What now? (bowel cancer diagnosis)

Hi. I decided to post this after getting a 'probable' diagnosis of bowel cancer 2 days ago and then giving myself heightened anxiety by doing the dreaded Google search!

Long story short, I am 39 and was told by a consultant that I had probably cancer of the bowel after he had completed a colonoscopy. Couldn't give me the definite diagnosis as has to wait for the biopsy result but his face and "you have a long journey ahead" comment to me was a clear indication of what he thought.

Told me that he wants me to have a CT scan to see if it has spread to my lungs. And that was it... He left the room and I have been left devastated since. 

World has fallen apart, family are also devastated and saying all the right things "we will fight this". But what do I do now? How do I just carry on? Do I have to do anything specific? When am I going to die? Do people actually survive long periods from bowel cancer treatment? 

I don't know if I am really asking a question. I am just at a loss after seeing all the online survivor posts...most of whom do not have any affirming statements to make. I'm scared and just wanted to vent, I guess. 

  • I had the same kind of 'care' following my bladder cystoscopy. Although I was told straight away it was cancer I did not have any after care or support. The registrar said it is cancer go home and we will operate in 2 weeks. I slipped thorough the net and did not receive any hospital specialist support. The next two weeks were horrendous especially for my husband. He even woke up in the middle of the night stating did I want to be buried or cremated !!!

    My advice is try and stay as calm as you can until you know what you are dealing with and the next stage of treatment. It is the not knowing which is the worst.

    Telephone Macmillan nurses for support. They are amazing and kept me sane so that I could face everyone else. They also have amazing information sheets. Googling is a no no at this time as there are a lot of scary things out there which may be irrelevant

    Take care and I hope for the best for you xx

  • Hi 

    Sorry to read your news and the reason you have come to this forum and whilst your exact diagnosis is not known yet I wanted to welcome and let you know I had bowel cancer four and half years ago, surgery, six months chemo and job done, was actually pretty easy for me and I'm still living to tell the tale .  I know you frightened right now and once you know what you facing it will be better as you can focus on a forward goal.  I worked through my chemotherapy and was at work 6 weeks after my surgery.  I won't lie the chemo was the 'not so nice' part but overall not as bad as I expected and very doable. Although this is my experience with my diagnosis I hope it gives you some calm and encouragement to know it might not be as bad as you think, even though nothings good when it comes to cancer.  
    Please don't use Dr Google stick to this forum for help and info, the nurses and everyone on here are very helpful and way more factual.

    sorry I don't know anything about lung cancer.  Best thing is to try not worry until you know exactly what you facing, easy said than done I know, but keep yourself busy with other things if you can.

    I was 45 when diagnosed, I'm now 50 with no further reoccurrence of bowel cancer.

    JBee x

  • Hi Teenz and thank you for replying to my message. 

    You are right, the not knowing is the hard thing to deal with - this limbo. I need to try and compose myself and just stay calm until I know what I am going to be dealing with. My sane head tells me to stay away from Google but that head seems to disappear in the late hours when I can't sleep! I need to hide the phone!!

    It is good to hear your have had good experiences with Macmillan nurses - I will take this on board, thank you. 

    Thank you again for taking the time to respond to my message, it really does mean a lot. Take care and I wish you well for your journey too xx

  • Hi JBee

    Thank you for replying to my message and sharing your experience. Reading your message was like being able to let out a sigh of relief that there is a possibility of a good outcome despite the road to it having its challenges.. Thank you for that xx

    Dr Google is too easy to access! I think I might need to hide my phone at night when he is most alluring.

    Thank you again for replying and I am glad your outcome was good. Wishing you continued good heath xxx

  • Hi 

    I'm so glad my message has had a little bit of a positive impact.  It's not easy when you waiting for a full diagnosis and I hear you about Dr Google but we have all done it so you not alone . There is every possibility of a good outcome medical science has come such a long way.  Trust the Drs and push for answers when you feel they not being clear enough, put yourself in control body, mind and soul, keep a positive mind and you will conquer this.  
     

    Happy for you to chat anytime you feel like ranting and if I can answer any questions I will from my experience.  Just remember you not alone in this.  By the way I still use Dr Google but I steer it always to nhs or McMillan websites .... it's hard not to.

    Now try have a lovely Sunday. X

  • Oh my friend I was reading your letter and thinking I had just read my own thoughts.I was told I had this awful cancer  on July 26th the day before i went on holiday .My world had caved in but I was told go off and have a nice time  and when I got home I would go for an MRI Scan to see if it had come through the bowel wall...seen consultant 3 weeks later 3 looong weeks it was ....who said that an operation wasnt gong to work as I wouldnt survive I have other health problems with lungs ,also a smaller op wouldnt work ,,,nor chemo  but maybe radiotherapy would help a little but just go and enjoy your life  and we will help with pallitive care.I feel well theres nothing can be done ...is this it ...nothing to be done.I see the Consultant on Tuesday to see what options there are ..so again its the waiting game  I look on google but then think nooo this doesnt apply to me .Keep strong and keep asking questions to the correct people.I have a great  family to talk to ..you must talk about it dont let it stay in your mind  and cope alone  theres brilliant nurses and people to talk to.Good luck my friend   keep in touch .

  • Bowel cancer responds very well to treatment and doesn't usually spread to lungs.

  • Hi Lindamcc

    Thank you for your response and sharing your experience and current situation. The waiting game is the worst but it seems like we both have brilliant families to support us. Fingers crossed for you and your consultant appointment Tuesday xxx