:36

Guess I'm one of a small minority with wildly fluctuating PSA. My PSA was tested at the beginning of December and had reached 508. A few days later I had a dose of Radiotherapy to deal with the cancer that was developing in one of the pelvic bones, and then started on Enzalutamide. I was in serious discomfort - unable to sit down or walk easily for any distance. I finally got pain relief when I was prescribed Morphine, and within hours I felt I was getting back to some sort of "normal". By the end of December my PSA was down to 371, and able to reduce the Morphine doses to a minimum, so quite a good end to the year / start to 2021. Over Christmas I was back to doing modest walks on the Eastern Moors / Edges in the Peak District. Its a big roller coaster ride - over the summer I did well, but November and December were a real low - things seem to be improving now. Keeping my fingers crossed, staying positive for the future, and hoping the Enzalutamide continues to work. Hope this message may help anyone else in a similar situation.

User

Posted 01 Jan 2021 at 19:05

Glad you are seeing an improvement in symptoms Dean.
Best wishes for 2021.

Ido4

User

Posted 08 Jan 2021 at 16:28

Hi Dean, this is Marcellus from the Netherlands. I have almost the same story....I was diagnosed in April 2020 with advanced PC with high volume metastasis (only in the bones). PSA 1380, ALP 566. Started with ADT Zoladex in May 2020 which led to a spectacular decrease (660 in June, 260 begin July). Because of the high volume (CHAARTED, STAMPEDE) ADT combined with docetaxel, first treatment in July 2020. PSA level declined at 4.4, ALP 160. After the 6th treatment my PSA slightly increased to 5.0, ALP 170 but after a three weeks check up (this week) PSA climed up to 13.0, ALP 226. I was told that the Docetaxel has failed and the Zoladex is not sufficient anymore. MO also expected Cabazitaxel not to work ( which sound strange to me). In two weeks I will speak to Holland’s top Oncologist Niven Mehra. Probably will have a fluid Biopsy and then we have to see what’s next. I recognize your feelings, I find it very difficult as well. Now the first line failed after 8/9 months we have lost app. 21 months survival. I know it’s only statistics, but nevertheless, it makes me very uncertain. Are there men on this forum who can give us some comfort with this situation? Hang in there Dean!

User

Posted 10 Jan 2021 at 19:09

Hi Marcellus. The silence is a bit disconcerting, but what can you do... My oncologist mentioned something about treating people with PSA up to 10,000 ! (seriously), so maybe there are those who's PSA varies but stays within double figures, and then there are those of us who's PSA varies wildly - going completely off the chart at times, before falling just as spectacularly in response to treatment. As everyone says - it's not the number, but the rate of change that really matters. Elsewhere I see people concerned about a rise of 1 or 2 in PSA, whereas we see rises of 1 or 2 hundred - its bound to make you concerned about what's happening and the long-term outlook.

I'd kinda got my hopes up after the first round of treatment that it would be a couple of years before I needed to move on to the next stage - it was quite a blow to find I only got a couple of months. Along with increasing discomfort caused by the cancer spreading to one of the pelvic bones and pressing against a nerve - it was definately not a good end to the year.

I don't think there is any answer to all this. It is what it is, and you've got to keep on dealing with whatever's happening. I've no idea what fresh hell may be around the corner, but thinking about the possibilities certainly doesn't help, so I stick to the three things I can do: eating healthily, exercising regularly and staying positive - all easier said than done, but they certainly make for a better quality of life despite what the cancer may be doing.

I understand completly your comment about the first line of treatment failing so soon, but on the positive side it did buy you some time, just not as much as you'd hoped for. Same here.

I here talk all over the place about what an awful year 2020 was with COVID, but to me it was quite a good year - every day was a bonus, and during the summer at least I got out and about as much as possible whilst staying COVID safe. I'm approaching 2021 with a similar view - I've no way of knowing what's coming, but from the start I determined to fight like hell to keep going, and I intend to be here in a years time, looking back on 2021 with good memories of the best bits, of which I'm confident there will be a few.

Hope this helps in some way, and that things work out well for you over the coming weeks.

User

Posted 10 Jan 2021 at 20:41

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

User

Posted 12 Jan 2021 at 00:01

Thanks for the information Lyn - the 13,000 figure sort of helped me put things into perspective, and especially the 5 years.

I guess what troubles me in the small hours when I can't sleep is that I sketched out a road map for my future with various mileposts along the way, and and stuff I wanted to do. Everything seemed to be going well. Then suddenly I find I'm a lot further down the road than I though I was, or should be. Maybe the map's all wrong. Perhaps I'm looking for some certainty - though I know that's not possible.

So I'll keep moving on, and see what happens - I love roadtrips...

User

Posted 18 Jan 2021 at 18:41

Hi lyn, tx for your reply! I guess I am very fortunate to live in the Netherlands as my oncologist adviced me indeed to add Abiraterone to Zoladex. I understand that this medicine is very expensive and for some of us hard to get, where I can have it for free (sort of). So, I am very grateful for that. I can’t find any documentation if there is a (negative) correlation between early resistance to Docetaxel and the duration of Zygita (Abiraterone). As long the metastasis like only my bones, Radium might be an option. Lets hope for some quick results of the Trial Vision somewhere this year, maybe that Lutetium 177 is a better choice. Lets hope for the best.

User

Posted 18 Jan 2021 at 22:02

Hi Dean,

“I don't think there is any answer to all this. It is what it is, and you've got to keep on dealing with whatever's happening. I've no idea what fresh hell may be around the corner, but thinking about the possibilities certainly doesn't help, so I stick to the three things I can do: eating healthily, exercising regularly and staying positive - all easier said than done, but they certainly make for a better quality of life despite what the cancer may be doing”.

Thank you for that. You are so right, it is all so recognizable. I am not there yet but I hope that in the near future I ll find the same attitude!

Best Regards, Marcellus

User

Posted 19 Jan 2021 at 02:58

The majority of men who join us do so with early to intermediate cancer so this explains why there is a lot discussion about low PSA figures and small increases.

Barry

User

Posted 19 Jan 2021 at 11:30

Originally Posted by: Online Community Member

Those that have had HT/RT are concerned if their PSA rises above 2 plus the lowest PSA they have had (their nadir). This is the point where they have biochemical failure also called relapse.

That's interesting to know Barry. I was curious as to why the consultant wasn't concerned over a 0.25 rise. Now I know 🙃

Good luck to everyone coping with the insidious big C

User

Posted 02 Feb 2021 at 09:32

Thanks for the info Barry. The stuff pople are posting in this thread is just the kind of information I've been searching for since I was first diagnosed. I haven't found a single website or article which clearly explains PSA - what it is, what it means, and the range of values a guy can encounter - and why. It's really helpful to get this information - it helps me put everything into perspective and move on instead of getting hung-up on what my latest PSA score really means.

Speaking of which, my latest blood tests came back with everything looking good, and PSA down to 88.5 (big drop from over 500 two months ago), so the Enzalutamide seems to be working well - long may it continue.

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