Good evening to you all.
Chiane had her MRI today.
We will need to wait 1 week for the MRI results. We have another meeting at GOSH next week and Monday to discuss the MRI.
We had a meeting today regarding her genes and to be honest, we are no wiser after the meeting, than before the meeting. We have been told that they disagree with the gene report that we have provided and further testing is required on the hMLH1 gene which can take anything from 8 weeks to 10 weeks. If they find any loss of expression in the hMLH1 gene, they need to carry out further tests on the PMS2 gene, which will take a year.
Chiane’s cancer can be back by then, or worse, dead. The NHS is either really under staffed or she has now become 100% research and not priority. We were shocked sitting in the meeting expecting to discuss different options of treatment, only to be told, that they require to test 1 more gene, which will take at least 2 months, and maybe a second gene, pending results of the first gene, which will take a year.
Frustration is an under statement here.
We agreed for them to do further tests as chiane is not required to be there. They have her genes and can continue to do the research. We are not going to wait for the NHS. It’s an aggressive cancer that can resurface in 6 months… There is no time to waste. We will get next week’s MRI results out of the way and then decide which way forward.
Andia and I have already decided to get another 3rd party to re-test her genes….again. This time from an approved laboratories in the states. If the gene report is the same from the company we use in the states, as per out first report… Some hard questions will be asked by us to the health system in the UK. To wait possibly a year is insane…