Writing
Hi everyone,
I’m 33 and looking for a bit of guidance and, if I’m honest, some reassurance from people who may have been through something similar.
I was diagnosed with stage 2, grade 1 RCC in 2021 and had surgery. Since then my surveillance scans have been clear for around five years.
My latest chest scan has now shown a few new lung nodules that definitely weren’t there on last year’s scan. I’ve been told that one is 11 mm, although I don’t yet know whether that is the largest or just one of the nodules. My specialist has reviewed the previous scans and confirmed these are new.
Nothing has been confirmed as cancer yet, but because of my history they are obviously concerned about possible RCC recurrence. I’m now waiting for further abdominal imaging and then presumably MDT discussion to establish whether there is anything elsewhere and what the next steps are.
Physically I feel pretty normal. I’m not coughing or breathless and this was picked up incidentally through surveillance rather than because I developed symptoms.
I also have chronic kidney disease, so that adds another layer to any treatment decisions.
The part I’m struggling with most is the uncertainty. We have a 7 month old baby at home, and my wife is terrified as well as me. I think that is making it much harder not to jump straight to the worst possible outcome.
I’d particularly be interested to hear from anyone who has experienced:
• RCC returning around five years or more after the original diagnosis
• recurrence limited to the lungs or only a few lung metastases
• lung surgery, wedge resection, SABR/SBRT or other metastasis-directed treatment
• several small lung nodules rather than one isolated lesion
• living for a long time with recurrent/metastatic RCC or getting back to NED
• managing RCC treatment alongside reduced kidney function
I’m currently living in Newcastle but my cancer surveillance and specialist team are in Edinburgh, so I’m also considering whether I eventually keep treatment there or transfer to Newcastle if ongoing treatment is required.
I know nobody here can tell me what the nodules are, and I’m trying not to get ahead of the scans. I’m just finding the uncertainty very frightening at the moment and would really appreciate hearing from people who have been in a similar position, particularly positive long-term experiences as well as practical advice on what questions I should be asking my team.
Thanks for reading.
