Triple-negative breast cancer (TNBC) · Decisions and support

Newly diagnosed

What exactly makes my cancer triple-negative, and was HER2 scored as 0, 1+ or 2+?
Why: Breast Cancer Now explains that triple negative means oestrogen receptor negative, progesterone receptor negative and HER2-negative; a HER2 score of 1+ or 2+ without amplification (HER2-low) can open trastuzumab deruxtecan later, so the exact score matters.
Who is my breast care nurse (my key worker), and what is the 24-hour number for the treatment team?
Why: NICE NG101 says everyone with breast cancer should have a named clinical nurse specialist; the NHS says this nurse is your main point of contact during and after treatment.
What is my clinical stage and grade, which scans were used, and do I need a CT, MRI or PET scan before treatment starts?
Why: The NHS lists CT, MRI or PET scans and blood tests as possible next steps after a breast cancer diagnosis; the stage decides whether treatment starts with chemotherapy or with surgery.
Have I been referred for genetic testing for BRCA1, BRCA2 and PALB2, even though I have no family history?
Why: Breast Cancer Now says anyone diagnosed with triple negative breast cancer under 60 should be offered a referral to discuss genetic testing regardless of family history; NICE NG101 asks for BRCA testing under 50. A result changes surgery options, opens olaparib and matters for relatives.
Is fertility preservation relevant for me, and do we have time before the first chemotherapy dose?
Why: Cancer Research UK says egg collection takes about 2 to 3 weeks and that national guidelines say your doctor should discuss fertility at diagnosis; Macmillan says some fertility decisions have to be made before treatment starts.
Was the tumour-infiltrating lymphocyte (TIL) score reported, and does it change what you recommend?
Why: TIL-rich small tumours have very good outcomes and TIL status is being used to test less treatment in trials; the cancer page records this under stage I.
Can I speak to a specialist in triple-negative breast cancer, or get a second opinion, without delaying treatment?
Why: The Triple Negative Breast Cancer Foundation advises choosing a team experienced in this subtype and considering a second opinion; the NHS says you can ask your GP or consultant to refer you.

Chemotherapy before or after surgery

Why are you recommending chemotherapy before surgery rather than after, and what would change if I preferred to have surgery first?
Why: Macmillan says people with triple negative breast cancer are more likely to have chemotherapy before surgery; Cancer Research UK says the aim is to shrink the cancer so an operation, or a smaller operation, is possible, and NICE says the response can guide the treatment given afterwards.
Will my regimen contain a platinum, a taxane and an anthracycline, and what does the platinum add?
Why: NICE NG101 (2025) says where neoadjuvant chemotherapy is indicated for triple-negative breast cancer, offer a regimen that contains a platinum, a taxane and an anthracycline, and quotes 85 rather than 81 out of 100 alive at 3 years with a platinum, at the cost of more neutropenic sepsis, low blood counts and anaemia.
How will you check the cancer is responding during chemotherapy, and what happens if it is not?
Why: The response seen on examination and scans during treatment is one reason to give chemotherapy first; Cancer Research UK explains that shrinking the cancer may allow breast-conserving surgery instead of a mastectomy.
How many weeks will the chemotherapy take, and when would surgery be?
Why: Macmillan describes the KEYNOTE-522 regimen as two 12-week phases before surgery and pembrolizumab alone afterwards, starting 30 to 60 days after surgery.

Adding pembrolizumab before surgery: what PD-L1 means here

Am I eligible for pembrolizumab with my chemotherapy, and if not, what rules me out?
Why: NICE TA851 recommends pembrolizumab with chemotherapy before surgery, then alone after surgery, for triple-negative early breast cancer at high risk of recurrence or locally advanced disease; the KEYNOTE-522 trial treated stage II and III disease.
Do I need a PD-L1 test before pembrolizumab at this stage?
Why: In KEYNOTE-522 the benefit was seen whatever the PD-L1 result and the NICE recommendation does not depend on a PD-L1 score; the combined positive score (CPS) of 10 or more only decides pembrolizumab for cancer that has spread (NICE TA801).
Which immune-related side effects should I watch for, which can be permanent, and what is on the alert card?
Why: Macmillan says pembrolizumab can make the immune system too active, that side effects can start during or after treatment and that glands making hormones can be permanently affected; Breast Cancer Now says you should carry an alert card listing the symptoms to report.
Will pembrolizumab continue after surgery whatever the pathology shows, and is there a trial testing whether it can stop after a complete response?
Why: Macmillan says pembrolizumab continues every 3 or 6 weeks for several months after surgery; OptimICE-pCR is testing whether people with a complete response can stop.

Residual disease after chemotherapy: capecitabine or olaparib

Did I have a pathological complete response, and if not, what was my residual cancer burden (RCB) class?
Why: The pathology report after chemotherapy is the strongest guide to what comes next: in the Symmans series 10-year relapse-free survival for triple-negative disease was 86% after a complete response, 81% for RCB-I, 55% for RCB-II and 23% for RCB-III.
If I carry a BRCA1 or BRCA2 variant and have residual disease, will I be offered a year of olaparib on the NHS?
Why: NICE TA886 recommends olaparib after neoadjuvant or adjuvant chemotherapy for HER2-negative high-risk early breast cancer in adults with germline BRCA1 or 2 mutations; OlympiA showed longer survival.
If I do not carry a BRCA variant, is capecitabine an option for me, for how long, and what are the side effects?
Why: In CREATE-X, capecitabine after chemotherapy improved disease-free and overall survival in people with residual disease, most clearly in triple-negative disease; hand-foot syndrome affected 73% of those taking it.
Is there a trial for residual disease, for example one guided by circulating tumour DNA?
Why: The cancer record lists residual disease after chemo-immunotherapy as an open problem with no approved escalation beyond capecitabine or olaparib; trials are where the next answer will come from.

Mastectomy or breast-conserving surgery, and when to reconstruct

Am I suitable for breast-conserving surgery, and is it as safe for me as a mastectomy?
Why: Macmillan says having breast-conserving surgery and radiotherapy is usually as effective as having a mastectomy; the choice depends on the size and position of the cancer and your preference.
If I have a mastectomy, can I have reconstruction at the same time even if I will need radiotherapy, and what are the trade-offs of immediate and delayed reconstruction?
Why: NICE NG101 says offer both immediate and delayed reconstruction, and offer immediate reconstruction to women advised to have a mastectomy including those who may need radiotherapy; its table lists the trade-offs, including that implant reconstructions may be more affected by radiotherapy.
Which lymph node operation will I have, and what does it mean for lymphoedema risk?
Why: Macmillan says a sentinel lymph node biopsy removes 1 to 3 nodes to reduce the risk of arm swelling and stiffness, and that removing all the armpit nodes increases the risk of lymphoedema.
What will recovery look like, and when can I drive, lift and return to work?
Why: The NHS says most people get back to usual activities in around 3 weeks after a mastectomy, wounds take about 6 weeks to heal, and heavy lifting should wait 2 to 3 weeks.
If a BRCA variant is found, would you advise a different operation, and how much time do I have to decide?
Why: Macmillan says people with a BRCA variant may consider risk-reducing surgery; NICE CG164 says risk-reducing mastectomy should be managed by a multidisciplinary team with genetic counselling first.

Radiotherapy after surgery: which schedule and where

Do I need radiotherapy, and to which areas: the breast or chest wall, the armpit, above the collarbone?
Why: NICE NG101 offers radiotherapy after breast-conserving surgery, and after mastectomy for node-positive disease or involved margins, including after neoadjuvant chemotherapy where nodes were involved before treatment.
Will I have 5 sessions over 1 week or 15 over 3 weeks, and why that one for me?
Why: NICE NG101 says offer 26 Gy in 5 fractions over 1 week when the lymph nodes are not being treated, and 40 Gy in 15 fractions when they are or after implant reconstruction; FAST-Forward showed the 1-week schedule matched 3 weeks for control at 5 years.
Will I need a boost to where the tumour was, and will I be asked to hold my breath to protect my heart?
Why: NICE offers an external beam boost to the tumour bed for people at high risk of local recurrence; Cancer Research UK describes deep inspiration breath hold for left-sided treatment.
Which skin changes should I expect and when do they settle?
Why: Cancer Research UK says skin can redden, darken or break down towards the end of treatment and usually starts to improve 3 to 4 weeks afterwards.

Fertility preservation before chemotherapy

How likely is this chemotherapy to stop my periods, temporarily or permanently, at my age?
Why: Cancer Research UK says some chemotherapy drugs permanently stop the ovaries producing eggs and that the closer you are to the natural age of menopause the less likely periods are to return.
Can I be referred to a fertility clinic this week, and is egg or embryo freezing funded for me on the NHS?
Why: Cancer Research UK says IVF and egg freezing are available on the NHS for some people but not in all parts of the country, and that collection takes about 2 to 3 weeks.
What contraception should I use during treatment, and for how long afterwards?
Why: Macmillan says contraception is advised because some treatments can damage eggs and affect a baby if a pregnancy starts during treatment.

Genetic testing and what a BRCA result means for your family

Which genes will be tested, on blood or on the tumour, and how long will the result take?
Why: The NHS says genetic testing is free when a hospital specialist refers you; Breast Cancer Now says results usually take 1 to 3 months and that a genetic counsellor helps you think through what the result means.
If a variant is found, which of my relatives could be tested, and who tells them?
Why: Macmillan says each child of someone with a BRCA variant has a 1 in 2 chance of inheriting it; Breast Cancer Now says the genetics team can then offer predictive testing to family members.
What does a variant of uncertain significance mean, and what happens then?
Why: Breast Cancer Now explains that a VUS is a change in a known gene whose effect on risk is not yet known, and that the genetics team will explain how to interpret it.
Does the result change my own treatment now: surgery, olaparib, or screening of the other breast and ovaries?
Why: NICE TA886 funds olaparib only for germline BRCA carriers; Macmillan lists risk-reducing surgery and screening among the options a carrier may discuss.

First treatment for metastatic disease: the tests that decide

What is my PD-L1 combined positive score on the most recent biopsy, and has a fresh biopsy been taken to re-check the receptors?
Why: NICE TA801 funds pembrolizumab with chemotherapy only where CPS is 10 or more; receptor status can change between the first cancer and a recurrence.
Is my tumour HER2-low, and do I carry a BRCA variant? Which of these opens which treatment?
Why: HER2-low status opens trastuzumab deruxtecan after chemotherapy; a germline BRCA variant opens a PARP inhibitor. Both are on the cancer record's biomarker list.
Which first treatment do you recommend for me and why: an antibody-drug conjugate, immunotherapy with chemotherapy, a PARP inhibitor, or chemotherapy alone? Which of these is funded on the NHS today?
Why: The cancer record lists sacituzumab govitecan and datopotamab deruxtecan as first-line options approved in 2026 alongside pembrolizumab-chemotherapy for CPS 10 or more; NHS funding follows NICE appraisals, so ask what applies where you are treated.
Can the palliative care or symptom control team be involved from the start, alongside treatment?
Why: The NHS says people with secondary breast cancer are referred to a symptom control or palliative care team; a randomised trial found early palliative care improved quality of life alongside cancer treatment.
Should I think about a trial before starting first-line treatment?
Why: The Triple Negative Breast Cancer Foundation says it is often advisable to think about a trial before beginning first-line therapy for metastatic disease, because eligibility narrows with each line.

Metastatic, first line, PD-L1 CPS ≥10

How much does adding pembrolizumab to chemotherapy add for someone with a CPS of 10 or more, and what does it add in side effects?
Why: In KEYNOTE-355 median overall survival was 23.0 months with pembrolizumab and chemotherapy against 16.1 months with chemotherapy alone in the CPS 10 or more group; grade 3 or worse events were similar in both arms.
Is sacituzumab govitecan with pembrolizumab an option for me here, and is it funded?
Why: The cancer record lists sacituzumab govitecan plus pembrolizumab (ASCENT-04) as an approved first-line option for CPS 10 or more in 2026; ask what the NHS funds where you are treated.

Metastatic, first line, PD-L1 negative or PD-1 ineligible

Between datopotamab deruxtecan, sacituzumab govitecan, a PARP inhibitor and chemotherapy, which do you recommend for me and what decides it?
Why: The record lists both TROP2 antibody-drug conjugates as first-line options in PD-L1-negative disease, with different side-effect profiles, and a PARP inhibitor where there is a germline BRCA variant.

Metastatic, later lines

If one antibody-drug conjugate stops working, what is the plan for the next, given that they may share resistance?
Why: The cancer record lists ADC sequencing as an open problem: a second ADC with the same payload class often works less well.
Is trastuzumab deruxtecan an option for me if my tumour is HER2-low, and what lung symptoms must I report?
Why: DESTINY-Breast04 included HER2-low triple-negative disease; in a pooled analysis 15.4% of people on trastuzumab deruxtecan developed interstitial lung disease, most within the first year.

Antibody-drug conjugates: what to expect and the side effects to report

How is the drug given, how often, and what blood tests will I have before each dose?
Why: Breast Cancer Now says a sacituzumab govitecan cycle lasts 21 days with treatment on days 1 and 8, and that regular blood tests may lead to a delayed or reduced dose.
Will I be given anti-diarrhoea medicine to keep at home, and at what point do I ring the 24-hour line?
Why: Macmillan says to contact the hospital straight away on the 24-hour number if you have diarrhoea 4 or more times in a day, diarrhoea at night, or the anti-diarrhoea drugs do not work within 24 hours; Breast Cancer Now uses 3 or more times in 24 hours.
Will I need growth factor injections to protect my white cells, and what temperature means I ring?
Why: Breast Cancer Now says growth factor injections are sometimes recommended with sacituzumab govitecan; Macmillan says to ring straight away for a temperature above 37.5 C or below 36 C, or feeling unwell even with a normal temperature.
For datopotamab deruxtecan or trastuzumab deruxtecan: what eye care and what lung symptoms should I know about?
Why: The Datroway label requires eye examinations and lists keratitis; the Enhertu label carries a boxed warning for interstitial lung disease and says to report cough, breathlessness or fever immediately (see the red cards).
Will I lose my hair, and is scalp cooling possible with this drug?
Why: Breast Cancer Now and Macmillan say sacituzumab govitecan may cause hair thinning or loss that is almost always temporary; ask whether your unit offers scalp cooling with it.

Brain metastases: radiosurgery, whole-brain radiotherapy, surgery and drugs

How many brain metastases are there, how large, and is radiosurgery an option rather than whole-brain radiotherapy?
Why: In a randomised trial of people with 1 to 3 brain metastases, radiosurgery alone caused less cognitive decline at 3 months than radiosurgery with whole-brain radiotherapy, with no difference in survival.
Would surgery help for a single large metastasis, and will my drug treatment continue?
Why: The cancer record lists brain metastases in up to 30 to 45% of metastatic TNBC as an open problem, with ADC activity in the brain emerging but unproven; ask what the plan is for the rest of the body while the brain is treated.
What symptoms should my family watch for, and who do we ring?
Why: New headache with vomiting, a seizure, new confusion or weakness are emergencies on the site's general red cards; ask your team how they want these reported.

A clinical trial or standard treatment

Is there a trial I could join now, what is the comparison arm, and is a placebo involved?
Why: The NHS says a placebo is used only where no proven standard treatment exists; in KEYNOTE-522 the control arm had chemotherapy plus placebo, never placebo alone.
What extra visits, tests and travel would the trial involve, and are travel costs paid?
Why: These are among the questions the NHS clinical trials page suggests asking before joining; some trials cover travel expenses.
If I join and then want to stop, what happens to my standard treatment?
Why: The NHS says you can leave a trial at any point without giving a reason and without it affecting your care.

Surgeon appointment

Which operation do you recommend, breast-conserving surgery or mastectomy, and what makes one better for me?
Why: Macmillan says you and your surgeon decide together and you may be asked to choose; a mastectomy is advised when the cancer is large compared with the breast or there are several areas of cancer.
If I want reconstruction, can I see an oncoplastic or plastic surgeon before the operation, and what are my options if I need radiotherapy?
Why: Macmillan says reconstruction is specialised surgery by a plastic or oncoplastic surgeon and that you may be able to talk to one before your operation; NICE says immediate reconstruction should be offered even to those who may need radiotherapy.
Will the margins and the lymph nodes be checked during the operation, and could I need a second operation?
Why: Macmillan says a pathologist checks the margin after breast-conserving surgery and another operation is needed if cancer is at the edge; in some hospitals sentinel nodes are checked during the operation.
Can I do anything before surgery to recover faster?
Why: Cancer Research UK describes prehabilitation, exercise, nutrition and stopping smoking before treatment; the NHS asks people not to smoke for a few weeks before a mastectomy.

Oncologist appointment

What is the aim of the treatment you are proposing, cure or control, and for how long would I have it?
Why: Macmillan's questions page says your team should explain the aim, benefits, disadvantages and alternatives of any treatment.
Which side effects are most likely for me, which are reversible, and what is the 24-hour number?
Why: Macmillan says to keep the hospital team's 24-hour helpline number with you at all times and to call sooner rather than later.
How will we know the treatment is working, and what would we do if it stops working?
Why: Knowing the plan for the next line helps you weigh a trial against standard treatment.
Will my heart be checked before and after anthracycline chemotherapy?
Why: Doxorubicin and epirubicin carry a labelled warning for heart muscle damage, including late onset; the site's red cards quote it.

Genetics appointment

Which genes are being tested, what are the possible results, and how will I get them?
Why: Breast Cancer Now says results usually take 1 to 3 months, by clinic visit, telephone or post, and that a positive result lets the team offer predictive testing to relatives.
If I carry a variant, what are my options for the other breast and my ovaries, and when would we discuss them?
Why: Macmillan lists risk-reducing surgery and screening as options for BRCA carriers; NICE CG164 says the effects of early menopause should be discussed before any risk-reducing ovary removal.
Could the result affect insurance or my relatives in ways I should know about?
Why: The NHS says a test can reveal information about relatives that you or they did not know, and a genetic counsellor can talk this through before you decide.

Radiotherapy planning appointment

How many sessions, over how many weeks, and to which areas?
Why: Macmillan says breast radiotherapy is usually 5 sessions over 1 week or 15 over 3 weeks; NICE NG101 sets out which schedule applies.
Will I need breath-hold training, and what happens if I have an implant reconstruction?
Why: Cancer Research UK describes deep inspiration breath hold for left-sided radiotherapy; NICE says 40 Gy in 15 fractions is considered after implant-based reconstruction.
How should I care for my skin, and when do I call about a skin reaction?
Why: Cancer Research UK says skin can become sore or break down towards the end of treatment and that creams and dressings are given; tell the radiographers about any skin change.

Palliative and supportive care appointment

What can be done about my pain, breathlessness, tiredness and sleep, and who adjusts the medicines between visits?
Why: The NHS says the palliative care team helps manage symptoms and can help you and your loved ones get other support; community and district nurses share the work.
What should my family watch for, and exactly who do we ring at night or at the weekend?
Why: Macmillan's sepsis page gives the 999 signs; a written plan with numbers is what carers ask for.
What help is available at home or for money and work, and how do we ask for a carer's assessment?
Why: Macmillan money advisers give free advice on benefits; the NHS says any carer over 18 can ask the council for a free carer's assessment.
Can we talk about what matters most to me and record my wishes for care if I become more unwell?
Why: Advance care planning is part of palliative care; the NHS says the team can help you feel more comfortable and get any other support you need.

For carers

How can I be included in appointments and plans, and can I have copies of the treatment plan and the medicine list?
Why: Macmillan says to tell the healthcare team you are a carer so you can be part of the plans for going home.
What are the signs of neutropenic sepsis, an immune-related reaction or a lung reaction, and what should I do for each?
Why: The NHS and Macmillan give the wording: temperature over 37.5 C or below 36 C, shivering, breathing very fast, confusion, mottled skin, no urine in a day; the site's red cards quote them.
What support is there for me: a carer's assessment, Carer's Allowance, a break, or someone to talk to?
Why: The NHS says a carer's assessment is free for anyone over 18 and that Carer's Allowance is £86.45 a week for 35 or more hours of care; Macmillan's support line is open to carers.

Decisions and supportTriple-negative breast cancer (TNBC)

Decisions and support

Red cards

Questions to ask

Questions to ask your oncologist about Triple-negative breast cancer

Newly diagnosed

Chemotherapy before or after surgery

Adding pembrolizumab before surgery: what PD-L1 means here

Residual disease after chemotherapy: capecitabine or olaparib

Mastectomy or breast-conserving surgery, and when to reconstruct

Radiotherapy after surgery: which schedule and where

Fertility preservation before chemotherapy

Genetic testing and what a BRCA result means for your family

First treatment for metastatic disease: the tests that decide

Metastatic, first line, PD-L1 CPS ≥10

Metastatic, first line, PD-L1 negative or PD-1 ineligible

Metastatic, later lines

Antibody-drug conjugates: what to expect and the side effects to report

Brain metastases: radiosurgery, whole-brain radiotherapy, surgery and drugs

A clinical trial or standard treatment

Surgeon appointment

Oncologist appointment

Genetics appointment

Radiotherapy planning appointment

Palliative and supportive care appointment

For carers

Decisions and supportTriple-negative breast cancer (TNBC)

Decisions and support

Red cards

Questions to ask

Questions to ask your oncologist about Triple-negative breast cancer

Newly diagnosed

Chemotherapy before or after surgery

Adding pembrolizumab before surgery: what PD-L1 means here

Residual disease after chemotherapy: capecitabine or olaparib

Mastectomy or breast-conserving surgery, and when to reconstruct

Radiotherapy after surgery: which schedule and where

Fertility preservation before chemotherapy

Genetic testing and what a BRCA result means for your family

First treatment for metastatic disease: the tests that decide

Metastatic, first line, PD-L1 CPS ≥10

Metastatic, first line, PD-L1 negative or PD-1 ineligible

Metastatic, later lines

Antibody-drug conjugates: what to expect and the side effects to report

Brain metastases: radiosurgery, whole-brain radiotherapy, surgery and drugs

A clinical trial or standard treatment

Surgeon appointment

Oncologist appointment

Genetics appointment

Radiotherapy planning appointment

Palliative and supportive care appointment

For carers