Hi everyone, I have recently undergone surgery to have a large football sized ovarian mass/ both ovaries removed and full hysterectomy. They also removed my appendix while I was in there as it looked diseased.
3 weeks after the operation during the follow up I was expecting to be told that everything was fine. This wasn’t the case and I was told that I had Pseudomyxoma Peritonei, a very rare cancer and would be referred to The Christie in Manchester. This was the sum total of information that was given to me as the gynaecological consultant has no experience/ knowledge of this disease. I was given the green Macmillan general cancer support information booklet, told that The Christie would be in touch and sent on my way.
So far, all I have received is a copy of the letter they send to my GP. I have called the gynaecologist Macmillan nurse to get help chasing up an appointment and she has informed me that progress is being made. She cannot tell me exactly what as it isn’t her area of expertise.
It is now getting on for 4 weeks since I was told I have cancer and I am still waiting for any updates from the hospital. I was wondering if anyone else has had this experience? What is the normal process? How often do the MDTs meet?
This waiting is having such a negative impact on my mental health.
