Breast cancer survivorship among younger patients: challenges and opportunities—narrative review

Introduction

Approximately 7% of breast cancer cases occur in women under the age of 40 years (1). While advancements in cancer treatments have extended the lives of young women with breast cancer (YWBC), many endure long-term trauma and side effects from their untimely diagnosis and aggressive treatments that persist for years after treatment cessation, profoundly impacting their physical and emotional health, and overall quality of life (2).

YWBC survivors face unique physical and psychosocial challenges and generally experience poorer quality of life than their older counterparts (3). Addressing these challenges may improve their overall well-being both during and after treatment and to enhance their ability to fulfill the goals and dreams they had hoped to pursue prior to their diagnosis (4).

Traditionally, survivorship issues largely fell on the treating medical oncology team and were rarely addressed before the completion of surgery and adjuvant chemotherapy. However, the increasingly complex needs of YWBC necessitate a multidisciplinary approach to care right from the time of diagnosis. A specialized program tailored to the unique needs of this demographic can be indispensable in providing comprehensive care. One such program is the PYNK Program for Young Women with Breast Cancer at Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. Such programs aim to ensure YWBC receive appropriate support and resources to manage the physical and emotional consequences of their diagnosis and treatment

The primary aim of this article is to raise awareness among treating clinicians of the common challenges faced by YWBC survivors and to advocate for the implementation of specialized programs tailored to their needs. We present this article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-24-64/rc).

Methods

Articles were retrieved by both authors from PubMed and Medline databases, as well as referenced lists of relevant online literature on young women breast cancer and survivorship needs. Key terms searched include “young women with breast cancer”, “fertility and breast cancer”, “sexual health changes in breast cancer treatment”, “survivorship”. Articles on metastatic breast cancer were excluded. Only studies written in English were included. Articles were dated in the timeframe between 2000–2024. Clinical trials, case reports, case series and articles published in a language other than English were excluded. See summary in Table 1.

Unique challenges faced by YWBC survivors

More aggressive treatment

There has been an alarming unexplained increase in breast cancer incidence in women age 40 years over the last two decades in developed as well as developing countries (5). However, due to the relative rarity of breast cancer (incidence rate of 48.1 per 100,000 in 2019 according to the Breast Cancer Research Foundation) and the lower sensitivity of mammography in this age group, screening for breast cancer is not recommended for the great majority of women under age 40 years (6). Consequently, breast cancer is not diagnosed until it is symptomatic and generally at a more advanced stage than the screen-detected cancers of older women. Higher stage, coupled with biologically more aggressive biology necessitates more aggressive local and systemic therapies resulting in greater short and long-term morbidity. Thus, YWBC are more likely to require mastectomy with optional reconstruction (vs. lumpectomy), axillary node dissection with its 30% risk of permanent lymphedema (vs. sentinel node biopsy alone), radiation (with poorer long-term cosmetic results from breast reconstruction), chemotherapy resulting in ovarian dysfunction, chronic peripheral neuropathy and ‘chemo brain’, immunotherapy (with its myriad of potential chronic toxicities) and prolonged duration of hormonal therapy with significant side effects (7).

An important consequence of such aggressive treatment is that, despite the frequent expectations of partners, friends and family that YWBC will return to their pre-diagnosis physical and emotional state as soon as chemotherapy, surgery and radiation are completed, many YWBC have prolonged and/or permanent sequelae of their treatment. This situation can be a major source of frustration to all involved and, in the case of partners, if not addressed appropriately early on, may lead to the breakdown of the intimate relationship (8).

Fertility and childbearing

Although historically breast cancer survivors were told that pregnancy was contraindicated because it would greatly increase the risk of recurrence, there is excellent data showing the safety of pregnancy after breast cancer which is wonderful news for the 50% of YWBC who have not yet completed their families at the time of diagnosis (9,10).

Unfortunately, systemic breast cancer treatment can permanently impair a woman’s fertility directly via the gonadotoxic effect of chemotherapy and indirectly due to the need to delay pregnancy while on adjuvant hormonal therapy (11). With the ever-increasing use of neoadjuvant chemotherapy, YWBC who have not completed their families are forced almost immediately after diagnosis to consider fertility preservation before initiating treatment. Difficult decisions for the patient include whether to undergo the expense and discomfort of ovarian stimulation and egg harvest (vs. funded but less reliable ovarian suppression), whether to freeze embryos made from partner sperm in the context of an unstable relationship or to freeze her unfertilized eggs, and whether she will always worry that she compromised her chance of cure by delaying chemotherapy by several weeks.

For women who chose not to or were unable to freeze eggs/embryos, natural conception may remain a possibility, particularly for younger women who generally have greater ovarian reserve. Alternatively assisted reproductive technologies, such as in vitro fertilization (IVF) using her own or donor eggs, surrogacy, and adoption are additional options (12). Limited funding in Ontario, Canada for fertility preservation poses a financial barrier for patients, with coverage typically restricted to one IVF cycle post-chemotherapy and out-of-pocket expenses for medications and storage fees (13).

Until recently, women with hormone sensitive [estrogen receptor positive (ER+)] breast cancer were advised to complete at least 5 years of adjuvant hormonal therapy before attempting pregnancy. This often-precluded natural conception or caused women in their late 30s to give up on (further) childbearing as they felt they would be too old at that point for it to be a reasonable option. There is now good news for this subgroup of survivors. Early results of the POSITIVE trial, looking at the safety of interrupting endocrine therapy after 18 to 30 months for up to 2 years in order to attempt pregnancy, show no increase in cancer recurrence compared to a matched historic control group who did not interrupt treatment (14). Although longer follow-up data is pending, this evidence gives both clinicians and patients some confidence.

Any YWBC contemplating having a baby must be willing to consider the possibility of cancer recurrence while she is still caring for an infant, toddler or young child and whether she could count on adequate support in such a case. Balancing risk of cancer recurrence against desire for a baby can be a complex and emotional journey.

Iatrogenic menopause

As a result of adjuvant chemotherapy, most YWBC experience cessation of menstruation which may be temporary, usually resolving within a year of treatment completion, or permanent (7).

Women with ER+ breast cancers are generally prescribed a minimum of 5 years of hormonal (antiestrogen) therapy. While in the past tamoxifen alone was the standard adjuvant hormonal therapy for pre-menopausal women with ER+ cancers, randomized trials show superior survival in all but the lowest risk women with the addition of a gonadotropin-releasing hormone (GnRH) agonists for ovarian function suppression (or bilateral oophorectomy) and generally even better results replacing tamoxifen with aromatase inhibitors (15,16).

The suppression of estrogen production by either chemotherapy or hormonal therapy or inhibition of its downstream effects by tamoxifen can lead to vasomotor symptoms, genitourinary symptoms, and mood changes (7). Menopausal symptoms are often more abrupt, intense, and prolonged in women experiencing acute treatment-induced menopause compared to those undergoing a normal menopausal transition (17).

For patients with hormone-sensitive breast cancer, hormone replacement therapy (HRT) is contraindicated, leaving treatment options limited to lifestyle changes and non-hormonal medications targeting specific symptoms. Unfortunately, the available alternatives are not as effective as HRT, further complicating the management of menopausal symptoms in this population.

For women experiencing premature ovarian failure due to chemotherapy, long-term risks of this early estrogen deprivation include osteoporosis, cardiac disease, and cognitive changes (18). For these reasons, therapeutic oophorectomy is not recommended as adjuvant therapy for YWBC unless done to reduce the risk of early onset hereditary ovarian cancer (e.g., for patients with a germline BRCA1 mutation) (19).

Impaired sexual health

One of the most significant unmet needs of YWBC is the negative impact of the diagnosis and its treatment on sexuality and intimacy (20). Contributing factors include: body image issues (see below); loss of nipple sensation; dyspareunia and loss of libido due to menopause or antiestrogen therapy; and psychological distress. Fatigue from cancer treatment, which can be chronic, can also lower sexual desire (21). Partners may struggle to transition from the roles of patient and caregiver during active treatment back to pre-morbid relationship dynamics. Similarly, for those without partners, navigating the dating scene post-treatment poses challenges, including uncertainties about when and how to disclose their breast cancer history and concerns about body acceptance after treatment.

Unfortunately, these discussions are frequently overlooked during cancer treatment and may not occur during regular oncology appointments, with barriers cited including time constraints, uncertainty about how to address these concerns, the perception that sexuality is a low priority in the context of a life-threatening illness, and discomfort discussing the topic (22). As a result, patients are often left to navigate these issues on their own.

Body image and self-esteem

At baseline, younger patients tend to have concerns about their appearance, weight, and body which may be largely influenced by societal standards and expectations. Body changes resulting from breast cancer treatment can profoundly impact a young woman’s self-esteem, confidence, and sense of identity, both as a woman and a sexual being (23).

Concerns about femininity may arise with the loss or distortion of one or both breasts (24)—even with breast-conserving surgery and radiation, this can alter the appearance and texture of the breast and leave lasting scars as reminders of trauma (25). Women who desire to breastfeed may feel a sense of failure if unable to do so (26). Although studies have shown a positive psychological impact of breast reconstruction after mastectomy (27), long-term complications include implant capsular contraction or rupture, asymmetry, and diminished sensation of the reconstructed breast. There is a growing interest in aesthetic flat closure as an acceptable alternative (28). Hair loss due to chemotherapy or thinning on endocrine therapy, as well as weight gain, further contribute to the negative body image experienced by many YWBC.

Fear of recurrence

YWBC report greater psychological distress, particularly anxiety and depression, compared to their older counterparts (29,30). Fear of recurrence is notably more intense in younger women with prevalence rates reaching as high as 70%, resulting in a significant negative impact on their quality of life (31). Mothers of children under age 18 years tend to experience heightened fear of recurrence, regardless of their age or age of their children (32).

Genetics

While fewer than 5% of breast cancer patients have a germline mutation predisposing them to develop breast and other cancers, 20% of YWBC have such mutations, often without an obvious family history of cancer (33). The most common mutations are in the genes BRCA1 or BRCA2 but genetic testing panels of 19 or more genes are now revealing other pathogenic inherited mutations, each presenting an increased risk of future breast cancers and other malignancies (34). YWBC found to have such a mutation are confronted with difficult choices such as choosing between bilateral mastectomies and its potential impact on sexuality and body image, or intensive surveillance in the hope that a future cancer will be detected at a curable stage. For YWBC, the need to undergo bilateral salpingo-oophorectomy by age 40 years for BRCA1 mutation carriers and by age 45 years for BRCA2 mutation carrier with HRT contraindicated (at least for those who had ER+ cancers) exposes these women to the major side effects of an abrupt premature menopause and to its long-term health risks.

Feeling of isolation from peers

Ironically, the unique challenges faced by YWBC can create barriers to social connection with peers at a time when these patients could greatly benefit from peer support. YWBC may find it difficult to relate to healthy peers who are typically focused on education, career advancement or starting families rather than health challenges and the threat of early mortality (35,36). This divergence in life priorities can lead to feelings of isolation, alienation and loneliness. Post-treatment side effects and emotional distress, often compound this problem by limiting the ability of YWBC to engage in social activities. Conversely, YWBC may experience “cancer ghosting”, i.e., a sudden and unexplained disappearance or emotional withdrawal of friends, family members, or acquaintances from their lives due to discomfort, fear, or a lack of understanding about how to support the person with cancer (37,38). This may lead to feelings of abandonment and further isolation.

Cancer related financial toxicity

A breast cancer diagnosis frequently results in significant financial toxicity for working women due to reduced income and increased costs (39). This financial toxicity is particularly marked for YWBC because of their generally more limited savings and greater fixed expenses such as mortgages and child support.

Most YWBC stop working or reduce their work hours during active treatment. A fledgling small business may have to close temporarily or permanently. Partners may also lose work hours if they need to take on more household and child care tasks. Upon active treatment completion, returning to full-time work (assuming their job is still available) can be overwhelming for YWBC, especially if they are suffering from chronic physical or emotional symptoms. They may also face stigma in the workplace due to their cancer history.

Even in a country like Canada with universal health care coverage, there are significant out-of-pocket health care expenses including hormonal treatments, vitamin D supplements, vaginal moisturizers, breast prostheses, and psychotherapy, further exacerbating financial strain for this vulnerable population.

Benefits of a specialized program

The PYNK Program for Young Women with Breast Cancer at Sunnybrook Health Sciences Centre in Toronto, launched in 2008, was the first program of its kind in Canada and among the world’s earliest endeavors to cater specifically to the distinctive supportive care and educational needs of women diagnosed with breast cancer at age 40 years and younger receiving treatment at this hospital (40). The program integrates clinical care, navigation services and research aimed focusing on this population (41). The founding executive group included representation from medical, radiation, and surgical oncology, family medicine, nursing, psychology and social work along with YWBC survivors, the latter remaining on the executive to the present day.

At the heart of the program is the patient navigator, a healthcare professional who follows the patient from the time of diagnosis through active treatment and survivorship until she is discharged from the cancer centre or passes away with metastatic disease. The navigator provides coordination of complex care between the three treating specialists (medical, surgical and radiation oncology) and give ‘whole picture’ overview of treatment, providing YWBC with realistic expectations.

Furthermore, the program’s social worker brings invaluable expertise in understanding the distinct needs of YWBC patients, particularly regarding the impact of cancer treatment on employment and finances. Beyond assisting patients with practical needs, the social worker provides education on effective coping techniques and co-facilitates peer support groups within the PYNK program, fostering a supportive environment for patients to connect and share experiences.

In addition to their roles in patient support, both the patient navigator and social worker serve as patient educators, equipping patients with the knowledge and tools they need to navigate their cancer experience with confidence and resilience. Accessible through self-referral or physician referral for specific concerns, the PYNK program exemplifies a comprehensive and patient-centered approach to supporting young women with breast cancer. Please see Table 2 for overview.

Tailored survivorship and education

The goal of specialized programs in survivorship care is to personalize care unique to patient’s needs. Survivorship care emphasizes the importance of self-management and active participation in healthy lifestyle choices (42). Early provision of information allows YWBC to anticipate and prepare for potential symptoms, coping better when they know what to expect and have tools to prevent and actively manage symptoms such as vaginal dryness. Counseling and education in the PYNK program play a crucial role in managing expectations and promoting proactive symptom management. Adherence to breast cancer treatment is lower among younger patients (43,44) and perhaps may be enhanced when side effects are effectively managed. While patients may request an in-person or virtual visit from the navigator at any time, the navigator will proactively contact patients at specific points in time including: time of initiation and 2 to 3 months after initiation of a new adjuvant therapy, a few months after return to work, and at the time of diagnosis of disease recurrence. Outside these specific points in time patients are periodically assessed for: adherence to medication and lifestyle recommendations; common treatment symptoms; psychological well-being; and extent to which physical function, work and relationships have returned to their pre-diagnosis state. YWBC who harbour a genetic mutation are also provided general counselling on risk reduction. Overall, the PYNK program takes a proactive approach in addressing patient needs utilizing specialists and community resources in their referral network (Table 3). Along with general recommendations, individualized strategies are employed to meet patients’ unique goals and preferences.

Iatrogenic menopause symptom management

The PYNK program adheres to evidence-based guidelines, such as those provided by the North American Menopause Society (NAMS), to inform symptom management strategies and ensure optimal patient care (45). Specific interventions for managing vasomotor symptoms are outlined, including trigger avoidance, cognitive-behavioral therapy (CBT), and escalating therapy with selective serotonin reuptake inhibitors (SSRIs), such as venlafaxine. Physical activity has been shown to improve mood, treatment related fatigue, cognitive functioning and vasomotor symptoms (46). Virtual exercise programs offer accessible options for patients requiring social accountability to initiate physical activity. Other healthy behaviours include smoking cessation and decreasing alcohol intake. The role of the PYNK program is to assess patients of these symptoms and inform about non-hormonal management recommendations. If medication intervention is required, then the program will recommend seeing their family doctor or facilitate a referral to a menopause specialist.

Body image, sex and intimacy education and support

Sexual health and intimacy education are one of the largest unmet needs in cancer survivorship in general (21). The PYNK program prioritizes supporting YWBC with sexuality and intimacy issues after treatment. Normalizing the experiences of patients and fostering open discussions about sexuality in a safe environment are essential components of the program. This can help reduce feelings of isolation and encourage open communication about concerns. Patients’ decision or preference for certain surgical treatments is also validated and supported, such as aesthetic flat closure instead of reconstruction.

Huynh et al. [2022] surveyed breast cancer patients regarding how they would like information on sexual health (47). Few women reported receiving information about potential effects of breast cancer treatment on sexuality. Patients desired education early on and discussed often throughout their treatment with emphasis on in-person options and support groups.

The patient navigator offers education on treatment expectations, side effects, and potential complications, including physical and emotional symptoms. Counseling is provided to address sexual health changes, with a focus on practical interventions such as the use of vaginal moisturizers, lubrication, and techniques to enhance vaginal blood flow.

For those experiencing sexual pain, a multidisciplinary approach involving early involvement of pelvic floor physiotherapists is recommended. In cases of severe symptoms, referral to a gynecologist for discussions on options like local low-dose estrogen or dehydroepiandrosterone (DHEA) can be beneficial. Additionally, patients dealing with low libido, body image concerns, or changes in romantic relationships may benefit from seeing a sex therapist well-versed in cancer and relationship dynamics.

The program emphasizes access to support resources, including support groups and educational materials, to help patients navigate these intimate challenges with confidence. Support resources available to patients include books, podcasts, webinars with expert speakers focused on sexual health and intimacy after breast cancer.

Fertility preservation options and support

Patients enrolled in the PYNK program are informed about the impact of breast cancer treatment on fertility at the time of diagnosis. Liaising with a local oncofertility specialist, patients are offered an expedited referral and consult to assess ovarian reserve and fertility preservation options prior to systemic treatment. The desire and timing for pregnancy is continually assessed through her survivorship journey.

While it is increasingly common for YWBC to receive pre-treatment discussions with oncofertility specialists, some patients may miss this opportunity due to treatment timing; however, post-treatment discussions are equally important, ensuring support for family planning decisions, whether through natural conception or assisted reproductive technology.

Additionally, the program recognizes that building a family extends beyond carrying one’s child and biological children. Thus, surrogacy and adoption options are also brought up. By integrating these elements, the program empowers YWBC patients to make informed decisions about their fertility and family planning goals.

Psychosocial support and counseling

Some promising interventions aimed at reducing psychological distress such as fear of recurrence, body image concerns and relationship concerns include psychotherapy [cognitive behavioural therapy (48,49), acceptance and commitment therapy (50), mindfulness awareness (51)]. As part of the PYNK program’s longitudinal assessment is to flag those at risk for unresolved fear of recurrence and refer to mental health specialists internally or externally for intervention.

Well organized peer support groups for this population can significantly enhance their quality of life by providing a safe space to meet others going through a similar journey. Patients usually use peer support activities for exchanging information and normalizing their experience to combat feelings of isolation (52). However, challenges include information confusion given the individualization of breast cancer treatment based on breast cancer characteristics and personal patient decisions. PYNK facilitates two peer supports groups lead by the patient navigator and social worker: one for newly diagnosed breast cancer patients and one for metastatic breast cancer patients.

Lastly, PYNK provides general information on how to talk to children about cancer. Studies have shown that parents significantly underestimated the psychological impact of their illness diagnosis on their children (53). Children worry more when information is not shared. Sharing the diagnosis allows parents to maintain trust and positive effects on building copings skills and resilience (54). PYNK screens YWBC mothers who may benefit from connecting with a Child Life Specialist for additional support when dealing with their children’s feelings and reactions.

Career and financial navigation

The social worker in the PYNK program plays an important role in supporting YWBC in providing valuable support in navigating return to work and financial strain related to cancer treatment.

The social worker assists patients in developing strategies for a successful return to work after cancer treatment. This may include offering guidance on gradually reintegrating into the workforce, managing potential physical or emotional limitations, and advocating for workplace such as flexible work arrangements, modified schedules, temporary disability accommodations or leave options.

Social workers can also help patients access financial assistance programs, such as government benefits, charity organizations designed to support cancer patients financially, and exploring options for managing out-of-pocket expenses.

Lastly, social workers offer counseling and emotional support to help patients cope with the stress and anxiety associated with financial challenges. They can also provide guidance on managing emotions related to career transitions and uncertainties about the future.

Impact of specialized programs such as PYNK in young women’s breast cancer survivorship

In 2016, a study was completed to assess patient satisfaction with PYNK: Breast Cancer Program for Young Women. The study reported that over 90% of patients surveyed were satisfied or very satisfied with the information, support, and care provided, which indicates a high level of patient satisfaction with the program (55). Patients in the PYNK program have routine discussions about fertility issues, which contrasts with the low rates of health-care-initiated discussions reported in the literature.

One of our PYNK patients recently wrote to us: “I really want to say how grateful I am that such a program exists. Being part of the PYNK program was the best thing to happen to me. I was feeling lost and overwhelmed with tests. The PYNK navigator was able to explain things to me in a way I understand and if I’m feeling anxious and email, they are always quick to respond.”

Since the inception of PYNK, Princess Margaret Cancer Centre has started a non-disease site specific program for Adolescents and Young Adults with Cancer and several other disease sites within Sunnybrook Health Sciences Centre have started their own young adult cancer programs (specifically colorectal cancer, gynecologic oncology and complex malignant hematology). Additionally, in 2023, PYNK expanded its supportive care services to two additional cancer centers in Ontario. This expansion is a positive development, reflecting the growing recognition of the unique support needs of young women with breast cancer.

Further improvements to the program may include how to better integrate it within existing healthcare systems, as not all physicians utilize the program. Additionally, since each young patient has unique needs, not all individuals may readily accept the involvement of the PYNK program in their care. The patient navigator and social worker also need to actively seek out community programs and support services tailored for immigrants who may not speak English as their first language, marginalized individuals, or those belonging to visible minority groups, in order to better serve these populations. These programs may not focus on young patients specifically but offer a connection to a familiar community. In addition, written materials, seminars and videos addressing these special populations should be added to the PYNK virtual library.

Conclusions

Young women diagnosed with breast cancer face unique physical, emotional, and psychosocial challenges in survivorship. Specialized programs, such as PYNK, aim to address the multifaceted and complex needs of this population. These programs can greatly empower YWBC patients to navigate their survivorship journey towards recovery and resilience. However, like many supportive care programs, the limitation lies in resource availability and funding for sustainability. In the current area of tight healthcare budgets, external funding and philanthropy are essential to support the infrastructure of these programs. Ongoing research is required to better understand the needs of YWBC patients in survivorship and ensure sustainability of programs designed to address these challenges.

Acknowledgments

Funding: None.

Footnote

Provenance and Peer Review: This article was commissioned by Guest Editors (Muna Alkhaifi, Charles Simone, Maryam Lustberg, Isabelle Choi, Henry Wong and Elwyn Zhang) for the series “Supportive Care After Breast Cancer: Challenges and Opportunities” published in Annals of Palliative Medicine. The article has undergone external peer review.

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-25-64/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-64/prf

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-64/coif). The series “Supportive Care After Breast Cancer: Challenges and Opportunities” was commissioned by the editorial office without any funding or sponsorship. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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