Living with itBreast cancer (all types)

Back to the Breast cancer hub →59 questions · 4 red cards · 1 decision aid

The decisions you may face, the aids that walk through them, the warnings on record, the first sixty days and the questions to ask.

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The first 60 days →Appointment prep sheet →Side effects →Help with costs →

Decisions you may face

8 with more than one option · full decision page →

One section per setting: the options named, what each is for, the trials behind them, the recorded trade-offs and the questions to ask.

Early disease, all types Ductal carcinoma in situ Every invasive breast cancer, at diagnosis Staging and prognostic assessment4 At recurrence Surgery to the breast: conservation or mastectomy Margins and further surgery Staging the axilla when the nodes look clear A positive sentinel node The axilla after chemotherapy given before surgery Radiotherapy after breast-conserving surgery Dose and schedule Treating less than the whole breast Who can leave radiotherapy out Radiotherapy after mastectomy, and to the nodes Reconstruction Drugs before or after surgery Breast-conserving surgery or mastectomy3 Reconstruction surgery, delayed reconstruction, or neither2 Surgery to the armpit, and the lymphoedema risk that lasts for life3 Fertility and early menopause, decided before treatment starts3 Body image, sensation and sex2 Hair, and whether scalp cooling is worth it3 Survivorship: follow-up, and which symptom is worth a phone call3

Decision aids

All decision aids →

Answer a few questions from a report and read the guideline statement that applies, quoted word for word with its source. Educational aids to prepare for an appointment, not advice.

Surgery choice aid

Red cards

From the labels and guidelines behind the standard of care. Your team's thresholds win.

Emergency services now
A seizure, sudden severe headache, new weakness or numbness down one side, or new confusion
Breast Cancer Now lists headache, sickness and vomiting especially on waking, weakness or numbness down one side of the body, unsteadiness or loss of balance, seizures, difficulty with speech, vision problems, and changes in behaviour, mood or memory among the signs that breast cancer may have spread to the brain. A seizure, a sudden severe headache or new one-sided weakness is 999 whatever the cause.
Bone metastases and skeletal-related events Brain metastases (intracranial disease)Survivorship care and late-effects surveillance source
Emergency services now
Cellulitis with a very high temperature, fast heartbeat, confusion, dizziness or purple patches on the skin
The NHS says to call 999 or go to A and E if you have cellulitis with a very high temperature or you feel hot, cold or shivery, a fast heartbeat or fast breathing, purple patches on the skin which may be less obvious on brown or black skin, feeling dizzy or faint, confusion or disorientation, cold, clammy or pale skin, or unresponsiveness. These are symptoms of serious complications, which can be life threatening.
Compression, decongestive therapy and exercise for lymphoedema Lymphadenectomy (lymph node dissection)Lymphoedema after breast cancer treatment source
Emergency services now
Signs of sepsis
Breathing very fast; confused, slurred speech or not making sense; blue, pale or blotchy skin, lips or tongue; a very high or very low temperature, feeling hot or cold to the touch, or shivery; a rash that does not fade when pressed: the NHS says call 999 or go to A and E, and do not drive yourself, ask someone to drive you or call 999.
Febrile neutropenia Neutropenic sepsis: the temperature rule and the 999 signs Seroma after breast surgery source
Emergency services now
New weakness or numbness in the legs, unsteadiness, or loss of control of the bladder or bowel
NICE NG234 says to immediately contact the metastatic spinal cord compression coordinator if a person with a past or current diagnosis of cancer presents with bladder or bowel dysfunction, gait disturbance or difficulty walking, limb weakness, neurological signs of spinal cord or cauda equina compression, numbness, paraesthesia or sensory loss, or radicular pain, and to treat this as an oncological emergency. If you cannot reach anyone, go to A and E and say you have breast cancer and symptoms of spinal cord compression.
Bone metastases and skeletal-related events Metastatic spinal cord compression (MSCC)source

See all on the product pages:Bone metastases and skeletal-related events Brain metastases (intracranial disease)Compression, decongestive therapy and exercise for lymphoedema Febrile neutropenia Lymphadenectomy (lymph node dissection)Lymphoedema after breast cancer treatment Metastatic spinal cord compression (MSCC)Neutropenic sepsis: the temperature rule and the 999 signs Seroma after breast surgery Survivorship care and late-effects surveillance·Printable cards in the navigator

Questions to ask

Bring to your appointment

Questions to ask your oncologist about Breast cancer

Curated set · 59 questions

Newly diagnosed

Which type of breast cancer is this: hormone receptor-positive, HER2-positive, triple-negative, or are we still waiting?
Why: NICE NG101 (1.3.1) says to assess the oestrogen receptor, progesterone receptor and HER2 status of all invasive breast cancers simultaneously at the time of initial histopathological diagnosis. Almost every drug decision follows from that result, and the pages for each type carry the detail.
Who is my breast care nurse or key worker, and what is the number for the team between appointments and out of hours?
Why: NICE NG101 (1.1.1) says to ensure all people with breast cancer have a named clinical nurse specialist, or other specialist key worker with equivalent skills, to support them throughout diagnosis, treatment and follow-up.
What is the plan, in order, and which parts of it are decided and which are still choices for me?
Why: The decisions that are yours are not the same as the ones that are clinical. NICE NG101 (1.4.6) sends the further-surgery conversation to its own guidelines on shared decision making and on patient experience, which ask that risks, benefits and consequences are communicated and that you take an active part.
Can I be referred for psychological support, and is there a Maggie's centre or a peer support service near me?
Why: NICE NG101 (1.1.2) says to offer all people with breast cancer prompt access to specialist psychological support and, where appropriate, psychiatric services. Maggie's centres are free and need no appointment.
Is there a clinical trial open to me here or at another hospital?
Why: NICE NG101 (1.1.4) says to discuss opportunities for people with breast cancer to be involved in research, and encourage entry into clinical trials and other studies. The NHS says you can leave a trial at any point without giving a reason.

Breast-conserving surgery or mastectomy

Am I suitable for breast-conserving surgery, and if you are recommending a mastectomy, which of the reasons applies to me?
Why: Macmillan says surgeons try to do an operation that means you can keep your breast, and lists the reasons a mastectomy may be recommended instead: the lump is large compared to the rest of your breast, there is cancer in different parts of the breast, there is widespread DCIS, the cancer is on the skin or in underlying muscle, you have had radiotherapy to the chest before, or you have tested positive for a gene mutation.
If I choose conserving surgery, how many radiotherapy sessions would I have, and would a mastectomy avoid radiotherapy in my case?
Why: NICE NG101 (1.13.3) says to offer whole-breast radiotherapy after breast-conserving surgery with clear margins, and (1.13.13) 26 Gy in 5 fractions over 1 week where no lymph node irradiation is needed. But NG101 (1.13.10) also says to offer radiotherapy after mastectomy to people with node-positive disease or involved margins, so a mastectomy does not always avoid it.
What is the chance I would need a second operation because the margins are not clear, and what is this unit's rate?
Why: NICE NG101 (1.4.3) says to offer further surgery where cancer is present at the radial margins, and (1.4.5) to consider it where tumour cells are within 1 mm. The 2024 committee noted that rates of further surgery currently vary across the country, and moved the threshold from 2 mm to 1 mm partly to reduce additional surgeries.
What will the breast look and feel like afterwards, and can I see photographs?
Why: Cancer Research UK says surgeons can show you pictures of different results straight after surgery and several months later, and that scars fade but it may take up to a year for things to settle. If a large amount of tissue is removed the breast may be left with a dent, and partial reconstruction or reshaping may be possible.
If the cancer came back in the same breast, what would happen then?
Why: This is the question the survival figures do not answer. In the Milan trial, 30 of 352 women treated with quadrantectomy and radiotherapy had a recurrence in the same breast over 20 years, against 8 local recurrences among 349 treated by radical mastectomy, while deaths from all causes were 41.2 and 41.7 percent with no significant difference.

Reconstruction surgery, delayed reconstruction, or neither

Can I see an oncoplastic or plastic surgeon before I decide, and can I have immediate reconstruction even though I may need radiotherapy?
Why: NICE NG101 (1.5.4) says to offer immediate breast reconstruction to women who have been advised to have a mastectomy, including those who may need radiotherapy, unless they have comorbidities that rule out reconstructive surgery, and (1.5.3) to offer both immediate and delayed options whether or not they are available locally.
For each type you are offering, how many operations would it take, how long is the recovery, and what does it take from the rest of my body?
Why: NICE NG101 table 1 says more than 1 operation is usually needed to complete a reconstruction, whether immediate or delayed. Cancer Research UK says recovery is longer after reconstruction than after mastectomy alone, that a flap uses skin, fat or muscle from elsewhere, and that you may have more scars on your body.
What happens if the reconstruction fails or gets infected, and could that delay my chemotherapy or radiotherapy?
Why: NICE NG101 table 1 lists flap or implant failure, which may lead to delayed reconstruction and a flat appearance for a period of time, and says radiotherapy or chemotherapy may be delayed if there are complications. Cancer Research UK says there is good research evidence that chemotherapy works best if you start it within 6 weeks of cancer surgery.
Is going flat a proper option here, and can you make the chest wall flat and even rather than leaving loose skin?
Why: NICE NG101 (1.5.2) says to be aware that some people may prefer not to have breast reconstruction surgery. Cancer Research UK says your surgeon might be able to improve the appearance of the chest with more surgery after mastectomy, and that a prosthesis is an alternative to reconstruction.
Would I need surgery on the other breast to match, and when would that be?
Why: Cancer Research UK says some people need contralateral symmetrisation surgery to make the other breast bigger, smaller or less droopy, and that this can be done at the same time or later.

Surgery to the armpit, and the lymphoedema risk that lasts for life

Which armpit operation am I having, and why that one?
Why: NICE NG101 (1.4.9) says to stage the axilla with sentinel lymph node biopsy rather than axillary lymph node clearance where the ultrasound shows no involvement or a needle biopsy was negative, and (1.4.11) to offer clearance where a preoperative needle biopsy proved lymph node metastases.
If a sentinel node has cancer in it, what happens next, and is radiotherapy to the armpit an option instead of clearance?
Why: NICE NG101 (1.4.12) says to offer further axillary treatment, clearance or radiotherapy, after a sentinel node biopsy showing 1 or more macrometastasis, and (1.4.13) to discuss the benefits and risks of not having further treatment with women who have 1 or 2 macrometastases and have been advised to have whole-breast radiotherapy with systemic therapy. In AMAROS, lymphoedema at 5 years was 24.5 percent after clearance against 11.9 percent after axillary radiotherapy.
What is my personal lymphoedema risk after the operation you are proposing, and will someone measure my arm before surgery?
Why: NICE NG101 (1.14.1) says to inform people about their risk of lymphoedema before treatment starts, in a format to take away, including how to self-monitor and how to collect baseline measurements of the limb. In the pooled prospective cohorts of the DiSipio meta-analysis the overall incidence was 21.4 percent, about four times higher after axillary clearance (19.9 percent) than after sentinel node biopsy (5.6 percent).
Am I high risk for shoulder problems, and can I have supervised physiotherapy rather than a leaflet?
Why: NICE NG101 (1.14.14) names pre-existing shoulder conditions, a BMI over 30, planned axillary node clearance and planned radiotherapy to the axilla or supraclavicular nodes as high-risk factors, and (1.14.16) says to offer supervised support with upper limb exercises to people identified as high risk.
What are the early signs of lymphoedema, and who do I ring if I see them?
Why: NICE NG101 (1.14.6) says to refer people who develop lymphoedema to a specialist lymphoedema service as soon as possible. Breast Cancer Now lists the early signs as swelling that may come and go and be worse at the end of the day, tightness in the arm or breast, a dull ache, heaviness, tingling or numbness, and dry skin.

Fertility and early menopause, decided before treatment starts

Is the treatment you are planning likely to affect my fertility, and can I be referred to a fertility clinic this week?
Why: NICE NG257 (1.53.1) says to discuss fertility preservation with people preparing for medical treatment likely to impair their fertility, and that for people who need urgent treatment this discussion should take place at the earliest possible opportunity. Cancer Research UK says egg freezing takes about 2 to 3 weeks.
Is fertility preservation funded for me on the NHS, and does my age or whether I already have children affect that?
Why: NICE NG257 (1.53.3) says that for NHS-funded fertility preservation, do not apply the eligibility criteria used for conventional fertility treatment, including the lower age limit, and (1.53.4) that those criteria will apply when it comes to using the stored material. Cancer Research UK says IVF is available for some people on the NHS but not in all parts of the country.
Would injections to switch off my ovaries during chemotherapy help, and what would that add?
Why: In an individual patient-level meta-analysis of 873 patients from five trials, premature ovarian insufficiency occurred in 14.1 percent of those given a GnRH agonist with chemotherapy against 30.9 percent of controls, and post-treatment pregnancy in 10.3 percent against 5.5 percent, with no significant difference in disease-free or overall survival. In POEMS, which enrolled 257 premenopausal women with operable hormone receptor-negative breast cancer, ovarian failure at 2 years was 8 percent with goserelin against 22 percent.
If treatment brings on the menopause, what can I be offered for the symptoms, given that HRT is usually ruled out?
Why: NICE NG101 (1.14.22) says not to routinely offer HRT to women with menopausal symptoms and a history of breast cancer, (1.14.23) to offer it in exceptional circumstances for severe symptoms after discussing the risks, (1.14.24) to consider an SSRI for hot flushes but not for those taking tamoxifen, and (1.14.25) not to offer soy, red clover, black cohosh, vitamin E or magnetic devices.
Should I have a bone density scan?
Why: NICE NG101 (1.14.26) says to offer a baseline DEXA scan to women with invasive breast cancer who are not on adjuvant bisphosphonates and who are starting an aromatase inhibitor, have treatment-induced menopause, or are starting ovarian ablation or suppression, and (1.14.27) not to offer one to people receiving tamoxifen alone.

Body image, sensation and sex

Which part of my chest, breast or arm will be numb afterwards, and will the feeling come back?
Why: Cancer Research UK says you might have numbness, tingling or a shooting pain in the armpit, upper arm, shoulder or chest wall from nerve damage during surgery, and that nerves usually repair themselves but it can take many weeks or months. In a Danish national survey of 3,253 women a median of 26 months after surgery, the odds of sensory disturbance were about five times higher after axillary clearance than after sentinel node dissection.
Will a reconstructed breast or a spared nipple have any feeling?
Why: Cancer Research UK says the new breast will feel and look different to the one removed, and that surgeons aim to match the other breast but it will not be identical. Asking specifically about sensation, rather than about appearance, is how this gets answered before rather than after the operation.
I want to talk about sex. Who here does that, and can my partner come?
Why: Cancer Research UK says breast surgery does not affect being able to have sex but that emotions might change sexual feelings for a while, and that you might worry about allowing a partner to see or touch your body. NICE NG101 (1.1.2) puts prompt access to specialist psychological support in the guideline rather than leaving it to chance.
If treatment causes vaginal dryness or pain, what can I use, given that I am being told to avoid hormones?
Why: Cancer Research UK's menopausal symptoms page covers this, and NICE NG101 (1.14.20) asks that women are offered information and counselling about the possibility of early menopause and menopausal symptoms associated with breast cancer treatment. Dryness is a treatable symptom rather than something to put up with.
Is there a prosthesis fitting service, specialist bras, and someone who has been through this that I could talk to?
Why: Cancer Research UK lists mastectomy wear and prosthesis suppliers and says it can take time to adjust to a new body shape. Breast Cancer Now's Someone Like Me service pairs people with a volunteer who has had a similar experience.

Hair, and whether scalp cooling is worth it

Will the drugs you are giving me cause hair loss, and when would it start?
Why: Macmillan says hair loss usually starts after the first or second treatment and that eyebrows and eyelashes can go too. Which drug matters: not all breast cancer treatment causes it, and the pages for each receptor type list the regimens.
Is scalp cooling available in this unit, how much longer does each session take, and how well does it work with my regimen?
Why: In the SCALP randomised trial, 50.5 percent of women cooled during taxane, anthracycline or both kept more than half their hair after the fourth cycle, against none of the controls. Cooling adds time before and after each infusion, so the practical question is how long a treatment day becomes.
Does scalp cooling work as well for my hair type?
Why: A phase II study of Paxman scalp cooling in Black patients receiving chemotherapy for stage I to III breast cancer closed early after 15 of a planned 30 participants, for lack of efficacy: only one participant avoided significant hair loss, and the authors concluded that scalp cooling may not be efficacious in preventing alopecia in Black women, pointing to hair thickness, hair volume and cap design.
If I want a wig, when should I get it, and what help is there with the cost?
Why: Macmillan says it is a good idea to get a wig before treatment starts, because it is easier to match your own hair colour and style and you can get used to wearing it, and that the Little Princess Trust provides free real-hair wigs to young people up to age 24 who have hair loss as a result of cancer treatment.

Survivorship: follow-up, and which symptom is worth a phone call

What does my follow-up look like: how often, with whom, and which scans?
Why: NICE NG101 (1.15.1) says to offer annual mammography for 5 years to all people who have had or are being treated for breast cancer, including DCIS, continuing past 5 years for women until they enter the NHS Breast Screening Programme or Breast Test Wales, and (1.15.3) not to routinely use ultrasound or MRI for post-treatment surveillance.
Can I have my written care plan, with the signs to look out for and the number to ring?
Why: NICE NG101 (1.15.4) says to ensure everyone who has had treatment has an agreed, written care plan recorded in their notes, with a copy for them and their GP, naming the healthcare professionals, the dates for reviewing adjuvant therapy, the surveillance mammography, the signs and symptoms to look out for and seek advice on, and contact details for immediate referral and for support services such as lymphoedema.
Which symptoms should make me ring rather than wait for the next appointment?
Why: Breast Cancer Now says to talk to your GP or breast care nurse about any symptom that is new, does not have an obvious cause, and does not go away, and that this applies whether or not you have already been diagnosed with secondary breast cancer.
Does this unit audit its recurrence rates, and can I see them?
Why: NICE NG101 (1.4.16) says all breast units should audit their local, regional and distant recurrence rates after treatment, including systematically collecting data on radial margins and demographic information, and (1.4.17) that breast units should audit their axillary recurrence rates. It is a fair thing to ask about.

Surgeon appointment

Which operation do you recommend for me, and what would change your recommendation?
Why: Macmillan says the choice between conserving surgery and mastectomy depends on the size and position of the cancer and the size of the breast, and NICE NG101 (1.4.6) sends this conversation to its shared decision making guideline.
How long will I be in hospital, when can I drive, lift and go back to work, and will I have drains?
Why: Cancer Research UK says many people have breast surgery as a day case or go home the following day, and that a reconstruction at the same time usually means 2 to 7 days in hospital.
What can I do in the weeks before the operation to recover better?
Why: Cancer Research UK describes prehabilitation, and says there is a higher risk of complications from breast reconstruction if you smoke, are very overweight or have other serious medical conditions, and that stopping smoking, keeping a healthy weight and staying active before surgery help.

Breast care nurse appointment

What is the 24-hour number, and what temperature or symptom means I use it?
Why: Macmillan says to contact the 24-hour helpline straight away for a temperature over 37.5 C or below 36 C, for shivering, or for feeling unwell even with a normal temperature, and to call sooner rather than later.
Can I have the arm and shoulder exercises before the operation rather than after?
Why: NICE NG101 (1.14.13) says to give people who are going to have surgery or radiotherapy instructions and information on upper limb exercises before their treatment begins, explaining the benefits, when to start, and who to contact for more information.
What help is there with work, sick pay and money, and how do I ask for it?
Why: Macmillan says the Equality Act 2010 protects people with cancer from being treated less favourably, that employers cannot make reasonable adjustments unless they know, and that its money advisers give free confidential advice on benefits and grants.

Oncologist appointment

What is the aim of the treatment you are proposing, and how much does each part add?
Why: Macmillan's questions page says to ask what the aim of treatment is, what it involves, and what the benefits and risks are, so that you can weigh each part rather than accept the plan as a single block.
Which side effects are likely for me, which are permanent, and which have a treatment of their own?
Why: The distinction matters more than the list: NICE NG101 has a named offer for several of them, including an SSRI for hot flushes, a DEXA scan and bone treatment where the menopause is treatment-induced, and supervised physiotherapy for shoulder problems.
How will we know it is working, and what happens if it is not?
Why: Knowing the plan for the next step helps you weigh the current one, and Macmillan's questions page lists this among the questions worth asking before you agree to treatment.

Radiotherapy planning appointment

How many sessions, over how many weeks, and to which areas?
Why: NICE NG101 (1.13.13) says to offer 26 Gy in 5 fractions over 1 week for partial-breast, whole-breast or chest-wall radiotherapy without regional lymph node irradiation, (1.13.14) to consider 40 Gy in 15 fractions over 3 weeks in named circumstances including implant-based reconstruction, and (1.13.16) to offer 40 Gy in 15 fractions where the lymph nodes are being treated.
Will I be asked to hold my breath, and what is being done to keep the dose off my heart and lung?
Why: NICE NG101 (1.13.1) says to use a radiotherapy technique that minimises the dose to the lung and heart, and (1.13.2) to use a deep inspiratory breath-hold technique for people with left-sided breast cancer to reduce the dose to the heart.
How is my skin likely to react, and at what point do I ring about it?
Why: Cancer Research UK describes the skin changes during and after breast radiotherapy and when they settle; asking for the threshold in advance turns a worrying change into a planned phone call.

Fertility appointment

Which option fits the time we have: egg freezing, embryo freezing, or ovarian tissue?
Why: NICE NG257 (1.53.6) says to offer oocyte or embryo cryopreservation as appropriate to people of reproductive age preparing for treatment likely to make them infertile, and (1.53.7) to consider ovarian tissue cryopreservation when that is not feasible.
How long will my material be stored, who pays, and what happens at review?
Why: NICE NG257 (1.53.8) says to organise follow-ups at least every 5 years with people who have had material preserved to determine whether there is a need to continue NHS-funded storage, and to offer continued NHS-funded storage for people who remain at continued significant risk of infertility.
What contraception should I use during treatment, and for how long afterwards?
Why: Cancer Research UK says it is important to avoid pregnancy during and shortly after treatment for breast cancer and to use reliable contraception as soon as you start treatment.

Lymphoedema service appointment

What is my baseline measurement, and how do I monitor it myself?
Why: NICE NG101 (1.14.1) asks that the information given before treatment includes how to self-monitor and identify early signs and symptoms, and how to collect baseline measurements of the limb.
What treatment am I being offered, and what does the daily routine look like?
Why: NICE NG101 (1.14.9) says to offer compression therapy as the first stage of lymphoedema management and to make a shared decision about the form of compression, and (1.14.10) that kinesiology tape may be tried if compression is not appropriate or not comfortable. The NHS describes decongestive lymphatic therapy as compression, skin care, exercise and specialised massage.
Can I still exercise, fly, have blood taken from that arm or have a manicure?
Why: NICE NG101 (1.14.3) says to ensure people are aware that physical activity may improve quality of life and that there is no indication it causes or worsens lymphoedema, and (1.14.1) that there is no consistent evidence of increased risk associated with air travel, travel to hot countries, manicures, hot tub use, sports injuries, or with medical procedures such as blood tests, injections and blood pressure measurement on the treated side.

For partners and carers

How do I get included in appointments and get a copy of the 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, and that driving someone to appointments counts as caring.
What are the signs of sepsis, of an infected arm and of cord compression, and what do I do for each?
Why: The NHS sepsis page gives the 999 signs, the NHS cellulitis page gives the urgent GP and 111 threshold for skin that is painful, hot and swollen, and NICE NG234 treats new leg weakness, numbness or loss of bladder or bowel control in anyone with a cancer diagnosis as an oncological emergency.
What support is there for me: a carer's assessment, Carer's Allowance, or someone to talk to?
Why: The NHS says a carer's assessment is free and separate from the assessment of the person you care for, and lists the benefits that may apply to carers.

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Cancers·Breast cancer (all types)