Hi,
I’m new to this forum and just looking to connect and get some advice. I’m 66 years old and post surgery and radiotherapy for my prostate cancer. I was diagnosed in 2018 T3a Gleason 7 (3 + 4). My PSA has been steadily rising since 2022 and has recently jumped up from .83 to 2.05 in six months. I am on a waiting list of at least eight weeks for a pet scan. The long waiting time for the scan is causing my too worry that the cancer is spreading especially with around a four and a half month doubling time. Has anyone thought of getting a private pet scan and if so what was there experience? I know it’s costly at around £3.5k.
In the meantime I have been doing some research into hormone treatment and orchidectomy.
Many thanks!
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.

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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.

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Steve, yes the surgery wasn’t successful and I was on hormone therapy during my salvage radiotherapy treatment.
Best wishes, Marc
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