My Recent Diagnosis

Good morning Phill42

Warm welcome to a very supportive group 

I was diagnosed with bowel cancer on the 5 of July, had a Robotic surgery to remove my sigmoid colon, in the 23 of August , as it was advanced as my tumour get through out all bowel walls I will have my chemo , actually  will be on Friday the 20 of October , I am apprehensive as well about chemo but it will give a better outcome even some side effects as I told my oncologist I am not a first who had a chemo and I wl be ok as my oncologist told me she wanted Cure me for life I like that 
waiting time is worrying time as I am waiting myself for report for repeat CT scan for my lungs 

I come across to Maggies charty    https://www.maggies.org/   but unfortunately it’s far away from me as they are offer great support especially stress management as I try to find something like that in MacMillan but unfortunately MacMillan didn’t have it 

All best the best 

Natallia 

Hi Phil42 and a warm welcome to the board. This is very similar to the post that I wrote back in 2016 when first diagnosed - T3, suspected lymph node involvement and going for an MRI to check out abnormality in liver. So, what happened after that?

The MRI showed the liver abnormality to be a harmless haemangioma- these are benign cysts which many people have from birth and are non the wiser unless they have this sort of scan. Even if it does turn out to be something more sinister then there is still a lot of treatment available and the liver can be resectioned and the nasty bits removed.

Stoma. I wasn’t struggling to go to the toilet - more the opposite - so an initial stoma wasn’t needed but I had one after surgery to allow the bowel rejoin time to heal and then it was reversed at a later date.

I had 2 out of 17 lymph nodes with cancerous cells so had chemotherapy. Back then it was given after surgery but recent research has found that it is just as effective to have it before surgery. I had xelox/Capox which is oxaliplatin by iv then capecitabine in tablet form. It can be tough but doable and I can send you some links with top tips nearer the time? 

Depending on where the tumour is then you may have chemoradiotherapy to shrink the tumour prior to surgery - this tends to be for rectal tumours and can be very successful in reducing the size of the tumour allowing the surgeon to remove it cleanly with a good clear surrounding area (aka ‘clear margin’)

The next few months will be tough but, as you say, you want to throw everything you can at the tumour. We’re all at different stages of treatment and recovery on here and happy to share experience and advice. I was diagnosed in 2016 and if you click on my name then you can see my treatment history (although it’s normally a lot more straight forward!) I’m currently ‘no evidence of disease’ as are the 2 ladies that I became friends with on the bowel cancer uk board who were diagnosed at the same time.

Finally here’s a link to the booklet that I was given at my first meeting which helps with a lot of jargon etc.

bowelcancerorguk.s3.amazonaws.com/.../YourPathway_BowelCancerUK.pdf

Take care

Karen x

Hi Karen I will have Capox from Friday for 3 month 4 cycles. Could you please sent me link. 
thanks 

natallia

Hi Natalia. Of course - the link is below

 CHEMO TOP TIPS UPDATED 

Quite often the thought/reputation of chemo is scarier than the actual treatment! Everyone reacts differently so don’t be frightened by all the side effects - you’ll probably get some but unlikely to get them all! Sometimes just knowing what is usual helps - I remember someone experiencing 1st bite syndrome but was reassured because she’d read about it so knew what to do. 
I would recommend wrapping up warm though and covering your mouth when leaving the unit as a chilly wind can cause your face to twitch and feel a bit strange

Hope this helps but please ask if you’ve any concerns?

Take care

Karen x

Thank you xxxx

Thought I would reply to my original post from 7 days ago rather than start a new one.  I only just got my colonoscopy report yesterday - it was carried out on 21 September and should have been given to me, along with the endoscopy report, at the time.  It seemed to show the bowel tumour to be closer to my rectum than first thought - distal sigmoid (photographed).  I had thought it was closer to the corner of the sigmoid and descending colon.   It also mentioned that I was 'advised low residue diet' - I don't recall that, but a nurse also suggested I would need to go to a low fibre diet.  I am usually on high fibre diet and wondered what the science / approach is on limiting fibre intake?

Did you get some information on what to avoid and what to eat? 

My understanding, purely from other’s experiences  here , but some patients are given this advice  to try and prevent the colon blocking . The food and position of the colon could compromise food getting through and they like to try and keep everything passing through . It lets them keep to planned surgery /treatment and stops any emergency admissions . Therefore going onto a special diet that is easier to process and prevent blocking is advised hence the low fibre advice .

Our helpline staff would be happy to go through it with you and get you some information.

Take care ,

Court 

Hi Phil42. Just thought I’d quickly pop this Low Residue link up for you

 Low Residue Diet 

Take care

Karen x

Thanks court and Kareno62  - I wasn’t told what to eat and what not to eat. But that first link is very helpful. Most of my diet consists of items on the right hand side so this will take some getting used to. My diet might have prolonged my symptoms - and going to the loo 25-30 days a day!  I can appreciate that a low fibre diet was needed ahead of my colonoscopy and future stoma operation.  But don’t know if I should be on this kind of diet indefinitely. I will need to speak to someone about this soon. Phil42.