Hindsight and terminal ileum cancer in bowel

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 

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 

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.