Hey people, im new here and a first time poster so please bare with.
After draining an empyema doctors found a cancer mass, after a lot of hassle and messing around from doctors, I.E originally it wasn't cancer, then it was (apparently a ultrasound missed the mass) i was fitted with a stoma for a bowel obstruction and given a colonoscopy.
Numerous mris and ct scans later didnt 100% prove cancer but rather a high grade dysplasia, but also a mri showed a solitary liver met (which I know in terms of mets is great news) so this clearly indicates stage 4.
I was sent home and told a flexible sigmoidoscopy would be arranged, this happens tomorrow. Today I had a conversation with a clinical nurse who all but confirmed cancer, telling me they're sure it's 99.9% cancer, and they're hoping to cure.
My issue is, she also also told me they want to start chemo and surgery in the future to cut part of the liver and eventually the bowel, however, after doing months of research (I originally went into hospital early april and researched since) myself I have decided I would prefer a non-sugery approach, by combining capecitabine pills and SBRT, as opposed to their more aggressive approach.
I suffer anxiety as well as agoraphobia so that treatment plan suits me much better (even though I know id have to.leave home for the SBRT). Do you think I should advocate for this or go along with what im told?
Also to compound things, this is my second flexible sigmoidoscopy after the colonoscopy and still they dont have enough tissue to give me a 100% decision.
Should I tell them to use what they already have or is there an alternative route I can take?
Apologies if in wrong forum.
Many thanks
Hi PopPop121
I am sorry you are facing this. I can see you have posted the same post in the bowel cancer forum, and I suspect you will get far more answers there as it’s a much busier forum than this one. I do have secondary liver cancer but my primary was triple negative breast cancer. I can’t advise whether the treatment you prefer would be appropriate for you or not. With a cancer that has travelled through the lymph or blood system as yours probably has done to reach the liver, it’s important to have a systemic treatment that can reach cancer cells that might be elsewhere. Capecitabine is an oral chemo but I don’t know whether it has any efficacy on your cancer. Even if you could be treated with this you would still need hospital appointments for check ups, blood tests etc.
My own liver mets were treated with microwave ablation after I had had systemic treatment. This required an overnight stay in hospital but is orders of magnitude less invasive than a liver resection.
Please make sure they understand your issues with anxiety and agoraphobia and ask them to explain the benefits of their preferred approach to you, and to discuss whether there is a lower intervention way forward that could be taken.
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