One family’s journey with stage four bowel cancer

My partner Greg was diagnosed at 39 with stage four bowel cancer in November 2016 after being misdiagnosed for two years. Before he was officially diagnosed, he had been to his GP on multiple occasions and told he was too young to have cancer, even when he asked outright about it.

At one point he was rushed to A&E because the symptoms were so bad. Scans showed Greg had bowel cancer and it had spread to both lungs. We were told by a surgeon that it was inoperable and the NHS could only offer palliative chemotherapy to extend his life. Shock and terror doesn’t begin to explain how devastated we were, especially as we received this news on our daughter’s first birthday. We were left alone with this information for it to sink in. Greg was to start chemo a few weeks later, on his 40^th birthday.

Knowledge is power

I think it was denial that led my family and I to begin scouring the Internet for answers. I couldn’t believe that Greg had gone from suspected irritable bowel syndrome (IBS) which would only require making changes to his diet to being given a death sentence in just three days. This was when I began reading about other treatments such as stereotactic radiotherapy, ablation and immunotherapy.

When we first met our oncologist, he was very reluctant to answer any questions I had about these other treatments. At the time, I found this exceptionally frustrating and upsetting but now we’re slightly further into this journey, I understand this approach more – cancer treatment is a very slow, methodical process and we need to move one step at a time as everyone responds differently.

I have found out so much information through bowel cancer support forums. While they are an essential lifeline, I can’t help but feel that this information should come from the health service, not strangers desperately trying to gain some control of their situations online. Talking to other people in Greg’s situation has shown me that a ‘one size fits all’ approach to treatment simply doesn’t work and there needs to be a much more personalised system put in place.

Regaining control over the process

From our experience, I think the system could be improved by including multiple meetings with an oncologist or clinical nurse after diagnosis to explain your particular situation again. We took barely anything in when Greg was first given his prognosis, so it would have been useful to be seen by someone again soon after this to explain treatment pathways after the initial shock had subsided.

It would also be helpful to be given the prognosis by an oncologist rather than a surgeon. We were left feeling like Greg’s death was imminent, with absolutely no hope or control whatsoever. I do believe that if we'd had the different options and possible responses clearly laid out in front of us (by the person who would be treating Greg), it would have made those initial months more bearable and less confusing.

As it happens, Greg has responded so well to his chemo that all that now shows on his scans is scar tissue and has been given a three month treatment break. We would never have thought this a possible outcome seven months ago!

Get Personal 

We are calling on the Government, the NHS and professional bodies to work together to ensure all bowel cancer MDTs have access to and include established regional advanced bowel cancer MDTs in treatment decisions, including lung; liver; and pelvic specialists. An advanced bowel cancer MDT is made up of specialists (based at the hospital or a regional centre) who represent the range of specialties needed to effectively manage and treat every aspect of advanced bowel cancer. 

• Find out more about our Get Personal campaign
• Ask your MP to become a Bowel Cancer Champion and help us unlock treatment options for advanced bowel cancer
• Read our blog from Mr Stephen Fenwick, Consultant Hepatobiliary Surgeon on why access to specialists is vital
• Share your story of advanced bowel cancer