Hi, I’m new on here and would appreciate others in similar situations sharing their experiences.
In October 2021 at the age of 62, following routine screening, I was diagnosed with Stage 4 Adenocarcinoma of the Caecum with multiple liver metastasis and I was told that my cancer was particularly aggressive - RAS wild type, BRAF mutation positive, K601E positive. I’d had no symptoms whatsoever so this obviously came as a huge shock and was devastating to myself and family. I was given a poor prognosis, informed that curative surgery would not be a possibility, and offered 8 cycles of palliative chemotherapy with capecitabine tablets and oxaliplatin infusion (CAPOX). The midway and post treatment CT and MRI scans showed a good response with reduction in the size of the liver secondaries and no apparent new lesions but the MDT still advised that liver surgery was unlikely and the team have been totally dismissive of any questions I ask about the tumour in the bowel and whether surgery to remove that could be considered.
At this point I changed to a different consultant oncologist who seemed more enthusiastic about giving consideration to possible surgery and he arranged for me to have a PET scan which still showed lesions in my liver but no active cancer in them or anywhere else in my body except the site of the primary cancer in my bowel. The oncologist was quite hopeful that removal of the bowel tumour could now be a possibility but once again the MDT are unwilling to consider this and are merely advising to continue with chemotherapy in the form of capecitabine tablets only. The MDT has not been responsive to my request for explanation or evidence to back up their decision. I still have no cancer symptoms.
To be honest, from the start I have been given the impression that the NHS/MDT has just written me off and I most certainly now feel that they are not willing to give me any chance of a possible cure or prolonging my life so I am wondering whether to explore the option of private care but I have no idea how I could go about this or where to start. Any advice or experiences would be gratefully received! I would ideally be looking in the Lincs, Notts or Yorks areas. Thank you.
