I just need an opportunity to write down what has happened to me....
I was diagnosed with 1b1 just after Christmas. Roughly 2.5cm tumour and the plan was RH and 3 different consultants told me this was treatable and sorted easily with the surgery.
I went in for surgery this week and they had to abandon the operation because of 2mm spread on to top of vagina - tumour itself is still the same size, I guess just it's position is awkward. They said there was a question mark all along as to whether this was the case based on the MRI....but no one told me.
I'm home and in agony from what surgery they did - removed tubes, repositioned ovary and sorted some scar tissue out. I also haemorrhaged badly.
I met the oncologist who will give me the usual 6 weeks chemo radiation or I can opt to be put into the INTERLACE trial and possibly have 6 weeks chemo first. I have no idea what to choose, I'm so confused. I can't believe I have to choose what might be best for me. I'm scared of loosing my hair with the chemo part of interlace if I get it and the longer term side effects of having chemo which they can't tell you about because it's a trial and they don't know.
I'm struggling with how vague they are. All they keep saying is you've got a 20% chance now of recurrence or death in 5 years - chemo first with interlace might improve that, we don't know. It's up to you. I've got to have loads more scans and tests and feels like being diagnosed all over again and they could come back and go 'oh actually, sorry, our mistake, you're 4a not 2a'
I'm so tired of it all already and feel dreadful from the pointless surgery that I don't know if can be bothered to do any of it. I don't trust what I'm told and feel like whatever I do I'm going to die anyway, it's just delaying the inevitable. They said it'll be 6 months before I'll know if the treatment has worked....this just seems like forever. You just get treated and sent away to hope for the best for 3 months and then what? It spreads and you die anyway??
Sorry for this awful post I just don't really have anyone I can say it too. Everyone just wants - treatment and recovery - however that happens and it's just not that simple.