Just wanted to let everyone know how I got at my referral to University College London Hospital.
I was referred by my Oncologist regarding being referred for the PARP inhibitor trials, and I suppose I was just expecting to be told whether I was suitable or not, but it now looks like what I am actually getting is a complete second opinion. Interestingly the Prof seems to think that surgery is the best way forward, if it is possible. I have been being told for 3 years that surgery is not going to help me so I am encouraged that he is looking at my case with 'fresh eyes' even if he does come the same conclusion that it is not possible. So I get to have a PET MRI scan, and UCLH have the only one in the country! (I feel quite spoilt )
If the surgery is not possible he still thinks I should have a go at the PARP trial. He has looked at my pathology from 2005 (1st recurrence) and says that he thinks that mine is a low grade cancer, not high grade as I had previously been told. He was also interested in the BRCA testing I had at the Marsden in 2006. Whilst I don't have either of the BRCA mutations that are known ( BRCA 1 and BRCA 2 ) there is something wrong with my BRCA gene, but its not a mutation they have identified yet so its called a 'variant of unknown significance'. Although he has no evidence of PARP inhibitors working on someone with low grade cancer and only the BRCA variant he still thinks it could be worth giving it a go.
All in all, I was really pleased with the consultation. I really feel that the Prof is looking after me. I was half expecting just to be told I wasn't suitable for the trial and being shown the door (which is essentially what happened when I went to Bart's last January) I will go to see him again on 3rd September, so even though I still don't know what is going on, I feel quite content as there is no immediate rush for treatment.
As we all know, the waiting is the worst bit, but I am well practised at this over the past 14 years and so I shall take my usual stance of not allowing myself to think about it and then I can't worry about it. I shall be keeping myself busy with decorating the house and enjoying the beautiful weather. At the weekend I went camping with my walking group. On the Saturday we walked 14 miles from Beachy Head, westwards along the Seven Sisters. Then dinner in the pub and a bit of stargazing back at the tent, managing to see a few perseid meteors. On the Sunday we walked the 3 miles to the train station with all my kit on my back and that was where I bid my friends goodbye as I was rather tired by then!
Take care all. Vx