I was diagnosed 3 years ago with colorectal cancer, while living in New Zealand. We moved to the UK in 2020 and despite difficulties organising following during lock down etc., I eventually managed to get into the system. My CEA was 4 before I had surgery and down to 1 after surgery and during chemo. Since completing my 12 cycles of chemo, my CEA levels have been slowly but steadily rising and last January it was back up to 4. I expressed my concerned with the nurse who is doing my follow-up but she said that as my scan in June 2021 was all clear, the CEA levels were not high enough to be concerning but she could organised another scan, although she wouldn't recommend it. Instead, she send me for counselling to help me cope with the stress. My CEA levels continued to rise, reaching 6 in May and I've just had my yearly scan, which revealed nodules throughout my lungs - not looking good. Speaking to the gastrointestinal surgeon who broke the news, there were already nodules a year ago but they didn't seem significant enough to justify further investigations " we can't just investigate everyone with nodules in their lungs". Now I feel very angry: 1) I don't feel I'm anyone, after having colorectal cancer, with a 30% chance of recurrence in the liver and lungs, and 2) if I had known in January that the CT scan done 6 months previous was not actually totally clear but already presented with nodules, I would have pushed to get another one in January when I was concerned about my CEA levels rising. The point of having a follow up is to allow early detection and increase survival and I feel something has failed!!! Six months may not make a big difference (although cancer cells tend to grow exponentially), but any extra time I can have with my young children is huge to my family and I, with the hope that maybe I can see them through their teenage years :(
Thank you so much for sharing your experience with your Mum. I haven't seen the thoracic surgeon yet as they have been chasing the genetic analysis from my primary bowel tumour from the medical team I had in NZ so that they can make a decision on treatment. So, just waiting for now. Interesting to know about the laser technique, I'll definitely raise that option with the specialist. I also have a friend who works for a Manchester-based biotech called Amigen, who grow cancer cells from tumour biospies in the lab and test about 60 different drug combinations to see which gives the best response, with results within 3 weeks, so I'm going to look into that as well. Thank you very much for your support, it is much appreciated 
