Hello everyone,
I've been hanging around here for over a year since I was first diagnosed and I want to thank everyone for all the useful and helpful discussion, it's got me through some very difficult times. I'm posting my first thread firstly to say hello but secondly to ask if anyone could help me with some advice?
I am a 44 year old male, was diagnosed in March 2024 as Advanced with a PSA of 179, T3bN1M1b, Gleason 9 (4+5). Received Degarelix on diagnosis, this had no effect and the PSA had risen to 292 by April 2024. Started Zoladex May 2024 which arrested the rise a little bit, although the PSA was 330 the day I started Docetaxel chemo with Darolutamide on 6th June.
By the time I completed the chemo in December 2024 the PSA was 1.3, and then 1 on 20th February 2025. A great New Year's present!
All the scans were repeated in early March this year for my post treatment review. My oncologist was really happy and said I'd shown a really good response to the treatment - bloods were normal for a man of my age, the CT came back all clear, lymph nodes had shrunk back to normal, nothing of note spotted. On the bone scan, it was mostly clear except for what my oncologist described as a "shadow" or inconclusive spot on the right hip. Most of the MDT weren't concerned about it, and he said based on the bloods neither was he, but one team member was pushing for me to have a repeat bone scan so this had been scheduled in for June.
I had a PSA test yesterday and had the call this morning that there has been a rise, from 1 to 4.3, which they're concerned about. They're going to bring forward the bone scan and do another CT. It wasn't my oncologist, it was his registrar, who seemed in a hurry so I hadn't had a chance to ask many questions. He did say it's not anything to get too worried about at this stage, and they have dispensed 3 months worth of Darolutamide, which is some comfort.
Throughout this whole process I've remained very positive and bobbish, I've met some great people and have a fantastic medical team who I get on with brilliantly, and I've always viewed this as just something to be dealt with before moving on. I don't generally give it the time of day in my thoughts, because I don't think it deserves that.
However, I am really struggling today - the news of the PSA rise has really upset me, I thought I would have far longer before there would be any kind of flare up. So I guess my questions are as follows:
Has anyone experienced a PSA rise so soon after finishing front line treatment and getting a good report from the oncologist?
I went to the UAE on a business trip last week, it was quite stressful, and I'd flown back the day before the PSA test, lots of walking through airports, carrying heavy bags etc - is it possible this could have caused the PSA to rise, as I've read that exercise or stress can cause this?
Is there any chance this is an anomaly and the reading could drop?
I'm panicking a little bit, having just been able to put it all behind me, so I really just need a bit of reassurance as to what could be behind it, and also to hear of any similar experiences others may have had.
Thanks so much.
PSA history:
March 2024 - 179 (initial referral)
sorry to here your PSA has risen a bit but your Oncology team seem to be on the ball . Can you not contact your Oncology nurse and ask her the questions you feel you need to.
My husband and I contact our local cancer hub and they always call back as soon as they are free. if they can’t answer they speak to his oncologist
best wishes
Liz & Oh Xx
Hello beta_zed
And welcome to you from the "dark side" - although I am pleased we have been able to help in the past..
I have read your post and results now 3 times before replying and:
* I think the increase in your PSA in the May 2025 test is a combination of work stress, travelling and exercise - we all comment on how tired and stressed we feel when travelling - even for a holiday.
* My original MRI shows a "shadow" on my hip - the bone scan and bloods all indicated "nothing of concern".
* Your team are aware of the increase and a bone and CT scan have been ordered so they are on it.
I know it's hared waiting for tests and scans (I am waiting for a scan appointment myself) but I tell myself the team have got things in hand.
I think you will be fine - chill and trust your team.
Best wishes - Brian.
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Hi beta_zed
It's definitely upsetting to get a rise this soon, it's a difficult thing, but sounds like you have a great team that are alert with catching that shadow and ordering more scans.
I am wondering if you have had any 1st or second generation HT drugs since December when you finished Chemo. Or was you drug free and they have "just dispensed 3 months worth of Darolutamide" ?
L
Hi Millibob and thank you. I greatly appreciate your calming words. And apologies for not saying hello sooner - there is so much helpful information here but it was a bit hard to actively participate during my frontline treatment.
The more I think about it, the more I'm convinced the work trip, stress, and long-haul travel is to blame for the rise - along with sitting on a deeply uncomfortable, hard plane seat for 7 hours. As you rightly point out, travelling is a tiring and stressful activity and I seem to have picked up some sort of cold as well. But the out-of-the-blue rise really caught me unawares earlier today, and it's one of the few times throughout this whole thing that I've ended up having a good cry.
I'm very glad to hear in your case there was nothing untoward from the shadow on your MRI. My CNS is going to call me back to go through the rest of my bloods with me, if the surrogate markers are all still normal I'll feel a lot happier, I think.
Thank you again
Steve
Hi BW
I've been on Zoladex & Darolutamide throughout the chemo and that's continued since the chemo finished.
Initially they were giving a box of Darolutamide once a month, but they now give me three months at a time, and the fact they've dispensed three worth today even with the rise is reassuring.
Hopefully this is just a blip.
Thanks,
Steve
Yes hopefully a blip! You really need to look after yourself as the last thing you need is getting run down. And if there is a problem there’s plenty more treatment options from targeting an area with RT to simply changing the Medication to another one. Long haul flights are terrible and there’s so many germs on flights. You’ve just had chemo and taking HT which is so draining, it’s too much ! !!
Feet up - chill . Think about how you can make your life easier for the next couple of months- less work?
honestly, my husband is the same, keeps saying he will drop a day but never does.
now you’ve surfaced . Keep in touch .
Yes, I must admit you're not the first to say that, my mum and a few of my friends have been quite vocal in terms of backing off a bit, and not doing too much. I must admit this scare is probably the catalyst that will make me do that.
I have had a gradual ramp back up to work (and my employer has been absolutely fantastic - they've basically said do what you need to do, and I've been on full pay since my diagnosis). So I think they will quite understand if I do a bit less. I breezed through chemo and if anything the HT has taken more of a toll. Perhaps the international trip was a step too far.
The CT scan has already been booked for tomorrow morning so they're moving fast. Hopefully I'll have a clearer picture quite quickly.
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