I went to Leeds today to meet with Dr Perren who was a kind and considerate man. I was impressed that I didn't have to wait around for hours to see him. He explained that it had taken so long as he had wanted to undertake a complete review of my notes before meeting with me.
He broadly agrees with my diagnosis and my staging although he was sceptical that I ever had any high grade cells (he said that was a matter of professional opinions). He agrees that the mass in my pelvis doesn't look malignant but you can't be 100% sure just based on a scan/MRI.
I mentioned that I am suffering with constipation again, peeing frequently and my tummy is just generally sore most of the time and I feel like a beached whale.
He agreed that I definitely had a belly and asked if that was normal for me. However I don't know what is normal anymore and half the time I think its in my head but when I was last in Weston the bloke commented that since he'd known me that my stomach had got bigger and asked if I'd put much weight on. That's the thing really my weight has been hovering around 14 stone for the past 3 months some weeks I'd gain a lb and then the next week I'd lose a bit so I haven't really put on lots of weight.
He examined my tummy and gave me an internal. He couldn't feel any lumps but he did agree it was tender and that isn't normal. They took my bloods whilst I was there and I have to phone up for the results on Tuesday. He was also going to recommend to The Christie that they have me in for a chest, abdo and pelvis CT to look at the bigger picture. He doesn't agree with me being on HRT his experience in Leeds is that lower grade cancers are more prone to oestrogen dependency but I shouldn't rush into a decision without discussing it with my medical team first. He also mentioned in Leeds that they often treat low grade cancers using hormonal therapy and they they would be doing some research in other non-chemo therapies particularly for low grade cancers later in the year so I might consider asking if I can go on the trial.
I'm having my gall bladder out next week providing my blood tests are ok and he suggest I should ask the consultant doing that procedure to have a second look whilst he is there and to biopsy anything suspicious. He did say that of course he or she might refuse.
He stated that I wasn't curable but in all likelihood I will probably still be here in 5 yrs