hi all so I’m very new to this forum and it’s not myself that has cancer. It’s my husband. He was diagnosed in January 2025 with stage four rectal cancer which had spread to the pelvic sidewall distant lymph nodes involved.
In February 2025 he commenced four cycles of CAPOX Which resulted in a very positive response so he then moved on to 25 sessions of chemo radiotherapy (this included capcetabin)
in September we got the really good news that Doctors presumed he had a complete response to radiotherapy and there was no evidence of any cancer as you can imagine this was the best news possible and we were absolutely delighted. However we were still being referred onto a colorectal surgeon for consideration of surgery as my husband was EMVI positive and there was one enlarged lymph node still remaining however this was not showing as hot on the PET Scan so they wanted him to have a colonoscopy to check if there was any further disease present
we met with a surgeon had the colonoscopy and it confirmed no sign of disease so we just had this one little lymph node that wasn’t a small as they would’ve liked it to have been so we were given the option to watch and wait and rescan in three months and see if this lymph node had reduced in size or if it had grown they weren’t sure at this stage if the lymph node was due to inflammation pulse radiotherapy or if this was signs active disease.
after careful consideration my husband decided he wanted to proceed with surgery as wanted to take every p possible chance to make sure the area was completely clear and we got rid of cancer for good however the node measured 6 mm and the surgery cut off was 5 mm so we would potentially be faced with life changing in surgery when the node may not be active disease. really difficult decision for him to make, especially as the surgery would involve permanent Stoma. the surgeon agreed to repeat the scans as it was five weeks had passed to see if it had shrunk enough that surgery was no longer an option. wow we are so lucky the surgeon did those scans as said lymph node had increased to 10 mm in just five weeks so the decision was made surgery was happening on the 5th of December.
surgery went ahead removal of rectum anal canal pelvic side wall Mesorectal lymph nodes and distant iliac lymph nodes, including iliac artery and appendix were all removed.
the surgeon confirmed all evidence of cancer had been removed however the lymph node in question was most certainly active disease and actually wrapped around the iliac artery which had to be removed.
pathology results have comeback and confirmed that multiple nodes confirmed active disease.(iliac external lymph nodes)
Apologies for the long post a lot has happened in the past 12 months so my question is where do we go from here
we’ve been told he has completed his chemotherapy and radiotherapy treatment and wouldn’t be offered anything further and we would just need to go on active surveillance then if something pops up they would act later. I’m confused by this would a further course of chemo not be appropriate in this instance. I know the nodes have been removed but just want to make sure no cells remain has anyone else had a similar situation it really does feel like we’re just waiting for something to show on surveillance scans now.
