Breast supportive care

Supportive care includes the holistic needs of patients (and their families) from the diagnosis of breast cancer to long-term survival or end of life care. Good quality care requires the collaboration of primary care, secondary care, the community and the third sector. Holistic needs can be met only by a multi-disciplinary team.
 
Useful Macmillan resources on holistic needs assessment can be found here.  
 
Supportive care should be care that is: 

• Timely
• Accessible; care should be inclusive and mindful of equality and diversity
• Consistent
• Holistic
• Interdisciplinary
• Coordinated
• Candid
• Realistic
• Sensitively delivered.

Aims of supportive care: 

1. Provide support and information at diagnosis, all patients should have:

• • A named consultant and a named Breast Clinical Nurse Specialist (BCNS) 
    • BCNS should be present at results appointment
    • A key point of contact (BCNS, alternative single point of contact)
  • An explanation of roles and responsibilities of the healthcare team
  • Appropriately written/digital information which is easily accessed, suggested resources are:
    • Be.macmillan
    • Breast Cancer Now
    • Local Breast Services: Clyde Sector Breast Service
  • Timely explanation of investigational pathway
    • Where possible write summary of consultations and provide directly to patients
    • Example templates taken from Clyde; Treatment pathway, NAC+ Targeted Therapy, NAC Pathway, NAE Pathway, PET Pathway, Primary endocrine treatment, Neoadjuvant treatment, further investigation, DCIS Pathway
  • A written summary of the consultation and copy sent to the GP, endorsed as best practice by ABS
  • Information about clinical trials as appropriate 
  • Information to facilitate involvement of family members and carers (e.g, Places for help and support, Here for you service), referral to third sector, improving cancer journey as per locally available.

2. Assess patient supportive needs and ensure communication between primary and secondary care:

• • To provide a holistic framework to clinicians supporting patients with breast cancer
  • Be able to assess patient’s comprehension of support available 
  • Work collaboratively with patients to elicit their needs and encourage uptake of support 
  • Standardise recording of assessments e.g, distress (PHQ4) and anxiety and communicate to all involved in the patient’s care  
  • Written summary of consultation secondary care to primary care 
  • Signposting to relevant support (see previously mentioned above, such as Breast Cancer Now, Macmillan, Maggie’s).

All patients who are diagnosed with breast cancer should be asked about their family history of cancer to assess if they are eligible for genetic testing and/or their relatives are eligible for additional breast screening.

Use the following link for comprehensive pathway on genetics.   

Presentation: Fertility & Its Preservation in Breast Cancer
Speakers: Professor Richard Anderson & Dr Maya Chetty

Introduction 

It is important to discuss the topic of fertility with pre-menopausal women at the time of diagnosis, discussing their wishes for a family and mentioning the importance of an early referral to a fertility unit facilitate a full discussion of all suitable options for the individual patients.

Fertility and its preservation 

The chemotherapy drugs used in the treatment of breast cancer can be damaging to the ovaries, including alkylating agents (e.g, cyclophosphamide), anthracyclines (epirubicin) and taxanes (docetaxel and paclitaxel). The growing follicles of the ovary are very sensitive to these drugs, and as it is these follicles that produce estradiol; the loss of these follicles and hormones is the reason many women will stop having periods during and for a time after chemotherapy, and in some they will not return. In the longer term however, it is the effect of these treatments on the non-growing follicles (called primordial follicles) that matters. All these follicles are formed before a woman is born and can’t be replaced: this makes up what is called the ‘ovarian reserve’. If nearly all these primordial follicles are lost during treatment, the ovary can’t recover and there will be little chance of pregnancy. Hormone therapies will also affect ovarian function, but don’t damage the non-growing follicles, so their effect is only while the woman is taking them. There is little known about whether targeted therapies are damaging to the ovary: in many cases there may again be a temporary disturbance in ovarian function but not permanent damage.

After breast cancer treatment such as chemotherapy stops, follicles surviving within the ovaries should start growing again, periods should resume, and the woman may be able to become pregnant. If a woman’s periods are going to return, this is usually within a year: if they haven’t returned by 2 years it is unlikely that they will return. The chance of there being follicles remaining after treatment is higher in women in their 20’s and 30’s and most of those women will not have permanent loss of ovarian function after treatment for early breast cancer.

Many women may not have started or completed their family when they are diagnosed with breast cancer. This may be an important issue for them that it may impact their treatment decisions. Analysis of women in Scotland has shown that only about 10% of women aged under 40 at diagnosis will have a baby after breast cancer ¹. The situation is more complicated when postponing the opportunity for pregnancy with longer term treatment with anti-HER2 drugs or endocrine therapy is proposed, as age is the most important factor in female fertility.

Is having a baby after breast cancer safe? 

There is currently no evidence to suggest that having a baby increases the risk of breast cancer returning. Analysis of all women having a baby after breast cancer in Scotland over the last 40 years showed no evidence of an increased risk overall, or specifically in women with hormone receptor positive (HR+) disease, or those who had a baby within 5 years of diagnosis². Additionally, data from the recent POSITIVE study suggests that stopping endocrine therapy for a suggested period of time to become pregnant is safe³.

Fertility preservation 

Trials have investigated whether it is possible to protect female fertility with gonadotropin releasing hormone (GnRH) analogues- such as goserelin, triptorelin- during chemotherapy. Three Randomised Clinical Trials (RCTs), including one in the UK, all showed that administration of a GnRH analogue reduced the risk of premature ovarian insufficiency (POI)- the current term for early ovarian failure– after treatment for breast cancer⁴. This has led to the widespread use of this approach but importantly, these trials did not show that this improved fertility, and it should not be relied on as a way to preserve fertility.

Fertility preservation is based on oocyte (egg), or embryo cryopreservation undertaken before chemotherapy starts. It is available at all four NHS IVF (in vitro fertilisation) centres in Scotland for women about to have breast cancer treatment that may affect their fertility. To be eligible, the following criteria must be met:

• She must be under the age of 41
• She should not have any children already
• BMI under 35 kg/m²
• She doesn’t need to be in a relationship, although she will need to be when she comes back to use the eggs as NHS Scotland does not currently offer fertility treatment to single women.

It is essential that a woman considering embryo cryostorage recognises that those embryos are the joint property of her and the partner whose sperm was used to create them. If the relationship breaks down, his consent is required for her to use those embryos.

Egg and embryo freezing 

In brief, the patient will need approximately two weeks of daily injections to stimulate her ovaries. To avoid delay, these can be started at any stage in the menstrual cycle. The eggs are then collected by passing a needle (attached to an ultrasound probe) through the top of the vagina into each ovary. This is done under sedation. If the patient wishes to use her partner’s sperm to fertilise the eggs and then freeze the resulting embryos, that can also be done but it is essential that she realises that those embryos are then joint property with him. Eggs/embryos can be stored until the woman is 55 years old (if that is what she consents to), but after the first few years there may be storage charges: the duration of free storage is under discussion at present.

Useful resources:  

• Cancer, Fertility and Me patient decision aid for women thinking about fertility preservation (non-English versions are in preparation)
• Fertility, pregnancy and breast cancer leaflet from Breast Cancer Now (downloadable text and audio versions)
• Official UK data and information
• Fertility Network Scotland
• Fertility Services, NHS Fertility Scotland.

How successful is fertility preservation? 

About 1 in 20 frozen eggs can become a baby, and its lower than that in women over 35. As fewer than 10 eggs will be frozen from most women, and sometimes only very few, this means that having fertility preservation cannot be seen as a guarantee that it will result in a baby.

What happens later? 

When the patient wishes to conceive, the cryopreserved eggs are warmed, fertilised using the partner’s sperm (or a donor in same-sex couples), and with appropriate estrogen and progesterone treatment an embryo can be replaced in the uterus a few days later. If there are other good quality embryos, these can be re-frozen for later use.

Eligibility criteria for NHS fertility treatment will need to be met again at the time of use of the eggs or embryos, at present, these are:

• Age under 41
• BMI 30 or less
• The couple should have no children together
• Single women are not eligible for NHS fertility treatment.

Referral pathways 

• Edinburgh: acu@nhslothian.scot.nhs.uk
• Glasgow: acs@ggc.scot.nhs.uk (referral form example)
• Dundee: tay.acusecretarial@nhs.scot
• Aberdeen: through TRAK as a service request for Grampian patients, otherwise to gram.fertop@nhs.scot.

At completion of primary treatment patients should be provided with a treatment summary which summarises their treatment received, proposed follow-up plan and time frame.  

Topics for consideration at the end of treatment review:

• Breast awareness
• Fatigue
• Menopausal symptoms and advice
• Weight management
• Exercise
• Swimming (with regard to radiotherapy)
• Diet including alcohol
• Sun exposure
• Sexuality, including sex, intimacy and body image
• Complimentary therapies including massages
• Post-treatment fertility including contraception if appropriate
• Post treatment cognitive changes
• Further surgery, including reconstruction 
• Bone health, including DEXA scan
• Smoking
• Anxiety about the future
• Fear of recurrence
• Psychological adjustment, be aware of more severe anxiety and depression. Highlight options for support e.g, counselling, mindfulness 
• Family situation and support 
• Mental health including mindfulness 
• Blood transfusion donation 
• Insurance including travel insurance 
• Benefits and return to work.

The list is not exhaustive and will be led by patients.  

A useful tool to guide the consultation could be Macmillan Holistic Needs Assessment tool.  

Provide patients with contact details and make patients aware of chance to 'check in'- review what information was provided, what questions were answered, and concerns raised if they require further review.

Assessment for what ongoing psychological support (e.g, Prehabilitation for Scotland, PHQ4) may be required in line with national framework on psychological support.  
 
Consideration of referral for interventions or providing information to patients on coping after cancer (MacMillan, Maggie’s, Breast Cancer Now, Fear of recurrence project, ActWELL programme (Breast Cancer Now), Moving Forward).

Presentation: Fear of Recurrence & Provision of Psychological Support & Therapy
Speaker: Dr Helen Moffat

Fear of Cancer Recurrence (FCR) is one of the most persistent and prevalent problems for those living with and beyond cancer and one of the most commonly reported unmet needs, which can be highly debilitating and persist over many years after treatment^1,2. A recent systematic review indicated rates of 59% with moderate levels, and 19% severe³. FCR is not linked to prognosis and may occur in those with a relatively good prognosis. Many patients report significant levels of anxiety soon after active treatment finishes, although this can also be triggered by events, such as a routine follow-up appointment or hearing of someone else who has had a recurrence of cancer.

Many people describe this period as more distressing than diagnosis or treatment. As this is often not recognized by others, this can also be very isolating. Being able to talk about these fears and being offered assurance that they are common will enable many patients to manage this distress and anxiety effectively. Evidence shows this can also reduce additional health utilization, such as extra phone calls, clinic visits and screening and support other aspects of post treatment wellbeing, such as return to work and / valued activities, sleep, exercise, engagement with breast and body awareness, screening appointments and adherence to hormone medication.

• Acknowledge it, it is very common to worry about recurrence and to become preoccupied by changes, twinges or pain that would not previously have been a concern
• Provide information and encourage discussion of concerns
• The FCR4 is a brief screening tool which can be helpful to give an indication of the level of distress associated with fears of cancer recurrence and can open up a supportive conversation at a follow up appointment
• A range of interventions may be offered from, a supportive conversation and signposting, e.g, Be.Macmillan - Worrying About Cancer Coming Back, Breast Cancer Now - Moving Forward Services, Beatson Cancer Charity - Fear of Recurrence Programme.
• Communication training for staff has also been shown to increase patients' expression of their anxiety and reduce subsequent rates of anxiety, for example, in the training programme developed and delivered for therapeutic radiographers at the Edinburgh Cancer Centre⁴.

Consider referral to psychological services (NHS or Maggies) for those with more severe FCR.

Most patients can feel a sense of relief when they finish cancer treatment. Some may find themselves worrying about whether it has worked or if the cancer will come back. Patients should be prepared as much as possible by the healthcare team on symptoms to look out for. These should be sensitively discussed at End of Treatment consultations in early breast cancer.

Breast cancer that comes back in the treated breast, chest or scar is a local recurrence. Having a local recurrence does not mean the cancer has spread.

Breast cancer that comes back in the lymph nodes in the armpit, close to the breast bone, or lower neck, is called regional recurrence.

Symptoms to report:

• Swelling on the chest, armpit or around the collarbone
• A change in shape or size
• A change in skin texture, such as puckering or dimpling
• Redness or a rash on or around the nipple or on the skin
• Liquid (discharge) that comes from the nipple without squeezing it
• The nipple has become inverted (pulled in) or looks different, for example changed its position or shape
• Swelling in the arm or hand
• A lump or thickening that feels different (with your treated breast this could be on or away from the scar line).

Diagnosis:

Biopsy of the suspicious site if possible.

Further investigation to check for distant metastasis.

Discuss at the Multi-Disciplinary Meeting (MDT).

Treatment:

Will be dependent on biopsy results, findings form other investigations, patient level of fitness.

Metastatic breast cancer (MBC), also called stage 4 breast cancer, is breast cancer that has spread to another part of the body. Approximately 30% of women diagnosed with early breast cancer will develop metastatic disease with different anatomical sites affected¹. When MBC occurs, cancer cells spread to another part of the patient's body. It may occur years or sometimes months after primary breast cancer and most commonly occurs in the liver, bones, lung and brain. The localisation of metastatic disease, level of fitness of the patient, previous treatment and the extent of MBC partially determine the long-term prognosis. The biological characteristics of the tumour, including its growth rate and relative resistance or sensitivity to available interventions, also contribute to the outcome. Finally, the efficacy of individual treatment modalities determines the success of palliation and the duration of disease control. Most patients with overt distant metastases are presently incurable and treatment aims to control the cancer, relieve any symptoms, and maintain health, wellbeing and a good quality of life for as long as possible.

Survival is difficult to predict, and treatment should be tailored to the individual and patients reassured, where possible, that there can be different treatments available should there be disease progression.

De Novo MBC is diagnosed at the same time as the primary breast cancer or before the primary breast cancer has been discovered.

De Novo metastatic breast cancer is sometimes referred to as being ‘treatment naive’ because it has not previously been treated with any anti-cancer treatments. This may mean that the cancer may be more responsive to treatment.

Symptoms to report:

• New symptom/pain that does not get better typically within 3 weeks
• General symptoms such as unintended weight loss, loss of appetite, feeling tired
• Presence of new breast changes
• Numbness/ weakness in the body
• Constant dry cough
• Severe headaches
• Loss of balance, confusion, seizures
• Vision problems
• Jaundice
• Difficulty urinating (either incontinence or not being able to go)
• This list is not exhaustive, and the clinician should be able to advise the patient to seek advice in the event of new symptoms last typically 3 weeks or more.

Diagnosing metastatic breast cancer will include:

• Blood tests
• Scans/ xrays, PET, MRI, CT
• Bronchoscopy
• Biopsy of suspicious area (This will confirm extent of disease and tumor and characteristics for treatment planning as hormone receptor and HER2 can be different in metastatic disease than that of the early breast cancer).

It should be noted that patients might be nervous or anxious while waiting for results, Macmillan offers easy to read leaflet which patients can be directed to on to find out on any support available and coping strategies.

Goals of treatment

The goals of treatment for metastatic breast cancer (MBC) are prolongation of survival, alleviation of symptoms, and maintenance or improvement in quality of life. It should be kept in mind that a diagnosis of secondary breast cancer is not hopeless, that there are a variety of treatment options and some people live long, productive lives with stage 4 breast cancer.

Treatment for metastatic breast cancer aims to control and slow down the spread of the cancer, relieve symptoms, maintain health and wellbeing and give the best quality of life for as long as possible.

• Be discussed in the Multidisciplinary team meetings
• Surgery
• Chemotherapy
• Radiotherapy
• Hormone therapy
• Targeted therapy
• Complementary therapies
• Treatment breaks.

How to cope with a cancer recurrence/metastatic disease

The aim should be that every patient diagnosed with metastatic breast cancer has access to a Metastatic Breast Clinical Nurse Specialist (MBCNS) as finding out that cancer is back may cause feelings of anger, shock, fear and sadness. Therefore, symptom management including the emotional & physical effects and oncological emergencies such as Malignant Spinal Cord Compression (MSCC) should be acknowledged and a plan of care to address this with the patient is put in place at diagnosis.

Clinical trials for metastatic breast cancer

All cancer centres in Scotland contribute to Clinical Trials. It should be discussed with patients if they would wish to take part and if they are eligible. All patients should have all eligible trials discussed with them.

Data collection of metastatic disease

Data collection is key to understanding this complex disease for example, how the disease is diagnosed, what symptoms are reported, response to treatment, how cancer progresses over time. Ultimately data collection can be utilised to plan future management of the disease, such as, identifying the number of patients living with the disease, most common sites of recurrence or identify approximate length of time to recurrence, all of which can ultimately focus resources where they are required for patient care.

Information needs

Supportive and informational literature is freely available for some charitable organisations, such as:

• Macmillan, i.e, Understanding secondary breast cancer
• Breast Cancer Now, i.e, Secondary breast cancer diagnosis
• Cancer Research UK, i.e, Coping and support when you have breast cancer
• ABC Diagnosis (endorsed by NHS England), i.e, Ductal and Lobular Breast Cancer Infographics.

Living with secondary cancer

Macmillan, Maggie’s and other charities provide info and support groups online, which you can refer patients to.

Presentation: Fear of Recurrence & Provision of Psychological Support & Therapy
Speaker: Dr Helen Moffat

Over half of patients report their emotional needs are not looked after as much as their physical needs. In the year following diagnosis, around 10% of patients will experience symptoms of anxiety and depression severe enough to warrant intervention by specialist psychological/psychiatric services, this rises to 50% among those who experience recurrent disease. After the shock of diagnosis, a minority will need specialist psychological support in order to manage treatment. For many, psychological distress increases after primary treatment finishes. Patients frequently report they feel “they should be coping better” which adds to distress, it is therefore important to acknowledge that a period of psychological distress and adjustment during and after treatment is normal.

• Give patients space to talk if they choose; for many just voicing worries will be a helpful intervention in itself. A general question about quality of life is a good place to start.    
• A Screening tool (e.g, PHQ4) can be a useful starting point for a supportive conversation and can help identify those with more severe psychological difficulties.
• As referenced earlier in the pathway- consider reviewing the 'Psychological therapies and support framework'. A framework developed to define the service which should be available to all those affected by cancer (16 years and above) and those identified to have specific psychological support needs.

Options for additional support:

Level 3 counselling, delivered via video to patients nationally, patients self-refer through Macmillan (Bupa counselling - Macmillan) or Cancer Support Scotland (Counselling - Cancer Support Scotland).

Level 4 clinical psychology through Maggies or NHS psycho-oncology services in some Boards.  

May be helpful to direct patients to general information such as BCN – stress and anxiety after breast cancer. 

Fertility section references:

1. Anderson RA, Brewster DH, Wood R, et al. The impact of cancer on subsequent chance of pregnancy: a population-based analysis. Hum Reprod 2018; 33(7): 1281-90.
2. Anderson RA, Lambertini M, Hall PS, Wallace WH, Morrison DS, Kelsey TW. Survival after breast cancer in women with a subsequent live birth: Influence of age at diagnosis and interval to subsequent pregnancy. Eur J Cancer 2022; 173: 113-22.
3. Partridge AH, Niman SM, Ruggeri M, et al. Interrupting Endocrine Therapy to Attempt Pregnancy after Breast Cancer. N Engl J Med 2023; 388(18): 1645-56.
4. Lambertini M, Moore HCF, Leonard RCF, et al. Gonadotropin-Releasing Hormone Agonists During Chemotherapy for Preservation of Ovarian Function and Fertility in Premenopausal Patients With Early Breast Cancer: A Systematic Review and Meta-Analysis of Individual Patient-Level Data. J Clin Oncol 2018; 36(19): 1981-90.

Fear of recurrence section references:

1. Bergerot CD et al (2022) Fear of cancer recurrence of progression: what is it and what can we do about it? ASCO 42: 18-27.
2. Thewes B et al (2021) fear of cancer recurrence in young women with a history of early-stage breast cancer: a cross sectional study of prevalence and association of health behaviours. Support Care Cancer 20: 2651-2659.
3. Luigjes-Huizer YL et al (2022) What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis. Psycho-oncology 31(6):879-892.
4. G Humphris, Y Yang, L Barracliffe, J Cameron, C Bedi (2018) “Emotional talk of patients with breast cancer during review appointments with therapeutic radiographers: effects on fears of cancer recurrence”. Supportive Care in Cancer (https://doi.org/10.1007/s00520-018-4484-7).

Metastatic or secondary breast cancer section references:

1. Redig A J, McAlluster S. S., Breast cancer as a systemic disease: a view of metastasis, available at: Breast cancer as a systemic disease: a view of metastasis - PMC (nih.gov).
2. Berman AT, Thukral AD, Hwang WT, Solin LJ, Vapiwala N. Incidence and patterns of distant metastases for patients with early-stage breast cancer after breast conservation treatment. Clinical Breast Cancer. 2013 Apr;13(2):88-94. doi: 10.1016/j.clbc.2012.11.001. Epub 2012 Dec 5. PMID: 23218473.