I could be in trouble

User

Posted 19 Mar 2026 at 14:25

I have been off hormone therapy for a year now.
My last PSA reading six months ago was 0.5, this week it’s gone to 2
I understand that anything above 2 means the cancer is still there, the nurse said she would discuss my case with the oncologist and get back to me. She thinks that they will retest me in three months and take it from there.
Any thoughts?

User

Posted 19 Mar 2026 at 19:57

A three month wait for a test is not good enough. Time to apply some pressure for action now.

Jules

User

Posted 19 Mar 2026 at 19:59

Thanks for your advice. Hopefully, I will hear from them soon.

User

Posted 19 Mar 2026 at 23:49

Rodger I would be looking for the next test in four weeks.My PSA sometimes shot up after treatment.

Thanks Chris.

User

Posted 20 Mar 2026 at 08:55

I will let you know what they come up with. Although, to say that my oncologist isn’t very user friendly is a massive understatement.

User

Posted 27 Mar 2026 at 10:12

I’ve got a face to face appointment with the oncologist on 19th May.

I thought it would have been sooner and I haven’t been sent a blood test form either.

User

Posted 27 Mar 2026 at 11:17

Your PSA is doing one of two things. As you still have a prostate it could be rising to whatever level is appropriate for your prostate, post ADT, that figure could be 2. Or it could be your PSA is doubling every three months, going from 0.5 to 2.0 over a six month period. A PSA test now would probably come back about 2.1 which would prove nothing. A PSA test is three months time will either come back about 2 or about 4, that would clearly establish whether your PSA has leveled out or is continuing to double. So I can see why they want to wait until May. I would have thought you will have a PSA test prior to that meeting.

Dave

User

Posted 27 Mar 2026 at 13:15

Thanks for that Dave, I really appreciate your input.

I will post any updates.

User

Posted 27 Mar 2026 at 13:19

Good luck Roger. You are a little ahead of me, as I have just stopped HT after three years. I shall also be watching (and worrying a little) about my PSA as it bounces. Hope yours turns out to be nothing more than that. Cheers, David

User

Posted 27 Mar 2026 at 14:56

Thanks David, the best of luck to you too.

User

Posted 27 Mar 2026 at 20:38

Hi Roger, will be following your progress so keep us informed. I was also T3BN1M0 Gleeson 8 although my psa was around 119 when dignosed, also high risk for micro mets. But no point in dwelling on that, ADT has kept me undetectable for 3 years so it had some benefit. Now we just have to keep positive and take one test at a time! We got this, David

User

Posted 28 Mar 2026 at 11:03

I will keep you updated, my PSA was also undetectable on ADT.

User

Posted 28 Mar 2026 at 22:25

Hi Roger that...I see from your bio you lost weight on 4/3 diet...I like to know what that is as i have found it difficult loosing weight while on HT...hope you're next results are favourable...rgds David...

User

Posted 29 Mar 2026 at 13:20

Hi David,

My version of the 4/3 diet was to eat 600 calories a day for three consecutive days and then eat normally. I tried the 5/2 diet first on non consecutive days but it didn’t work for me.

The advantage of intermittent fasting, is that your metabolism doesn’t slow down to compensate and your weekends aren’t ruined.

User

Posted 29 Mar 2026 at 14:43

I'll give that a go as i have 2 rest days without exercise so that would be time to try it out...HT has really made it difficult...thanks for the feedback...regards David...

User

Posted 29 Mar 2026 at 14:45

When I first started it, nothing happened for two weeks and then the weight started to fall off.

User

Posted 14 Apr 2026 at 12:48

I’m booked in for a NM Ga68 PSMA PET CT whole body scan on Friday, but I’m unlikely to know the outcome until my oncology appointment on May 19th.

User

Posted 15 Apr 2026 at 09:17

Well that is a positive move and should conclusively show if you have recurrent cancer cells active anywhere in your body. Shame the scan operators are not allowed to tell you anything, as they know on the day of anything is showing up. My best advice would be to enjoy every day between now and the appointment with the Oncologist, instead of mentally fast forwarding to that day. Best of luck, David

User

Posted 15 Apr 2026 at 10:05

Thanks David, I will keep you posted.

By all means PM me, if you have any questions.

User

Posted 19 May 2026 at 12:15

I went to see the Oncologist today for my PSMA scan results.

. There was no evidence of any metastatic or nodal disease, which I was expecting but cancer cells have been found in the prostate. I’m going to see a surgeon in Coventry to have a biopsy and a MRI scan to confirm this.

If it turns out to be the case, I will be referred to a surgeon at Imperial College in London, who is one of only a few surgeons in the country who can remove the prostate after it’s been radiated, this is because of the scar tissue.

I wasn’t expecting this because I was always told the prostate can’t be removed after radiation. Also, most men who have my PSA at presentation have metastatic stage 4 disease.

So not good news but there is still some hope.

User

Posted 19 May 2026 at 12:21

Hi Roger. Not as good as a completely clear result, but at least it is still confined and treatable. I too had no idea you could have the prostate removed after radiation, but good news that you can if needed. Resistant little buggers those cancer cells, but your team are going to get them!! Chin up and please do keep us posted. And remember to celebrate the win, no mets!! We got this. David

User

Posted 19 May 2026 at 14:10

I will let you know how I get on next week

User

Posted 19 May 2026 at 20:10

Thanks so much for your update. Hoping for the best for you.

User

Posted 20 May 2026 at 00:38

I had RT in 2008 but my PSA gradually increased until it was above my nadir of 2.05. I was under the aegis of The Royal Masden at the time and they referred me to UCLH for possible treatment with Focal therapy within a trial. It was found to be a suitable candidate for HIFU. However, before I agreed to this treatment, I asked UCLH about having a Prostatectomy instead. They told me that I would most likely be permanently incontinent if I opted for surgery. (UCLH claim to do more Prostatectomies than any other hospital in the UK so I had to take what I was told seriously). So in 2015 I had my first HIFU. I had a second HIFU in 2021. (It is often necessary to have a second HIFU). My PSA is presently 0.06 and I am NOT incontinent.

I am not aware whether the view about being incontinent after Prostatectomy for failed RT applied in my case only or is more general. If the latter was and still is the case, you might think it sensible to check this out with the surgeon before committing to surgery.

Barry

User

Posted 20 May 2026 at 06:48

I'm with Barry make sure you ask about focal treatment instead of RP. An RP might be a cure but after radiotherapy it's a brutal option.

User

Posted 20 May 2026 at 09:11

Thank you, I will keep you posted!

User

Posted 20 May 2026 at 09:17

Thanks for that information Barry, I haven’t spoken to the surgeon yet but I will certainly be bringing up the subject. I’ve read the Ladybird 🐞 book,Why does my grandad smell of p***? and suddenly it doesn’t sound as amusing as it did.

User

Posted 29 May 2026 at 09:58

I spoke to my surgeon yesterday and he said that an operation would probably make me incontinent for life, so I suggested HIFU and he seemed to think it might be a good idea. I’m having a MRI scan and a biopsy soon, so I will take it from there.

Thank you for pointing me in that direction Barry and francij1

User

Posted 01 Jun 2026 at 12:55

That is absolutely brilliant news that your surgeon took the HIFU suggestion seriously, Roger! It must be a massive weight off your shoulders to have a more localized, less invasive option on the table instead of leaping straight into a highly complex salvage prostatectomy.

Barry and francij1 definitely gave you some golden advice there. Keeping the treatment focal with something like HIFU or cryotherapy makes an immense difference in preserving your quality of life, especially since shielding yourself from permanent incontinence is a major priority.

Getting the MRI and targeted biopsy knocked out next is the perfect game plan. It will map out the exact coordinates of those remaining localized cells so the team can see if the tumor margins are a clean match for focal ablation.

Take it one step at a time, mate. You successfully advocated for yourself and completely shifted the trajectory of your treatment plan—that's a huge win in itself. Wishing you the absolute best of luck with the upcoming scans, and please do keep us posted on how the biopsy results turn out!

User

Posted 04 Jun 2026 at 10:46

Thanks for the information Rayan, it’s given me a clearer picture on what’s happening, particularly the exact purpose of the MRI scan which I’m having on 10th of June.

I really do hope that I’m suitable for HIFU.

I will keep you posted with the results.

I really appreciate your support and comments.

Notification

Join the online community now.