Hi All
I wanted to get a little perspective from the group. I need some other views. I developed sepsis last August and as a result of that it was discovered in the battery of tests and scans that I had stage 4 Uterine Serous Carcinoma. I was offered palliative chemo from Sept to Jan 20, which I responded to far better than I think they thought I would . That ended on the 4/1, my ca had gone down considerable ad. I had no appointment to see them in 6 weeks. I came into an insurance policy and paid to have my biopsy DNA and RNA sequenced, the report was sent to the hospital . Because lockdown had started I had a telephone call. The consultant told me the result was disappointing and he couldn’t see what targeted therapy would help. A wonderful person on this forum cheered me up as that conversation left me feeling very depressed. In May I had another appointment and requested bloods as none had been taken since Feb. My cancer markers had gone up but a four weekly appointment t was in place and I had a scan the week before that confirmed there had been some cancer growth but 1 cm .I had asked about a trial in the middle of my chemo and I asked again. I was told ‘ well because of Covid the trials have closed down, and that’s that really at the moment , we could look at another bout of chemo and there is a trial at another hospital. I had also discovered that the first lovely consultant I had seen was a lung and prostate oncologist not a Gynae oncologist.
I had a phone call from the head of gynae oncology at the other hospital who was at home because a patient had presented with Covid. You have had surgery he said to me ? No I said it was never offered. Radiotherapy , no again never offered. As for my report of the tumour DNA and RNA. He tells me there is an abnormality that makes it receptive to a targeted therapy, also I need to be seen by a geneticist as if I carry this gene my female relatives need to be screened. He asked where it started I to,d him they said I had a benign tumour on my ovary and a malignant polip. The professor says there are a number of possible treatments we can consider for you if he could get oliparp for me it’s a maintain with drug. If it was uterine cancer they could try and apply on compassionate grounds. He also wanted to talk to the surgeons and the radiologists, but needed to go through all of my medical records to formulate a plan that would work for me and discuss it in the MDT. I told him I read around my cancer , research papers , he told me patients should do that to keep people like him on his toes. They were there for the patients not the other way round. He go the CNS ruse to ring and check I was ok, she gave me a number and said ring anytime if I left a message they would ring back even if I wanted a chat . I was also provided with the professors secretary’s number. I wept it was the first time I felt I had been taken seriously . I have been asking about theses things for months . So my case is being reviewed an appointment with a geneticist lined up , scan and see the professor in 4 weeks . However I am in a state of shock and feel quite angry ,am I being really unreasonable ?? Xx
Hi Anndanv
thank you so much for getting back in touch with me when you have so many things going on for yourself. I think I will rephrase the works and say I am just very, very disappointed 
I agree with you that being angry is a waste of energy. I am thankful for my second opinion but have had to push for it myself none of the above was offered by my current hospital. I really hope you get your pain sorted out and thank you for replying xx
