Hi - i am new here and hoping to support and get support in what are awful circumstances for us all
In September i was diagnosed with a right colon tumour and a collapsing bowel due to this and had a right hemicolectomy on 24/9. Slow recovery due to infection and now the lab reports are in and miserable. T3 N2b ( 8 of 33 nodes have cancer) and L1 and V1 - but hurrah R0 so surgery was successful. Apparently the tumour type is very rare with MMR proficient, ruling out immunotherapy. Plus a rare BRAF mutation.
My surgical team advise that cancer had spread to nearby nodes including Apical. This is classified as Metastisised cancer as it is a major node, So M1 added although there is no evidence of spread from pre operative CT scans.
Really down about this as it has underlying implications of stage 4.
I will begin Capox Chemo on 28/11/25 - but no scans planned and am worried sick about spread to the liver and through the lymphatic system to distant sites.
Does anyone have experience of this, and what investigations should be done to check spread?
I am 59 and otherwise in good health. Oncologist suggest a 60% chance of reoccurrence could be lowered to 40% with successful Chemo. So i was hopeful until the awful 'M1' introduction by GP nurse today from medical records.
Basically terrified!
Hoping someone can offer support......
Janey
Hi Janey,
Welcome to the group (that no one wants to be in). I'm sorry to hear what you going through, sounds like you've already been through a tough time with surgery. But take courage - the R0 is really important. Surgically getting everything is a big win. As my lovely surgeon calls it - a 'reset'.
I have Stage 4 colon cancer. My experience on scans is - they've always done PET scans on me to look for distant metastasis. The PET scan is not as detailed as a CT or MRI but will show 'flares' which may be cancer or inflamation. If there is a 'flare' they've investigated further with MRI/CT/colonoscopy etc as needed...for example I had zero symptoms last year but a PET showed a 'flare' in the pelvic area, so they then did a MRI and found the trouble. Just to add, in terms of timing of PET - because infection shows on a PET, my surgeons have always waited if there is any infection before scanning. Also they said to me besides infection, its generally difficult to interpret a PET post-op...they've always waited at least 8 weeks before doing a PET post operatively, often longer. To give you idea, my first surgery the sequence was - PET + CT + MRI + colonscopy, then sugery, then 6 months chemo, with PET & CT at 6 month mark.
I know distant metstasis is a real worry, but do know liver metastasis is really not a foregone conclusion. Despite me being Stage 4 in the 6 years since my diagnosis I have never had anything in my liver. I have had small mets in my lung - which were 'easily sorted' with ablation (literally an overnight stay in hospital). So despite recurrences, I'm still ticking along & enjoying life. Lastly, you must remember the fact that you are generally in good health is also a big plus point.
My last thought, I know its very hard, but over the years I've tried to focus on the small everyday good things - I tell myself to 'bank' those, like a walk on a crisp morning. Wishing you all the very best
Hello - What courage!
I find it so difficult to deal with unknown - just my personality. This journey will be as long and as hard as that makes it, but the facts are facts and I must try not to let my imagination elaborate on them.
You are doing so very well and that's a real boost of encouragement I need.
I have a CT scan booked for December 10th, with follow up with MRI if anything suspicious is found. I have been through the experience of asking about PET scans with my husband ( who was diagnosed with Malignant Melanoma in 2018, but had successful biological therapy and is still here !) They always seem reluctant, quoting the false positives of the results, but i understand that this is the gold standard for stage 4. So your treatment has been excellent, which must give you confidence.
At the moment even the most beautiful things have such a feeling of overwhelming sadness. But I must be strong. I have always considered every day to be lovely. Even the wet, dark and stormy ones. I appreciate all I have, and have never thought with this diagnosis 'why me'. If it has to be someone, then why not me.....
Much Love, Janey XX
Doing a virtual salute this side. :-) Your wonderful life attitude will stand you in good stead!
Your commment on not saying 'why me' totally resonates - my thinking was good and bad stuff happens in life. Thats just the way it is. We don't object when we have good stuff in our lives...we don't say "oh no, thats too many good things, too much happiness, enough already!" - so when i get a shovel of bad stuff, how can I complain. (Especialy given in my 52 years on this planet I think I've had a motherload of good things!)
Snap. How funny, I also have my scans on the 10th Dec. Will send you some warm thoughts while I'm lying in my MRI tunnel.
xx
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