New here

Good Afternoon Gpa53 - A warm welcome to the online Prostate Community - as I said in my post on "New to the Community" we are a decent bunch (we do have a wicked sense of humor - but hey we have cancer!!).

As I said to you before - it's not my specialist subject but assuming the Prostate Bed was left in the operation then there can still as I understand it be a PSA reading and it could well be this causing the issues, I know some of my fellow community members will be along to give further clarification.

As to the hospital - if you still have no reply on Monday - try their PALS (Patient Advisory  and Liaison Service) and tell them of your anxiety

Best wishes and welcome - Brian..

Thank you Brian. That's very helpful. I will certainly do as you suggest. Best wishes. 

Hello GPA. Sorry to hear of your worries. In a situation like this, not being able to get through to someone to talk to just makes the whole situation 10 times worse. What I do now is take the name and contact details of each and every person we speak to. I think I’m building a telephone directory of our local health service! It did mean that, yesterday, with a non cancer related health emergency I was able to speak immediately with the consultant by phone for advice.

i hope you hear from somebody soon! Just remember, that if there is a recurrence it will have been caught very early and will be quickly treatable. ,

Thank you. It's good to know I'm not alone. I've also been advised here to disk to someone at the Patient Advisory Liaison service. 

Yes, I have used PALS but I don’t think they operate at a weekend in our local trust. They have always been very helpful but the last time I contacted them they initially said they do not deal with immediate problems. I told them that we were dealing with a case of medical neglect ( we were!) and my next phone call would be to seek legal advice. Suddenly they had capacity to deal with my problem immediately! I have learned that the only way to deal with the NHS is by being politely assertive . Good luck !

Good morning Gpa53 .

A warm welcome but sorry that you have had to come and find us. Feeling churned up is a natural reaction. You have been through all the emotions when you were initially diagnosed and suddenly you are faced with having to deal with them again. Once you have managed to get through to the clinic you will probably be back into the cycle of scans to find out what is causing the increased PSA and then targeted treatment can be organised - usually radiotherapy if you have not already had it to the affected area. Hormone therapy is usually recommended to keep things in check to start with.

Treatment for a recurrence is usually successful and unfortunately is required by at least a third of men who have initially had a prostatectomy.

Please come back with any questions 

Thank you very much. Your support and encouragement is much appreciated. 

Hi Gpa53. I had op 18 months ago and I was told at 6 weeks post that I had zero margins and my consultant was confident he had removed all the bad stuff. However my PSA is now like yours 0.2, which has left me feeling scared and frustrated too. Those feelings are of course natural and expected. What I have learnt is that there are a number of options available, even if you have had radiotherapy previously. There are different views on when further investigation and action should take place. I have been told by my consultant that no action will be taken with PSA readings of less than 0.4. If and when that happens I will have a PSMA PET scan with a view to ascertaining where the cells are and then have radiotherapy to target those cells. It would seem that I will not be having hormone treatment as well. Others on this forum have been treated for reoccurance at 0.2.

Thanks for that. It will be interesting to hear what my consultant says when I eventually get to see him/her. I know of someone else who had a reading of 0.2, had scans, etc, identified cancer in his pelvis. He had radiotherapy and now psa levels are back to where they should be.