Active surveilance

You should have  nurse allocated to you  phone her she should know or will sorted it for you

If no joy with the nurse you could contact the PALS service at the hospital. If it is Salford I have attached the contact details. Also do you have the urologists name, you could try emailing direct expressing concerns particularly as they have already cancelled one appointment and saying it is causing you stress and anxiety.

https://www.nhs.uk/services/service-directory/salford-royal/N10866564

The Northern Care Alliance PALS contact is here.

https://www.northerncarealliance.nhs.uk/contact-us/patient-advice-and-liaison-service-pals

Ive rung but it's always an answering machine telling me to ring the main switchboard. I'll keep trying.

Thanks, I'll try these.

Hi,

Just to avoid any bad surprises and until you have your appointment sorted contact your GP for PSA test to make sure there are no jumps there. Although the PSA is not the only indicator it will give a good idea of direction.

Lots of love

Dafna

Yes!  My husband went for a blood test related to his throat.  He asked the nurse if his PSA would be checked....he's 73 and a year ago his score was 4.2. She said it hadn't been requested but he persuaded her to check it.  We got an urgent letter three days later please come back. The score was 7.9. Literally 15 minutes later we had a call from urology Canterbury for an MRI the next day! The score was Pi~rads 5 on one side and 4 in the other (two lesions) Two weeks later an immediate appointment for a perineal biopsy on a Sunday!  26 procedures! Ouch! 22 samples showed positive cancer.  This showed a Gleason score of 3+5 =8. CT scan and Bone scans within two weeks showed no metastasis.  We are now waiting for appointments with oncologist and urologist to decide hormone therapy with radiation OR radical prostatectomy...,.doing lots of research but still not sure which to do?

Will do!

Hi Hope100 , sorry to hear you have joined our club, but sounds like it is contained, so very treatable.  I hope you aren’t researching on Google!  This forum is a great source of info, but obviously any decision as to which way to go must be for you to make.  Please ask any questions and the team will give you honest answers.  Hope you get appointments soon.  Best wishes, David

Thank you and yes! Google has been our main source up to now

Our main question is : what we don't seem to be able to find out is exactly how the long term effects of hormone treatment will impact in our lives.(If we choose this route over surgery) We live on our boat and sail most of the year so are worried about muscle waste, brittle bones, weight gain and mood swings......help!

 Hope100 , that’s a bit like how long is a piece of string.  We are all different in the way we react to HT.  If your OH is fit, then he has every chance of being able to maintain some level of fitness.  We have guys on here who can still go on a days hiking while others struggle to walk very far.  I am 75 and some of my loss of strength is definitely age related.  As for brittle bones, I take calcium as prescribed by my oncologist and get a bone density scan every 2 or 3 years and vary the calcium dosage accordingly.  Weight gain is partly age and enjoying food/wine and partly HT, although not a massive problem to me, but I know others struggle.  As for mood swings, I don’t think I get them, but HT (or having cancer) has brought out my female side.  Probably best to chat this through with your medical team once you get your appointments. Best wishes, David