You will see from my profile that I had my follow up meeting with the urologist from the CT of the 18th July today and it was very dispiriting to say the least.
I fully expected having been called in for a meeting that the results would have been looked by the MDT and I would be getting on the way with my treatment plan today---oh no.
My case had not been discussed and from what I could gather the first time my scan report had been looked at was by the urologist 10 minutes before the meeting. What he saw was that the CT scan also showed a non-conclusive suspicious area around the eye. So i was told by the doctor and a very apologetic CNS who was also in there that basically this meeting was a waste of time and no treatment decisions could be made unit after the next MDT meeting on the 6th August.
I'm really concerned my HT treatment hasn't started two weeks after my meeting were I was diagnosed. They were very reluctant (refused) to commit to anything until it was signed off at the MDT. From which the options seemed to be - the MDT decides the eye isn't a problem and we start HT asap after the meeting. It is a problem and we start HT anyway. Its still inconclusive and we're back to more tests - PSMA PET-CT and/or a biopsy - giving further delays.
My initial raised PSA blood test was in April and my first consultation with the urologist when the first cancer suspicions were raised and a MRI booked was May 30th and my aggressive cancer is still not being treated. I make no apologies this next week is going to be a struggle,
If anyone as any comments advice and anything positive i could do before the 7th August - which is when the CNS promised i would hear again - the floor is yours.
Your first course of action is to contact PALS - patient advice and liaison service - at the hospital, Tell them you have an aggressive cancer and are now past the guidelines for having treatment started and it’s causing anxiety.
The next step is the formal complaint to your Trust about the long delays.
Both the above take time. I personally would contact PALS but at the same time ringing Urology and as politely and as assertively as possible stating your case for action.
The nuclear option is to e-mail your MP however you may shoot yourself in the foot if you haven’t tried PALS and Urology first.
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.
Hello RichE
Yes I do - as my oncologist said to me, the day we start you on HT is the day we put a stop to the cancer. In simple terms the HT removes your testosterone, the cancer's food. It then stops growing and spreading. The Radiotherapy that come along later kills the cancer off.
The timeline is 14 days GP to being seen in hospital and then 62 days to start of treatment.
I am on holiday at the moment and my reply above was sent from my 'phone - now I have access to my resources here's a link that may help:
Sadly on this journey you have to fight for your treatment and I hope the above helps.
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.
