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 

Than you very much for your reply Anne Marie i certainly take your advise.

I hope all goes well with your treatment and I keep in touch with everyone on the forum 

Looks like we have a very similar situation x

Hi James. My mum is currently dealing with colon cancer with liver mets and she has struggled to eat for ages. It was probably her first symptom and unfortunately came on just after she had covid so she put it down to the changes in taste that covid can cause putting her off food and didn't investigate further.

It's definitely not in her stomach as they examined that in detail -they found the liver tumours first and examined everywhere to find the primary. I font know for sure but strongly suspect the eating problems in her case predate any mets. 

I've been following this thread, seeing the experiences. 

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.  

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.  

Hi JCMcN 

hope your ok 

has you chemo started ? Interested to know what you are having and how you are coping with it.

Hi James and Ste, 

lots have been going on for you both but I  glad you are a little bit closer to starting your treatments. 

Ste - your treatment plan sounds very like mine. I have just completed by 6th round of chemo. It has been fortnightly for the last 12 weeks. I spent every second Thursday at the hospital getting three different types of drugs through my PICC line then home with the chemo ball. Only once during the six sessions did my ball drain as it should and the district nurses had to come back in the Sunday or Monday to do the disconnect. I’ve just had my last disconnect done just now and I get the PICC line removed tomorrow afternoon at the hospital. 

I had repeat MRIs (liver and bowel) and repeat CT inbetween round 5 and 6 so the oncologist was able to update me the day before my last session. 

My tumours have reduced in size (I had a smallish one in the bowel that had spread to six lesions in the liver). The liver team have reviewed the scans and say there are only three visible lesions now and they would like to do a joint surgery with colorectal team. The colorectal team meet tomorrow so I will know more of the plan this week. 

I felt really emotional leaving the hospital on Thursday- the care has been amazing - I feel like I’ve completed the first part of the journey and need to close that door and concentrate on the next bit. 

I never lost my hair but it is brittle and does come out a lot more so it is a lot thinner. I used to talk to it every shower telling it to hang on in there (lucky for me I had a lot to start with but I plan a big chop now to help with all the regrowth).

Feel free to private message me any time about anything- I am a bit rubbish at properly following the threads.

i hope my experience so far has helped you, and others feel more positive about what’s ahead

Hi. Really glad your rumours have reduced in size and that surgery is possible.

How did you find the chemo, if you don't mind me asking? My mum is starting hers on Friday and just wondering what we should expect.

Thank you for your kind words and for sharing.

I'm glad your chemo cycle is done and great that it's made some progress on the tumours and lesions.

That's fantastic that you're having such a great team of people at the hospital. It's super to read your strength and determination. Your attitude is inspiring.

Wishing you the very best with the next steps 

Hi MargaretMary,

I don’t mind at all. For me, I found the chemo manageable. They can give you meds for any side effects so your mum should always let them know if she feels something is not working for her or if a side effect appears that she hasn’t anything to take.

I have four children so I wanted to try to keep things as normal as possible and I still managed to work throughout my chemo. That doesn't mean that’s the right thing to do, but it worked for me because it gave me something else to focus on. My work were really understanding and never put me under any pressure. 

She needs to listen to her body and just do what she can. 

I was very sensitive to cold for the first week after each treatment and would feel nauseous (a bit like morning sickness). I only vomited once during the who 12 weeks and had maybe a couple of days of diarrhoea (but not with every cycle) and all this was really just in the first week so by week 2 I felt more or less normal.  

Cycle 2 was the worst for me but I’ve no idea if I was just a bit unwell anyway. Cycle 3 I felt really good and managed to go to my daughter’s 21st. Cycle 4 was just before Christmas and I struggled with that (but again, I think that was more than just because of the chemo, I was just stressing about Christmas).

The time for recovery during cycle 4 and 5 were definitely the longest. I didn’t begin to feel properly myself again until about day 10(so basically the Monday of the week I was due my next cycle) but it was mainly tiredness and feeling wiped out so I just rested a lot. 

My skin is very very dry and tight and got spotty (but so had an antibiotic and loads of cream)because one of my treatments was monoclonal antibody infusion for the liver.   

And here I am, cycle 6 done (it does go quickly and it feels unbelievable that’s all happened and 12 weeks have passed). So far so good but I am realistic to know I could feel rubbish again tomorrow! It keeps me going knowing that in a couple of weeks time I should feel like my normal self!

I think I have quite a high tolerance and focus (my husband thinks I am mental) and as I say, my way isnt right for everyone and it really depends on where you are starting from. I had no symptoms and felt well until treatment started. Although it was tolerable, I am glad this part is over and I wouldn’t be queuing up to do it all again (but obviously I will if I need to because there’s nothing else for it!)

wishing your mum the very best

Clare

Thank you very much for all the information. I'm glad it was manageable for you and I hope it will be the same for her.

Best of luck with your surgery.