Not quite what I was hoping for

User

Posted 12 May 2022 at 22:11

Greetings all, having been diagnosed in 2019 and with upfront Chemo and Decapeptyl having kept the beast slumbering, it looks like it may be starting to stir.

PSA has risen on the last 2 routine tests from 1.86 to 2.22 to 2.97 😟

If my calculation is right that gives me a doubling rate of 10 to 11 months?

Full bone scan and CT over the last 5 months have not shown anything new.

I suspect the consultant is waiting on 3 consecutive rises before contemplating any further action (presumably adding Enza to the mix?) Anyone think it would be worth pushing for a PSMA blood check to see if I fall in the category of expressing sufficient to make a scan worthwhile? And if so, where in the South West would one find such a place?

Good luck to everyone coping with the insidious big C

User

Posted 17 May 2022 at 01:25

Sorry no one else has responded.

I think there are a couple of things you need to know first. Have they measured your testosterone? Next steps will be influenced by whether you are becoming hormone independent or whether it is just that the decapeptyl isn't doing a good enough job on its own. If your T is still below 0.7 then it sounds like you are becoming hormone independent but some oncos will delay changing the treatment plan until you are at a doubling time of 6 months or more. If your T is above 0.7, they might just add bicalutimide tablets to help the decapeptyl along.

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

User

Posted 17 May 2022 at 11:21

Hi Lyn, hope you really enjoyed your break 😎

Testoserone level usually loiters around 0.3 to 0.4, last test was back in September as onco doesnt usually put it on the blood test form. Apparently there is a letter waiting to be printed off and sent out to me, outlining the way ahead. My next appointment has been made for 4 months though, so it appears he doesnt think it's too much of a concern. I have noticed the last couple of months there seems to be a little more urgency when I feel the need to have a pee. Wondering if it might be a low- level water infection, though is obviously also just one of those things with PCa 😕

Good luck to everyone coping with the insidious big C

User

Posted 17 May 2022 at 15:46

UTI is certainly a possible explanation.

Knowing that a change of plan might be needed is not the same as needing to rush urgently into a change. Even so, I think if you can wangle a testosterone check, do - if just for reassurance or so that you understand what is going on in your body.

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

User

Posted 17 May 2022 at 16:03

Hi Steve, ironically my husband finds himself in the same situation . He’s been going along nicely for 3+ years then about 6 months ago his score started rising, every test showed an increase so he was put on bicalutimide which slowed it down, then it seemed to level off so we thought all’s good. But results have just come in from his last blood test and numbers are up again but seem to be rising a little quicker. The onco is arranging an MRI and will speak to him again once results are in - probably in about 4 weeks. Another waiting game. He’s quite upbeat and positive and talking about booking flights to see our daughter in Australia whom we haven’t seen in 3 years because of covid etc. But I think flight booking will have to remain on hold until the outcome of his MRI. His take on it is quite positive though and doesn’t seem unduly concerned, but wondering if it’s for my benefit. By the way we are in the south west also.

User

Posted 17 May 2022 at 23:03

Originally Posted by: Online Community Member

Hi Steve, ironically my husband finds himself in the same situation.

I guess that puts us in the same mode of transport, if not exactly the same boat. Haven't had an MRI at all through this process. Guess my initial readings made more sense to go straight to biopsy? Down in South Devon myself, how about you?

Good luck to everyone coping with the insidious big C

User

Posted 18 May 2022 at 08:11

We are in south Somerset although both Devonians.

Rob had MRI at diagnosis in 2018 which showed the tumour had broken out of prostate and cancer detected in his lymph nodes and pelvis so chemo was started straight away. No operation for removal. His initial diagnosis was we can’t ‘cure’ but we can try to arrest the development but it’s pretty aggressive. But with the wonderful treatment and care he has received from The Beacon Centre in Taunton Musgrove Park Hospital, he has been bobbing along nicely for 4 years. We even sold our old cottage and moved to a modern bungalow 2 years ago to make life easier but all we’ve done is work on it! I’m hoping his latest test results don’t knock him back too much. His onco seems to be quite positive and told him there’s more avenues that can be explored if the MRI shows up some ‘nasties’.

Edited by member 18 May 2022 at 08:25 | Reason: Additional text

User

Posted 23 Jun 2022 at 09:20

Hi Steve559, just updating on my other half’s progress as he was experiencing similar ‘problems’ to you. it’s been a while but at last got results from his latest MRI. ‘Tumour is starting to move again’ were the consultants words and they also detected cancer in one of the lymph nodes in his neck although he said they were not too concerned at the moment about that. Decision was made to change his medication from Bicalutamide to Enzalutamide (I think that’s how it was spelt) as he said his numbers would continue to rise now. Hopefully this will knock it on its head for a while. He said it’ll take about 8 weeks of frequent monitoring - liver, kidney functions, BP by which time it should have settled. Anyone else on this? Anyway, we have taken the plunge and bought tickets to go to Australia to see our daughter in late September, fingers crossed it’ll all go ahead.

User

Posted 23 Jun 2022 at 10:51

HI,
My husband is in the same boat, diagnosed in 2019 with advanced prostate cancer in lymph nodes also. Almost 3 years undetectable PSA and now rising, though the recent scan showed no further spread.
Strangely his went from undetectable to 2.17, down to 1.78 then up again to 2.6.
I asked for his testosterone to be checked and it is 0.4.
So its another PSA in 6 weeks then possibly additional medication which I think will be Enzalutimide.
Good luck

Edited by member 23 Jun 2022 at 10:52 | Reason: Not specified

Mrs MAS

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