Early-onset colorectal cancer (under 50)
Prepared with OnCo (onco.cc/prep/early-onset-colorectal/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
19 on the sheet- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Multigene germline panel for every patient diagnosed under 50, Mismatch repair / microsatellite status, RAS, BRAF V600E and HER2 as for all colorectal cancer, Colibactinmutational signature, Iron deficiency and rectal bleeding as presenting signs at any age), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
- 5.For my situation (screening and early diagnosis), which of the standard options do you recommend and why?
- 6.Am I a candidate for Shield, Cologuard, and what side effects should I expect?
- 7.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
- 8.For my situation (localised disease), which of the standard options do you recommend and why?
- 9.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), and what side effects should I expect?
- 10.How do the results of RAPIDO apply to someone like me?
- 11.For my situation (metastatic disease), which of the standard options do you recommend and why?
- 12.Am I a candidate for Pembrolizumab, Encorafenib, Tucatinib or related drugs, and what side effects should I expect?
- 13.For my situation (survivorship), which of the standard options do you recommend and why?
- 14.How do the results of CHALLENGE (CCTG CO.21) apply to someone like me?
- 15.Are there clinical trials I could join, for example of Use a polygenic risk score to set when screening starts, Automatic germline testing for every cancer type where it changes care, Shield, Colorectal cancer screening (colonoscopy, FIT, stool DNA, blood)?
- 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 18.I read that “The cause of the rise is unknown; no exposure has been proven”. How does that affect my plan?
- 19.I read that “Diagnostic delay in young adults with rectal bleeding remains long”. How does that affect my plan?
The words I may hear
- Faecal immunochemical test (FIT): A stool test for hidden blood, done at home every year.
- Colonoscopy: Examining the whole large bowel with a flexible camera; polyps found on the way are removed (polypectomy), which prevents most bowel cancers.
- Total neoadjuvant therapy (TNT, rectal cancer): Giving all the chemotherapy and radiotherapy for rectal cancer before surgery rather than splitting it around the operation.
- Sidedness (left vs right colon): Where in the colon a tumour starts changes its biology and which drugs work.
- Organ preservation (watch-and-wait, bladder-sparing, larynx preservation): Curing a cancer with drugs and radiotherapy so that the organ (rectum, bladder, larynx, limb) does not have to be removed, keeping surgery in reserve for the minority whose cancer regrows.
- Lynch syndrome: Lynch syndrome is the most common inherited cancer syndrome: a faulty mismatch-repair gene raises lifetime bowel cancer risk to 40-80% and also endometrial and other cancers.
- Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR): Microsatellite instability is the mark of a broken DNA spell-checker (loss of MLH1, MSH2, MSH6 or PMS2) that leaves thousands of mutations, so the tumour displays abnormal proteins that T cells can recognise.
Tests and results to bring
Screening and early diagnosis: Average-risk screening from age 45 (colonoscopy, faecal immunochemical test, stool DNA or blood test); earlier and more frequent colonoscopy for family history or a known syndrome; investigate rectal bleeding and iron deficiency promptly at any age.
Diagnosis and staging: Germline multigene testing for every patient; mismatch repair, RAS, BRAF and HER2 testing; fertility counselling before treatment.
Biomarker results to ask for: Multigene germline panel for every patient diagnosed under 50, Mismatch repair / microsatellite status, RAS, BRAF V600E and HER2 as for all colorectal cancer, Colibactin (pks+ E. coli) mutational signature (research), Iron deficiency and rectal bleeding as presenting signs at any age.
Scans and tests linked to this cancer: Colorectal cancer screening (colonoscopy, FIT, stool DNA, blood), Germline (hereditary) testing, Histopathology & immunohistochemistry, Liquid biopsy (ctDNA), DNA methylation profiling, AI polyp detection in colonoscopy.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Localised disease: As for colorectal and rectal cancer by stage: surgery, adjuvant FOLFOX or CAPOX for stage III, total neoadjuvant therapy or organ preservation for rectal tumours; no escalation on the basis of age alone. (FOLFOX (5-FU, leucovorin, oxaliplatin), CAPOX (capecitabine, oxaliplatin), Total neoadjuvant therapy (TNT, rectal cancer), Organ preservation (watch-and-wait, bladder-sparing, larynx preservation), RAPIDO)
- Metastatic disease: Genotype-directed therapy as for all metastatic colorectal cancer: checkpoint blockade if mismatch-repair deficient, encorafenib-cetuximab for BRAF V600E, HER2 or KRAS G12C combinations, otherwise chemotherapy with bevacizumab or an anti-EGFR antibody by sidedness. (Pembrolizumab, Encorafenib, Tucatinib, Sotorasib, Bevacizumab, Cetuximab)
- Survivorship: Structured exercise (CHALLENGE), long-term neuropathy and bowel function care, fertility and sexual health follow-up, financial and employment support. (Exercise & lifestyle oncology, CHALLENGE (CCTG CO.21))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.