I've finally joined up after reading the conversations for many months!
In 2017 my partner (58) had a "routine" blood test which gave a PSA of around 5. This was just a routine test and no symptoms had been experienced. The basic checks all appeared fine and so another PSA was done a few months later and this showed a slight increase.
He was referred to the Urology for a biopsy in early 2018 and the results from this were all ok. This lead to the MRI which showed some suspect areas and so when through the template biopsy.
In July 2018, the results were received and the news was the bad news - a score of 3+4. The Urologist offered the RP or HT & 4 of radiotherapy. He was given a period to go away and think about it and read about Brachytherapy. At the next Urologist consultation, he brought this up and got referred to the urology clinic. At Nottingham, they don't offer Brachytherapy, but Lincoln can offer the treatment.
After a discussion with the Urologist, Brachytherapy was the decided treatment. At the end of September the HT started for 4 weeks and then in November the operation took place, and he was released the same day. Another dose of HT was planned for 24 December 2018 (planned by Nottingham) but Lincoln said this wasn't needed (including in writing) This is where the admin problems started! Trying to get a definite answer of whether this 2nd dose is impossible! Nottingham don't respond, apart from when he didn't turn up for the appointment... with Nottingham saying Lincoln shouldn't be saying overriding Nottingham's plans (they must of forgotten he called days before the appointment to check and they didn't get back to him)
He's been back for a CT scan at Lincoln, and continued to chase Nottingham for a follow up appointment and next steps - but this is proving impossbile. It just feels like he's been lost in the system.
Today was the final straw - out of the blue he's received a letter for a MRI scan on Thursday in Lincoln. No explanation was given. The letter was stamped first class and short notice, so of course this unexpected letter is running wild in our minds.
We've maintained a normal life throughout this, and apart from some minor side affects so far, all has been well. But it's amazing what this illness can do. No symptoms were ever experienced, but the mental pain caused by the process is much more painful. As much as we've been strong and positive, tonight due to this MRI letter we are feeling let down by the system and the support channels.
Apologies for the rant and thanks for listening.