I had surgery in November 2023 for stage 4 CRC, I then had CAPOX chemo for 6 months from Jan 2024 until the end of June. My CT scans showed a nodule on my left lung but thus was downplayed and I was told it was likely from chest infection etc.
The nodule was shown to have grown in my CT scan in Jan 2025, then in May 2025 the scan showed growth and a second nodule. I was told to wait again and at the end of July I was told that both nodules had grown again (now 1.4 cm and 1 cm) and I was referred for a PET scan. At this meeting with the respiratory specialist I was told it was suspected secondary lung cancer and that I was now on an 'urgent pathway for treatment - surgery if there was no other areas lighting up in the PET scan). I was told surgery would be in weeks, holidays should be cancelled and that we should have bags packed and be ready to travel the 7 hours to the closest hospital that would do the surgery. I had the PET scan on 12th August, which showed a 3rd nodule in my lung, but all nodules were contained in my left lung, so I was a candidate for surgery.
I did not get an appointment with my surgeon until 16th September, an appointment for my presurgical checks was made at the same time, so I assumed surgery was going to take place soon after this. My surgeon was quite flippant about it, telling me he would do surgery on 2 of the nodules but maybe I could 'just hope that the 3rd one will go away...). He informed me that he was fully booked until 'into November'. This means it will be 4 months since being told I was on an 'urgent pathway' for surgery that would take place in weeks before surgery is likely to happen. I still do not have a date - and he did not seem to imply that I would in any way be urgently scheduled once he did become available, just that in general he was not available until November, so it would be some time after this. He did not mention anything about me being on a list for cancellations. I have now been told I will likely need to have all my scans again as they will actually have become out of date before surgery takes place.
I just feel like I am being gaslit, has anyone else experienced this? I spoke to my nurse specialist and my Macmillan nurse who also seemed to be surprised but to be honest both seemed very cautious about what they said and to a point I feel like they are being more careful about what they say rather than actually advocating for me and being truthful and on my side. I just wondered if anyone else has experienced this?
Sorry for the long post
Hi Ossie100 no need to apologise for your post. I can completely understand your worry and frustrating over the time scale of the surgery. Is it that because the nodules are small and are not overly concerning that you are not seen as a priority I wonder. Your consultant really needs to clarify this. It may not seem urgent to him, but I can understand how it feels urgent to you.
Can I suggest that you contact PALS click on the highlighted link I have created, it will take you to the NHS page that explains about PALS and how you can contact your nearest department.
