Struggling with diagnosis

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Hi everyone 

I’m really trying to stay positive but it’s so difficult 

I’m 39, and was a fit strong healthy paramedic

a few months ago my world crumbled when I got admitted with rectal bleeding and stomach pains . An ultrasound was done as well as a sigmoidoscopy where a lump was found and biopsies taken. Was then told it was cancer and I would need a permanent illeostomy (Ive already had large bowel removed due to a hereditary condition FAP)

thankfully In one way the docs wanted to dot all the I’d cross all the Ts and I had a ct, mri and pet scans 

then my world disintegrated, it had spread to lung (4) liver (1) and lymph ;(

the words incurable but well do everything we can came up. Surgery isn’t an option at the moment until everything is under control, so I’m on chemo tablets and radiotherapy fir 5 weeks - 1/2 way through tomorrow

I just feel At an all time low with it all but trying to stay positive for the family and I don’t know how long I can keep it up 

I do have an appointment with oncologist tomorrow and I’m really unsettled about that too 

I just needed somewhere to get it all off my chest I think 

  • Hi  and a warm welcome to the board from me. You’ve had some difficult news and it’s understandable that you’re struggling to keep the ‘don’t worry I’m fine’ front on for everyone. If you click on  name then you can see her mums profile and how well she’s responded to treatment and husband has just had a good response to chemoradiotherapy. The words incurable are scary but there are a lot of people living with stage 4 cancer for many years particularly on the bowel cancer uk board. 

    Please feel free to post whenever you need to and also the nurses are available on 0808 808 00 00 or online chat from 8am - 8 pm every day?

    Hope the meeting with the oncologist goes ok

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi so sorry to hear of your news my husband was diagnosed with bowel cancer at 37 years old. The surgeon told us he wasn't sure if chemotherapy would work but he said he was willing to try it and thankfully it worked and shrunk the tumor and my husband was operated on and the tumor removed one lymph node was also cancerous so he is on chemotherapy for a further 3 months. Due to the location of my husbands tumor he couldn't have radiotherapy but lucky the chemo worked. Although I'm not the one going through it I have struggled with my husbands diagnosis and I have found this site such a comfort so you have definitely come to the right place for information, advice, positivity etc. I wish you all the very best. Xxx

  • Hi 

    Warm welcome from me to !

    The apprehension before an oncologist visit is understandable .

    It is dismantling to hear cancer has spread and listening to the non curative talk takes time to stabilise from . Even as a carer I required to seek help from my GP to find a way through those early days !

    It does take time for the oncologist to get to know how you as an individual respond to treatment and to tailor your treatment . With time mum my was able to treat it like a chronic condition and one treatment opened up other options . Twelve years later she is still here . She went sea kayaking after her first big resection ! 

    Hopefully the oral chemo will be working on the spread in your liver and lungs and well done for getting half way through radiotherapy and hopefully it will be shrinking too! 

    Hope tomorrow goes well . My mum was a fit 67 and gave it all she had enduring this but she has had many good times too. 

    Have a chat with your GP too . They can be a great help at this stage .

    Take care ,

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

    • Thank you so much for replying, oncologist was some positives some negatives 

    the cancer cells haven’t mutated so the next step after this radio is a short break - it’s normally 6 weeks but she wants to shorten it if I’m in a good place after radio

    reason being is she is concerned that the low dose chemo tablets won’t be working on the metastasis in lung and liver

    she wants to try an iv chemo mixed with an antibody drug once fortnightly so we’ll have to just see how that goes really 

    :) 

  • Hi 

    Sounds a good plan and also a proactive oncologist. No hanging around with her and a thorough plan ! 
    You can rest a bit tonight now you know what they hope to achieve and the timescale involved .

    Great news there is no mutations and lots of treatment options going forward !

    Take care ,

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000