The Forgotten Patients: Why Does the Supportive Care Stop?

Whilst the number of cancer survivors patients are increasing, services are failing to keep up with their growing needs and long-term impact of cancer treatment on body composition, psychological health and emotional wellbeing. One cohort of particular concern are early-stage hormone-receptor positive breast cancer survivors who are prescribed an endocrine therapy up to 10 years following the completion of systemic anticancer treatment. Their unmet needs have been well documented in the literature, yet our healthcare pathways continue to fail them. They often lack adequate symptom and nutritional management, describing this part of their cancer journey like “being pushed out to sea on a boat with no oars”.1

We must ask ourselves – why does the supportive care stop if the treatment continues?

Breast Cancer and Endocrine Therapy

The National Cancer Registry in Ireland reported that 31.8% of invasive cancers diagnosed in 2020-2022 were breast, with breast cancer survivors making up 22% (n=49,240) of the cancer survivor population. Hormone receptor positive (HR+) /human epidermal growth factor receptor 2 (HER2-) breast cancer accounts for over 70% of all breast cancer cases diagnosed.2 The European Society of Medical Oncology (ESMO) recommend the use of an adjuvant endocrine therapy in all HR+ breast cancers for 5 years, increasing up to 7-10 years for higher stage cancers.2 The use of an endocrine therapy can reduce the risk of breast cancer recurrence by 30-50% after 5 years of therapy and improve disease free survival.2

However, endocrine therapy isn’t without its side effects, including fatigue, body composition alterations, joint pain and insomnia. The ESMO Clinical Practice Guideline reports that side effects of adjuvant endocrine therapy affect women of all ages and should be addressed to improve quality of life and adherence.

Qualitative data from HR+ breast cancer survivors reports a desire for “transparency about weight gain” as a side effect of their cancer treatment.3 “Avoid being overweight” as noted in the ESMO guidelines is not an effective recommendation for the complexities of obesity and weight gain in this cohort, nor is it particularly helpful.

As healthcare professionals, we need to set expectations around side effects of endocrine therapies, including changes to body composition, treating them the same way we would a chemotherapy agent or radiotherapy. The conversation, particularly around body composition alterations, should happen at the beginning of endocrine therapy treatment, imploring targeted dietetic interventions to manage side effects, support long-term health and reduce recurrence risk.

The ESMO guidelines recommends that these issues have a significant influence on quality of life and deserve close multidisciplinary team (MDT) follow up. In the Irish sphere, recent research reported that whilst 60.9% of breast cancer survivors surveyed desired dietetic support, they were the least likely to receive it (17%).4

Questions to ask ourselves:

• Do we need to reframe how we think about endocrine therapy?

Many patients are told they have completed curative treatment for their cancer but still experience endocrine therapy side effects that can be more debilitating than the chemotherapy, radiotherapy or surgery itself. Given this, how should we reconsider the role and impact of endocrine therapy in post-treatment care?

• Who should these patients be referred to?

Traditionally, dietetic care during cancer treatment has focused on malnutrition however, in light of the epidemic of nutrition misinformation and black-market weight loss drugs, registered oncology dietitians should be consulted as part of the MDT to provide safe, evidence-based weight management strategies.

• Where should they be referred?

Should MDT care, including dietetic care, be provided at medical oncology outpatient clinics? In the community, where these patients are usually referred, weight management services are not seen as the priority and patients are often put on a waiting list. Unfortunately, these women are falling through the gaps in our cancer care services.

Nutritional Considerations in HR+ Breast Cancer Survivors and the Role of the Oncology Dietitian

The role of an oncology dietitian, particularly in the survivorship phase, is complex and multifaceted (Fig 1). Many cancer survivors are balancing recovering from treatment to getting back to pre-treatment life. Furthermore, many HR+ breast cancer survivors are trying to manage the side effects of endocrine therapy, which directly impacts nutritional intake and body composition.

The nutritional considerations in HR+ breast cancer survivors extend beyond just “weight”, encompassing heart health, bone mineral density, sarcopenic obesity, gut function, disordered eating behaviours and dietary supplement use, among others. These nutritional considerations, and the ability for the patient to manage them, go hand-in-hand with endocrine therapy related effects, such as fatigue, insomnia, and body composition changes. In Ireland, concerningly, 40.6% of cancer survivors surveyed reported conducting self-directed research on nutrition, diet and cancer.4

Body Composition Changes and Weight Gain Concern

Muscle Mass

Muscle mass is an important prognostic factor in cancer that has been well documented in the literature,5 however it is not routinely assessed in HR+ breast cancer survivors due to a myriad of factors. A lack of standardised protocols, limited access to specialised equipment such as bioelectrical impedance analysis or DEXA scans, and limited trained personnel are all barriers to muscle mass assessment in outpatient clinics.6 Whilst assessing muscle mass may not be seen as a high priority in outpatient clinics, muscle mass is directly related to adjuvant endocrine therapy outcomes. Muscle mass and toxicity-related adjuvant endocrine therapy discontinuation have been independently associated, with low muscle mass increasing toxicity related discontinuation (OR 2.18, p = 0.036).7 Furthermore, toxicity related discontinuation was associated with worse ipsilateral breast tumour recurrence and disease-free survival (HR 9.47, p = 0.002; HR 4.53, p = 0.001).7 In breast cancer, a further consideration is sarcopenic obesity, higher levels of adiposity with the lowest levels of muscularity. It is independently associated with higher mortality and higher rate of complications in systemic and surgical cancer treatment across multiple cancer types.7

The Role of the Oncology Dietitian

Clinicians often prioritise immediate concerns in cancer survivors at outpatient clinics, e.g. disease recurrence and treatment side effects, leaving muscle mass assessment underemphasised. The importance of muscle mass as a prognostic factor may not be fully recognised or integrated into routine care. Oncology dietitians, who have upskilled in body composition, are in the unique position to assess, prevent and manage those at risk of low muscle mass, and sarcopenia, (the accelerated loss of skeletal muscle mass and function commonly, but not exclusively, associated with advancing age8). Personalised nutritional counselling is vital to managing low muscle mass and sarcopenia risk, by ensuring optimal protein intake throughout the day. For individuals with a cancer diagnosis, guidelines for protein intake recommend 1.2g – 2.0g protein per kilogram of body weight per day (kgBW/d),9 with the higher end of this range being significantly above the average intake for most individuals.10 Research published in 2020 reports that protein intake in the Irish population declines with increasing age, and intake is skewed across the day.11 This decline may increase the risk of sarcopenia, especially in older adults with cancer.

Cancer disrupts the homeostatic state of muscle protein turnover, accounting for increased nutritional recommendations for protein. Amino acids, the dietary anabolic drivers of muscle mass accretion, vary in quality and do not equally promote anabolism. Animal proteins provide better anabolic stimuli compared to plant protein foods and a combination of animal proteins, contributing to >65% of total protein intake, and plant proteins is recommended for optimal muscle health.9

Assessing muscle mass is not routinely captured in medical oncology outpatient clinics, despite being cited as one of most common nutritional problems – and likely most impactful on prognosis – in the oncology population.5 One of the gold standard body composition measurements, computed tomography, is expensive, inaccessible and exposes patients to unnecessary radiation. In recent years, novel techniques have been explored, such as bioelectrical impedance analysis or ultrasound, as viable alternatives. Routinely monitoring muscle mass allows for a pro-active approach of timely dietetic intervention instead of a reactive approach, which is the current standard. This is particularly important in HR+ breast cancer survivors, who typically look “well-nourished” and may not be assessed for low muscle mass or sarcopenia risk. Furthermore, dietetic intervention to improve muscle mass and protein intake to encourage anabolism may prevent incidences of toxicity-related adjuvant endocrine therapy discontinuation.7

Adipose Tissue Mass and Weight Gain

Weight gain following breast cancer treatment is reported in up to 90% of patients and is associated with disease-free survival outcomes in breast cancers.12-14 Weight gain can be attributed to chemotherapy, endocrine therapy and menopausal status. Research has shown that 52% of breast cancer survivors receiving adjuvant endocrine therapy experienced a clinically significant mean weight gain after 60 months of 3.5kg (±10.4kg) in premenopausal women and 0.6kg (±6.5kg) in post-menopausal women.12 Evidence has suggested that cancer survivors living with obesity increase their total risk for mortality by 17% for every 5kg/m2 increment before their cancer diagnosis, for breast cancer specific mortality this increases to 18%.15 Breast cancer survivors with a high adipose tissue mass are at risk for recurrence, and furthermore at increased risk of cardiovascular incidence, including those with a healthy body mass index (BMI).16-17

The Role of the Oncology Dietitian

We need to begin to move away from the simplistic approach of “eat less, move more”, acknowledging that the neurobiology of appetite, body weight and energy regulation is mediated by a combination of hormonal signals from the gut, adipose tissue and other organs,18 which in HR+ breast cancer, is likely affected further by adjuvant endocrine therapies.

The Adapted Clinical Practice Guidelines for Ireland defines obesity as a complex chronic disease characterized by excess or dysfunctional adiposity that impairs health.18 As obesity is chronic in nature, the treatment plan must be long-term, following a comprehensive medical, physical, functional, psycho-social and behavioural assessment.18 BMI alone is not an accurate stand-alone tool for identifying adiposity related complications in breast cancer survivors, however, this is the anthropometric measure routinely used in medical oncology outpatient clinics.

Breast cancer survivors experiencing excess adiposity often experience substantial bias and stigmas and this dominant narrative fuels assumptions about personal irresponsibility and lack of willpower.19

Weight Gain Concern: How to Address It

Sensitive and respectful conversations around “weight management” need to be considered. Literature has reported disordered eating behaviours are prevalent in both young female cancer survivors and women of menopausal ages.20-23

A fixation on weight and weight loss following breast cancer treatment or during endocrine therapy, without adequate dietetic support, may lead to risk of orthorexia nervosa (ON), a disordered eating behaviour characterized by an exaggerated fixation on health-conscious eating behaviours.20 In ON, behaviours seen outside consuming the “purest” of food can lead an individual to experience severe emotional distress due to the rigid pressures.20 This behaviour may lead to the decreased consumption of important macro and micronutrients.

Changing the focus from “weight loss” to “health gain” is key when providing nutritional support and counselling to this vulnerable cohort of patients, highlighting important changes to support their long-term health (e.g. cardiovascular risk, bone health).

Taking the time to hold space in consultations to address weight gain concern and actively listening to their lived experience will create a safe environment for these patients. Weight gain can be a result of a myriad of factors, including endocrine therapy related side effects such as fatigue, insomnia and joint pain. Working collaboratively with registered dietitians with experience in weight management and oncology can ensure a safe, evidence-based treatment plan can be put in place for these patients.

Questions to ask ourselves:

• How are we addressing weight gain in this cohort of patients?

Are you holding space in your consultations for this conversation or is it a throw away comment such as “watch your weight” or “expect weight gain”.

• Are you weight bias?

Whilst it may not be an intentional practice, completing a self-assessment tool to address weight bias is vital as a healthcare professional providing care to this particularly vulnerable cohort.

Use the Implicit Association Test at https://implicit.harvard.edu/implicit/takeatest.html selecting the Weight IAT test.

• Are we referring patients to specialists in the area, given the complex nature of weight management in this cohort?

Patients will seek out information from somewhere, so what are we doing to provide them with safe, evidence-based information? Are dietitians being included in the MDT? Are medics and nurses consulting dietitians about patient cases, even if the service isn’t available?

Bone Mineral Density

Females undergoing cancer treatment can experience accelerated bone loss, within 6 months of treatment, resulting in a substantial 21% decrease in bone density compared to age-matched menstruating females.24,25 Furthermore, postmenopausal breast cancer survivors prescribed an aromatase inhibitor and gonadotropin-releasing hormone (GnRH) agonist experience bone loss at a yearly rate 7.7% higher than the general population.26

The Role of the Oncology Dietitian

As per the American Society of Clinical Oncology (ASCO) and ESMO guidelines, Calcium and Vitamin D supplementation of 1000mg and 800IU per day is recommended to support bone mineral density.2,27 Anecdotally, breast cancer survivors find the taste and texture of prescribed combined calcium and Vitamin D supplements “chalky” and often turn to over the counter supplements in pharmacies or health food stores. Ensuring that patients have access to acceptable alternatives is crucial for supporting bone health. However, it’s important to note that supplements should complement/supplement, not substitute prescribed treatments. Based on our research in survivorship clinics with this cohort, the rising trends of plant-based dairy alternatives and organic food is a cause for concern, particularly when the nutritional value of these products is misunderstood. In Ireland, approximately 11% of adults aged 19-64 years and 7% of >65 years reported consuming non-dairy milk alternatives.10 If diets are not carefully planned, essential nutrients, like protein, iodine and calcium, may be unintentionally excluded. For individuals who choose these alternatives, working with a registered dietitian to carefully assess and plan their diet can help ensure they meet all their macro- and micronutrient requirements.

Supplement Use

Supplement use is highly prevalent in breast cancer survivors.28,29 The global “menopause-specific” supplement market is growing rapidly, projected to grow from USD 17.77 billion in 2024 to USD 25.89 billion by 2031.30

Harrigan et al.,28 reported 83% of breast cancer survivors surveyed (n=475) used a dietary supplement, with 108 different supplements reported. Concerningly, there were 36 supplements reported that had a potential adverse interaction with tamoxifen or an aromatase inhibitor.28 Of n=353 women prescribed an endocrine therapy, 38% were taking a dietary supplement with a potential risk of interaction, including black cohosh, turmeric, ginseng, milk thistle and slippery elm bark.28

The Heads of Food Safety Agency In Europe established a Working Group on Food Supplements to create a common approach on to the management and assessment of ingredients or nutrients that could pose a risk to public health when used in food supplements.31 The group evaluated over 117 dietary supplements and identified 13 as potential health risks – these included maca root, ashwagandha, tea tree oil, curcumin, tryptophan, black cohosh and melatonin.31 These substances could face restrictions, bans, or further evaluation by the European Food Safety Authority (EFSA), with final decisions expected in the coming years. The goal is to enhance consumer protection and create uniform supplement regulations across the EU.

The Role of the Oncology Dietitian

Dietary supplements are only required in those with a diagnosed nutritional deficiency via a blood test or those following a restricted diet, such as veganism. In Ireland, supplements are regulated as food products rather than medicines, meaning they fall under food safety laws and regulations. Regulations for dietary supplements are less strict than prescription medications. Those who manufacture the supplement are responsible for ensuring that the products being placed on the market are safe and compliant with the legislation. While certain nutrients may offer beneficial effects when taken as supplements (e.g. Vitamin D), it is important to recognise that many nutrients can have adverse effects if consumed in excessive doses. Supplement companies often exceed the Nutrient Reference Value (NRV) in their products to account for potential nutrient degradation over time. Since food law requires the nutritional composition on labels to reflect the average value of a nutrient over the full shelf life of the supplement, manufacturers add extra nutrients at the outset to ensure that the product meets its labelled content even after months of storage. Currently, no NRVs have been set by European Law for herbal/botanical ingredients. There are no maximum safe levels for these ingredients in Ireland.

The risk of micro-influencers and celebrities producing their own  dietary supplements has risen exponentially in the last number of years.32

Ensuring that survivors are meeting macro and micronutrient requirements through dietary analysis and education and having opening conversations about supplement use for symptom burden, may reduce the potential health risks that using dietary supplements may cause.

Survivors may often be reluctant to discuss supplement use with their medical oncology team.33,34 By having and open and honest conversation with survivors about supplement use and what they hope to achieve with it, we can potentially mitigate harmful outcomes, like herb/nutrient-drug interactions.33 Furthermore, actively consulting with the wider multidisciplinary team, including pharmacy and dietitians, will allow for a more thorough evaluation of the supplement and provide the opportunity for suggestive safer alternatives.

Oncology Dietitians in Ireland: The Current Sphere

In Ireland, a 2019 report by IrSPEN highlighted that the ratio of dietitians to patients is one dietitian per 4,500 oncology patients.35 A recent survey conducted by the Irish Nutrition and Dietetic Institute reported 45.5 whole time equivalent (WTEs) dietitians working across 8 cancer centres and CHI Crumlin, an increase of 7.5 WTE over the last four years.36 In 2020 – 2022, there were 24,207 “life-changing” invasive cancers diagnosed annually, requiring extensive treatment37 meaning the ratio of oncology dietitians to newly diagnosed oncology patients, per year, is 1 to 532. This number does not account for already diagnosed patients, and we can only suspect from the data in 2019, that it is higher. There are 3 WTE dietitians working across non-cancer centres, allocated to Dublin areas.36 Furthermore, the survey reports that 70% of dietitians working in oncology are based in the Dublin areas, and the majority of dietitians are not dedicated to oncology, with a mixed caseload.36 Currently, 87.5% of the cancer centres include dietitians as a core member of the MDT, whilst in the non-cancer centre providers, approximately only one third participate in MDTs.36 Whilst this data is promising, there are currently no dietetic services for the post-treatment phase – why does the supportive care stop?

What Could a National Dietetic Survivorship Service Look Like?

The logical next step for improving care for the post-acute treatment phase is to develop a national dietetic survivorship service. Whilst a referral to a specialist oncology dietitian for a 1:1 appointment may not be necessary for every individual patient, providing evidence-based nutrition information to support long-term health is. A tiered national service could provide the different modalities that cancer survivors, specifically for HR+ breast cancer survivors, may require at different stages of their journey (Fig. 2).

Dietetic interventions for cancer survivors are highly accepted34,38,39 and feasible in a range of modalities.40-50

Telephone consultations have shown to be feasible and effective in oncology weight management research.40,42,44,48,50 The use of virtual consultations has the potential to enhance the reach of dietitians to rural areas, reduce the burden of hospital appointments and increase engagement.

Peer to peer support is considered an important strategy to cancer survivors; and the use of group education enables a supportive environment, whilst capturing more service users and minimizing cost.42 A scoping review analysed n=37 group nutrition education programs and highlighted that group education addressed unmet needs and provided practical and social support.43 Furthermore, combining group nutrition education with other supportive care interventions (e.g. physiotherapy) can improve quality of life and body weight compared to usual care (p<0.01).46 In the Irish setting, cancer survivors surveyed had a first preference for live, online nutrition talks (26.8%) and all recognised a dietitian as the primary source of information.38 The use of print media or online resources provides survivors valued autonomy for dietary information to be read, watched and understood at their own pace.39

Providing survivors with evidence-based information, specific to their diagnosis and treatment plan through targeted resources will work to combat to the epidemic of nutrition misinformation. Sullivan et al.,4 reported that in 1073 Irish cancer survivors, 56% reported feeling “confused” by nutrition information online.

The development of a tiered national dietetic survivorship service, ranging for pre-recorded webinars, to group education, to personalized nutritional counselling will ensure that every cancer survivor has access to evidence-based nutrition information.

It has been well-documented that cancer survivors have the desire for control over their health1,34,52 and if we don’t bridge the knowledge gap, they will bridge it themselves, with potentially harmful information.

Looking Ahead

Dietitians play a crucial role in the supportive care and management of HR+ breast cancer survivors receiving adjuvant endocrine therapy, providing highly specialised and multifaceted interventions. Research is promising, highlighting the positive impact of dietetic interventions in this cohort.

In the effort to bridge this knowledge and service gap, we, the authors, have developed a five-part webinar series titled “Menopause, Diet and Cancer” in collaboration with the Irish Cancer Society, as a free patient resource for this cohort. The webinar series can be accessed on the Irish Cancer Society’s YouTube page.53

Engaging with service users, caregivers, allied health professionals and academic partners is crucial to ensuring a patient-centred survivorship service that works to be both far reaching and effective in nature. Whilst national rates of disease-free survival are increasing, we need to ensure our survivors’ long-term health is supported.

With the cancer care sphere advancing, and survivorship services being developed across the country – we need to ask ourselves why does the supportive care for HR+ breast cancer survivors stop, when the treatment, and its side effects, continue?

References available on request

Acknowledgements:

Ms Jennifer Feighan, CEO, Irish Nutrition and Dietetic Institute

Dr Erin Stella Sullivan, Lecturer in Nutritional Sciences, Kings College London

Written by Ms Katie E Johnston RD, Research Dietitian (Oncology), Cancer Research @UCC, University College Cork and Dr Samantha J Cushen PhD RD, Lecturer in Human Nutrition and Dietetics, School of Food and Nutritional Sciences, University College Cork

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