New diagnosis

  • 5 replies
  • 120 subscribers
  • 1028 views

Hi all,

I have just been diagnosed with T3N1 lower colo-rectal cancer at the age of 33, with secondary in lymph and liver, albeit small. Whilst technically operable, I am about to start folfox for 12 weeks to attempt to shrink the tumours before reassessing surgery options. Obviously I am absolutely petrified and struggling mentally with acceptance of this, so was advised to look at this support forum. Any advice would be greatly appreciated - dealing with the unknown is very challenging! 

thanks 

  • Hi 

    Welcome to the forum . Glad you reached out to us . 
    What a shock for you and difficult to process the diagnosis and implications in the early days .

    It is totally understandable to feel so afraid and reducing fear is what we hope to do . Others will share their chemo experience. My mum had xeloda. So an infusion one day then home with two weeks worth of Tablets . A rest week then start again . They hospital staff take very good care of you . Before each cycle they do a blood test , check with you how you are tolerating chemo and make any adjustments required . That is the thing about chemo it can be adjusted and only small adjustments can actually reduce a lot of the side effects for some people . Some people actually don’t have many side effects at all and able to continue with work . Covid has changed some of that and has to be factored in .

    There is a contact number and a specialist nurse who can answer any questions. You are not on your own . My mum had chemo for two years at 67 and 68 . 
    It sounds as though you have a small tumour load in your liver . That is good news . There is a lot of merit in going straight to chemo . It not only allows shrinkage to potentially occur but also gets to work on any stray cells . 
    Bowel cancer has lots of treatment options and liver has some too . If you click on my user name you can read my mum’s story. She had a substantial spread to deal with in her liver but her team got her to surgery and her liver has been clear since 2010 !  I drew a lot of strength from my mum’s surgeon who told us his first liver surgery patient was alive 20 years later .

    Treatment of bowel cancer that has spread has progressed so much now . My sole purpose here years ago was to convince people to head to a centre of clinical excellence for livers and get a surgical opinion. That did not happen routinely when my mum was first diagnosed. I rarely have to say it now . Can’t remember the last time I did . Surgeons are much more aggressive now and Radio frequency Ablation can also be used for some people . 
    We are here to support you as you work your way through this . 
    Here’s to few side effects and much shrinkage !

    Court 

    Helpline Number 0808 808 0000

  • Hi Loliver,

    I'm sorry to hear of your diagnosis however i'm afraid we have all been where you are now and as you say its very scary especially at your age. I am 59 year old man who has had an anterior resection of the sigmoid colon to remove a tumour and as you say its scary but as i found you just have to go along with what the professionals advise, i think its difficult to give specific advice but i had the operation on the 3rd sept and was back home on the 6th, try and stay fit as possible as this will help you get through it.

    All the very best

    TG

  • Thank you both. Reassured to know that there is hope. It is hard to come to terms that life will never be the same again.

  • Hi So sorry that you have had this diagnosis. I had a 3cm stage 3 tumour in my sigmoid colon, surgery to remove it & a large part of my colon with a temporary stoma in Jan 2019. I had 7 treatments of Folfox as 7 out of 25 lymph nodes were affected. I had a successful stoma reversal in August 2019 & clear scans in January 2020. Try to stay positive as I believe it really helps, and know that this cancer is very treatable. Don’t Google! Talk to the team looking after you, and if you can, take someone with you to appointments as four ears are better than two! Above all, be kind to yourself- rest, eat well so that you are as strong as you can be, take gentle exercise in fresh air & treat yourself too, you deserve it! It won’t be easy but you’ll get through it.  Message me if you need any advice or tips. 

  • Hi 

    I think the stage you are at is very hard and even as a carer it took time  to start moving forward again . Once you get the reassurance you are making progress and confident in your team it helps . There is a very robust scanning protocols which have not just been a safety net for my mum but her life line . They were literally watching a small tumour from 2 mm and removed it at 8 mm once ! It did not have the time to develop into a health issue . Ten years ago the scans only picked things up once they were 5mm . Now they are amazing . 
    My mum had to factor in hospitals becoming part of her life and treatment for the first few years . But in reality out with treatment / surgery now it’s different.  It’s been two scans a year and two appointments. With time we became experts at compartmentalising it . Living life scan to scan . Dealing with it bit by bit .

    At the beginning it was hard to think there would be normal days . But slowly it went from being an hour or two to a full day then a couple of days , a week and so on. 
    You are currently operable ! That’s the main thing and the very good news in your situation .
    Take special care ,

    Court 

    Helpline Number 0808 808 0000