Full account of my recent bowel cancer scare - from initial symptoms, through to numerous investigations, and eventually the all clear

Hi all,

 

Having gone through a bowel cancer scare recently, finding it extremely stressful, and spending a lot of time reading through posts in this forum, I wanted to share a detailed account of my experience from start to finish and some key takeaways (in the hope that it will help others):

1) Do not go down rabbit holes on the internet – researching may point you in certain direction (even if viable medical journals and other research papers) but everyone’s body is different so you really can’t know what is going on without consulting with a specialist.

2) Whatever happens, all you can do is put your best foot forward – if you are diagnosed with cancer then you must do everything you can to fight it and go on to live your life; and if you aren’t diagnosed, learn from the experience and change your habits to ensure you are as healthy as you can possibly be to reduce any future risk.

3) Speak to people about it – whether that be friends, family, or even close colleagues, you would be surprised by how many people have gone through a similar situation.

 

Detailed breakdown of my symptoms, and what the investigative process that entailed:

3rd December (Symptoms begin):

Travelled to Asia to visit family, upon arrival I had a spout of loose stools (uncommon for me) which lasted 3 days. However, simultaneously I began to experience a worrying amount of bright red blood when wiping (much more than just a streek or two). I was not particularly worried at this point, as I had experienced a single instance of this previously (a number of years ago) and assumed that it wouldn’t last.

7th December (Symptoms continue):

Although my stools went back to normal after a few days I was still finding bright red blood every time that I wiped after going to the toilet. Still at this point I was not too worried; I have one small external haemorrhoid so assumed the blood was from internal hemorrhoids that were flaring up due to a fairly boozey few weeks in the run up to December and Christmas holidays.

26th December (Symptoms continue):

Still finding blood when I went to the toilet I had read on the NHS website that if these symptoms persisted for 3+ weeks you should speak to a specialist.

 

28th December (Initial video consultation with doctor):

Fortunately, through work I was able to have a video appointment with a specialist, I ran through my symptoms and he referred me to a gastro specialist.

 

5th January (Initial consultation with gastro specialist):

I met my gastro specialist and talked him through my symptoms. His view was that due to the colour of the blood it was down to internal hemorrhoids potentially flaring up due to long haul flight I took earlier in December (air pressure changes, dehydration, and extended period of time sat down), and my increased alcohol consumption. He recommended that I have a flexible sigmoidoscopy (camera test of the small bowel) and do a FIT / Calprotectin test (you provide a stool sample for analysis – FIT looking for blood and calprotectin for inflammation) the morning before the flexible sigmoidoscopy. I had also decided to do dry January to see if that made an impact on my symptoms.

 

24th January (Symptoms stop):

No longer finding blood when wiping and feeling fairly reassured that the theory around hemorrhoids' / drinking was accurate.

 

1st February (Flexible sigmoidoscopy and FIT / calprotectin test):

I took my stool sample at home and headed to the hospital, handing the sample in at the nurses’ station before prep began for the flexible sigmoidoscopy. The nurse took my weight / blood pressure and talked me through what would happen, I would change into a hospital gown, be given an enema, and then taken in for the short procedure. The procedure lasts five minutes and you are given the option of being sedated or receive gas and air. I opted for gas and air as someone would be required to take you home if you choose sedation, you would also be unable to work / drive for the rest of the day. The procedure was uncomfortable at times but manageable since it was over quickly, afterwards I was able to get changed and chat with my consultant. The consultant gave me an envelope containing the pictures that were taken and told me that he had noticed some internal haemorrhoids that were not engorged at the time, and otherwise everything else was fine. We agreed a follow-up conversation in a few weeks to discuss next steps.

 

12th February (Follow-up consultation):

Surprised to hear that despite my flexible sigmoidoscopy showing nothing serious my stool test was significantly positive with a faecal calprotectin of 793 and a FIT test positive at around 200. The Doctor’s view was the results were “slightly surprising as he has got no other symptoms currently and he has certainly no blood or diarrhoea to account for this”. We agreed to repeat the FIT / Calprotectin test in 3 weeks, and if results remained high I would be booked for an MRI to look at the rest of my bowel (areas not covered by the flexible sig which only looks at a third of the large bowel).

 

19th February (Feeling worried):

Having admittedly spent too much time with Dr Google I was extremely worried after reading about FIT / calprotectin results and what they indicate. Particularly because if these symptoms were caused by inflammatory bowel disease (Crohn’s / Colitis) I would be experiencing other symptoms such as diarrhoea which I was not. Due to this I was extremely worried that my symptoms may be caused by bowel cancer. I contacted the doctor’s assistant to request we run the MRI in parallel to the repeat FIT / calprotectin test, they agreed to do so.

 

9th March (MRI):

I was told not to eat for a number of hours prior, and arrived at the hospital an hour before the scan where they informed me of the process and I was sat down for an hour. During this hour I would drink a cup of oral contrast drink every 10 minutes. This allows them to better see the bowels during the scan but also acts as a laxative so I was going to the toilet regularly after half an hour. Following this I was given a hospital gown and prepped to receive an injection (that would be administered during the scan) of a contrast liquid into a vein in your arm was to enhance the MRI’s imagery. I was then told to drink 2x more cups of the oral contrast prior to getting into the MRI. The MRI lasted around 30 minutes, you are given headphones playing the radio which pauses now and then. You are given instructions to breathe in, our, and to hold your breath for 20 seconds or so. Post the MRI my vision was blurry (due to the injection) for around 10 minutes, I got changed back into my clothes and headed home.

 

18th March (MRI and second FIT / calprotectin test results):

Relived to hear my FIT result was no longer positive, my calprotectin had dropped down from 793 to 7, and the MRI results showed some inflammation where the large bowel meets the small bowel, but no cancer. Agreed next steps would be a colonoscopy to investigate inflammatory bowel disease, and some blood tests to highlight potential celiac, gluten intolerance, etc.

 

Happy to answer any questions anyone may have. Do try your best to take note of the takeaways highlighted upfront rather than worry / panic if symptoms arise (appreciating this can be easier said than done) - from my personal experience knowing these points from the start would have been extremely beneficial.

Wishing anyone reading this all the best.

  • Yes it seems high , mine was 168 and i had a 5cm tumour, but there is other things it could be so hopefully it will be one of those 

  • Thank you for posting this - I am extremely scared at the moment and reading something positive helps a little! I had a scan recently and they found I have bowel wall thickening. I have also had three FIT tests which were 112, 129 and then over 200 so obviously going up. I have also just found out that my nan passed away in 1998 with colon cancer so I am extremely worried now. I feel it’s not looking good for me. I’m on the 2ww for a colonoscopy but feel so anxious it’s making me ill. I’m glad yours worked out well for you x

  • Hi Harriet have you got a date yet for your colonoscopy? I’m still waiting for mine. 

  • This sounds very much like my mum. She had a colonoscopy yesterday and they found a 4cm tumor. She’s awaiting further tests to see if it’s spread, but she had no symptoms, just very lucky the GP recommended a FIT test after she got diagnosed with anaemia in Jan. What other treatment are they giving you, or was it just the operation? 

  • I had a 5cm tumour, they gave me a ct scan and it hadn’t picked up any spread, i then had an operation to remove it , on close inspection they found it had creeped into two of 22 lymph nodes, i am down for some mop up chemo the monitored for the next 5 years, 

  • Thanks so much for your reply. Wishing you all the best with your chemo. Sounds very similar to my mum’s. No symptoms, she’s now down for a CT scan just hoping it hasn’t spread. Do you mind me asking what age bracket you fall into? She’s 76. 

  • 70 still feel tired after the operation, i have a reversible stoma, what made your mum go to the doctors? , all i had was a small bit of blood and mucus 

  • She was just under the docs anyway because of something which happened a couple of years ago (nothing serious) but she had to have regular blood tests each month. Anyway one of the tests came back as showing anaemia so the GP decided to do FIT test. It came back as positive but my mum had not other symptoms other than the anaemia. Was your op keyhole? I wonder if she may need that too for a period of time. 

  • Hi Rosie Lee,  the hospital are ringing this week . :(  

  • Mine was key hole six and a half hours , i have not had any pain at all from the area which was operated on at all  , i was in hospital about seven days probably been out a little earlier but it was over a weekend , it would have been so easy to dismiss my symptoms as IBS or similar, , slowly recovering to full strength from the operation , knowing what i can and should not eat can be a little confusing at times , i don’t seem to have a large appetite anymore, i did lose weight but i am putting that down to the bowel cleansing for the colonoscopy and the operation because before the operation i felt fine i wasn’t losing weight nor was i feeling fatigued