Breast cancer (all types)
Prepared with OnCo (onco.cc/prep/breast-cancer/). 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
59 on the sheet- 1.Which type of breast cancer is this: hormone receptor-positive, HER2-positive, triple-negative, or are we still waiting?
- 2.Who is my breast care nurse or key worker, and what is the number for the team between appointments and out of hours?
- 3.What is the plan, in order, and which parts of it are decided and which are still choices for me?
- 4.Can I be referred for psychological support, and is there a Maggie's centre or a peer support service near me?
- 5.Is there a clinical trial open to me here or at another hospital?
- 6.Am I suitable for breast-conserving surgery, and if you are recommending a mastectomy, which of the reasons applies to me?
- 7.If I choose conserving surgery, how many radiotherapy sessions would I have, and would a mastectomy avoid radiotherapy in my case?
- 8.What is the chance I would need a second operation because the margins are not clear, and what is this unit's rate?
- 9.What will the breast look and feel like afterwards, and can I see photographs?
- 10.If the cancer came back in the same breast, what would happen then?
- 11.Can I see an oncoplastic or plastic surgeon before I decide, and can I have immediate reconstruction even though I may need radiotherapy?
- 12.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?
- 13.What happens if the reconstruction fails or gets infected, and could that delay my chemotherapy or radiotherapy?
- 14.Is going flat a proper option here, and can you make the chest wall flat and even rather than leaving loose skin?
- 15.Would I need surgery on the other breast to match, and when would that be?
- 16.Which armpit operation am I having, and why that one?
- 17.If a sentinel node has cancer in it, what happens next, and is radiotherapy to the armpit an option instead of clearance?
- 18.What is my personal lymphoedema risk after the operation you are proposing, and will someone measure my arm before surgery?
- 19.Am I high risk for shoulder problems, and can I have supervised physiotherapy rather than a leaflet?
- 20.What are the early signs of lymphoedema, and who do I ring if I see them?
- 21.Is the treatment you are planning likely to affect my fertility, and can I be referred to a fertility clinic this week?
- 22.Is fertility preservation funded for me on the NHS, and does my age or whether I already have children affect that?
- 23.Would injections to switch off my ovaries during chemotherapy help, and what would that add?
- 24.If treatment brings on the menopause, what can I be offered for the symptoms, given that HRT is usually ruled out?
- 25.Should I have a bone density scan?
- 26.Which part of my chest, breast or arm will be numb afterwards, and will the feeling come back?
- 27.Will a reconstructed breast or a spared nipple have any feeling?
- 28.I want to talk about sex. Who here does that, and can my partner come?
- 29.If treatment causes vaginal dryness or pain, what can I use, given that I am being told to avoid hormones?
- 30.Is there a prosthesis fitting service, specialist bras, and someone who has been through this that I could talk to?
- 31.Will the drugs you are giving me cause hair loss, and when would it start?
- 32.Is scalp cooling available in this unit, how much longer does each session take, and how well does it work with my regimen?
- 33.Does scalp cooling work as well for my hair type?
- 34.If I want a wig, when should I get it, and what help is there with the cost?
- 35.What does my follow-up look like: how often, with whom, and which scans?
- 36.Can I have my written care plan, with the signs to look out for and the number to ring?
- 37.Which symptoms should make me ring rather than wait for the next appointment?
- 38.Does this unit audit its recurrence rates, and can I see them?
- 39.Which operation do you recommend for me, and what would change your recommendation?
- 40.How long will I be in hospital, when can I drive, lift and go back to work, and will I have drains?
- 41.What can I do in the weeks before the operation to recover better?
- 42.What is the 24-hour number, and what temperature or symptom means I use it?
- 43.Can I have the arm and shoulder exercises before the operation rather than after?
- 44.What help is there with work, sick pay and money, and how do I ask for it?
- 45.What is the aim of the treatment you are proposing, and how much does each part add?
- 46.Which side effects are likely for me, which are permanent, and which have a treatment of their own?
- 47.How will we know it is working, and what happens if it is not?
- 48.How many sessions, over how many weeks, and to which areas?
- 49.Will I be asked to hold my breath, and what is being done to keep the dose off my heart and lung?
- 50.How is my skin likely to react, and at what point do I ring about it?
- 51.Which option fits the time we have: egg freezing, embryo freezing, or ovarian tissue?
- 52.How long will my material be stored, who pays, and what happens at review?
- 53.What contraception should I use during treatment, and for how long afterwards?
- 54.What is my baseline measurement, and how do I monitor it myself?
- 55.What treatment am I being offered, and what does the daily routine look like?
- 56.Can I still exercise, fly, have blood taken from that arm or have a manicure?
- 57.How do I get included in appointments and get a copy of the plan and the medicine list?
- 58.What are the signs of sepsis, of an infected arm and of cord compression, and what do I do for each?
- 59.What support is there for me: a carer's assessment, Carer's Allowance, or someone to talk to?
The words I may hear
- Alpha/beta ratio: A number for each tissue or tumour that says how much it cares about the size of each radiation dose.
- Lymph node status (node-positive / node-negative): Whether the cancer has reached the nearby lymph nodes, the filters along the lymphatic drainage.
- Lymphoedema after breast cancer treatment: Swelling of the arm, hand, breast or chest wall caused by lymph fluid that can no longer drain, after the lymph nodes under the arm have been removed or irradiated.
- Numbness and nerve pain after breast surgery: Small sensory nerves are cut during breast and armpit surgery, so an area of the upper inner arm, armpit, chest wall or reconstructed breast is often numb, tingly or painful afterwards.
- Cording (axillary web syndrome): Tight bands of scar tissue that appear in the armpit in the weeks after lymph node surgery and can run down the arm to the elbow, wrist or thumb.
- Margins after breast-conserving surgery, and second operations: After conserving surgery a pathologist measures how close the cancer came to the edge of the tissue removed.
- Seroma after breast surgery: A collection of clear fluid under the wound or in the armpit after breast or lymph node surgery.
- Co-amplification and the 17q12 HER2 amplicon: When a cancer copies the HER2 gene many times over, its neighbours on chromosome 17 are copied with it; those co-amplified genes are passengers, not the driver.
- Body image after breast surgery and reconstruction: It can take a year for scars, swelling and feelings about a changed body to settle after breast surgery; a prosthesis, reconstruction, no reconstruction, specialist bras and talking to someone who has been through it are all ordinary routes, and none is the right one for everybody.
- Lymphovascular invasion (LVI): The pathologist has seen cancer cells inside small lymph or blood vessels in the removed tissue: a sign the tumour has found the exit routes, even if the nodes are clear.
Tests and results to bring
Every invasive breast cancer, at diagnosis: Oestrogen receptor, progesterone receptor and HER2 assessed simultaneously on the diagnostic biopsy by quality-assured immunohistochemistry, reported quantitatively, with reflex in situ hybridisation for a HER2 score of 2+, and the results available at both the preoperative and the postoperative multidisciplinary meeting. The pathology report also carries the histological type, the Nottingham grade with its three component scores, the invasive and whole tumour size, the node stage and the margins.
Staging and prognostic assessment: Ultrasound of the axilla with needle sampling of any abnormal node before treatment; MRI only where the extent is unclear, the breast is too dense to assess or a lobular cancer is being sized for breast-conserving surgery. Stage against UICC TNM 8, and put grade, node stage and size together in the Nottingham Prognostic Index and in PREDICT, which estimates the benefit of each adjuvant treatment. In advanced disease, contrast-enhanced CT of chest, abdomen and pelvis or FDG PET-CT.
Staging the axilla when the nodes look clear: Sentinel lymph node biopsy, not axillary clearance, with dual technique using isotope and blue dye (NICE NG101 recommendations 1.4.9 and 1.4.10). NSABP B-32 randomised 5,611 women and found eight-year overall survival of 90.3 percent with sentinel node biopsy alone against 91.8 percent with added clearance (hazard ratio 1.20, 0.96 to 1.50); ALMANAC measured the gain, with lymphoedema at one year falling from 13 to 5 percent and sensory loss from 31 to 11 percent. In selected patients the sentinel node itself can now be omitted: SOUND (tumours up to 2 cm, clear axillary ultrasound) and INSEMA (T1 and T2, breast-conserving surgery) both showed non-inferiority, with axillary recurrence in INSEMA of 1.0 against 0.3 percent. Omission is only reasonable where the missing nodal information would not change the treatment plan.
Biomarker results to ask for: Oestrogen and progesterone receptors, HER2 (including HER2-low), Ki-67 and grade, Genomic recurrence scores (Oncotype DX, MammaPrint), BRCA1/2 and other germline variants, PD-L1 (triple-negative), ESR1 and PIK3CA mutations (advanced hormone receptor-positive), Oestrogen receptor, reported as a percentage of stained invasive nuclei with an intensity, positive at 1 percent or more, with 1 to 10 percent reported separately as ER low positive (RCPath G148; ASCO/CAP 2020), Progesterone receptor, asked for by NICE NG101 1.3.3 on every invasive cancer but not a mandatory item of the UK pathology dataset, and used for prognosis and quality control rather than to predict endocrine benefit, HER2 by immunohistochemistry 0 to 3+, with reflex dual-probe in situ hybridisation for 2+ reporting the HER2 to chromosome 17 ratio, the HER2 copy number and the chromosome 17 copy number; 13 to 20 percent of early breast cancer is positive (RCPath G148), Nottingham grade, and the three component scores that make it, which are mandatory to record separately, Invasive tumour size and whole tumour size in millimetres, reported as two different numbers, Lymph node status, and whether it came from a sentinel node biopsy, which is written pN0(SN), Nottingham Prognostic Index from grade, node stage and size, and PREDICT, which NICE NG101 1.6.4 asks clinicians to use.
Scans and tests linked to this cancer: Active surveillance, Breast cancer after chest radiotherapy in childhood, and the screening that follows, CT (computed tomography), DPYD genotyping and DPD phenotyping before fluoropyrimidines, Histopathology & immunohistochemistry, HRD genomic scar scores (GIS, LOH, HRDetect).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Early disease, all types: Breast-conserving surgery with radiotherapy or mastectomy, sentinel node biopsy, then treatment by receptor type on the subtype pages. (HR-positive / HER2-negative breast cancer, HER2-positive breast cancer, Triple-negative breast cancer (TNBC), Hypofractionated radiotherapy)
- Surgery to the breast: conservation or mastectomy: Breast-conserving surgery with radiotherapy, or mastectomy, depending on the size of the tumour against the size of the breast, whether there is more than one tumour, whether radiotherapy is possible, and what the woman wants. Survival is the same either way and has been for twenty years: NSABP B-06 found a hazard ratio for death of 0.97 (0.83 to 1.14) for lumpectomy with irradiation against mastectomy, Milan I found death from any cause of 41.7 against 41.2 percent at twenty years, and EORTC 10801 found a hazard ratio of 1.11 (0.94 to 1.33) at a median 22.1 years. What differs is recurrence in the conserved breast, which is why radiotherapy goes with conservation. Oncoplastic techniques widen the range of tumours that can be conserved. (NSABP B-06, Milan I (quadrantectomy against radical mastectomy), EORTC 10801, NSABP B-04, Lumpectomy (breast-conserving surgery), Mastectomy, Breast conservation or mastectomy, Oncoplastic breast surgery)
- Margins and further surgery: Re-excision or mastectomy when tumour reaches the inked margin. NICE NG101 recommendation 1.4.3 offers further surgery when invasive cancer or ductal carcinoma in situ is present at the radial margin (0 mm), and recommendation 1.4.5, new in 2024, considers it when tumour cells lie within 1 mm of but not at the radial margin. The threshold for invasive cancer was lowered from 2 mm to 1 mm because the evidence could not separate 1 to 2 mm from more than 2 mm on local recurrence, and repeated operations harm appearance and self-image. For ductal carcinoma in situ alone the 2 mm threshold is retained (recommendation 1.4.4). (Resection margins (R0 / R1 / R2), Lumpectomy (breast-conserving surgery), Ductal carcinoma in situ (DCIS), Breast conservation or mastectomy)
- The axilla after chemotherapy given before surgery: Sentinel node biopsy after chemotherapy is unreliable on its own: ACOSOG Z1071 found a false-negative rate of 12.6 percent against a pre-specified threshold of 10 percent. The fix is targeted axillary dissection, marking the biopsied node before chemotherapy and removing that node as well as the sentinel nodes, which brought the false-negative rate to 1.4 percent when combined with sentinel node dissection and 2.0 percent as a formal procedure. If the nodes are pathologically clear afterwards, NSABP B-51 found that regional nodal irradiation adds nothing (hazard ratio 0.88, 0.60 to 1.28, p=0.51). Whether axillary surgery can also be dropped in that situation is what ATNEC is recruiting to answer. (ACOSOG Z1071 (Alliance), Targeted axillary dissection (MD Anderson prospective study), NSABP B-51 / RTOG 1304, ATNEC, Targeted axillary dissection, Drugs before or after the operation)
- Radiotherapy after breast-conserving surgery: Whole-breast radiotherapy for every woman with invasive cancer and clear margins (NICE NG101 recommendation 1.13.3). The Early Breast Cancer Trialists' Collaborative Group overview of 10,801 women in 17 trials found radiotherapy cut the ten-year risk of any first recurrence from 35.0 to 19.3 percent and the fifteen-year risk of breast cancer death from 25.2 to 21.4 percent, with about one death avoided by year fifteen for every four recurrences avoided by year ten. A boost of 16 Gy to the tumour bed is offered where the risk of local recurrence is high (recommendation 1.13.17): EORTC 22881-10882 found twenty-year recurrence of 12.0 against 16.4 percent with no survival gain and severe fibrosis of 5.2 against 1.8 percent. (NSABP B-06, EORTC 22881-10882 (boost against no boost), Tumour bed boost, IMRT / IGRT (modern external beam), Leaving radiotherapy out)
- Drugs before or after surgery: Which drugs are given is decided by receptor status and belongs on the subtype pages; when they are given is shared. The Early Breast Cancer Trialists' Collaborative Group pooled 4,756 women in ten trials of the same chemotherapy before or after surgery and found no difference in distant recurrence (38.2 against 38.0 percent at fifteen years), breast cancer mortality or death from any cause, with breast conservation achieved in 65 against 49 percent and fifteen-year local recurrence higher after chemotherapy first (21.4 against 15.9 percent, rate ratio 1.37). Treating first is chosen to make conservation possible, to make a large or node-positive tumour operable, and to see whether the drugs work, because what remains at surgery now guides what follows, differently for each receptor subtype. (Drugs before or after the operation, Neoadjuvant / adjuvant / perioperative, HR-positive / HER2-negative breast cancer, HER2-positive breast cancer, Triple-negative breast cancer (TNBC), Pathologic complete response (pCR), Residual cancer burden (RCB))
- Breast-conserving surgery or mastectomy: This is the decision the whole of early breast cancer turns on, and it is usually presented as a choice with the same outcome. That is true of survival and of almost nothing else, so it is worth having the actual numbers. Two randomised trials followed people for twenty years. In the Milan trial, 701 women with cancers no larger than 2 cm were assigned between 1973 and 1980 to radical (Halsted) mastectomy or to quadrantectomy followed by radiotherapy; after a median 20 years, death from any cause had occurred in 41.2 percent of the mastectomy group and 41.7 percent of the conserving group (P equals 1.0), and death from breast cancer in 24.3 and 26.1 percent (P equals 0.8). In NSABP B-06, 1,851 women were assigned to total mastectomy, lumpectomy alone, or lumpectomy with radiotherapy, and after 20 years there was no significant difference between the three in disease-free, distant-disease-free or overall survival, with a hazard ratio for death of 0.97 (0.83 to 1.14) for lumpectomy with radiotherapy against total mastectomy. Those are the cohorts they are: women treated decades ago, with the surgery and drugs of the time, and they say nothing about what will happen to one person. What they do say is that keeping the breast did not cost survival, which is why it is offered first. What differs is everything else, and this is the part usually summarised away. Radiotherapy: conserving surgery commits you to it. 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 the lymph nodes are not being treated, or (1.13.14) 40 Gy in 15 fractions over 3 weeks where there is a reason including implant-based reconstruction, and (1.13.16) 40 Gy in 15 fractions whenever the nodes are irradiated. Mastectomy does not reliably avoid it: NG101 (1.13.10) offers radiotherapy after mastectomy for node-positive disease or involved margins, and (1.13.12) withholds it from most node-negative disease. What radiotherapy is worth after conserving surgery has been measured: in the EBCTCG meta-analysis of 10,801 women in 17 randomised trials, it cut the 10-year risk of any first recurrence from 35.0 to 19.3 percent and the 15-year risk of breast cancer death from 25.2 to 21.4 percent, with about one breast cancer death avoided by year 15 for every four recurrences avoided by year 10. For a narrow low-risk group NICE offers the choice of leaving it out: NG101 (1.13.7, 1.13.8) says to consider not using radiotherapy for women aged 65 and over with T1N0, ER-positive, HER2-negative, grade 1 to 2 cancer who will take endocrine therapy for at least 5 years, and to tell them that without radiotherapy local recurrence occurs in about 50 women per 1,000 at 5 years against about 10 per 1,000 with it, that overall survival at 10 years is the same, and that there is no increase in serious late effects from having it. A second operation: conserving surgery can need one. NG101 (1.4.3) offers further surgery where cancer is at the inked margin and (1.4.5) considers it within 1 mm, and the 2024 committee lowered that threshold from 2 mm precisely because repeated surgeries damage breast appearance and self-esteem, are traumatic, and vary in frequency across the country. How the breast looks and feels: after conserving surgery the treated breast can be smaller, firmer or dented, and NICE's own radiotherapy evidence records more clinician-assessed adverse events at 5 years and more reports of a harder or firmer breast with the one-week schedule, though it judged the differences not clinically important. After mastectomy the chest is numb over the scar whatever is done next. And what recurrence would mean: in the Milan trial, 30 of 352 women treated by quadrantectomy and radiotherapy had a recurrence in the same breast over 20 years, a crude cumulative incidence of 8.8 percent, against 8 local recurrences among 349 after radical mastectomy, 2.3 percent, with no difference in distant metastases; NSABP B-06 put in-breast recurrence at 14.3 percent over 20 years with radiotherapy and 39.2 percent without. A recurrence in a conserved breast is a further operation and a frightening year; it did not, in these trials, change survival. Finally, some cancers do not offer the choice. Macmillan lists the reasons a mastectomy is recommended: a lump large compared with the rest of the breast, cancer in different parts of the breast, widespread DCIS, cancer on the skin or in the underlying muscle, previous radiotherapy to the chest, or a gene mutation found on testing. (Lumpectomy (breast-conserving surgery), Mastectomy, Margins after breast-conserving surgery, and second operations, Hypofractionated radiotherapy, FAST-Forward, START-B (UK Standardisation of Breast Radiotherapy), IMPORT LOW, PRIME II, LUMINA, Curative intent vs palliative intent, Multidisciplinary tumour boards, Prehabilitation before cancer surgery)
- Reconstruction surgery, delayed reconstruction, or neither: Three options, not two, and the third is a real one. NICE NG101 (1.5.1) says to offer breast reconstruction to people after they have had a mastectomy for breast cancer, and immediately afterwards (1.5.2) to be aware that some people may prefer not to have it. It also says (1.5.3) to offer both the immediate and the delayed option whether or not they are available locally, which is the sentence to quote when a local service offers only one, and (1.5.4) to offer immediate reconstruction to women advised to have a mastectomy including those who may need radiotherapy, unless comorbidities rule out reconstructive surgery. On timing, NG101's table 1 is unusually frank. Immediate reconstruction means waking with a breast shape, usually fewer operations and anaesthetics, and less scarring because the existing breast skin is used, but limited time to decide, a longer operation and recovery, and a risk that complications delay chemotherapy or radiotherapy; Cancer Research UK notes that there is good evidence chemotherapy works best started within 6 weeks of cancer surgery. Delayed reconstruction means a period with no breast, which a prosthesis can fill, but more time to choose, time to lose weight or stop smoking first, and a reconstruction that cannot be derailed by the cancer treatment. Both, NICE says, usually need more than one operation to complete, and there are no clear differences in satisfaction with completed reconstructions either way. On what each option asks of the body: an implant is the simplest operation and the shortest recovery, but NICE notes that implant-based reconstructions may be more affected by radiotherapy than flap reconstructions, and where radiotherapy is planned the route is often a tissue expander first and an exchange later, which is two operations. A flap moves skin, fat and sometimes muscle from the tummy or the back, gives a breast that ages and changes weight with you, and costs a second wound, a longer operation, a longer recovery and, where the tummy is used, a risk of hernia that smoking increases. Both carry flap or implant failure, which NICE says may lead to delayed reconstruction and a flat appearance for a period of time. Surgery to the other breast to match, called contralateral symmetrisation, is common and can be done at the same time or later. Whatever is built, Cancer Research UK says plainly that the new breast will feel and look different to the one removed: it is a shape rather than a restored breast, and it has little sensation. Choosing none is not a failure to decide. A prosthesis, specialist mastectomy wear, or nothing at all are all ordinary, and a surgeon can often make a flat chest wall even rather than leaving loose skin. For men the NHS does not routinely do implant reconstruction, because the implants available do not recreate the shape of a man's chest. After breast-conserving surgery there is a smaller version of the same conversation: where a large amount of tissue is removed the breast can be left with a dent, and a partial reconstruction using nearby tissue, or reshaping the breast (therapeutic mammoplasty, often with a reduction on the other side), can be done at the same operation. Radiotherapy still follows. (Breast reconstruction, Mastectomy, Lumpectomy (breast-conserving surgery), Body image after breast surgery and reconstruction, Numbness and nerve pain after breast surgery, Male breast cancer, Psycho-oncology and distress screening, Peer support and support groups)
- Surgery to the armpit, and the lymphoedema risk that lasts for life: The armpit operation is decided almost in passing and is the single biggest determinant of how the arm feels for the rest of your life, so it is worth understanding. NICE NG101 (1.2.1) has the axilla scanned before treatment and any abnormal node sampled with a needle. If that is clear, (1.4.9) says to stage the axilla with a sentinel lymph node biopsy rather than a clearance, using (1.4.10) the dual technique of isotope and blue dye; Macmillan says this removes the smallest number of nodes possible, usually 1 to 3. If the needle biopsy already proved cancer in a node, (1.4.11) says to offer axillary node clearance. If a sentinel node turns out to contain cancer, (1.4.12) says to offer further axillary treatment, clearance or radiotherapy, for 1 or more macrometastasis; (1.4.13) says to discuss the benefits and risks of having no further treatment with women who have 1 or 2 macrometastases, have had conserving surgery, and are having whole-breast radiotherapy with systemic therapy; (1.4.14) says not to treat micrometastases further; and (1.4.15) says isolated tumour cells count as node-negative. The reason all of that exists is lymphoedema, and the figures are the part nobody hears. In a meta-analysis of 72 studies, the pooled incidence of arm lymphoedema after breast cancer was 16.6 percent, and 21.4 percent when restricted to 30 prospective cohorts, rising over the first two years; it was about four times higher after axillary lymph node dissection (19.9 percent) than after sentinel node biopsy (5.6 percent), and the risk factors with the strongest evidence were extensive surgery and being overweight or obese. That is where more than one in five comes from. Radiotherapy to the axilla instead of surgery roughly halves it: in AMAROS, 1,425 sentinel node-positive patients were randomised, and at 5 years lymphoedema affected 24.5 percent after clearance against 11.9 percent after axillary radiotherapy, while at 10 years axillary recurrence was 0.93 against 1.82 percent with no difference in survival. Two trials go further and leave the axilla alone: in ACOSOG Z0011, 891 women with 1 or 2 positive sentinel nodes having lumpectomy and whole-breast radiotherapy had 10-year overall survival of 86.3 percent without clearance against 83.6 percent with it, and in SENOMAC, 2,540 patients with 1 or 2 sentinel-node macrometastases, about 90 percent of them having nodal radiotherapy, had 5-year recurrence-free survival of 89.7 against 88.7 percent. What reduces the risk, in NICE's own 2025 words: information before treatment starts in a format to take away, covering risk reduction, early signs, skin changes, how to self-monitor and how to take baseline measurements of the limb (1.14.1); keeping to a healthy weight and keeping the arm moving, because (1.14.3) physical activity does not cause or worsen lymphoedema and may improve quality of life; and skin care, because infection is what tips a vulnerable arm over. NICE also clears away some folklore: (1.14.1) says there is no consistent evidence of increased risk from air travel, travel to hot countries, manicures, hot tub use or sports injuries, nor from blood tests, injections, intravenous medicines or blood pressure measurement on the treated side, and (1.14.2) makes procedures on that arm a shared decision rather than a prohibition. It says (1.14.4) not to offer compression garments as prevention to people who are only at risk. Recognising it early is the whole game. Breast Cancer Now describes swelling that comes and goes and is worse at the end of the day, rings and watches suddenly tight, tightness in the arm or breast without visible swelling, a dull ache, heaviness, tingling or numbness, dry skin, and later hardness or pins and needles. NICE (1.14.6) says to refer anyone who develops it to a specialist lymphoedema service as soon as possible. Treatment exists and works: (1.14.8) assess for other causes such as nodal disease or cellulitis first, (1.14.9) compression therapy as the first stage with a shared decision about the form, (1.14.10) kinesiology tape if compression is not tolerated, and (1.14.11) reassurance that exercise is safe. The NHS calls the whole package decongestive lymphatic therapy: compression, skin care, exercise and specialised massage, then a maintenance phase you run yourself. It is controlled rather than cured, which is why it is worth catching in the first weeks. Alongside lymphoedema sits the shoulder. NG101 (1.14.14) says to identify people as high risk before surgery if they have a pre-existing shoulder problem, a BMI over 30, planned axillary node clearance, or planned radiotherapy to the axilla or supraclavicular nodes, (1.14.16) to offer them supervised support with upper limb exercises, and (1.14.19) to refer anyone with a persistent reduction in arm and shoulder mobility to physiotherapy. (Sentinel node biopsy, Lymphadenectomy (lymph node dissection), Sentinel lymph node biopsy, Lymphoedema after breast cancer treatment, Cording (axillary web syndrome), Seroma after breast surgery, Compression, decongestive therapy and exercise for lymphoedema, Hypofractionated radiotherapy, Late effects and survivorship toxicity)
- Fertility and early menopause, decided before treatment starts: This is the decision with a deadline. Chemotherapy can stop the ovaries working, temporarily or permanently, and treatment can bring the menopause forward by decades; once treatment has started, some of the options have gone. NICE NG101 (1.1.5) hands fertility preservation to the NICE fertility guideline, now NG257 (2026), and NG257 (1.53.1) says to discuss it with people preparing for treatment likely to impair their fertility, and that where treatment is urgent the discussion should happen at the earliest possible opportunity. The route it names is (1.53.6) oocyte or embryo cryopreservation for people of reproductive age with female reproductive organs, (1.53.5) sperm cryopreservation for those with male reproductive organs, which matters because men get breast cancer too, and (1.53.7) ovarian tissue cryopreservation where the others are not feasible. Two sentences in NG257 are worth carrying into the room. The first is (1.53.3): for NHS-funded fertility preservation, do not apply the eligibility criteria used for conventional fertility treatment, including the lower age limit. The rules about age, existing children and BMI that govern NHS IVF are not supposed to be applied to preserving fertility before cancer treatment. The second is (1.53.4): those criteria will apply later, when you come to use the stored material, so the funding question has two halves and it is worth asking both. Storage is reviewed at least every 5 years and NHS funding continues for people who remain at significant risk (1.53.8). On timing, Cancer Research UK says collecting and freezing eggs takes about 2 to 3 weeks, that IVF is the most effective method, that letrozole or tamoxifen can be used with lower-dose stimulation, and that IVF is available for some people on the NHS but not everywhere, so the answer varies by where you live. Where there is no time for any of that, the other route is switching the ovaries off during chemotherapy with a GnRH agonist injection. In an individual patient-level meta-analysis of 873 patients from five randomised trials, premature ovarian insufficiency occurred in 14.1 percent of those given a GnRH agonist against 30.9 percent of controls (adjusted odds ratio 0.38), and at least one pregnancy after treatment in 10.3 against 5.5 percent, with no significant difference in disease-free or overall survival. The trial that opened this question, POEMS, randomised 257 premenopausal women with operable hormone receptor-negative breast cancer and found ovarian failure at 2 years in 8 percent on goserelin against 22 percent, with pregnancy in 21 against 11 percent. Whether this is offered as well as, or instead of, egg freezing is a conversation for the fertility clinic rather than a substitute for it. If the menopause arrives anyway, it arrives fast and without the years of warning a natural menopause gives. NICE NG101 (1.14.20) says to offer women information and counselling about the possibility of early menopause and its symptoms, and (1.14.21) to stop systemic HRT at diagnosis. On treating the symptoms it is restrictive and says so: (1.14.22) do not routinely offer HRT to women with a history of breast cancer; (1.14.23) offer it in exceptional circumstances for severe symptoms after discussing the risks; (1.14.24) consider an SSRI for hot flushes, but not for women taking tamoxifen; and (1.14.25) do not offer soy, red clover, black cohosh, vitamin E or magnetic devices. Bone follows: (1.14.26) offer a baseline DEXA scan to women not on adjuvant bisphosphonates who are starting an aromatase inhibitor, have a treatment-induced menopause, or are starting ovarian suppression; (1.14.27) not to those on tamoxifen alone; and (1.14.28) bisphosphonates for those the UK expert group algorithms identify. Whether it is safe to pause endocrine therapy to try for a baby is a question for hormone receptor-positive disease and is answered on that page. (Oncofertility and fertility preservation, Menopause symptoms after chemotherapy for breast cancer, HR-positive / HER2-negative breast cancer, Male breast cancer, Cognitive behavioural therapy for fatigue and distress, Psycho-oncology and distress screening)
- Ductal carcinoma in situ: Surgery with or without radiotherapy and endocrine therapy; active surveillance under study. (Ductal carcinoma in situ (DCIS))
- At recurrence: Consider reassessing hormone receptor and HER2 status on a biopsy of the recurrence where a change in receptor status would change management, because conversion between the primary and a metastasis is common in both directions. (Receptor conversion: when the receptors change between the primary and a recurrence, Core needle biopsy and fine-needle aspiration (FNA), HER2-low and HER2-ultralow)
- A positive sentinel node: Isolated tumour cells count as node-negative and need nothing further (NICE NG101 recommendation 1.4.15). Micrometastases need nothing further either: IBCSG 23-01 found ten-year disease-free survival of 76.8 percent without clearance against 74.9 percent with it, and lymphoedema of 4 against 13 percent (recommendation 1.4.14). For one or two macrometastases, NICE recommendation 1.4.12 offers axillary clearance or axillary radiotherapy and recommendation 1.4.13 asks for a discussion of having neither after breast-conserving surgery with whole-breast radiotherapy and systemic therapy. The evidence behind that discussion is Z0011 (ten-year overall survival 86.3 against 83.6 percent) and SENOMAC (five-year recurrence-free survival 89.7 against 88.7 percent in 2,540 patients including mastectomy and T3 disease). Where the axilla is treated, AMAROS makes radiotherapy the gentler choice: ten-year axillary recurrence of 1.82 against 0.93 percent, with lymphoedema halved at 11.9 against 24.5 percent. (ACOSOG Z0011 (Alliance), SENOMAC, AMAROS (EORTC 10981-22023), IBCSG 23-01, POSNOC, Lymphadenectomy (lymph node dissection), Lymphoedema after breast cancer treatment, Doing less to the armpit)
- Dose and schedule: In England, 26 Gy in five fractions over one week for partial-breast, whole-breast or chest-wall radiotherapy without nodal irradiation (NICE NG101 recommendation 1.13.13), and 40 Gy in fifteen fractions over three weeks when the regional nodes are treated (recommendation 1.13.16) or where a diagnosis increases radiosensitivity, an implant-based reconstruction has been done, or a three-week course is simply more acceptable (recommendation 1.13.14). The radiobiology came from three British trials: START-A held the treatment time constant and varied the fraction size, START-B established 40 Gy in fifteen, FAST estimated the alpha to beta ratio at 2.7 Gy and so predicted a five-fraction equivalent of 28 Gy, and FAST-Forward tested 26 Gy in five fractions in 4,096 women and found five-year recurrence of 1.4 against 2.1 percent. Deep inspiratory breath hold is used for left-sided cancers to lower the heart dose (recommendation 1.13.2), because major coronary events rise by 7.4 percent per gray of mean heart dose with no threshold. (START-A (UK Standardisation of Breast Radiotherapy, trial A), START-B (UK Standardisation of Breast Radiotherapy), FAST (5-fraction whole-breast radiotherapy), FAST-Forward, Hypofractionated radiotherapy, Hypofractionation (fewer, larger radiotherapy doses), Deep inspiration breath-hold (DIBH), Alpha/beta ratio)
- Treating less than the whole breast: Partial-breast radiotherapy is considered for women who have had breast-conserving surgery for invasive cancer excluding lobular type, with clear margins, aged 50 or over with tumours of 3 cm or less, node-negative, oestrogen receptor-positive, HER2-negative, grade 1 to 2, who will take endocrine therapy for at least five years, and it must be given by external beam (NICE NG101 recommendations 1.13.4 to 1.13.6). IMPORT LOW found five-year local relapse of 0.5 against 1.1 percent with fewer changes in breast appearance, while RAPID, which gave the dose twice a day, was non-inferior on recurrence but had late toxicity of 32 against 13 percent. Intraoperative radiotherapy during the lumpectomy met its non-inferiority margin in TARGIT-A and had lower mortality from causes other than breast cancer (hazard ratio 0.59, 0.40 to 0.86), but NICE TA501 does not recommend the Intrabeam system for routine commissioning and permits it only on existing machines under NHS England governance. (IMPORT LOW, RAPID (accelerated partial-breast irradiation), NSABP B-39/RTOG 0413, TARGIT-A (targeted intraoperative radiotherapy), Partial-breast irradiation, Intraoperative radiotherapy (IORT))
- Who can leave radiotherapy out: Women aged 65 and over with clear margins and a very low absolute risk of local recurrence, defined by NICE NG101 recommendation 1.13.7 as T1N0, oestrogen receptor-positive, HER2-negative, grade 1 to 2, who are willing to take endocrine therapy for at least five years. Recommendation 1.13.8 sets out what must be said: without radiotherapy local recurrence occurs in about 50 women per 1,000 at five years and with it in about 10 per 1,000; overall survival at ten years is the same; and there is no increase in serious late effects from having it in this group. CALGB 9343 (aged 70 and over, ten-year locoregional recurrence 10 against 2 percent), PRIME II (aged 65 and over, ten-year local recurrence 9.5 against 0.9 percent) and LUMINA (aged 55 and over with luminal A biology, five-year local recurrence 2.3 percent) are the trials behind it. Outside that group radiotherapy after conservation remains standard. (CALGB 9343, PRIME II, LUMINA, Leaving radiotherapy out, Active surveillance)
- Radiotherapy after mastectomy, and to the nodes: Chest-wall radiotherapy is offered for node-positive macrometastatic disease or involved margins (NICE NG101 recommendation 1.13.10), considered for node-negative T3 or T4 disease (1.13.11) and not offered to people at low risk of local recurrence (1.13.12). SUPREMO tested it in intermediate-risk disease treated with modern systemic therapy and found ten-year overall survival of 81.4 against 81.9 percent (hazard ratio 1.04, p=0.80), with chest-wall recurrence of 1.1 against 2.5 percent. For the nodes: no regional nodal radiotherapy for histologically node-negative disease (1.13.19), no axillary radiotherapy after axillary clearance because the combination is the worst for the arm (1.13.20), supraclavicular fossa radiotherapy for four or more involved nodes (1.13.21) or for one to three with other poor prognostic factors (1.13.22), and the internal mammary chain considered within the nodal target for macrometastatic node-positive disease (1.13.23). MA.20 and EORTC 22922 are the trials behind nodal irradiation. (SUPREMO (BIG 2-04), NCIC MA.20, EORTC 22922/10925, NSABP B-51 / RTOG 1304, Radiotherapy after mastectomy, Mastectomy)
- Reconstruction: Reconstruction is offered to everyone having a mastectomy for breast cancer, and both timings, immediate and delayed, are offered whether or not they are available locally (NICE NG101 recommendations 1.5.1 and 1.5.3). Immediate reconstruction is offered even where radiotherapy is planned, unless other illness rules out the surgery (1.5.4). The choice between an implant and the woman's own tissue is a real trade: in the Mastectomy Reconstruction Outcomes Consortium, autologous reconstruction gave higher satisfaction with the breasts at two years (7.94 points, 5.68 to 10.20) but roughly double the odds of a complication, while implants failed more often (7.1 against 1.3 percent). British outcomes after implant reconstruction have been measured and are above the national standards: iBRA found implant loss of 9 percent, infection of 25 percent and return to theatre of 18 percent within three months across 81 units, and Pre-BRA found implant loss of 8.2 percent for the newer pre-pectoral technique. Mesh was used in 65 percent of iBRA reconstructions without randomised evidence; Best-BRA is the pilot trial testing implant placement properly. (Mastectomy Reconstruction Outcomes Consortium (MROC), iBRA (implant Breast Reconstruction evAluation), Pre-BRA (pre-pectoral breast reconstruction evaluation), Best-BRA, Breast reconstruction, Breast implant-associated anaplastic large cell lymphoma, Mastectomy)
- Body image, sensation and sex: Start with the thing almost nobody is told before they consent. Breast and armpit surgery cuts small sensory nerves, so an area of the chest, the breast, the armpit and the upper inner arm is numb afterwards. Cancer Research UK puts it as numbness, tingling or a shooting pain in the armpit, upper arm, shoulder or chest wall from nerve damage during surgery, and says the nerves usually repair themselves but it can take many weeks or months. The longer-term picture comes from a Danish national survey: of 3,253 women aged 18 to 70 who answered a median of 26 months after surgery, 1,543 (47 percent) reported pain in the treated area, 201 of them severe and 595 moderate; the odds of persistent sensory disturbance were about five times higher after axillary lymph node dissection than after sentinel lymph node dissection (odds ratio 4.97, 3.92 to 6.30) and five times higher in women aged 18 to 39; radiotherapy raised the odds of pain and chemotherapy did not. Only about 1 in 5 of those in pain had spoken to a doctor about it in the previous three months, which is the second half of the problem: it is treatable, and people do not report it because they were never told to expect it. A reconstructed breast has little or no sensation however good it looks, and a spared nipple usually has none. Cancer Research UK says the new breast will feel and look different to the one removed. That is worth asking about separately from appearance, before the operation, because it is not something a photograph shows. On the body you are left with: Cancer Research UK says swelling and bruising go down and scars fade, but it may take up to a year for things to settle, and that the first few months can bring intense feelings. NICE NG101 (1.1.2) says to offer all people with breast cancer prompt access to specialist psychological support and, where appropriate, psychiatric services, which makes asking for it a request for something already promised. Breast Cancer Now's Someone Like Me pairs people with a volunteer who has been through something similar, and Maggie's centres are free and need no appointment. On sex, plainly. Cancer Research UK says breast surgery does not affect your ability to have sex, but that emotions may change sexual feelings for a while and that you might worry about letting a partner see or touch your body. The physical obstacles are usually treatable and usually unmentioned: numbness where the breast used to respond, a chest wall that hurts to lie on, shoulder stiffness that makes positions awkward, fatigue, and, where treatment has forced the menopause, vaginal dryness and pain, which is a symptom with treatments rather than something to endure. NICE NG101 (1.14.20) puts information and counselling about menopausal symptoms into the guideline. Nothing here assumes the reader is a woman, has a partner, is heterosexual, or has stopped wanting sex. Men with breast cancer have their own page and the same conversation is owed to them; the NHS does not routinely offer implant reconstruction to men because the implants available do not recreate the shape of a man's chest, which makes the scar and the sensation the whole of the outcome. (Numbness and nerve pain after breast surgery, Body image after breast surgery and reconstruction, Breast reconstruction, Menopause symptoms after chemotherapy for breast cancer, Male breast cancer, Psycho-oncology and distress screening, Peer support and support groups, Quality of life)
- Hair, and whether scalp cooling is worth it: It is the first question people ask and the one answered with the least detail, so here is what is known. Not every breast cancer treatment causes hair loss: it depends on the drugs, which depend on the receptor result, and the subtype pages list the regimens. Where it happens, Macmillan says it usually starts after the first or second treatment, that eyebrows and eyelashes can go as well, and that hair usually starts to grow back after treatment, sometimes with a different texture or colour. Scalp cooling is the only thing that changes the outcome. 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. That is the honest headline: about half kept enough hair to go without a wig, and about half did not, and the trial counted keeping more than half rather than keeping all of it. The figure is better with taxane-only regimens and worse with anthracyclines. A caveat that belongs beside every one of those numbers: the trials that produced them had few Black participants, and a later phase II study of the Paxman device in Black patients having chemotherapy for stage I to III breast cancer closed early after 15 of a planned 30 participants for lack of efficacy, with hair loss and distress scores rising during cooling and only one participant avoiding significant loss; the authors named hair thickness, hair volume and cap design as the likely reasons. Anyone quoting one in two should say whose hair it was measured on. Practically, cooling means wearing a tight cold cap from before the infusion until some time after it, so treatment days get longer, and it is uncomfortable at the start. Availability varies by unit, so whether it is offered at all is a question for the first chemotherapy appointment rather than the third. If you would want a wig, Macmillan says to get it before treatment starts, because matching your own colour and style is easier while you still have it and you can get used to wearing it; buying and practising with eyebrow and eyelash products beforehand works the same way. Some people shave their heads first for the sense of control. The Little Princess Trust provides free real-hair wigs to people up to the age of 24. None of this is vanity. Hair is how most people are recognised, including by themselves, and losing it is often the moment a diagnosis becomes visible to everyone else. (Hair loss and scalp cooling with breast cancer chemotherapy, Scalp cooling (cold caps: DigniCap, Paxman), Psycho-oncology and distress screening, Peer support and support groups)
- Survivorship: follow-up, and which symptom is worth a phone call: Follow-up after breast cancer is lighter than most people expect, and the reason is that scans of people without symptoms have never been shown to help. NICE NG101 (1.15.1) says to offer annual mammography for 5 years to everyone who has had or is being treated for breast cancer including DCIS, and for women to continue annual mammography past 5 years until they enter the NHS Breast Screening Programme in England or the Breast Test Wales Screening Programme; (1.15.2) not to do mammography of the ipsilateral soft tissues after a mastectomy; and (1.15.3) not to use routine ultrasound or MRI for post-treatment surveillance. That first rule is under revision: NICE reviewed the guideline on 11 September 2026 and says it will be updating the recommendation on annual mammography, following a surveillance decision taken in June 2026, with no new wording published yet. What replaces the scans is a document and a phone number. NG101 (1.15.4) says to ensure everyone who has had treatment has an agreed written care plan, recorded in the notes by a named professional and copied to them and their GP, that names the designated healthcare professionals, the dates for reviewing any adjuvant therapy, the details of surveillance mammography, the signs and symptoms to look out for and seek advice on, the contact details for immediate referral to specialist care, and the contact details for support services such as lymphoedema. If you do not have that piece of paper, asking for it is asking for something the guideline already promised. Which symptoms count. Breast Cancer Now gives a three-part rule that is easier to hold than a list: talk to your GP or breast care nurse about any symptom that is new, has no obvious cause, and does not go away, and it says the same rule applies to people already living with secondary breast cancer, where a new symptom may mean the cancer is progressing. Its organ-by-organ list is the one to keep: in the bone, pain that does not improve with painkillers and may be worse lying down or at night, a fracture, or unexplained back pain with difficulty walking, numbness or loss of bladder or bowel control; in the lungs, breathlessness on activity or at rest, a cough that does not go away, or chest pain or tightness that persists; in the liver, pain under the right ribs or in the right shoulder, sickness, loss of appetite and weight, hiccups, a swollen abdomen or yellowing of the skin; in the brain, headache, morning sickness or vomiting, weakness or numbness down one side, unsteadiness, seizures, speech or vision problems, or changes in behaviour or memory; in the skin or the chest wall, a rash, a change in skin colour, or a firm painless lump; and in the lymph nodes, a lump or swelling under the arm, breastbone or collarbone. Three general ones sit above the list: constant tiredness, constant nausea, and unexplained weight loss and loss of appetite. The point of writing them down is not to make the reader watch for cancer in every ache. It is that the three-part test, new plus unexplained plus persistent, is what distinguishes the ache that needs a call from the one that does not, and having it in advance is what stops people waiting months out of a wish not to make a fuss. Alongside all of this, NG101 (1.4.16, 1.4.17) asks every breast unit to audit its local, regional, distant and axillary recurrence rates, including radial margins and demographic information such as socioeconomic status, age and ethnicity, which is a fair thing to ask your own unit about. (Survivorship care and late-effects surveillance, Late effects and survivorship toxicity, Bone metastases and skeletal-related events, Brain metastases (intracranial disease), Metastatic spinal cord compression (MSCC), Lymphoedema after breast cancer treatment, Early integrated palliative care, Financial toxicity and financial navigation, Work and money during breast cancer treatment (UK), Carers: what you can do and UK carer support (breast cancer))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.