Shock bowel cancer diagnosis spread to liver

Hello

I am posting here in hope of support, understanding  & hope. I also hope to give that to others reading this. I am sorry to anyone reading this that it means you or a loved one are struggling with this hideous disease.

My husband is 36, he is young, active, physically fit, ideal weight, non smoker, non drinker with no family history of bowel cancer. Last September he ran a half marathon, January he went snowboarding, February he cycled 200 miles for charity. We thought he was very healthy, he had no health complaints or symptoms. 8 weeks ago after dinner he came out of the toilet worried there was a lot of blood (first time this happened) an hour later he went again & the toilet bowl again was full of blood. Thinking there was some sort of internal bleeding or rupture I told him to call 111, they told him to go to A&E. Whilst in A&E the same thing happened 3 more times, they took samples of the blood he passed as well as blood tests. We got no results from these to cause concern so he was sent home & told a gp call would be booked for him. 4 weeks later he had that gp call & let them know that he was still suffering. They booked a test for an internal examination & biopsy. They told him they would test for chrons disease, ulcers, cancer but given his age & health not to be concerned he most likely had hemorrhoids.

The day of the appointment came and I almost didn't go with him as we were told not to worry but as I had a day off I went with him. The test was done and the doctor told us he discovered two tumours one of which was cancer. He himself was very surprised we were sent home straight away saying not to worry everything is treatable, bowel cancer isn't what it was 20 years ago & to go home & get ready to be called in for treatment it all seemed very strange.

We then got a call from the macmillan nurses explaining the process of the MDT meetings, we were told he needed a CT scan & MRI before they could book treatment & told the scans would be booked & we would get results the Tuesday after. The Tuesday after came & we received a call letting us know the cancer had most likely spread to the liver, there were 4 spots on the liver they wanted to investigate further. They said there were cancer cells in the blood stream around the tumour and they were sure the 4 spots on the liver were tumours as there's nothing else they could be. He's had to go back for a MRI of liver & a PET scan to tell if it's spread further.

I asked the nurse what this all means & she told me the tumours are not operable. She said the bowel tumour is contained in the bowel at present but they would not put someone through major surgery in my husbands condition with the cancer having spread. We now wait until Tuesday 18th for the results of the further MRI scan & PET scan. I asked what stage my husbands cancer is but she says they dont know as only determine stage once they disect a tumour after its removed. This doesn't sound right especially as saying its not operable so does that mean not removed? 

Is anyone able to help me? The nurse did not fill me with any hope & all sounded quite negative. My husband has everything to live for we have a 4 year old this is all such a shock & seems a surreal way to discover you have two cancers. My questions are:

1) is his cancer automatically stage 4 cancer? Everything online indicates bowel cancer that spreads to liver is stage 4 & advanced

2) does not operable mean not treatable?

3) if the cancer has spread & is not operable does this mean it is terminal?

4) what happens now in terms of timescales

Please help if anyone can shed any understanding on this. He doesn't have a single symptom. Symptoms online are extreme pain, extreme exhaustion, loss of appetite, unexplained weight loss, feeling full after small meal, yellow skin, yellow eyes. He has none of this, he is still working long days, going for runs, walking our dog, playing with our 4 year old. This all seems mad.. 

Thank you in advance to anyone who reaches out to me. I really appreciate the support this group is able to bring. 

  • Dear Hopeful/Wife

    I have read your post and understand your fears and hopes and would not in anyway wish to cause you distress.   My son was 34 when he was admitted to hospital in april 2016 with severe pains and vomitting.  He was diagnosed with stage 4 bowel cancer and secondary bowel cancer in his liver.  Like your husband he was healthy active etc and had no physical signs although the year before he had been to the drs and was never sent for any xrays scans etc had blood tests and poo tests and at our drs if they did not call you in the results were ok.  We only found out later that those tests had not been tested as they did not fit the criteria required.  Everyone who is diagnosed is an individual and ones persons story does not necesssarily mean that will be the course that your husbands cancer will follow.. If you look up my user name sad mum you can read the posts and follow Jonathans story.  On the macmillan site on the bowel cancer one of the champions mother had stage 4 bowel cancer with liver mets had chemo liver section and she is still going strong 7 years on.   I do not want in anyway to give you misinformation and you are both still waiting for the professionals to give you the results and inform you of treatments etc.

    I do think that the medical profession need to look at people under 40 who present with symptoms that they say could be ibs or crohns etc need to wake up and realise that the amount of younger people with bowel cancer is on the increase and more focus is needed.  This has probably not been very helpful but at the time of diagnosis Jonathan had not lost weight he was slim anyway, was not yellow and apart from being tired wihich we put down to the stress of a new job (if only).  Ask as many questions, look at all new treatments that are coming on board, I know that you will both be reeling from what has happened to you both.  The Macmillan nurses provided a lot of practical help, if your hospital has a Maggies centre that is a good place to go and talk and have counselling, Clan do a good job in that respect as well. I hope that you get some positive news.  If you want you friend me and we can message privately.  It is a very frightening place to be at the moment so much unknown and very overwhelming.   Sending you both love. lesliex

  • Thank you for your empathy. I'm sorry to hear your story. You're right about the lack of testing until its too late so many stories of young people in this situation. Such a shame. I hope to spread awareness through this. X

  • Thank you for your advice. I'm sorry for your story x