“How bowel cancer screening saved my life”

My name’s Jennifer, I’m 60 and live in Kent. I wanted to share my story on how the bowel cancer screening test, the FIT (faecal immunochemical test), and then a colonoscopy led to a diagnosis and treatment which saved my life.

I have always had a tendency to have gastro-intestinal upsets. I associated bouts of abdominal cramps and explosive diarrhoea with an allergy to shellfish. I am sure that initially it was just that, however these episodes increased in frequency with no exposure to shellfish. When I was 57 I visited the GP to discuss this problem. Blood tests and tests on a stool sample revealed no abnormalities so I was told it was probably IBS (irritable bowel syndrome). So basically, I shrugged my shoulders, got on with it and just “coped”.  In hindsight I should have returned to see the doctor but it was the Covid pandemic and I didn’t want to make a fuss…

When I turned 60 the bouts of diarrhoea and intense abdominal pain had increased to several times a week and disturbed my sleep. So when the screening kit arrived on my doorstep in October 2021, I returned it the very next day. It’s such a simple test and presented in such a way that it is easy and “clean” to perform. I did not anticipate the positive test result (only 2% return a positive) and I was surprised when I had the letter confirming this and inviting me for a follow up colonoscopy. I was still optimistic and thought the traces of blood would be from piles, I did not contemplate that I would be one of the 9% who have a colonoscopy to have full blown bowel cancer….

I was not relishing the idea of a colonoscopy but I would like to reassure everyone that it is nowhere near as bad as I feared. The two days of low residue diet prior to the surgery was fine. The foul tasting salty and sugary drinks you had to consume on the evening prior to the colonoscopy were, to be frank, extremely unpleasant. The second half litre was a massive struggle to swallow but never mind, what is a bit of unpleasantness for something that could save your life? The diarrhoea started about one and a half hours after the first drink and continued throughout the night after the second drink. By morning you are expected to be passing clear fluids with the odd brown fleck. However I was still passing bright reddish brown watery liquid and I must admit I did worry a bit at this stage.

The colonoscopy procedure itself was a breeze. I was extremely worried about it and debated long and hard as to whether I should have the sedation. I wanted to be “with it” so that I could take in anything important communicated to me. However as I have severe arthritis in my left shoulder, I was concerned about lying on my left side which is required in the initial part of the procedure, so I opted for sedation. Sedation was an excellent choice for me, it did not “knock me out”, it just made me less anxious and blocked out the discomfort. I could still think coherently, move around and converse with the doctor and nurses. The indignity of the procedure also frightened me but rest assured, the staff are compassionate, empathetic and respectful. You are given a pair of disposable pants with a slit in the back to preserve your dignity while wearing those hospital gowns with the open back! I can assure you that I have gone through far more embarrassing procedures during family planning, pregnancy and child-birth appointments! Also it is the day job for the nurses and doctors, nothing will shock them.

Well in my case, the colonoscopy had to be cut short as the colonoscope (which is a long, flexible tube about the diameter of a ball point pen) came up against a mass in my transverse colon that was impassable. The doctor took small samples of tumour tissue (biopsies) via the colonoscope and marked the site with a tattoo. This did not hurt at all as you do not have pain receptors in the lining of the gut.

I knew immediately that the doctor was concerned and he told me straight away that I had cancer. He was concerned that the tumour was so large that it could soon completely obstruct the gut. I remember, even while under sedation, discussing the likely treatment and how much gut would be removed and whether I was likely to have a stoma. The staff were compassionate and they allowed my partner into the department despite Covid restrictions. He was with me later when the doctor and nurse explained in detail to us both the findings and the likely surgical procedure that was to follow. They gave me a written report with their findings. I had a CT scan the next morning but then I had the agonising wait for the results.

The next few days of waiting for the scan, biopsy results and the outcome of the multidisciplinary team (MDT) meeting discussing my case was the worst time of the whole cancer journey so far. I was lucky the results came back a week early and I only had to wait six days. It was a confirmed malignant cancer (adenocarcinoma) but luckily there was no visible spread to other organs.

Since then I have had half of my large intestine removed (right hemicolectomy), it was started by keyhole (laproscopic) surgery but the operation had to be converted to open abdominal surgery because the tumour had spread locally and was attached to adjacent tissues. Unfortunately it had also spread to two abdominal lymph nodes so I am classified as having stage 3 cancer (T4b,N1b, Mo). I spent four nights in hospital and was home on Christmas Eve. There is no question that the first week post-surgery was very difficult but that is all now only a memory and I am so grateful that my condition was discovered before I obstructed and I received such prompt treatment by the NHS. I now have a difficult road to navigate with the prospect of six months of chemotherapy but I am confident that I will come through it.

So the moral of the story is “listen” to your body, you will know if your bowel function is not right. If so, don’t make excuses and explain it away to yourself – find out what is wrong. Go back to your GP if you are initially fobbed off, IBS should only be a diagnosis if everything else has been ruled out. Please don’t be shy, send back your bowel cancer screening test as soon as you can, it really could save your life.

The faecal immunochemical test (FIT) in England (left) and Scotland (right).

Images courtesy of Public Health England and NHS Health Scotland.