Susan McKenzie, 49 from Edinburgh
"In 2009, I remember collapsing at work from acute abdominal and right shoulder tip pain. I had never experienced pain like it and never have again. My work colleagues took me down to our hospital A&E department for immediate treatment. Once home, I phoned my GP surgery to let them know that I had been in A&E and I was then referred for an abdominal ultrasound. I have since read on the Bowel Cancer UK website that that those with an underlying health condition can have delays in investigations further delaying a bowel cancer diagnosis.
"As I had polycystic ovaries it was assumed to be a ruptured ovarian cyst - with hindsight this was not the case. The ultrasound scan didn’t show anything and I didn’t have any pain again. In the years following this episode I do recall seeing my GP for periods of unrelenting tiredness on and off, but as a charge nurse I had a busy and stressful job so for a long time I just put it down to that. I did have routine blood tests on a number of occasions throughout this time but again, I was told these were all normal.
"Fast forward to Aug/Sept 2015, I was suffering from lower back pain and a pain under my diaphragm, which was getting progressively worse despite self- medicating with ibuprofen for six weeks. It had started to interfere with my fitness training, particularly during running when I felt more breathless. The pain moved to my right shoulder tip and I began feeling nauseous all the time completely losing appetite. During this time from the end of August to October 2015, I went to my GP surgery four times as the pain and symptoms were increasing rather than getting any better despite medication prescribed. The final GP visit resulted in me deciding to pay privately for an ultrasound scan of my gall bladder/ liver on Oct 27th2015 – the same day I was told that the radiologist saw “scatterings” in my liver. An NHS routine scan would’ve taken weeks and I felt so unwell, I couldn’t wait that long. I was referred to the oncology department at the Western General Hospital that same day, then started a battery of blood tests and investigations including liver biopsies.
"A colonoscopy revealed that there was a small 2cm lesion on the wall of my sigmoid bowel, which was also examined. As a nurse, I knew then that it meant that my cancer had spread but oddly the primary tumour in my bowel was no longer there, which may explain why I had none of the usual symptoms of bowel cancer and it never did show up on my CT scan.
Initially I didn’t tell many people about my cancer diagnosis, just close family and friends, as I didn’t want to be defined by it, nor did I want any one treating me differently.
"My CT scan diagnosed liver tumours (one on each side of the liver) and in December 2015, the week before Christmas, I started chemotherapy and a targeted drug therapy fortnightly (FOLFOX and cetuximab). This protocol continued every two weeks until November 2016 when I was referred back to the hepatobiliary surgeons and had further detailed scanning done to establish whether they could operate successfully. Although my tumours had shrunk considerably with chemotherapy, one was considered too large to allow the surgeons cancer free margins so in January 2017 I began second line chemotherapy (FOLFIRI) until May 2017. I have since undergone SIRT (selective internal radiotherapy treatment) to both tumours in June of this year and my CT scan results are awaited to assess how well this has worked.
"Initially I didn’t tell many people about my cancer diagnosis, just close family and friends, as I didn’t want to be defined by it, nor did I want any one treating me differently. I worked full time as a paediatric nurse throughout my treatment, other than chemotherapy days, only stopping to have the SIRT therapy in June of this year. Luckily I had very few side effects from any of my chemotherapy and continued to fitness train 3-5 times a week as I had done before. This really helped, not just in terms of physical strength but mental focus and maintaining some normality and control of the situation. I have since read that a lot of people facing such a diagnosis just want to carry on as normal doing “normal things” like working and all the things they did before not allowing a cancer diagnosis and subsequent treatments interfere with their lives (where possible). Sadly, I have come across many people who just don’t “get that” and are happy to offer advice to the contrary! Being a stubborn and determined person all my life I wasn’t going to allow cancer to take over my life- it’s only part of my life/me. My wonderful oncology consultant told me from the beginning to treat this diagnosis like any other chronic condition such as diabetes or hypertension which is exactly what I have done for the last two years."
But we’re improving access to treatment and care for advanced bowel cancer
Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.
We are determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:
- Increasing survival rates and improving holistic support for patients and their families
- Reducing inequalities in access to potential life-saving liver surgery
- Improving access to cancer drugs based on clinical need and not postcode
- Providing better communications and support for people with palliative and end of life care needs