Colorectal cancer · Decisions and support

Newly diagnosed

Who is my clinical nurse specialist, and what is the 24-hour number for the team?
Why: The NHS says a specialist treatment team explains the treatments and helps you manage side effects; every urgent card on this page starts with ringing that number, so it is the first thing to write down.
Is my cancer in the colon, the rectum, or both, and what stage and grade is it?
Why: Bowel Cancer UK puts the stage and grade first on its list of questions; the NHS says treatment depends on whether the cancer is in the colon or rectum, because rectal cancer often has radiotherapy and colon cancer usually does not.
Has my case been to the multidisciplinary team meeting yet, and how will I hear what was agreed?
Why: Macmillan says a team of specialists meets to plan your treatment; NICE NG151 asks for information on all treatment options available to you, including the benefits, risks and side effects.
Have the tumour tests been sent: mismatch repair or microsatellite instability, RAS, BRAF, and Lynch syndrome testing?
Why: NICE NG151 says to test for RAS and BRAF V600E in everyone with metastatic colorectal cancer suitable for systemic treatment and points to its guidance on molecular testing strategies for Lynch syndrome; Macmillan explains what the tests on the cancer cells look for.
Am I likely to need a stoma, and if so is it temporary or permanent?
Why: NICE NG151 says to tell people the likelihood of having a stoma, why it might be necessary and for how long it might be needed; Bowel Cancer UK says the surgeon may not know for certain until the operation has started.
Is there a prehabilitation service here, and what should I be doing in the weeks before treatment?
Why: Bowel Cancer UK says prehabilitation improves your physical and emotional health before treatment and can reduce complications and time in hospital; Cancer Research UK describes the exercise, diet, smoking and wellbeing parts.
Will treatment affect my fertility, and can I see a fertility specialist before it starts?
Why: Bowel Cancer UK says some treatments for bowel cancer affect fertility and your healthcare team should discuss the risk when you are diagnosed; pelvic radiotherapy will often cause infertility and early menopause.

The operation and what a stoma means: temporary or permanent

Which operation are you proposing, how much bowel comes out, and will it be keyhole or open?
Why: NICE NG151 recommends laparoscopic resection as an alternative to open resection for colon and for rectal cancer when both are suitable, and says to consider open surgery for locally advanced tumours or after previous abdominal or pelvic surgery.
If I need a stoma, will it be a colostomy or an ileostomy, and how long before it could be reversed?
Why: Bowel Cancer UK says a reversible stoma is formed to let the bowel heal and a permanent one is formed when the two ends cannot be joined; Cancer Research UK says the reversal usually happens after treatment finishes, so the timing is different for everyone.
Can I meet the stoma care nurse before the operation, and will the site be marked?
Why: Bowel Cancer UK says you meet the stoma care specialist nurse before the operation, they show you the equipment and may mark the spot on your abdomen; NICE NG151 says a trained stoma professional should provide information on care and on living with a stoma.
How many of these operations does this unit and this surgeon do each year?
Why: NICE NG151 says hospitals performing major resection for rectal cancer should perform at least 10 each year and individual surgeons at least 5; you are allowed to ask.
What are the risks of this operation for me, including an anastomotic leak, and what is the enhanced recovery plan?
Why: NICE NG151 lists anastomotic leak, pelvic abscess, bleeding, hernia and urinary retention among the complications of total mesorectal excision, and says to explain what recovery protocols such as enhanced recovery after surgery involve and their value.

Chemotherapy after surgery for stage 2 and stage 3, and how the benefit is worked out

What is the actual number: how much does chemotherapy after surgery change my chance of the cancer coming back?
Why: NICE NG151 asks teams to base the choice on the person's histopathology, performance status, personal preferences, any comorbidities and age, which is a conversation about absolute benefit rather than a rule.
Three months of CAPOX or six months of a single tablet: which are you recommending for me, and why?
Why: NICE NG151 offers capecitabine with oxaliplatin for 3 months for stage 3 disease, or if that is not suitable either FOLFOX for 3 to 6 months or a single-agent fluoropyrimidine such as capecitabine for 6 months.
My cancer is stage 2. Does the guideline recommend chemotherapy for me at all, and what are the risk features you are weighing?
Why: NICE NG151 makes an adjuvant recommendation for stage 3 colon and rectal cancer and makes none for stage 2, so this is a discussion about individual risk features rather than a guideline rule.
Has my tumour been tested for mismatch repair, and does that change whether chemotherapy helps me?
Why: Macmillan explains that tests on the bowel cancer cells look for mismatch repair and microsatellite instability, which affect treatment choices; ask what your result means for the decision in front of you.
Will you use a ctDNA blood test to help decide, and is that inside a trial?
Why: Circulating tumour DNA after surgery is being tested as a way to add or withhold chemotherapy (DYNAMIC and the other ctDNA-guided studies listed under this cancer); ask whether it is available to you and whether it changes the plan or only the information.
I already have tingling in my fingers. Should oxaliplatin be reduced or left out?
Why: NICE NG151 says to emphasise the importance of monitoring and managing side effects during non-surgical treatment to try to prevent permanent damage, giving prolonged sensory symptoms after platinum chemotherapy as the example that should prompt a dose reduction.
When does chemotherapy need to start after my operation, and what happens if I am still recovering?
Why: Recovery from bowel surgery and the start of chemotherapy have to be balanced; Macmillan explains that chemotherapy after surgery aims to reduce the risk of the cancer coming back, and your team can say how long a delay is acceptable.

Rectal cancer: surgery or chemoradiotherapy first, and watch and wait if the tumour disappears

Am I being offered short-course radiotherapy or long-course chemoradiotherapy, and what is the difference for me?
Why: NICE NG151 says to offer preoperative radiotherapy or chemoradiotherapy to people with rectal cancer that is cT1 to T2 with node involvement, or cT3 to T4 with any node status, and Macmillan explains what chemoradiation involves week by week.
If the tumour disappears on the scan and at examination, can I defer surgery and be watched instead?
Why: NICE NG151 says to inform people with a complete clinical and radiological response who wish to defer surgery that there is a risk of recurrence and there are no prognostic factors to guide selection, and to encourage participation in a clinical trial with data collected via a national registry.
If I choose watch and wait, exactly how often will I be examined and scanned, and what happens if it regrows?
Why: Deferral of surgery is a follow-up commitment, not the end of treatment; NICE NG151 asks for registry data collection, so ask which registry and which schedule you are being enrolled on.
How likely am I to need a permanent stoma with each of these orders of treatment?
Why: NICE NG151's own table for early rectal cancer compares transanal excision, endoscopic submucosal dissection and total mesorectal excision on exactly this point, including whether a stoma is needed and the effect on bowel and sexual function.
What will radiotherapy to the pelvis do to my bowel, bladder and sexual function in the long run?
Why: Macmillan says bowel side effects of pelvic radiotherapy may keep getting worse for a few weeks after treatment before improving, and that some do not completely go away; these are called late effects and should always be reported.

Which first treatment when the cancer has spread, by RAS, BRAF, mismatch repair and which side of the bowel

What are my RAS, BRAF and mismatch repair results, and which side of the bowel did the cancer start on?
Why: NICE NG151 says to test for RAS and BRAF V600E mutations in all people with metastatic colorectal cancer suitable for systemic anticancer treatment; the result decides whether the EGFR antibodies can be used at all.
Is the aim of this treatment to shrink the cancer enough for an operation, or to control it?
Why: Bowel Cancer UK separates treatment that aims to control advanced bowel cancer from treatment given to make surgery possible; the answer changes how much side effect is worth accepting.
If I am RAS wild-type, are you adding cetuximab or panitumumab, and what will the rash be like?
Why: NICE NG151 recommends cetuximab with FOLFOX or FOLFIRI for untreated RAS wild-type metastatic disease that also expresses EGFR (1.5.3), and panitumumab with the same chemotherapy for untreated RAS wild-type disease with no EGFR requirement (1.5.4); Macmillan says the acne-like rash on the face, neck, chest and back is most likely to start in the first 2 or 3 weeks.
What is the plan for a treatment break or maintenance once the cancer is under control?
Why: Bowel Cancer UK has a page on taking a break from treatment; long courses of oxaliplatin cause cumulative nerve damage, so when to stop and what to continue is a decision worth making in advance.
Should my primary tumour be removed even though it is not causing symptoms?
Why: NICE NG151 says to consider surgical resection of the primary tumour for people with incurable metastatic disease receiving systemic therapy who have an asymptomatic primary tumour, and gives a table of advantages and disadvantages to share.

Surgery or ablation when the cancer has spread to the liver

Has a liver surgeon looked at my scans, and is an operation possible now or after chemotherapy?
Why: NICE NG151 says to consider resection, either simultaneous or sequential, after discussion by a multidisciplinary team with expertise in resection of disease in all involved sites, and to consider perioperative systemic therapy if liver resection is suitable.
If surgery is not possible, is ablation or stereotactic radiotherapy an option for me?
Why: NICE NG151 says to consider chemotherapy with local ablative techniques for colorectal liver metastases unsuitable for resection after discussion by a specialist multidisciplinary team, and considers metastasectomy, ablation or stereotactic body radiation therapy for lung metastases.
Would a second opinion from a specialist liver unit change what is possible?
Why: Bowel Cancer UK has a page on getting a second opinion; liver units differ in what they will attempt, and NICE asks for a team with expertise in resection of disease in all involved sites.
What would recovery from a liver operation look like alongside my bowel surgery?
Why: NICE NG151 allows both simultaneous and sequential resection; the two orders have very different recoveries, so ask which is proposed and why.

Immunotherapy when the tumour is mismatch repair deficient

Is my tumour mismatch repair deficient or MSI-high, and what does that mean for immunotherapy?
Why: NICE NG151 recommends nivolumab with ipilimumab and pembrolizumab for untreated metastatic colorectal cancer with high microsatellite instability or mismatch repair deficiency, so the test result is the gateway to the treatment.
How long would immunotherapy continue, and what happens when it stops?
Why: NICE NG151 says pembrolizumab should be stopped after 2 years or earlier if disease progresses; ask what the plan is at that point.
Which immune side effects would make me ring you the same day?
Why: Immune reactions can start at any time and for months after the last dose; the red cards on this page list diarrhoea, breathlessness, yellow eyes, severe tiredness and new diabetes as same-day calls.
If my cancer is mismatch repair deficient and has not spread, is immunotherapy before surgery an option or a trial here?
Why: The record carries the trials of immunotherapy before surgery in mismatch repair deficient colon and rectal cancer (NICHE-2 and AZUR-1); NICE NG151 does not recommend it outside those settings, so ask whether a trial is open to you.

Later lines, when chemotherapy stops working

What is left after this line, and in which order would you use it?
Why: NICE NG151 lists trifluridine with tipiracil and bevacizumab after 2 systemic treatments, fruquintinib if that combination is not suitable, regorafenib and trifluridine with tipiracil alone; knowing the sequence in advance makes each decision less sudden.
How will we know whether this line is working, and when would we stop?
Why: Bowel Cancer UK has a page on taking a break from treatment and on treating advanced bowel cancer; agreeing the scan interval and the stopping rule in advance protects the time you have.
Is there a trial for me at this point, and should I be referred before I am less well?
Why: The NHS says clinical trials test new treatments and that you can ask your doctor whether one is suitable; trials usually need you to be well enough to take part, so the referral is easier earlier than later.
If I decide to stop anti-cancer treatment, what care continues?
Why: Bowel Cancer UK says palliative care may start when you are diagnosed with advanced bowel cancer or after treatment has stopped working, and that its aim is to improve quality of life.

Lynch syndrome testing, and what it means for your family

Has my tumour been tested for mismatch repair, and has MLH1 promoter methylation been checked before genetic testing?
Why: Mismatch repair loss can be sporadic rather than inherited; the methylation test separates the two, and Bowel Cancer UK says testing for Lynch syndrome should be offered at diagnosis because the condition can affect treatment options.
If I have Lynch syndrome, who in my family should be tested, and who arranges it?
Why: Bowel Cancer UK says Lynch syndrome runs in families, so if a person has it there is a 50 percent chance their children, brothers and sisters also have it, and family members of patients who test positive should be offered the same genetic tests.
What surveillance would I have with Lynch syndrome, and how often?
Why: Bowel Cancer UK says people with Lynch syndrome should be in a surveillance programme with regular colonoscopy every 18 months to two years, which can reduce the chance of dying from bowel cancer by as much as 72 percent.
Should I be taking aspirin, and at what dose?
Why: NICE NG151 says to consider aspirin, taken daily and for a period of more than 2 years, to reduce the risk of colorectal cancer in people with Lynch syndrome, and notes that in January 2020 this was an off-label use with a NICE patient decision aid to support the discussion.
Where does the genetic result go, and what do I need to tell an insurer or employer?
Why: The NHS explains how genetic and genomic testing works and who sees the result; Bowel Cancer UK's work and money page sets out the Equality Act protections at work.

A clinical trial or standard treatment

Is there a trial open to me now, here or at another hospital, and what would it involve?
Why: Bowel Cancer UK says some trials test new treatments and others test new ways of using existing treatments, and that you should ask your healthcare team whether you are suitable for any current trials in your area; the NHS says you can ask your doctor or a patient organisation about trials you may be eligible to join.
If I join, can I leave, and would standard treatment still be available afterwards?
Why: The NHS says you can choose to leave at any point without giving a reason and without it affecting the care you receive.
What extra visits, scans or biopsies would the trial need, and are travel costs covered?
Why: Bowel Cancer UK's page on trials and its work, money and travel page together cover the practical cost of taking part, which is a fair part of the decision.

When to talk about palliative care

Can I be referred to the palliative care team now, alongside my treatment, rather than later?
Why: Bowel Cancer UK says palliative care may start when you are diagnosed with advanced bowel cancer, and a randomised trial (Temel 2010) found early palliative care alongside cancer treatment improved quality of life and mood.
Who do I ring out of hours when pain or sickness gets out of control at home?
Why: Marie Curie explains what palliative care covers and who provides it; the NHS says the symptom control or palliative care team helps you manage symptoms and supports your loved ones.
Where would I prefer to be cared for, and how do I record that?
Why: Bowel Cancer UK says you can choose where you would prefer to receive care and where you wish to die, and that your choices can be documented by your healthcare team and kept with your medical records.
What support is there for my family and for any children at home?
Why: Bowel Cancer UK says end of life care also includes support and practical help for your family and carers, and Macmillan has information for people supporting someone with cancer.

Surgeon appointment

Draw me what you are taking out and what you are joining back together.
Why: Macmillan's pages on surgery for colon and rectal cancer describe the resections in words; a drawing turns an anterior resection or a right hemicolectomy into something you can repeat to your family.
What is my risk of a leak at the join, and what would the first sign be?
Why: NICE NG151 lists anastomotic leak among the complications of total mesorectal excision; knowing the first sign shortens the time to treatment.
How long in hospital, how long before I drive, and how long before I lift anything?
Why: The NHS says it usually takes around 8 weeks to recover from a colostomy, to avoid strenuous activity or heavy lifting for 8 weeks while the tummy muscles heal, and to wait until you have recovered before driving.
Will you be taking at least 12 lymph nodes, and when will I get the pathology report?
Why: NICE NG151's table says removing lymph nodes gives more accurate staging and a better chance of cure; the pathology report is what the chemotherapy decision is made on.

Oncologist appointment

What is this chemotherapy for: cure, control or symptoms, and over what period?
Why: NICE NG151 says to give people information on all treatment options including the potential benefits, risks, side effects and implications, so that aim should be said out loud.
Have I had the DPD blood test before fluorouracil or capecitabine?
Why: Macmillan says you should have a blood test before capecitabine to check for gene changes affecting DPD, because low DPD raises the risk of serious or life-threatening side effects.
Which side effects should make me ring the 24-hour line, and which can wait?
Why: Macmillan's drug pages set the thresholds: a temperature the team specifies, diarrhoea that anti-diarrhoea drugs have not settled within 24 hours, unexplained bruising or bleeding, and any skin blistering.
How will we measure whether it is working, and when is the first scan?
Why: Agreeing the scan interval in advance turns a wait into a plan; NICE NG151 asks for information on why a treatment plan might need to change during care.
What is my follow-up after treatment, and does it include CEA blood tests and CT scans?
Why: NICE NG151 says to offer follow-up for detection of local recurrence and distant metastases for the first 3 years, including serum carcinoembryonic antigen and CT of the chest, abdomen and pelvis.

Stoma nurse appointment

Show me how to change the bag, and watch me do it once before I go home.
Why: Cancer Research UK says the stoma nurse teaches you to manage the stoma while you are in hospital and that it may help for a close family member to be there too.
One-piece or two-piece, drainable or closed: which suits my stoma and my day?
Why: The NHS describes the two main types of bag and says how often you change it varies between people, so you will soon find what works for you.
How do I order supplies on prescription, and do I get free prescriptions?
Why: The NHS says that with a permanent colostomy your GP gives you a prescription to order stoma bags for free on the NHS, and that with a temporary colostomy you may need to pay; Colostomy UK explains how to order supplies.
What is a blockage, what does it feel like, and who do I ring?
Why: The NHS says if less poo is coming out than usual or the stoma stops producing poo you may have a blockage, that a blockage is serious because the bowel could burst, and to speak to your stoma nurse urgently with cramps, sickness or swelling around the stoma.
Which foods block an ileostomy, and how much should I be drinking?
Why: Cancer Research UK says celery, tough fruit skins, nuts and mushrooms may cause a blockage with an ileostomy, that you lose more fluid through an ileostomy, and that your wee should be a pale straw colour through the day.
What about sore skin, a hernia around the stoma, swimming, and clothes?
Why: The NHS lists hernia, retraction, prolapse and skin damage as stoma problems the nurse can help with; Cancer Research UK says all sorts of physical activities are possible, including swimming.
Can I have a RADAR key and a Just Can't Wait card?
Why: Macmillan points to the Bladder and Bowel Community's Just Can't Wait card for quicker access to a toilet; Colostomy UK explains the RADAR key scheme for accessible toilets.

Genomics appointment

Which test is this: a test on the tumour, or a blood test for an inherited change?
Why: The NHS explains the difference between genetic and genomic testing and what each can show; Macmillan explains the tests done on bowel cancer cells.
What are the possible results, including one that is uncertain, and what would each mean?
Why: A variant of uncertain significance is a common outcome and changes nothing on its own; asking in advance prevents a frightening letter later.
How long will the result take, and will it change my treatment or only my family's screening?
Why: Bowel Cancer UK says Lynch syndrome testing should be offered at diagnosis because the condition can affect treatment options, and that family members should then be offered the same tests.
If the result is positive, how are my relatives contacted and supported?
Why: Bowel Cancer UK calls this cascade testing and says finding the undiagnosed relatives is how life-saving surveillance reaches them.

Palliative care appointment

What can you help with that my cancer team cannot?
Why: Marie Curie explains that palliative care covers symptom control, emotional, spiritual and practical support, for you and for the people close to you, at any stage of an illness.
Can we write down what matters most to me, and who should be asked if I cannot speak?
Why: Bowel Cancer UK says putting plans in place can be documented by your healthcare team and kept with your medical records so your loved ones know how you would like to be cared for.
What is available at home, in a hospice and in hospital, and how quickly?
Why: Bowel Cancer UK says you may be able to have care at home, in a hospice, in hospital or in a care home, and that hospices offer day visits as well as stays.
What help is there with money, benefits and equipment at home?
Why: Bowel Cancer UK's work, money and travel page lists the benefits that may apply; Macmillan's welfare rights advisers work out what you can claim.

For carers

What should I watch for at home, and what is the number I ring first?
Why: Bowel Cancer UK says one of the best ways to help is to learn about the symptoms and who to ask for help; every red card here starts with the hospital's 24-hour number.
Can I come to appointments and write down what is said?
Why: Bowel Cancer UK says some people find it useful to take someone with them to medical appointments to help take notes and remind them what was discussed.
Am I entitled to a carer's assessment and to carer's benefits?
Why: The NHS says a carer's assessment is free, is for anyone over 18 looking after another adult, and is separate from the assessment of the person you care for; it also lists the benefits carers may be able to claim.
Who supports me, and what do I do when I cannot cope?
Why: Bowel Cancer UK has a page on taking care of yourself as a carer and a peer support line; Maggie's centres are open to family and friends as well as patients.

Decisions and supportColorectal cancer

Decisions and support

Red cards

Questions to ask

Questions to ask your oncologist about Colorectal cancer

Newly diagnosed

The operation and what a stoma means: temporary or permanent

Chemotherapy after surgery for stage 2 and stage 3, and how the benefit is worked out

Rectal cancer: surgery or chemoradiotherapy first, and watch and wait if the tumour disappears

Which first treatment when the cancer has spread, by RAS, BRAF, mismatch repair and which side of the bowel

Surgery or ablation when the cancer has spread to the liver

Immunotherapy when the tumour is mismatch repair deficient

Later lines, when chemotherapy stops working

Lynch syndrome testing, and what it means for your family

A clinical trial or standard treatment

When to talk about palliative care

Surgeon appointment

Oncologist appointment

Stoma nurse appointment

Genomics appointment

Palliative care appointment

For carers

Decisions and supportColorectal cancer

Decisions and support

Red cards

Questions to ask

Questions to ask your oncologist about Colorectal cancer

Newly diagnosed

The operation and what a stoma means: temporary or permanent

Chemotherapy after surgery for stage 2 and stage 3, and how the benefit is worked out

Rectal cancer: surgery or chemoradiotherapy first, and watch and wait if the tumour disappears

Which first treatment when the cancer has spread, by RAS, BRAF, mismatch repair and which side of the bowel

Surgery or ablation when the cancer has spread to the liver

Immunotherapy when the tumour is mismatch repair deficient

Later lines, when chemotherapy stops working

Lynch syndrome testing, and what it means for your family

A clinical trial or standard treatment

When to talk about palliative care

Surgeon appointment

Oncologist appointment

Stoma nurse appointment

Genomics appointment

Palliative care appointment

For carers