Hello, I'm Betty and I'm 35 years old (34 at diagnosis). My journey started last year.
First experienced bleeding when I went to the toilet in late July - on holiday as it so happens... I presumed it was piles from eating differently and mentally told myself to keep an eye on it.
Still was having bleeding which seemed to be getting worse and more noticeable, so I braced myself and called the docs but could only get a telephone appointment. I was fobbed off by a locum GP who couldn't get me off the phone quick enough and told me I had piles. Not sure how you can diagnose piles over the phone! I was prescribed suppositories.
Funnily enough said suppositories didn't work. I went back to GP in October 2021, had digital exam where swelling was felt, so sent for colonoscopy and blood tests through urgent 2 week wait. Fit test returned at >200ug (normal is <10) and fecal calprotectin was 58ug (normal is <50ug).
Had traumatic colonoscopy on 26th November, which I found extremely painful. A large rectal polyp (circa 18mm) was found and removed by EMR. I was drowsy but woke up to an alarm going off in theatre and doctors crowing around me. The quarterisation machine broke so after the endoscopist lifted and removed my polyp, my bowel had to be manually clipped rather than quarterised. Was kept in for observation for 4 hours but was told all looked fine, just a nasty polyp, and was handed my colonoscopy report which read "you do not have bowel cancer".
On December 10th I was asked to come in for a CT scan. I asked why and was told by the caller that she wasn't clinical and couldn't tell me. I went for my CT scan with contrast for chest, abdomen and pelvis on 15th December. I asked the nurse on the day why I was having a CT scan, to which she looked at my notes and said "that's strange I would ask for an appointment".
On January 5th I was asked to come in for a repeat colonoscopy, I asked why and the person on the line said she couldn't tell me because she wasn't clinical. At this point I'd had enough and my anxiety and levels of confusion were through the roof. I refused to attend until someone told me what was going on. On January 6th I was called by a Colorectal surgeon and told that at pathology, they found that the polyp in my rectum contained adenocarcinoma. My jaw hit the floor and it was horrible to be told this over the phone. However the surgeon said that it was all out and that I would just need surveillance. I was also told my CT scan was clear and showed no spread. On January 10th I visited Clinic and was told I would need either watch and wait or surgery, depending on MDT opinion after results of a forthcoming rectal MRI. Surgery was deemed to be the extreme outcome. My cancer was classed as well differentiated, but less than <1mm from resection margin. MRI scan was awful as I suffer from severe claustrophobia and panic disorder, and I was in there for 45 minutes with no music and no one talking to me, just alone with my racing thoughts. However MRI was thankfully all clear.
Flexible sigmoidoscopy on 11th February all clear and no sign of recurrence at the polyp excision site. No biopsies taken as deemed not necessary.
Despite having all clear scans and clear endoscopies, I was told on 14th March that MDT recommended low anterior resection surgery rather than watch and wait. This took me a while to get my head around and I sought a second opinion from a different surgeon as well as a friends dad who was a GP. I just couldn't get my head around how I was told "no bowel cancer" on my original colonoscopy report, to being advised initially that I'd just need surveillance, to then having all clear scans, to needing major surgery. I didn't understand what had changed and I really really struggled with this - I went straight to the pub from the hospital 🙈. I was so disappointed, angry and confused. I was advised that I would need a temporary ileostomy bag and reversal at a later date. I think this is where the rollercoaster that is navigating a cancer diagnosis really hit me and reality sank in. My denial bubble had burst.
I spent the first part of the month still deciding whether to have surgery. I was assured that my type of cancer was slow growing and there was no rush to operate. Because I was such a borderline case, the surgeon requested a supplementary polypectomy report from the pathologist and found that my polyp was Kikuchi sm3 depth of invasion. With my margin less than <1mm I was deemed too risky to leave, as risk of lymph node metastasis was high. With this extra information I decided to have surgery. I went for pre op assessment on 24 April - all went well apart from a borderline ECG!
My operation was booked for May 16th. In the meantime I requested my medical records to try and understand my case a bit better and to make peace with needing surgery. I felt I had too many gaps in understanding. My history read that my polyp was pT1 invasion, 6cm from anal verge, no tumour budding, no lymphatic, venous or perineural invasion, but it was now classed as moderately differentiated (?) and was <1mm from normal tissue margin. LAR surgery on 16th May went well, I was in hospital for 4x nights in north London, and discharged on 20th May. I didn't like coming off the anaesthetic very much as I couldn't sleep from feeling panicky, however the stay in hospital was totally doable and the nurses were amazing. My partner was a saint looking after me at home - he did everything from washing my hair, to putting on my DVT stockings, to dressing me, cooking, cleaning, and looking after our puppy, all whilst working from home.
Histology officially confirmed on 16th June 2022 as T1N0M0, no further treatment or chemo needed! Hooray! They couldn't find anything in my sample so there is a chance that I have been over treated with this surgery, but I see it as an insurance plan! Will be put on surveillance plan and ileostomy reversal will be after November 2022. Not looking forward to my water soluble enema soon 🙃.
Recovery going well so far aside from nerve pain in left thigh with unclear cause.
Due to be back at work 16 August as was advised to take 3 months off.
Thank you for reading it you have gotten this far!