Colorectal cancer with possible liver mets

Hi,  I have just received a confirmed diagnosis of a colorectal cancer after having a colonoscopy  3 weeks ago and a CT scan a fortnight ago. I had no symptoms, this has all happened following my first routine bowel screening because I recently turned 50!

i had a previous colonoscopy 2 years ago which was clear so each step of my journey so far I’ve gone in to naively assuming all would be well.

However, it’s the gift that just keeps giving and I met with the colorectal surgeon today who told me the CT scan had revealed areas of concern on both lobes of my liver that are more than likely mets from the colorectal tumour. I already had an MRI scheduled for next week but will now have another on my liver and also a PET scan. So many ‘what ifs’ and I just need a plan.

I can’t believe all this is going on inside my body and I was feeling ok. I am trying my hardest to keep looking at the positives (Thank God for the bowel screening) but it’s getting difficult as I share the news with the people I love  and watch their worlds change forever (I have 4 kids and we told them tonight). I am scared but what I want most of all is for my kids to be ok. 

I’ve reached out to connect with a few of you who seem to have gone through / are going through similar to me, I hope that’s ok  xx

  • Hi this happened to me also only mine was found because I have a hernia and they were investigating for gall stones and found the nets on my liver first then the colon tumour. I’m due to have surgery 12th November and really worried here to chat if you need to

    wendy

  • Hi Wendy,

    thanks for responding. Your thread was the main reason I decided to share. I know we don’t have any real answers right now but it would be good to share how we are feeling and what is happening. It makes me feel a bit better knowing people are out there who can understand what it’s like. Clare 

  • Hi getting that diagnosis must be very frightening especially as you had a Colonoscopy 2 years ago which they told you was clear ,I also had a clear Colonoscopy 2 years ago but have recently been to my GP as still having symptoms of diarrhea ongoing , I may have to have another Colonoscopy to put my mind at rest although I am kind of worried about it ,it could be something else as fit test I did recently was acceptable as they say ,I hope all goes well for you ,its better find out than not but still very worrying .

  • Hi Clare

    have they given you a grade for the Colin/ bowel tumour mine is grade 1 which did not show on the bowel screening test that you do at home and send away it was found because the liver surgeon had spotted from my scans. 
    one thing I have found is that things are not quick I started with scans etc in March which is really frustrating but it might be down to where you live as to speed as I have spoken to others who have been dealt with quickly. 
    I am 51 by the way will be 52 two days after my surgery so nice birthday in hospital which I am maybe taking as a positive I totally get the worry with kids I have an 18 yr old who has coped really well my husband has been another matter. 
    I live in wales and am being looked after by Liverpool they are brilliant although I had to go to London for the PET scan as the nhs there has the only working machine as I needed a gallium scan but the wait was about a week even though they said six that’s another thing sometimes they give you the worst case timeframe which can be worrying. 
    I have 4 mets on the right if my liver in four sections and one in the left so they are gonna remove 4 sections of the right of my liver which is most of it and then extract the met from the left they are saying it will cure which is good. And then the colon surgery at the same time which they hope I will need a bag for a short time if they can’t reattach on the day. 
    from what I have been told although scary there are worse things to have than this and they can do amazing things and our livers can do amazing things it’s just been the wait for me it seemed ages till it was clear and I ended up going off work in July to spend time with my daughter. Oh I also did not have sunburn do have pain in my liver now but that’s because I also have a benign tumour which is growing in one of the sections and causing pressure as you say the gift that keeps giving. Sorry I’ll stop now it’s just good to find those in the totally same situation private message me if you need to

    wendy

  • Not sunburn symptoms I meant 

  • Hi Jenny, how are you? Did you get your other colonoscopy? Clare

  • Hi no not yet I've still got ongoing diarrhea I have an appointment with GP on 18th October , I've tried everything to try and get diarrhea to stop but no matter what I eat or don't eat it doesn't get any better ,the Doctor I need to see is only part time so its a wait ,I'll let you know what happens .

  • Hi. I'm so glad I found this up to date chat. I have just been told I took have colon cancer in the hepatic flexur. It's 30mm. This was all because in July I had been having severe right side pelvic pain that I thought was appendicitis. Went to hospital given painkillers while waited for doc then half an hour later they came and gave me orimorph.had x-ray and bloods which all came back normal so sent home even though I was still in absolute agony.so saw GP who also done tests bloods q fit teat and a CT scan. Bloods came back I was anemic q fit test came back at 379 then had the scan that showed a tumour and a lymph nodes that looked suspicious as it was 8mm. Had my colonoscopy Wednesday there and afterwards was given the news it was cancer and has almost blocked the hepatic flexur with only a small gap for poop to get through. They took 8 biopsies and have sent it of marked urgent .you see this isn't my first cancer. I am still having hormonal treatment and injections for breast cancer that was diagnosed on late 2020. Also my mum was also diagnosed with bowel cancer in the Jan  and told as she was ill with COPD that as she couldn't have surgery or chemo that they said she would have 6 months.nope she passed 6 weeks later.  I took also have bad COPD but I'm younger than she was 53 she was 73.  

    So I'm now on an unknown road as I have no idea if it's metastatic breast cancer as apparently I had no polyps. I know they said they have warned me to go straight to emergency if I can't poop fart stop peeing  tummy bloats as it would mean it's completely blocked. I'm so happy lol every time I fart now cos I'm like AHH it's ok .lol  can anyone tell me what's next. I'm waiting for the MDT meeting then what. Thanks

  • I'm sorry to hear about the diagnosis you have, I like you was first made aware of colerectol cancer with the test through door . I was very lucky to have a speedy pathway through the cancer pathway. I had colonoscopy followed straight away with scans and firm diagnosis within 3 days. I had surgery to remove the tumor a few weeks ago and numerous lymph nodes removed at same time. Some of which are positive but again a speedy response and I am due to undergo chemo this coming week ...I have every confidence that I will beat this and you can too reach out to everyone around you they will want to support you on this path .sending very best wishes 

  • Hi for those that were following this post and others I have had my surgery two days before my birthday which was a blur I’m four days on now and am slowly starting to feel I can do things although not been the dredded toilet yet. I won’t lie I feel like I’ve been ran over by a train and come out the other end but the surgeons were amazing taking 16 tumours from my liver and the one in my colon so hopefully going forward all will be positive although it has changed my outlook on life and happiness and how I’m going to live going forward I really feel like I have been given a second chance. For those unclear of a diagnosis or plan do your prep for the operation so you are as fit as possible that definitely appears to have worked for me and helped. Happy to chat to anyone that may be worried our bodies are amazing and can deal with so much x