Well I wasn't expecting that

User

Posted 17 Mar 2026 at 15:36

Hi.

I was originally diagnosed in October 2025 , PSA 83.4 , Gleeson 4+5. after the initial shock, tears etc I had managed to find a positive place/mind set. I have suffered from Ulcerativie Colitis for 15 years , but this is under total control and has been for 14 years with the use of Azathioprine and Octsa. The MRI then PET scan showed the tumour had broken through but not gone any where else ( localised) so the plan was HT to shrink the tumour then operate to remove with a high cure rate. Then this week I get a call from the surgeon, wants to see me following a second MRI 5 weeks ago, PSA now 13.4 and he has placed me on the list for open radical surgery. he has also said it is not curable and I have 4-8 years , totally confused now and back to square one mentally as well. I am in for post op checks tomorrow (18/3).

User

Posted 17 Mar 2026 at 18:07

That does seem odd as typically hormone therapy +/- chemotherapy (and not surgery) is the recommended treatment if the PC has spread to a point (e.g. the bones or organs) where it is considered incurable. Hopefully the appointment tomorrow will give you an opportunity to ask questions of the surgeon and if you aren't getting clear answers, the cancer nurse specialists at your hospital.

Best wishes,

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User

Posted 17 Mar 2026 at 21:22

Hi Paul,

Sorry you find yourself here but there are a lot of supportive people on this forum. It sounds to me like you should get a second opinion, for many reasons. Our experience was that physicians talked about treatment with "curative intent" for locally advanced PC (even quite a bit more advanced than yours). You will find that many people feel that term is misleading and maybe your physician aims for patients to be pleasantly surprised rather than very very disappointed. But RP can be part of an aggressive treatment plan followed by HT/RT. Sounds like they will try to even get clean margins for you.

The second reason to get a second or even a third opinion is to find a top surgeon. Recovery from Open RP could be more difficult than RARP but it would be good to talk to experts in both to get more information. Several gents on here have talked about "the Rolls Royce" of RP, neurosafe RARP. If we were in your position and had found this forum sooner, we would have looked into that.

Wishing you the best.

User

Posted 17 Mar 2026 at 23:37

You haven't said why it's suddenly regarded as incurable.

I think you need to see an oncologist before you do surgery. Surgery isn't normally used as a treatment for incurable prostate cancer, and radiotherapy can cure cancer at stages where surgery can't.

User

Posted 18 Mar 2026 at 01:35

Hi, Paul.

I'm sorry about your diagnosis but welcome to the forum, mate.

I am also confused. In your profile you say in October 2025, that your initial diagnosis was T3a (capsular breach) but no further spread. Are you sure that there was no lymph nodes affected? Was it, at this time, that surgery was deemed a suitable treatment option. If so, I cant understand why you put on HT, this is not usually recommended prior to surgery. Also, is there any particular reason why you were having open surgery rather than RARP?

From what you've now been told, in just four months, as a result of a follow up MRI, they are now saying that your disease has metastasised and is now incurable? If that is the case, I'd be asking what is my cancer staging now, and where has it spread to?

I'm also mystified why, if your disease is incurable, are you having surgery. The substantial drop in your PSA indicates that HT is effectively controlling it. It is rare to have surgery for metastatic disease.

There may be reasons unbeknown to us why surgery is still deemed appropriate. However, I would check at you pre-op assessment, that they are aware, of your change of diagnosis. I found several times during my treatment that the left hand didn't know what the right hand was doing.

Edited by member 18 Mar 2026 at 01:44 | Reason: Additional text

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