What to do?

Hello MarcusOptimus 

A warm welcome to the group, although I am so sorry to find you joining us under these circumstances.

There is an issue with PSMA-PET Scans as there is a National shortage of tracer but personally I would have thought a delay of at least 8 weeks to be unacceptable. I would suggest you do the following:

* Contact PALS (Patient Advice and Liaison Service) at the hospital, tell them of the delay, you have cancer and the delay is causing anxiety.

* Contact your oncology department (or if the scan is an external one the provider) and let them know you are available to take any short notice cancellation.

Starting Hormone Therapy now would be a good idea but that would inhibit the scan showing the location of any spread.

The issue with having private treatment is that it's often difficult to return to your place in the NHS treatment system and often return to the bottom of the treatment ladder.

Orchidectomy - well that's the nuclear option and I would have thought that even with a doubling time of 4.5 months the delay in scans/treatment will have a good chance of dealing with the recurrence.

I have an issue with a biochemical recurrence at present (click on my name or avatar for the details) and my gaps between finishing and resuming treatment are around 9 months.

I hope my ramblings are of some help.

Best wishes - Brian.

Thank you Brian! That’s very kind and helpful advice, I have sent an email to my oncologist via my specialist nurses asking for them to make the referral a priority as it was marked as routine. This was after them asking me to call the imaging department at 8:00am yesterday morning to ask for a date.

Hi Brian, I should add that my uncle died of prostate cancer a little while ago, which was difficult as he suffered a lot. I have also recently lost my mum and two close friends so life has been tricky recently. I am doing my best to be positive, I eat well and go to the gym and am back to running after having surgery on my back last year. I want to be as fit as possible to face any future challenges.

Hello MarcusOptimus 

I am a firm believer that a positive attitude is 50% of "the battle" against cancer. Yes it's good to keep fit and eat well as this can also improve your health and contribute to your wellbeing. Having lost mum and two close friends, yes that can have had an adverse effect on your outlook.

Having said that 4.5 years into my journey and at almost 71 I find I am enjoying life too much!! I do try and keep as fit as possible and get my steps in everyday but I am sure old age is a factor too.

Keep doing what you are doing, keep the positive mental attitude but do try and enjoy life too.

Best wishes - Brian.

Hi Marcos Optimus

Just one thing, have u been on hormone therapy at all especially during the Radiotherapy.

Was the Radiotherapy, salvage type because the surgery didn't get of all the tumour.

Best wishes 

Steve 

Hi Steve, yes the surgery wasn’t successful and I was on hormone therapy during my salvage radiotherapy treatment.

Best wishes, Marc

Ok, so I assume that hormone therapy finished a long time ago because obviously when stopping it PSA will possibly rise again for some time.

Anyway let's hope that whatever is wrong will show on a pet scan and can be treated.

Don't forget there are clinical trials on relatively new treatments that could be worth exploring.

Best wishes 

Steve 

Hi MarcusOptimus please fill in the dates as follows:

date of prostatectomy

date of commencement of hormone therapy 

date of radiotherapy final session

date of final jab of hormone therapy

confirm that jabs were three month jabs.

Why do I want these dates?  I’m looking for possibility of PSA bounce, once testosterone’s returned.

AW

Hi Alphine Wanderer,

Thank you for your interest.

My prostatectomy was in 2019

Radiotherapy was in 2020

Last hormone treatment September 2020 and the medication was in tablet form Bicalutamide 150 mg once a day.

As you can see this was all some time ago and well beyond any possible PSA bounce. My PSA has been slowly increasing since 2021 and has now sped up in the last six months to its current level.

Hi MarcusOptimus 

thanks for your information. Yes, with those timings I agree that’s unlikely to be bounce.  It’s interesting that, post prostatectomy, your radiotherapy wasn’t accompanied with an agonist (stops testosterone production) like zoladex jab (bicalutamide is an anti agonist that blocks the testosterone receptors in the cancer cells).  I would have thought the jabs (preceded by bicalutamide tablets to pave the way and avoid a testosterone spike) would have been more appropriate if spread outside the prostate was suspected.  I note, from an earlier post in this thread, that the radiotherapy was given because you had recurrence after surgery.  AW