Hindsight and terminal ileum cancer in bowel

I would be interested in your thoughts.

I was diagnosed 1Year ago with terminal cancer and im just.receiving.palliative treatment. But my story begins 6 Years ago when I underwent bowel investigations for iron deficiency and pain in bowel. Several doctors gastroenterologist diagnosed me with functional problems and told me to up the iron which I did because im vegetarian. I even supplemented with iron from chemist. So there was an improvement until i developed bowel obstruction and now this.

Even two.Years ago i had another set of negative tests via virtual colonoscopy.

Of course I feel guilty for masking the symptoms because i rook iron. I keep looking back and I imagine that my disease would have been caught early if i didnt take iron.

I accept that i was investigated twice but i also feel that i was misdiagnosed and left to get on with it!. Of course im !linking everything so cant prove if my cancer is linked d to six Years ago.

Any thoughts?

  • Hi ,

    I can see where you are coming from as you were obviously pursuing some concerns in getting checked out particularly with the virtual colonoscopy. I also hear people reporting that bowel tumours are very slow growing so I can see why you are pondering your medical history .

    My mum’s tumour had banded around her colon . The consultant said they were actually withdrawing the equipment when a scarped eye junior dr noticed a fold and they went back to look . The junior dr is now mentioned on these forums as a very good consultant . However I often wonder what would have happened if he had not noticed it . However despite that it had already spread at that point anyway .

    She had absolutely no symptoms , normal liver function with a very slight increase in CEA despite a significant spread to her liver . 
    It appeared to not present itself at all . Not sure how we would have felt if there had been a possibility of it being found earlier and I can see why you would wrestle with that .

    I take it the virtual colonoscopy saw nothing . I am not that familiar with them . My mum’s tumour was right side ascending. Where in the colon was yours ? Apparently that area is less inclined to have symptoms till later on as the faecal matter is not fully formed .

    How are you getting on with treatments?

    Court 

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  • Thanks Court. Yes my tumor on the right side near illeum, a,difficult place for visualisation with.colonoscopy. Virtual CT was used for me wjdw was negative twice.  I think a high bowel issue can be more complex I also did some QFIT test but the score was Very Low indicating no blood,loss despite iron issues. Other markers like Ca199, cea, calprotectin were so low. Its interesting that a stage 4  cancer isnt so obvious but i assumed it to be large which may not be the case. I wouldn't be surprised if my cancer has been lurking for 10 Years or more . I suppose i will never know bit its easy to make things fit afterwards. Im on chemo just to hold back,the disease for now. Glad to hear about your Mum.

  • Hi ,

    I think that was an issue with my mum . Although her tumour had spread the actually primary was not that big and folded inwards . The impression I got was that it was not in danger of obstructing any time soon . I did think if your tumour bulks out then it’s more likely to signal it’s there . She completed one of the first bowel screens in Glasgow back in 2009 . 
    An article that had completely passed me by was written in 2016 I think they discovered the right and left side of the colon were formed at different times in the embryo . They have very different molecular and histology. I think Right side is more common for MSI and responds better to that type of treatment than Left sided tumours . Again my mum’s histology did not match up to those findings  . She is not MSI . 

    It absolutely blows my mind that this information only surfaced seven years after my mum was diagnosed. Oxi was the new kid on the block back then .

    The other thing I have been watching over in the US some none MSI patients are using successfully immunotherapy when their tumour mutation burden becomes higher . Lots of new approaches ongoing . 
    The developments in the last five years have offered some encouragement. 

    Hope you are tolerating chemo ok . Not an easy time and also forgive an inaccuracy of info ! Not a scientist obviously just amazed at what they do and how it impacts patient care .

    Took a while for my mum to find a tolerable dose of chemotherapy . But it was a bit easier the second year than her first year of chemo . 
    take care ,

    Court 

    Community Champion Badge

  • Hi , it’s early stages for me yet but I’ve had years of digestive problems, a feeling like a brick is in my stomach with bad constipation. I was diagnosed with sigmoid cancer and had a anterior resection last March . There was also a polyp on my ileocecal valve which the decided to leave in place until o had my main tumor removed . Last Oct I had a colonoscopy and the polyp had grown . It was removed they hoped . This week I’ve had another colonoscopy to check

    it and it seems that there are some changes in the tissue on the valve . Biopsies were taken and I was told depending on the results I’d need surgery . My CEA hasn’t really changed although in December I was anemic ( never been before ) 

    my thoughts are small bowel cancer is rare that they don’t really know much about it . Maybe the symptoms are just too unspecific. 

  • Fortunately, your news appears better than mine. I think many problems are found in the sigmoid so maybe you  were fortunate. It seems the ileo is more challenging to visualise. I had 1 colonoscopy and then two virtual scopes. The.picture became very confusing until the symptoms got bad. symptoms were somewhat different to many other types. I guess bad luck.