Hi there, I was diagnosed almost 5 weeks ago and I still cant take it all in. I have bowel cancer at the sigmoid and a tiny spot on my liver that has metastasised from the bowel. I was seen by the oncologist last week and have to start chemotherapy on December 4th for 3 months. It all very terrifying when they are giving you all the possible side affects that you may get. Once I have had the chemotherapy they will rescan me and then I will need two surgeries. One to remove the bowel tumour and I need to go to Edinburgh for the liver surgery. I am glad to have found this forum with people who are going through the same thing as me. 

Hi it is very scary when they go through things I didn’t have chemo first not sure why it might have been because I had a neuroendocrime bowel tumour. All I can say is that amazing things can be done with our bodies and if they are recommending surgery go with it as they do know the best course of action x hope all goes well with you x 

Hi yes eating was a problem for me as well but I did also need to lose some weight so I considered it good for surgery prep. I was told to eat little and often if I could not face big meals I still struggle with eating and feel nauseous I was thinking this may be normal!!! I too as Margaret’s mother did have my stomach checked but I think it’s because I was also being sick very often in the beginning so it was one of the checks they did. 
if your not eating much make sure you eat protein. 
hopefully other people’s experience is helping to let you know we do/can get through this x 

Thank you both.

Reassuring to know it's not unusual.

Yes I was told to try little and often. Right now I don't want to eat at all. Ita awful. I'm having to almost force myself to eat bits. 

I'll go shopping today if I can manage it and stock up on low fibre foods and try to find something I can eat.

Agree on protein. But I'm a vegetarian and that's severely limiting me now as most of my protein sources like nuts are on thr fibre list. I fear I may have to start eating meat again.. which I find so daunting at the best times and even more so when have zero appetite.

Really struggling with this one. I guess I'll just have to go one step at a time.

Hi Ste62,

your experience so far seems similar to mine. The waiting at the start is awful but when I thought about all the work going on behind the scenes to gather all the info to make sure they’ve got the best possible plan in place for me it didn’t seem long in the whole scheme of things. 

It was the bowel surgeon that first told me about the possible liver mets and she wasn’t confident they could operate on them but I would get an aggressive oncology treatment plan. It is devastating to be told you probably have stage 4 cancer. She told me not to go home and google because it would throw up lots of old stats. I told her that I would though ( it’s human nature isn’t it?) so she told me to look on this site and use the chats.

I had my colonoscopy early September and started chemo early November.  

I’ve tried to keep as positive as I can throughout  and as healthy as I can ( walking, gentle exercise, watching what I eat).

It’s hard at times but I try my best not to think too far ahead into the treatment plan and also quickly try to shut down any thoughts that I will only be here for a year or two because no one has ever come out and told me that - that kind of info has only come from Dr Google. 

Take care. I am heading up today for chemo no 5. 

Clare

Hi James,

I can’t help you with the lack of appetite because I didn’t really have any symptoms like that on the run up to, or after diagnosis. I do now with the chemo and try to eat healthily, little and often. 

As I said previously, I know what it is like to catastrophise.

I’ve been having reiki fortnightly (before my chemo) to relax me and I also do a lot of deep breathing which really calms me (just simple stuff like four deep breathes in and out). I also try to get out a big walk in the fresh air each day. I am still working (from home) so I try to block out an hour for lunch so I can do the walk. Work helps me too (my husband thinks I am crazy) because it is a distraction.

Where I lI’ve, I was lucky enough to be referred to a health and wellbeing clinic as part of the treatment plan. I see the health coach weekly and have being doing that right from having the colonoscopy, so before the biopsy had even confirmed it was cancer (clearly all the professionals knew it was cancer but I was in denial and not going down that rabbit hole until the biopsy results were through). I find those meetings really good.  He talks about your diet, mindset, gives you exercise aims, tracks your weight, heart rate, peak flow etc. You could see if there is anything similar you could get access to?

Clare

Hi Clare 

I did not get any kind of stage told to me but I would presume if they think it has gone to the liver they would class it as stage 3 or 4.

Also seen on the forum that some have had a PET scan but I only had CAT scan and MRI 

I only have a small spot on the liver but from others on here I think they can do a lot of cutting out of tumours on the liver and it will regenerate over time so it’s positive to see that others have had this done.

I suppose the key for the chemo first it to ensure that they can get the  cancer under control.

my consultant said that the liver was now his priority more than the original tumour.

i Asked why he would not just remove both tumours and then do Chemo  afterwards but he said the recovery time from the operation would prevent early chemo treatment.

Not sure if any others on here have had the same information as I presume everyone is slightly different.

To be honest up to yesterday my mind was overload with looking at finances life insurance’s,funeral ect and I was not sleeping at all .

found this forum last night and had a reply from Anna Marie also in a similar position to us ,and it has helped immensely to know and see others are getting through this and the help that is on offer,actually got some sleep last night lol

Next unknown will probably be the chemo and how  iit will effect me but from the info I have had to date tthey have much more advanced chemo treatments that are specifically targeted to the tumour type , but only what I was told .

Anyway we are all in similar positions so I will be updating the forum as I go and hopefully we  can all  get the through this.

best wishes x

Sorry did not know you were a vegetarian that must throw up some problems with protein did they give you any suggestions? Do you eat eggs? And cheese is also a good source sorry you probably already know that. Yes one step at a time is best they should keep an eye on bloods as well so will compensate anything you are lacking at some point with pills not ideal but will help. X 

Hi ste62 just reading your posts I had PET scans when they were looking at liver so you may still have these to come, was also told the liver was my priority even though they had graded the bowel cancer (they told me mine was a grade 1 I think it was following the colonoscopy) I originally presumed it must be grade 4 to have spread but I think it’s more on the type of tumour rather than the grade as I had multiple mets in the liver from the primary in my bowel but these were all grade 1 when they took out and tested. 
we are all different though and our treatments do appear to be different it’s good they are shrinking primary first mine was small which I think is why I did not have chemo as it was easy to remove without. 
it’s not helpful but sadly a lot of waiting is involved but I wish you speedy treatment and a positive outcome xx 

wendy

Hello, Anne-Marie lives quite close to me and we’ve been chatting a lot about our experiences. 

I have never been told a stage either. I have a friend going through a similar journey to us who has same oncologist to me and he was told not to think about stages, it is really just for them to use in terms of what they are dealing with treatment plan wise, so I’ve never asked the question, I just know it would be classed as 4 because I’ve confirmed mets. 

I think with me they did the pet because there were areas of concern across both lobes and they wanted to be sure it hadn’t gone elsewhere. The areas of concern had been flagged on the first CT scan I had of the abdomen and pelvis.

The plan always was to do chemo first even after  they had confirmed the bowel and liver were operable. true oncologist said that although the pet confirmed no further spread it couldn’t pick up single cancer cells so best to blast with chemo first. She also didn’t want a delay so didn’t recommend I have the small tumour in the bowel operated on first incase there were any complications that would then delay the chemo starting. So much the same info as you.  

Thanks Wendy that’s really useful information x

Hello all

I hope you are all doing OK. I have my 2nd scan tomorrow (MRI, I think), and apparently my biopsies and ct scan results are back, but I don't know any details yet. I hope/think this means the MDT will dicuss my case next Friday. 

I think that means they'll have a plan/options/more detailed diagnosis soon?

Much as I feel 'ok' overall, and I certainly hate the waiting, I'm terrified to hear what exactly they've found, whether it's spread, and how hard the treatment will be.

So long as they can treat and cure (which was the initial comments of the surgeon who did the colonoscopy, and what I'm clinging to), I guess I have to accept anything else.

How is everyone else getting on with news and treatment?

Hello all

I hope you are all doing OK. I have my 2nd scan tomorrow (MRI, I think), and apparently my biopsies and ct scan results are back, but I don't know any details yet. I hope/think this means the MDT will dicuss my case next Friday. 

I think that means they'll have a plan/options/more detailed diagnosis soon?

Much as I feel 'ok' overall, and I certainly hate the waiting, I'm terrified to hear what exactly they've found, whether it's spread, and how hard the treatment will be.

So long as they can treat and cure (which was the initial comments of the surgeon who did the colonoscopy, and what I'm clinging to), I guess I have to accept anything else.

How is everyone else getting on with news and treatment?

Hi wishing you the best news looks like they are doing quickly so that’s a bonus x 

I started driving this week 8 weeks after surgery still in some pain but things are getting better, 

take care 

Wendy 

Hi James 

it’s probably the worst bit when you have everything and are just waiting for final discussion and plan from the consultant.

The MRI is the final bit and then you should get a date.

I have appointment next Friday to go through my chemo plan but it’s been another two weeks waiting.

looking at it overall it seems to be about two months with most and then they are on treatment or operation.

I just want to get started and I think once you do have the plan it will ease a lot of anxiety.

I bit unsure on Chemo and what this has been like for some people, so if anyone can share there experience it would be good 

In the meantime James just stay as positive as you can I go for walks now about an hour at a time just helps me clear my mind.

All the best 

Thank you, Ste62 

How has your appointment gone today?

I'm told the MDT should be discussing me today as they have my biopsies and 2 scan results.

The cancer nurse offered to call me later today with an update post- meeting.

I know lots of people say this waiting is the hardest part and it gets easier, mentally, once you have a plan. But I'm terrified what they'll tell me. Wish me luck.

Hi James ,

went for appointment and was told stage 4 but curable with chemotherapy.

still a bit of a shock as my consultant did not say anything about grade , had another doctor for this appointment who I never seen before.

basically I start chemo with having a  line fitted then 6 hours of chemo at hospital then a pump attached with slow release chemo over 48 hrs.

was also told lots of side effects and I would lose all my hair.

chemo for 3 months then re scan hopefully some shrinkage of tumour and then another 3months of chemo if req.

if the chemo works they will then cut it out and reconnect everything.

so hopefully chemo will do its job.

its been a wild 2months of ups and downs but they have said curable so I got to go with that.

hopefully yours will be ok I had a friend at work who had exact same last year but tumour had not spread so he just had op to cut it out and reconnect with no issues or chemo.

wishing you the best if you had everything should not be long for your meeting.

I have a look at the chemo threads but it does not sound great 

I keep you informed 

Hi Ste

Thanks for sharing. Great news that they're confirming it's curable.

Sounds like quite an intense amount of chemo (i don't know too much about that yet). I hope you have people around you for support, and we are all here for you. 

I hope they're able to firm up plans soon for you. Its all quite daunting, isn't it? But we are so fortunate they have treatments and cures now. I'm so inspired by people's stories on here and elsewhere

I posted in another thread on mine: they had said it hasn't spread to other organs (great). They want a PET scan next to check a couple of lymphs and decide if a bit of chemo or straight to surgery. I'm fearful, but taking the win that it likely hasnt spread for me, and that they've said they can ultimately sort it out.

Take care. Thinking of you.