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 Annemarie

hope you are ok I have had good news that they think they got all of my tumours so I only need 6 month scans going forward with plans for if they do return with further surgery being the last resort feel so thankful there are people who research and train to do this surgery and who look after us in our darkest times. 
thinking of you x 

Wendy 

Hi Wendy, that is amazing news, I am so happy for you. With only needing 6 monthly follow up scans is wonderful. I am having my picc line fitted tomorrow and then I start chemotherapy next Thursday morning. So at last I can now start my treatment with a positive mind and to stay strong physically. I hope I will still hear from you as it really helps having someone who understands what you are going through. Take care Wendy sending hugs.

Annemarie xx

Good luck today Annemarie 

message anytime and keep in touch will be keeping everything crossed for you xxx Wendy 

Hello all

Thank you sharing your stories. It is a scary time, but it's reassuring to hear about your treatment plans, and even when it goes into the liver too in multiple places, they seem to have effective treatments and cures.

If I might join in please?

I have just received a bowel cancer diagnosis today. Rectal with a not-small tumour. Whilst I am terrified, the Dr was very clear it was treatable, either through surgery, or chemo/radio then surgery, depending on what the scans show as to whether it may have spread through the lining to the muscles and or liver (I think). 

It was a huge amount to take in, but the Dr and Nurse were both talking in terms of total treatment and cure. Unless there are spreads and complications, in which case more treatment, I think? I tend to catastrophic, so now I'm trying to stop myself worrying it may have spread and have other parts inoperable.

Any advice would be very very welcome 

Hi 

sorry to hear of your diagnosis but positive that they are talking in terms of cure which is what they did with me constantly saying this will ‘cure’ so keep hold of that they know what they are doing and don’t tend to give false hope it’s very hard not to think of the worst and get in your own head but listen to what they say write it all down. It’s easy after the events to say try not to worry but you will it inevitable , I planned my funeral in my head what was gonna happen to my house other people’s emotions and wasted so much time being scared instead of living, make sure you make time to be kind to yourself. I Hope you have people round to support you but a wise person told me no matter how much support you have family/friends unless they have had the same experience they will never fully understand what you are going through so be prepared to feel alone at times even if you are not, which is why these chats are so important to connect with others who are going through similar. I also found writing a journal was good to get it all out I’ve hidden mine now as it was just for me (and a just in case). Hold onto the medics positivity they won’t say they can do something if they can’t. 
here if you need to chat

wendy x 

Hi there, I just want to say hello and add to what Wendy has already said.

I made the original post three months ago while I was in the middle of my diagnosis journey and was lying awake doing my own catastrophising! Being in touch with people who were going through similar experiences to my own really helped me then, and still does now. 

I am just about to go into my 5th out of a total of 6 chemo days on the 2nd January. My bowel cancer (a small tumour compared to others) was confirmed operable early on but the liver secondaries took longer to confirm. I have six lesions in the liver across the two lobes but the surgeons are confident they can get everything. 

My next steps after the chemo on Thursday are more MRI and CT scans the following week so the oncologist and surgeons can see where we are; my last round of chemo on the 18th then we plan for the op.

It is hard not to jump ahead, but for me it is easier to take each bit as it comes and not think too far ahead (other than to think positively that everything is going to be ok). I’ve no idea when the op will be, or whether it will be one or two. I can’t know these things until the MDT have discussed the scans so no point in planning or speculating what the next few months will look like. It is the same with the chemo, take every session as it comes, some days you feel worse than others but you can’t really control it (except to stay positive and know it is all happening for a good reason - to make you well).

Always happy to chat, either in this thread or privately. Hope it all goes well for you. 

Clare

Dear Wendy and Clare

Thank you so much for your kind words, and sensible advice.

I really struggle to be present in the now, and am always looking ahead. I know that's counterproductive but find it hard.

I spoke to the nursing team this afternoon. She was OK and somewhat helpful, but I also worried she was trying not to get my hopes up. 

I suppose if it has.spread, I could be in trouble. I thought the colonoscopy surgeon said that if it spread it would be through to the surrounding muscle, but also a chance of the liver. Does that sound right?

I hope that both your chemo and other treatments go well.

Thank you so much for sharing and engaging with me on here.

Hi I think it depends on what type of tumour it is mine was a nuroendocrine which spreads through the blood and then comes to rest elsewhere and develops metastasis (liver, lungs, kidneys) but these are treatable tumours so I was told. I agree with Claire that we don’t know the full picture till scans are taken and it can seem like we wait a long time but if they needed to do something immediately I am sure that would happen as I’ve known others wait less time than I did for my ops it also depends on where you live I would say. 
Our bodies are amazing as well and can endure so much x

Thank you, Wendy. That is more reassuring.

I have a CT scan booked in straight away for 2 weeks from now. I guess good they booked it immediately (my only having been for the colonoscopy today) but worried it can't be sooner.

I have no idea about the different types of tumours, and as you say, they won't know for sure until they have done both scans and get the biopsies back.

Your words and your bravery and your kindness in sharing your experience bring me some comfort. I am so grateful.

I know I will struggle with the waiting. My GP has just prescribed me something for the anxiety. The nurses say to stay active and positive. My fear is manifesting in not wanting to eat, which is creating a vicious circle.

Hi there, I would just like to join Wendy & Claire to saying hi to you.                                                                                              

I was diagnosed with a rectal tumour at the sigmoid in October. There is also a tiny spot on my liver but my consultant told me it was tiny. I had numerous scans and a liver mri and also a PET scan of the whole body to check for any further spread. Waiting for results is a really scary time, but staying positive really helps. I have been using mindfulness meditation and positive affirmations and they are really helping my mental health and keeping it in check.

My PET scan results came back clear with no further spread thank god. I started my 1st chemotherapy on December 19th and have my second of six on 2nd January. I know after completing six rounds then I will be scanned again and if the tumour has reduced enough then the surgeon will operate to remove it. The spot on my Liver will have to be operated as the liver specialist team work from there. I am so grateful to the medical teams that I can be treated and operated on to remove the tumour and then to make a full recovery. 
Try and stay positive if you can and remember that it is treatable and the outcome of a cure. I think the worst is when you hear the diagnosis it is so overwhelming and your whole world feels like it has been turned upside down. Once you get your treatment plan you will start to feel better that things are finally moving forward. 
I am here if you have any questions.

Annemarie x

Hi there, I would just like to join Wendy & Claire to saying hi to you.                                                                                              

I was diagnosed with a rectal tumour at the sigmoid in October. There is also a tiny spot on my liver but my consultant told me it was tiny. I had numerous scans and a liver mri and also a PET scan of the whole body to check for any further spread. Waiting for results is a really scary time, but staying positive really helps. I have been using mindfulness meditation and positive affirmations and they are really helping my mental health and keeping it in check.

My PET scan results came back clear with no further spread thank god. I started my 1st chemotherapy on December 19th and have my second of six on 2nd January. I know after completing six rounds then I will be scanned again and if the tumour has reduced enough then the surgeon will operate to remove it. The spot on my Liver will have to be operated as the liver specialist team work from there. I am so grateful to the medical teams that I can be treated and operated on to remove the tumour and then to make a full recovery. 
Try and stay positive if you can and remember that it is treatable and the outcome of a cure. I think the worst is when you hear the diagnosis it is so overwhelming and your whole world feels like it has been turned upside down. Once you get your treatment plan you will start to feel better that things are finally moving forward. 
I am here if you have any questions.

Annemarie x

Hi Annemarie and everyone.

Wishing you all a happier 2025.

I am of course spiralling now. The way my mind tends to work, I catastrophic and overthink. Whilst I'm broadly an optimistic person, I'm struggling for that right now.

My immediate concern is that I am struggling to eat. Did/do any of you have that? I worry I means illness spreading elsewhere to my stomach or something. I suppose logically it would mostly the anxiety, perhaps compounded by the trauma of the prep for colonoscopy, and I've also had a nasty virus.

So, I feel a bit nauseous all the time, have no appetite and am repelled by food right now. Being told to have a low fibre diet now by the colonoscopist hasn't helped.

Is this normal? Can anyone relate or advise? If I can get back to eating that would be a small victory for now.

Hi all 

I was diagnosed with rectum cancer after colonoscopy tumour of 6cm by 10 cm diameter.

after CAT and MRI scans I was hoping to just have it cut out but I have a small spot on my liver which they think is secondary cancer.

I was expecting them to cut out both tumours and then poss do chemo 

but my consultant is recommending chemo first to make sure cancer is under control and target tumours to shrink.

i got to be honest I have been lying awake at night thinking this is the end and I may have a year or so .

but after reading some of the information on here I’m feeling a bit more optimistic.

time is a worry but I was told bowel cancer is the slowest in all I went in for colonoscopy 24 th Nov and since then had full CAT scan and MRI on liver and pelvis and received plan from my consultant on 31st Dec hopefully to start chemo middle to end of Jan 25? 
all in all I think it has been quiet quick but the waiting is the hardest bit 

Hi Ste62, I was diagnosed with a sigmoid rectal tumour back in October. When my consultant told me the news and that they had found a tiny spot on my liver I felt like I was going to pass out and burst into tears, none of which I did. 
I decided not to let the news consume me and decided to take the positive route. Since then I have been using meditation manifesting and positive affirmations. This has really helped my mental health and is stopping me from fearing the worst. I started my chemotherapy on 19th December and have my 2nd of six chemotherapy treatments tomorrow. After chemotherapy I will be scanned and if the tumour has reduced then I will have surgery to remove it. I will then need to recover and then have surgery to remove the spot on my liver. I would 100% recommend that you try and use some form of meditation and positive affirmations to help your mental health. It is very difficult after hearing this dreadful news to go to a dark place and think the worst. The medical teams of talented surgeons consultants oncologists nurses are all amazing. Please try and not to overthink and consume yourself with negative thoughts. If you need anything and I can give you any advice then I’m here.                       Thinking of you. Anne Marie 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