Rectal cancer watch and wait

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Hi all,

See my profile for my watch and wait journey so far after rectal cancer diagnosis in November 2018 and a clinically complete response to radiotherapy in January 2019 and since then I have been in remission. 

I am recording my journey on watch and wait as I go through milestones hoping that this is helpful to others considering watch and wait or perhaps earlier on in the journey.

About 6 months ago I had an equivocal MRI, i.e. they were not quite sure whether there was cancer there or not, so they ordered another one earlier than usual and I had this yesterday and the CEA blood test too.

I just got the CEA result and it was normal and completely unchanged from 6 months ago which is great!

I should get the MRI result in about a week and will post the result on here when I get it. However I am very hopeful now that this will be clear. 

However we all know that cancer is tricky and unpredictable so I don't know for sure until I get the actual MRI result.

Wish me luck!

Jogey

  • Lovely to hear from you Jogey and yes your post will be really useful as I often refer people to your profile page. Good news that your CEA is unchanged and good luck for the MRI although I’m sure you won’t need it.

    Wow. 4.5 years clear is amazing 

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Great to read this  . So pleased your CEA is behaving and all the very best with your scan results . Hope it’s nothing but good news.

    As ever I bookmark your posts !GrinningOur forum go to guy on Watch and wait .

    All the very best ,

    Court 

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    Helpline Number 0808 808 0000

  • Thanks so much court for the good wishes!

  • Well done @Jogey I remember you from when my husband was on watch and wait, sadly he later needed treatment which has at times been challenging….but he is doing well I hasten to add.  Just had recent blood results this morning with oncologist and all is good…..Bob on …were his words …so next scan in October which will be two years since cytoreductive surgery…..and four and half years since diagnosis.

    I hope things continue to be good for you….x

  • Great to hear from you   and I'm really pleased to hear your husband is doing well. 

    All best wishes 

  • Hi all,

    So my surgeon (who supervises my surveillance even though I haven't had surgery)  just phoned me. The equivocal area in the last MRI showed up in the new MRI in exactly the same place. 

    However the radiologist did not feel it was cancer but possibly a small mucosal ulcer. In order to double check my surgeon (who thankfully is very thorough)  referred this to 
    a  top anal/rectal radiologist and they also concluded that it was normal tissue after examining it thoroughly.

    All this means there is no evidence of recurrence four and a half years after the end of radiotherapy!

    I'm really grateful for the tremendous benefits of watch and wait. My bowels and general physical functioning are completely normal and I have managed to avoid major surgery whilst still having an effective treatment. I just feel really well and that feels pretty close to a miracle given I started out at stage 3.

    You do have to stay mentally strong with watch and wait as any of the many scans and endoscopies you have could show evidence of recurrence and I have had various worrying equivocal scan results along the way  but I think that just comes with any kind of treatment plan for rectal cancer.

    Also the risk goes down the longer you go without recurrence.

    Anyway, I hope this helps anyone who is considering watch and wait after a clinically complete response.

    Finally, I just want to acknowledge the role of luck in my journey so far. A lot of watch and wait patients do get a local recurrence and go on to have surgery. I was mentally prepared for that to happen at any time.

    Take care and warm best wishes to all of you

  • Hi Jogey, what an inspiration you are. I just read your profile, it is a story of hope. Thanks for the link to Dr Fauch advice on diet and outcomes very insightful. Since my original colonoscopy and the subsequent rollercoaster ride , I have not wanted to eat any meat at all. I've just ordered some aspirin and vitamin D. It feels good to have a dietary strategy moving forward. I'm so pleased all your scans have been clear. It's an incredible outcome. Take care. Kerry

  • Thanks so much Kerry and I really hope that your treatment goes really well too.

    Take care

  • This is fantastic  . I thought I had actually replied. 
    So pleased for you. Lots of this is out of individuals control as you say but so pleased you are here sharing this story .

    Court 

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    Helpline Number 0808 808 0000