Appointment sheet
Rectal cancer
Prepared with OnCo (onco.cc/prep/rectal-cancer/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
21 on the sheetNewly diagnosed
- 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 Pelvic MRI: T stage, mesorectal fascia involvement, extramural venous invasion, lateral nodes, Mismatch repair / microsatellite status, RAS, BRAF V600E and HER2 in metastatic disease, Carcinoembryonic antigen, Circulating tumour DNA after treatment), 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?
Early (cT1-2, node-negative)
- 5.For my situation (early (ct1-2, node-negative)), which of the standard options do you recommend and why?
Locally advanced, higher risk
- 6.For my situation (locally advanced, higher risk), which of the standard options do you recommend and why?
- 7.Am I a candidate for CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?
- 8.How do the results of RAPIDO and PRODIGE 23 apply to someone like me?
Intermediate risk, sphincter-sparing surgery planned
- 9.For my situation (intermediate risk, sphincter-sparing surgery planned), which of the standard options do you recommend and why?
- 10.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?
- 11.How do the results of PROSPECT (Alliance N1048) apply to someone like me?
Mismatch-repair deficient
- 12.For my situation (mismatch-repair deficient), which of the standard options do you recommend and why?
- 13.Am I a candidate for Dostarlimab, and what side effects should I expect?
- 14.How do the results of AZUR-1 apply to someone like me?
Metastatic
- 15.For my situation (metastatic), which of the standard options do you recommend and why?
- 16.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), FOLFIRI (5-FU, leucovorin, irinotecan), Bevacizumab or related drugs, and what side effects should I expect?
Any stage
- 17.Are there clinical trials I could join, for example of AZUR-1, A Study of Dostarlimab in Participants With Untreated Locally Advanced Rectal Cancer in China, Dostarlimab, Signatera?
- 18.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 19.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 20.I read that “No validated test predicts which clinical complete responders will regrow under watch and wait”. How does that affect my plan?
- 21.I read that “Long-term bowel, sexual and urinary function after total neoadjuvant therapy is poorly measured”. How does that affect my plan?
The words I may hear
- Total mesorectal excision (TME): The standard rectal cancer operation: the rectum is removed together with its surrounding fatty envelope (the mesorectum) in one intact package, which is where local recurrences used to come from.
- Abdominoperineal resection: Removing the rectum and anus together, leaving a permanent colostomy.
- Total neoadjuvant therapy (TNT, rectal cancer): Giving all the chemotherapy and radiotherapy for rectal cancer before surgery rather than splitting it around the operation.
- Stoma (colostomy, ileostomy, urostomy): An opening made in the abdominal wall so bowel or urine empties into a bag; may be temporary while a join heals, or permanent when the rectum, anus or bladder has been removed.
- Clinical complete response (cCR): No sign of tumour on examination, endoscopy, and MRI after treatment, without surgery to confirm it.
- 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.
- Hepatectomy (liver resection): Cutting out the part of the liver containing tumour.
- Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.
- 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
Biomarker results to ask for: Pelvic MRI: T stage, mesorectal fascia involvement, extramural venous invasion, lateral nodes, Mismatch repair / microsatellite status (immunotherapy alone if deficient), RAS, BRAF V600E and HER2 in metastatic disease, Carcinoembryonic antigen (CEA), Circulating tumour DNA after treatment (under study), Clinical complete response on endoscopy and MRI.
Scans and tests linked to this cancer: Liquid biopsy (ctDNA), MRI, MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Early (cT1-2, node-negative): Total mesorectal excision, increasingly robotic or laparoscopic; transanal local excision for small, well-differentiated T1 tumours; no radiotherapy. (Total mesorectal excision (TME), Robotic & minimally invasive surgery, MRI)
- Intermediate risk, sphincter-sparing surgery planned: Six cycles of FOLFOX with chemoradiation only if the tumour shrinks by less than 20 percent (PROSPECT), then total mesorectal excision. (PROSPECT (Alliance N1048), FOLFOX (5-FU, leucovorin, oxaliplatin), Chemoradiation (chemoradiotherapy, CRT), Total mesorectal excision (TME))
- Locally advanced, higher risk: Total neoadjuvant therapy: short-course radiotherapy then CAPOX or FOLFOX (RAPIDO), or induction mFOLFIRINOX then chemoradiation (PRODIGE 23); chemoradiation then consolidation chemotherapy when organ preservation is the goal (OPRA); surgery or watch and wait for complete responders. (RAPIDO, PRODIGE 23, OPRA, CAPOX (capecitabine, oxaliplatin), FOLFOX (5-FU, leucovorin, oxaliplatin), Hypofractionated radiotherapy, Total neoadjuvant therapy (TNT, rectal cancer), Organ preservation (watch-and-wait, bladder-sparing, larynx preservation), Clinical complete response (cCR))
- Mismatch-repair deficient: Six months of dostarlimab or another PD-1 antibody with non-operative management for complete responders; surgery reserved for the rare non-responder. (Dostarlimab, AZUR-1, Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR), Organ preservation (watch-and-wait, bladder-sparing, larynx preservation))
- Metastatic: As metastatic colorectal cancer: doublet chemotherapy with bevacizumab or, for RAS and BRAF wild-type left-sided tumours, an anti-EGFR antibody; primary tumour managed by symptoms; liver-limited disease resected. (FOLFOX (5-FU, leucovorin, oxaliplatin), FOLFIRI (5-FU, leucovorin, irinotecan), Bevacizumab, Cetuximab, Panitumumab, Hepatectomy (liver resection))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call