Welcome to our forum MydadPeter! 

I am so sorry this has happened to you - being told for three years that you didn't have cancer and later on discovering that you had a rare subtype. It might be worth looking into contacting PALS (the Patient Advice and Liaison Service). You can find out more about this on this page. 

I hope this helps and that you will also hear from other members here who have been in a similar situation and hopefully they will have some good tips for you to help you get to the bottom of what happened. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hello,

I can only imagine what you're going through. I only had 3 months of being told I probably didn't have cancer because all of the blood markers were normal. My scans were sent to a specialist cancer hospital a hundred miles away because there was so much mucus in my abdomen, they couldn't actually make out the organs as they had beed forced against the abdominal wall. I received my diagnosis post op because they needed to rely on the histology to diagnose.

I was told that, as this type of ovarian cancer is so rare, my hospital have very little direct experience of dealing with it and they are, to some extent, feeling their way sometimes. This is a level of honesty which means the world to me. I can accept that medicine has not yet discovered everything and there has to be ongoing research for doctors to understand as much as they can. I have much of my knowledge from reading research papers online and this has certaily helped me rationalise some very difficult moments.

I have since had instances where lesions and spots have appeared on organs and then disappeared again. In one letter to my GP, it was stated that some of these may well be tumour deposits then on the next appointment I was told there was no concern about these. No explanation of what they actually were or follow up discussion, just, oh we're not looking at that. I do appreciate how hard the entire NHS is working at the moment and the need to not make every routine appointment with the consultant. I do however think it would be invaluable, in terms of patient care and sanity, for it to be standard for the last letter sent to be read prior to appointment so that the patient at least feels they are being told everything and there is some coninuity of care.