Originally from the UK, and now an adopted Kiwi living near the coast on the Lower North Island.
18 month history of GP visits. GP fixed on diagnosis of IBS. High, 48mm rectal cancer detected 29/08/2016 by colonoscopy. staged as cT4aN1aM0.
Told PNI and early EMVI likely, and tumour possibly through bowel wall into peritoneum.
Chemoradiation long course 10/10/2016 - 28 doses over 6 week plus Capecitabine - completed 17/11/2016.
Surgery 4 Jan 2017 High anterior resection but with temporary ileostomy. Ileus related complications meant a 16 day stay.
Meeting 14 Feb with oncologist to discuss path report and chemo regime. Now pT3 N1a(mi) M0. Lots of risk factors reduced (contained in bowel wall, no EMVI, moderately differentiated, just micrometasteses found in one lymph node) so will just be on Capecitabine 2 weeks on/ one week off for four months. Mutually agreed not to include oxaliplaitin due to a trade off between added efficacy, toxicity and quality of life relative to risk of recurrence and spread.
16 March - ten weeks after surgery and on cycle 2. Tight calf pain for a few days. Then on 16/3 had pain in ribs radiating up to shoulder and neck. Off to A&E as I suspected DVT and PE - bloods, -ray, CT angiogram of chest. Admitted to Ward at this point. Turns out I'd guessed right, multiple blood clots, pleural effusion, infarction and infection! Now have to give myself lovely Clexane shots to the abdomen for the next six months.
17 June 2017 - chemo finished.
2 August 2017 - ileostomy reversed, normal service has been resumed. No post reversal problems. CEA 1.2
1 November 2017 - completion colonoscopy (not able to get round in August 2016) - all good. CEA 1.9
3 January 2018 - CT scan - completely clear- yay! 18 Jan 2018 CEA 1.3
3 November 2018 a sigmoidoscopy- clear, no signs of local recurrence. 29 November CEA 1.3
CT scan Feb 22 2019. All clear, apart from "thickening of appendix tip" which may be totally unrelated.
CT scan July 3 2019, appendix now normal, and everything else is wonderfullyy “unremarkable”. CEA 1.9 That marks two and a half years post surgery - half way there
15 Jan 2020 - CEA 1.3. Moved to annual follow-ups.
22 July 2020 - CEA 1.7
Final surveillance colonoscopy in Dec 2020. Healthy around anastomosis.. One 1mm sessile polyp in the caecum, and a 9mm sessile polyp at the hepatic flexible. Both removed by cold snare - histology says no malignancy or dysplasia- yay!
Recommended another scan in 5 years.
Four year follow-up appointment Jan 2021. CEA 1.5. Confirm continue to be NED. Because of the node involvement, will get a final CT scan at the end of 2021. May 2021 CEA 1.6.
February 2022 - final 5 year post op CT scan - not anything, anywhere! Now discharged from consultant - six monthly CEA and that’s it.
I’m left with two scars and some minor adhesions at the site of the ileostomy as a reminder, but otherwise no ongoing issues. It’s my six year anniversary of diagnosis in August 2022.