Romy’s end of treatment scans were thankfully scheduled promptly after the date she would have technically finished her final dose of Retinoic Acid, so we didn’t have too long a wait. They consisted of all the usual tests- Lung function, Heart Echo, CT scan, ultrasound, GFR to check her kidney function, an MIBG scan, Urine sample and Audiology test, which took just over a week to get all completed. We received the results about 5 days later and thankfully there were no nasty surprises. The remaining tumour still lights up on the MIBG scans, however it had done so in previous MIBG scans so we knew this would possibly still be the case. Due to the nature and location of her tumour it had been impossible for us to achieve the coveted classification ‘No Evidence of Disease’. Sometimes ‘dead’ or inactive cells continue to ‘light up’ on scans for years, there is no way of knowing if those cells have ‘matured’ with treatment, so we just have to hope and pray that what remains is indeed inactive. We have to remind ourselves that even with patients who achieve ‘no evidence of disease’ there is no guarantee that the disease is indeed one hundred percent irradicated. The relapse rate remains one of the higher of the different types of cancer. Additionally, the means of assessing whether there is any return of the disease feel very rudimentary and limited in number (a urine sample that can indicate cancerous activity but may not actually pick it up and which can be affected by things eaten in the diet, which could give misleading false positives ….an ultrasound scan which is not a clear image and can miss tumours altogether (and actually in Romy’s case all attempts at using Ultrasound have proved so useless that it has been completely abandoned) …this leaves a CT scan which will give a clear picture of the residual tumour but would not pick up metastatic relapse elsewhere in her body. So aside from these rudimentary tests to monitor for any return of the disease, the passage of time and the occurrence of any potential symptoms (equally as vague as the scan methods, symptoms which were missed and ignored for so long at the initial point of diagnosis!) are the only means of picking up any relapse. Much the same as at the point of initial diagnosis when there was no real test to indicate that she even had cancer, even with an 18 cm tumour in her tummy. So, while the results of the end of treatment scans were good news, and we are so grateful that she remains stable, you can see why life after treatment will always contain worry that will never go away, and also why we celebrate the good results with an air of caution.
Romy’s follow up tests will happen for many many years, initially every 3 months, and to begin with the focus is more on picking up any sign of relapse. The longer term follow up will gradually focus more and more on monitoring for late effects of the extremely harsh treatments she was subjected to. In the short term, Romy will need to have all of her childhood immunisations again, as the chemotherapy has wiped all of her jabs from birth. These cannot be started until 6 months after treatment finishes, as they need to have some sort of functioning immune system to work.
Helen & Tom
