• 19 replies
  • 90 subscribers

I had a positive FIT test in early 2023.  Colonoscopy showed stage 2 sigmoid tumour, with no spread.  I had anterior bowel resection in April, apparently was successful.  I was then informed in May that there was 3 lymph node involvement so commenced cApox chemotherapy.  Following dose two of oxaliplatin I had striddor and anaphylaxis. I continued with oral capecitebin until Christmas 2023 .  CEA levels were 1.8 to 2.0.  I had CT scan April 2024 and the results this week  show the bowel is clear but there are some nodules on my lung/s.  I cannot describe how devastated I am.  I am planning my funeral etc etc and this is upsetting everyone around me. 

  • Hi  

    Totally understandable but the robust scanning really does let them get onto this quickly .

    My mum has been dealing with lung nodules since 2016 and still has some .

    They initially detected them at 2mm as that’s the size they can pickup now . When one started doubling in value at 7 -8 mm  two years later they removed it with Vats keyhole and she was home two days later . 
     has used Radio frequency ablation to deal with two very successful and others use chemo depending on criteria .

    Did they mention the size or volume ?

    My mum used Cetuximab last year and got great shrinkage . She is off treatment now but never had any issues so far .

    The other thing about lung nodules . Not all of them are cancerous . Have you had a treatment plan or a pet scan . My mum

    had some that disappeared on their own after staying for a few years ! 
    The robust scanning gets ahead of things .

    Definitely not the time to plan for your funeral . But totally get the fear . It’s a horrible time waiting to hear what the outcome is .

    Take care ,


    Community Champion Badge

    Helpline Number 0808 808 0000

  • Sorry to butt in on this thread, but I really wanted to thank you Court for such an informed reply, which is also helpful to my situation. I hope it might also help you kj64.  I find it is so helpful to read calm and reasoned explanations on this site. Thank you so much. All the best to you all. 

  • Hi  

    So pleased to hear that . To be honest I was far from calm in the early days but we all grew with the process . Heading towards 15 years as a stage 4 patient for mum but it’s been so encouraging the past five years in particular to see other treatments now coming into play .

    Not sure what your own situation is but all the very best and here’s to positive outcomes .

    Take care ,


    Community Champion Badge

    Helpline Number 0808 808 0000

  • Apologies for pushing into the chat  but I just logged in to pose a question about Cetuximab, when I saw your mention of it here. So pleased to hear it worked for your Mum.

    It's been suggested, along with previously used Folfrini, to help shrink another liver met and old lung mets. The list of side effects is horrid, but most worrying to me is rash and strange hair growth!!  Glad to know it helped your Mum. 

    Best wishes to everyone


  • Thank you court for your reply this has given me some hope and calmed down my racing mind.

    I was advised by the colorectal surgeon last Thursday of the lung  nodules and did ask the quantity and size, they said there was 3 about 4mm but my mind was way too far ahead  to take everything in.

    my case was referred to to the thoracic team that day and apparently I will have an appointment to discuss options/ treatment in the next 2 weeks.

    best wishes


  •   When my mum started on this journey they could only see things at 5mm . Now the scans are so incredible they pick everything up .

    I think they need to be around 1cm for the PET scan to pick them up .

    These are tiny . This has definitely been well ahead of the game . My mum had one at two cm in 2022 after she had been discharged from oncology . She was in hospital for another reason and the oncologist still referred to as small . When I had a look a lot of primary tumours are much bigger before they become symptomatic.

    It you look at the end of your finger nail , and remind yourself it’s roughly that size .

    They actually just watched my mum’s at that size until they were slightly bigger .

    They will have a good plan for you .

    It gave us quite a knock in the beginning but there is still a lot of different treatment options .

    Best foot forward and you can definitely shift your focus from planning  for good intervention and treatment .

    It gives you such a fright . 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Hello   good to see your name pop up .

    Cetuximab did a great job for my mum . Given her age and due to covid they were able to give her it on its own .

    It was very different to chemo in that it did not accumulate as such but to med each side effect took a turn and was different each cycle then seemed to fade into the background. I think it would be a bit tougher with chemo too . But mum Able to use it for ten months .

    I need to pop out but happy to give you our experience in the afternoon. The rash went quite quickly as they have you all set up with a kit but her skin remained rough . She had to trim her eyelashes . But as long as you are vigilant with creams it was doable . Don’t remember any other facial hair . 
    I still have the list fresh in my memory though .

    Be back soon . 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • Thank you again 


  • Hi Kj64. A number of the replies you have received have, hopefully, provided some perspective. To give you a little more I had 31 lymph nodes removed during my bowel resection, of which 22 were cancerous; from what I’ve read on here that might be some kind of record! That was nearly two years ago. 

    The cancer has now spread to my para-aortic lymph nodes which are in the space between my spine and stomach. The affected lymph nodes are a 11cm chain, with the largest of them being 2.2cm across. I am now incurable but not untreatable with my oncologist considering radiotherapy, because, like you, my experience of chemo was not good - see my profile.

    Yes, I have had to plan for the future but that has not stopped me living for the now! 

    There is plenty of support available. All the best.


  • Time got away from me  

    Purely from an observational point of view and given it was given alone you could see the difference between chemo and Cetuximab given it attacked the protein on the surface of the tumour as I understand it , it also attacked other cells . Namely her skin . Took on a rough aspect , had to be very vigilant with her creams . The hospital she attended is proactive with the rash .Constant antibiotics, a steroid cream which she kept in her fridge for flare ups but rarely used , and a lotion to wash with and a moisturiser they provided . She did however move over to Alturist ( I think ) moisturiser as it’s designed by a dermatologist and she was fine with no reactions but that was just her own trial and error . Not on the hospital list but she could also use their sunscreen . That’s a must with Cetuximab. Even now her hair burns with any sun exposure.

    It also affects the nail beds . Mouth ulcers . There is a good post on this on the forum just now . Her GP gave her a mouth wash and they disappeared. Definitely shared the toileting issues Chemo brings . But probably the tricky one was magnesium. It drops with it and the medication causes more toilet issues . I ended up making my own breakfast cereal packed full of every magnesium rich seed and nut going and that was most effective .

    She manage 10 months at 81 and was ok on the whole . She had a tough time with chemo . She was out every day .

    I did read a list on when the side effects appear and it was accurate but for the life of me can’t find it again .

    She stopped wearing make up too .

    Hope this helps .

    How are you getting along ?


    Community Champion Badge

    Helpline Number 0808 808 0000