Patient experience of menopause care after breast cancer in the UK: a cross-sectional study

Abstract

Objectives:

This study aimed to explore women's experience of menopause care after breast cancer in the UK.

Methods:

An online survey incorporating the validated Shared Decision Making SDM-Q-9 questionnaire was disseminated via social media to breast cancer survivors in the UK.

Results:

A total of 1,195 women completed the survey. The menopause symptom burden was high (99.7%). Fear of recurrence was the dominant concern for 55.6% of women, but 44.4% were more concerned about quality of life and future risk of long-term conditions associated with estrogen deficiency. Women further from diagnosis were less concerned about recurrence (fear of recurrence was the dominant concern for 58.6% of women within 2 y of diagnosis vs. 43.1% of women more than 15 y from diagnosis, P = 0.001). Of all women, 68.3% were offered treatment (nonhormone treatment, 58.5%; vaginal hormones, 35.5%; menopause hormone therapy, 13.1%; testosterone, 10.1%). Menopause specialists were more likely to prescribe MHT versus nonmenopause specialists (68.2% vs. 31.8%, P < 0.0001); GP menopause specialists were more likely to prescribe testosterone versus gynecologist menopause specialists (60.8% vs. 39.2%, P < 0.0001). Of all women, 49.6% who were not offered menopause hormone therapy were willing to consider it, and 83.7% wanted more information about menopause hormone therapy. Information provision and time allocated to menopause-related discussion were poor (<10 min for 73.52% of women). Involvement in menopause-related treatment decisions was low (SDM-Q-9 median score, 11.1/100; IQR, 0.0-28.9). Women who consulted a menopause specialist (30.2%) were significantly more able to discuss their concerns (P < 0.001), were given significantly more time (>10 min for 75.6%, P < 0.001), and felt significantly more involved in menopause-related treatment decisions (P < 0.001). Overall, 96% of women wanted more support for menopausal symptoms.

Conclusions:

Many women in the study cohort had unmet menopause-related health needs after breast cancer, and the quality of menopause care received was poor. Most women felt uninvolved in menopause-related treatment decisions. Women experienced higher quality menopause care if they had access to a menopause specialist.

Most women diagnosed with early-stage breast cancer today can expect to survive long-term.¹ There are currently around 700,000 breast cancer survivors in the UK,² and this number is predicted to reach 1.7 million by 2040.³ Approximately one in five women are premenopausal at diagnosis.⁴ There are therefore around 140,000 women in the UK who were premenopausal when diagnosed with breast cancer and who have experienced, or will experience, menopause during or after receiving treatment for breast cancer.

Chemotherapy and adjuvant endocrine treatment (AET) for estrogen receptor–positive (ER-positive) disease improve breast cancer survival^5,6 but increase the risk of early menopause⁷ and are associated with more frequent and/or severe menopausal symptoms compared with natural menopause.⁸ AET can also cause and/or exacerbate menopausal symptoms in postmenopausal women,⁹ especially if menopause hormone therapy (MHT) initiated before breast cancer diagnosis is discontinued.¹⁰ Severe menopausal symptoms cause considerable distress^11,12 and reduce AET adherence^13,14 but can be difficult to treat because MHT, the most effective treatment for menopausal symptoms, is usually contraindicated after breast cancer.¹⁵ Consequently, nonhormone treatments (NHT) are recommended including lifestyle advice, cognitive behavioral therapy (CBT), acupuncture, vaginal moisturizers for genitourinary symptoms, and antidepressants for vasomotor symptoms.¹⁶ Some women, such as those with a low risk of relapse and/or severe menopausal symptoms that fail to improve with NHT, may use MHT if the benefits are considered to outweigh the risks.¹⁷

International guidelines emphasize the need for high quality survivorship care and recommend that patients with oncological treatment-induced symptoms and comorbidities, including those resulting from long-term iatrogenic estrogen deficiency, receive appropriate information and support.^18–20 However, limited evidence suggests that many breast cancer survivors feel unprepared for the severity of menopausal symptoms,^12,21,22 unsupported,^12,21,23,24 and dissatisfied with the quality of their menopause care.^11,24,25

The aim of this study was to gain a deeper understanding of women's experience of menopause care after breast cancer in the UK. Patient experience is a healthcare quality indicator,²⁶ and positively correlates with improved clinical outcomes.²⁷ Shared decision making (SDM), a process in which clinicians and individuals work together to select tests and treatments based on evidence and the individual's informed preferences is a key determinant of patient experience.²⁸ Our primary objective was to determine whether women feel involved in menopause treatment decisions in line with SDM guidelines that emphasize the importance of patient-centered care.^29,30 Secondary aims were to measure the menopausal symptom burden (symptom prevalence, type, severity), explore breast cancer survivors' health concerns, determine whether women are receiving sufficient support for menopausal symptoms after breast cancer (access to care, information provision, treatment received), and explore women's attitudes about MHT after breast cancer. We hope that a deeper understanding of patient's unmet needs and preferences will inform better menopause care for breast cancer survivors in the future.

METHODS

Participants

Adult women with a history of breast cancer were invited to complete an online survey administered via social media between August 1 and October 20, 2023 (Supplemental Digital Content S1, http://links.lww.com/MENO/B343). Eligibility criteria for inclusion were as follows: past or current history of breast carcinoma in situ or invasive breast cancer, aged ≥18 years, UK resident, treated for breast cancer in the UK, and English speaking.

Data collection

The survey consisted of a patient information sheet, a consent form, and 67 questions organized into five domains: (A) demographics (4 items), (B) details of breast cancer diagnosis and treatment (11 items), (C) menopausal symptoms and concerns (24 items), (D) quality of care including shared decision making (14 items), and (E) menopause treatment including attitudes toward MHT (14 items).

Section D incorporated the 9-item Shared Decision-Making Questionnaire (SDM-Q-9), a reliable validated questionnaire that measures the extent to which patients are involved in decision making.³¹ The SDM-Q-9 consists of nine statements, each with a 6-point Likert scale rating responses from “completely disagree” (0) to “completely agree” (5), overall score 0 to 45. Scores were multiplied by 20/9 to provide transformed scores ranging from 0 (not involvement in SDM) to 100 (fully involved in SDM).

The survey was advertised on menopause and breast cancer charity social media sites (Appendix). Women wishing to participate clicked on a link to the survey. Participants were required to confirm that they had read and understood the patient information and give digital consent before starting the survey. All survey responses were anonymized. Data were collected using Qualtrics (www.qualtrics.com), an online survey platform.

Data analysis

Statistical analysis was performed using R 4.3. Continuous data were summarized using the mean ± SD, or median and interquartile range (IQR). For categorical data, counts and percentages were used. Analysis for categorical data was performed using χ² test of independence. A signed rank test was used to compare involvement in shared decision making before versus after consulting a menopause specialist. Hypothesis testing was performed at 5% level of significance.

Ethics

All participants signed an e-consent form before accessing the survey. Participants were advised that, if they changed their mind and wished to withdraw, they could do so by simply closing their browser window. Incomplete responses were excluded.

The study was approved by the University College London (UCL) Research Ethics Committee (ID 9093/005). A copy of the study protocol was registered on the ISRCTN database (ISRCTN13759134) and on the Cancer Research UK Clinical Trials Database.

RESULTS

A total of 1,377 women responded to the survey. One hundred eighty-two responses were excluded on the grounds of non-UK resident (n = 10) or incomplete (n = 172), leaving a sample size of N = 1,195. Patient demographics are presented in Table 1. A total of 722 respondents (60.4%) were within 5 years of diagnosis. Eight hundred sixty-nine (72.7%) had received AET. Five hundred fifty-six women (46.5%) were premenopausal at diagnosis; only 7 (0.6%) were premenopausal at the time of survey completion. Six hundred forty-six women (54.1%) had been discharged from hospital care.

TABLE 1.

Demographics of survey respondents

Characteristic	N (%)
Ethnicity
Asian or Asian British	12 (1.0)
Black or Black British	2 (0.2)
White British, Irish or Other	1,161 (97.0)
Chinese	0 (0.00)
Mixed	19 (1.6)
Other a	3 (0.3)
Place of residence
Southwest England	153 (12.8)
Southeast England	223 (18.7)
Greater London	91 (7.6)
East of England	92 (7.7)
West Midlands	109 (9.1)
East Midlands	65 (5.4)
Yorkshire and Humber	28 (2.3)
Northwest England	149 (12.5)
Northeast England	81 (6.8)
Ireland	45 (3.8)
Scotland	98 (8.2)
Wales	50 (4.2)
Other b	11 (0.9)
Educational background
Doctorate degree (PhD)	35 (2.9)
Master's degree	152 (12.7)
Bachelor's degree	420 (35.2)
Trade/technical/vocational training	100 (8.2)
High school/College graduate, diploma or equivalent	236 (19.8)
High school qualification such as GCSEs or O-Levels	217 (18.2)
Prefer not to say	34 (2.9)
Other	1 (0.1)
Age at breast cancer diagnosis
<30	26 (2.2)
31-40	182 (15.2)
41-50	555 (46.4)
51-60	397 (33.2)
61-70	33 (2.8)
>71	2 (0.2)
Time since breast cancer diagnosis
0-2 y	366 (30.6)
2-5 y	356 (29.8)
5-10 y	265 (22.2)
10-15 y	140 (11.7)
>15 y	68 (5.7)
Type of breast cancer
DCIS	247 (20.1)
LCIS	33 (2.8)
ER-positive invasive breast cancer	595 (49.8)
ER-negative invasive breast cancer	108 (9.0)
More than 1 type/mixed	180 (15.1)
Not sure	32 (2.7)
Breast cancer treatment received
Type of surgery
Breast conserving surgery	726 (60.8)
Mastectomy	469 (39.3)
Radiotherapy
Yes	904 (75.7)
No	291 (24.4)
Chemotherapy
Yes	526 (44.0)
No	669 (56.0)
Adjuvant endocrine therapy
Yes	869 (72.7%)
No	326 (27.3%)
Ovarian function suppression
Yes	200 (16.7%)
No	995 (83.3%)
Menopausal status at diagnosis
Premenopausal	556 (46.5%)
Perimenopausal	346 (28.9%)
Postmenopausal	229 (19.2%)
Not sure	64 (5.4%)
Current menopausal status
Premenopausal	7 (0.6%)
Perimenopausal	317 (26.5%)
Postmenopausal	809 (67.7%)
Not sure	62 (5.2%)

DCIS, ductal carcinoma in situ; ER, estrogen receptor; GCSE, General Certificate of Secondary Education; LCIS, lobular carcinoma in situ.

^a Three participants defined their ethnicity as Anglo-Jamaican (n = 1), White Jewish (n = 1), and European (n = 1).

^b Participants residing in the Channel Islands (n = 5), the Isle of Man (n = 1), and the Isle of Wight (n = 3), and two participants whose place of residence could not be determined (South Central and North England) were coded as other.

Menopause symptoms and quality of life (QOL)

A total of 886 women (74.1%) stated that their cancer treatment triggered an early/earlier menopause (n = 496, 41.5%) or worsened preexisting menopausal symptoms (n = 390, 32.6%).

A total of 1,192 women (99.7%) reported at least one symptom they attributed to menopause (physical n = 1,150, 96.2%; psychological n = 1,008, 84.4%; genitourinary n = 847, 70.9%). In addition, 1,118 women (93.6%) described their menopausal symptoms as moderately severe (n = 565) or severe (n = 553). Of all women, 78.7%, 61.1%, and 50.4% stated that their symptoms had a moderate-to-extremely severe impact on their QOL, relationships, and ability to work, respectively (impact score of 4, 5, or 6 on a 6-item Likert scale) (Fig. 1).

FIG. 1.

Impact of menopausal symptoms after breast cancer. Women were asked “on a scale from 1 to 6, how much have your symptoms that you relate to menopause impacted your quality of life, work and relationships” (1, not at all; 2, minimal; 3, mild; 4, moderate; 5, severe; 6, extremely severe). Green indicates no impact (score 1); red indicates there was an impact (scores 2-6).

Adherence and persistence to adjuvant endocrine treatment (AET)

A total of 869 women (72.7%) were previously prescribed (n = 353) or currently taking (n = 516) tamoxifen or an AI.

One hundred seventeen of 232 women (50.43%) recommended to take AET for 5 years completed the full course of treatment, compared with 40 of 121 women (33.06%) recommended to take AET for 10 years (Fig. 2). Persistence (continuing treatment for the prescribed duration) was significantly lower in women recommended AET for 10 years versus 5 years (P = 0.003).

FIG. 2.

Persistence with adjuvant endocrine therapy (AET, aromatase inhibitors or tamoxifen) in women previously prescribed AET and advised to continue treatment for 5 or 10 years.

“Unable to tolerate side effects” was the most common reason for discontinuing AET early (68.4% of past users), followed by “not worthwhile” (low risk of recurrence +/− severe side effects; 13.2%). Other reasons were change of treatment plan (due to recurrence, 2.1%; endometrial hyperplasia/cancer, 3.2%; unspecified, 3.7%), wanting to start a family (3.7%), forgetting (1.1%), dislikes taking medication (2.6%), and “other” (2.1%).

Among current users, AET adherence was high; 93.4% reported taking their medication every day more than 90% of the time.

Health concerns

When asked about their health concerns, 1,007 women (84.3%) were concerned about their risk of breast cancer recurrence, 916 women (76.7%) were concerned about menopausal symptoms/current QOL, and 809 women (67.7%) were concerned about their future risk of long-term conditions (LTC) associated with menopause. Among women with future health concerns (n = 809), osteoporosis was the LTC most likely to concern women (70.0%), followed by dementia (64.3%), heart disease (53.8%), and GSM (34.6%).

When asked what they were most concerned about, 664 women (55.6%) stated that fear of recurrence was their dominant concern, but 337 women (28.2%) were more concerned about menopausal symptoms and current QOL, and future LTC was the dominant concern for 194 women (16.2%).

When stratified by age, fear of recurrence was more often the dominant concern for younger women, but there was no significant difference between age categories (recurrence was the dominant concern for 61.5% of women aged 31-40 y vs. 56.2% of women aged 41-50 y vs. 53.4% of women aged 51-60 y, P = 0.19). Women further from diagnosis were significantly less likely to be concerned about recurrence and more likely to be concerned about their QOL and risk of LTC, versus recently diagnosed women (the percentage of women most concerned about risk of recurrence decreased from 58.6% of women within 2 y of diagnosis to 43.1% of women more than 15 y from diagnosis, P = 0.001) (Fig. 3 and Supplemental Digital Content S2, http://links.lww.com/MENO/B343).

FIG. 3.

Women's dominant health concerns according to age at breast cancer diagnosis (31-40 y, 41-50 y, and 51-60 y) and number of years since diagnosis.

Treatment received for menopausal symptoms

Treatment received for menopausal symptoms is presented in Figure 4. A total of 427 women (35.7%) had been offered lifestyle advice and/or tried complimentary medicine or CBT.

FIG. 4.

Treatment received for menopausal symptoms. Complimentary medicine includes acupuncture, reflexology, and homeopathy. Vaginal estrogen includes vaginal pessaries (23.7%), vaginal estrogen cream (10.0%), and the Estring (0.9%). MHT, menopause hormone therapy; DHEA, dehydroepiandrosterone.

A total of 816 women (68.3%) were offered treatment, mainly nonhormone treatment (n = 699, 58.5%). Four hundred twenty-four women (35.5%) received vaginal hormones, mainly vaginal estrogen. One hundred twenty women (10.1%) received systemic testosterone, and 156 women (13.1%) received MHT (estrogen with or without a progestogen).

Menopause specialists were significantly more likely to prescribe MHT and testosterone versus nonmenopause specialists (MHT: 68.2% of prescriptions vs. 31.8% of prescriptions, respectively [P < 0.0001]; testosterone: 87.4% of prescriptions vs. 12.6% of prescriptions, respectively [P < 0.0001]). GP and gynecologist menopause specialists were equally likely to prescribe MHT (50.1% of prescriptions vs. 49.2% of prescriptions, respectively; P = 0.86), but GP menopause specialists were significantly more likely to prescribe testosterone (60.8% of prescriptions vs. 39.2% of prescriptions, respectively; P = 0.03) (Fig. 5).

FIG. 5.

Clinicians prescribing MHT and/or testosterone for breast cancer patients. MHT, menopause hormone therapy; GP, general practitioner.

Patient attitudes concerning MHT after breast cancer

A total of 316 of 320 women using MHT when diagnosed with breast cancer (98.8%) were advised to discontinue MHT. Since diagnosis, 892 of 1,195 women (74.6%) were advised never to take MHT and/or refused MHT.

A total of 156 women (13.1%) were using or had used MHT since their breast cancer diagnosis. Reason(s) given were to alleviate physical menopausal symptoms (n = 145, 93%), to relieve psychological symptoms associated with menopause (n = 130, 83%), to prevent osteoporosis (n = 89, 57%), and to decrease the risk of ischemic heart disease (n = 69, 44%).

A total of 1,039 women (86.9%) were not using or had not used MHT. Among women who had not used MHT, 515 women (49.6%) stated that they would use MHT if the benefits outweighed the risks in their individual case, and 322 (31.0%) were not sure (needed more information). One hundred fifty-two women (14.6%) stated that they would not consider MHT, mainly due to fear of recurrence (n = 137, 90.1%), and/or the negative opinion of their physician (n = 28, 18.4%), fear of side effects (n = 13, 8.6%), or because they had minimal symptoms (n = 15, 9.9%).

Overall, 1,000 women (83.7%) wanted more information about the pros and cons of menopause hormone therapy (MHT) after breast cancer.

Quality of care including shared decision making

A total of 1,077 women in the cohort received chemotherapy and/or AET. At diagnosis, when treatment was being discussed and planned, 76.9% of women could recall being counseled about the benefits of breast cancer treatment (reduced risk of relapse, improved survival), but only 49.6% could recall being advised that breast cancer treatment might induce an early menopause or more severe menopausal symptoms, and only 35.7% could recall being told that their treatment might have future health risks such as osteoporosis. Women were significantly more likely to be counseled about the benefits of treatment than the short-term (P < 0.001) or long-term harms (P < 0.001).

At diagnosis, 229 of 1,077 women (21.3%) treated with chemotherapy and/or endocrine therapy could recall being provided with written information about menopause after breast cancer, mainly by the breast cancer nurse specialist (n = 175, 16.2%). Thirty-five women (3.2%) received written information about menopause from their oncologist, and 14 women (1.3%) were given an information leaflet by their breast surgeon.

A total of 1,190 women had accessed information about menopause after breast cancer. The internet was the most frequently used information resource (83.5%). Other sources included social media (n = 646, 54.3%), books (n = 496, 41.7%), friends and family (n = 443, 37.2%), podcasts (n = 438, 36.8%), TV (n = 252, 21.2%), colleagues (n = 174, 14.6%), and allied health care professionals such as a nutritionist or alternative medical practitioner (n = 108, 9.1%). Four hundred fifty-six women (38.3%) had received information from a health care professional, with 119 women (10.0%) stating that their doctor or nurse had been the main source of menopause information.

A total of 1,061 women had menopausal health concerns while still under the care of their breast specialist team. Three hundred ten women (29.2%) felt “very much” or “somewhat” able to discuss their concerns, 361 women (34.0%) felt “briefly” able, and 390 women (36.8%) “did not feel able” to discuss their concerns with their breast specialist team (surgeon, oncologist, breast specialist nurse) (Fig. 6A). Similarly, of 1,140 women who had consulted their GP or practice nurse, 338 (29.6%) felt “very much” or “somewhat” able, 375 (32.9%) felt “briefly” able, and 397 (34.8%) felt unable to discuss their concerns. Among 627 women who discussed menopause-related health concerns with their breast specialist, discussions lasted less than 10 minutes for 461 women (73.52%) and less than 30 minutes for 599 women (95.5%). Among 726 women who consulted their GP or practice nurse, discussions lasted less than 10 minutes for 542 women (74.7%) and less than 30 minutes for 708 women (97.5%) (Fig. 6B).

FIG. 6.

(A) The percentage of women who felt very able, somewhat able, briefly able, and unable to discuss their menopause-related health concerns with their breast specialist team, primary care team, and menopause specialist (if they had consulted a menopause specialist). (B) Time allocated to discussing menopause-related health concerns.

A total of 361 women (30.2%) had consulted a menopause specialist since their breast cancer diagnosis (NHS menopause specialist, 13.1%; private menopause specialist, 11.7%; both NHS and private, 3.9%; not specified, 1.1%).

A total of 285 women (79.0%) felt “very much” or “somewhat” able to discuss their menopausal health concerns with their menopause specialist. Menopause-related discussions lasted more than 10 minutes for 273 women (75.6%) and more than 30 minutes for 152 women (42.1%) (Fig. 6A, B). Women were significantly more able to discuss their menopause-related health with a menopause specialist compared with a breast cancer specialist (P < 0.001) or their GP (P < 0.001) and were given significantly more time to discuss their concerns (P < 0.001).

Overall, women did not feel involved in their menopause-related treatment decisions (Fig. 7). The median SDM-Q-9 score was 11.1 on a scale from 0 to 100 (IQR, 0.0-28.9). Between 80% and 93% of women disagreed with each SDM statement. Between 48% and 64% of respondents completely disagreed with each statement. Women were most likely to be involved in discussions about their different treatment options (20% of women) but least likely to be asked which treatment option they preferred (7% of women).

FIG. 7.

The extent of involvement in shared decision-making in menopause related treatment decisions measured using the SDM-Q-9 questionnaire. Red indicates “uninvolved” (score 0, 1, or 2); green indicates “involved” (score 3, 4, or 5). SDM-Q-9, Shared Decision Making Questionnaire.

Overall, 85.6% of women who had not consulted a menopause specialist did not feel involved in decisions pertaining to their menopause-related health, including 51.4% of women who felt completely uninvolved.

Among women who had consulted a menopause specialist, the percentage of women who felt involved in menopause-related treatment decisions increased from 12.3% before to 71.7% after, including 40.8% of women who felt completely involved (Fig. 8). Women felt significantly more involved in decisions pertaining to their menopause-related health after consulting a menopause specialist (P < 0.001).

FIG. 8.

Level of involvement in menopause treatment decisions before and after consulting a menopause specialist. Respondents were asked to rate their level of involvement using a 6-item Likert scale (1, completely uninvolved; 6, completely involved).

Overall, 96% of women stated that they would have welcomed more support for menopausal symptoms after their breast cancer diagnosis.

DISCUSSION

The menopause symptom burden in the study population was high, causing many women to discontinue adjuvant endocrine treatment prematurely despite its proven benefits. In addition, 99.7% of women reported at least one menopausal symptom, compared with 79% to 95% of breast cancer survivors in previous studies.¹⁶ The high symptom prevalence in the current study may reflect a degree of self-selection bias, because women are more likely to participate in a survey about menopause care if they are highly symptomatic. Half of women recommended to take AET for 5 years discontinued treatment prematurely, consistent with nonpersistence rates of 31% to 73% reported in the literature.¹³ Persistence to 10 years was significantly lower at 33%. There is very limited real-world data concerning AET 10-year persistence, but a thematic analysis of threads posted by AET users in an online forum found that 56% of women were reluctant to continue treatment beyond 5 years, mainly because they wished to avoid prolonging side effects and wanted a better QOL.³² High adherence in current AET users (93%) suggests that women were highly motivated to take AET despite moderate to severe menopausal symptoms, until they were unable to tolerate the side effects any longer and discontinued treatment (“unable to tolerate side effects” and “not worthwhile” were the two most common reasons for nonpersistence).

Fear of relapse was the dominant concern for 56% of women. In a previous study, fear of relapse was the dominant concern for 64% of postmenopausal women and 75% of premenopausal women.³³ The high symptom burden in the study cohort is likely to account for the contrasting results because highly symptomatic women are more likely to be concerned about QOL,³³ especially if their risk of recurrence is low. Women's concerns evolved as they transitioned from diagnosis (fear of death, desire for cure) to active treatment (coping with side effects) and then to survivorship and life beyond breast cancer. These findings highlight the importance of not making assumptions about what matters most to patients and regularly exploring patient concerns and treatment goals, which may change over time.²⁹

Despite the high symptom burden, only two thirds of women (68%) had been offered treatment to alleviate menopausal symptoms. Fifty-eight percent were offered nonhormone treatment (mainly antidepressants), compared with 18% to 32% in previous studies.^11,12,33,34 The high symptom prevalence accounts for greater use of NHT by study participants but suggests that NHT are of limited benefit, in line with a recent study that found that NHT effectively relieved symptoms in only 17% of women (17% “effective,” 49% “somewhat effective,” 34% “ineffective”).¹¹

Seventy-one percent of women reported genitourinary symptoms, but only 35% received vaginal estrogen therapy (VET). This is higher than VET use in previous studies (5%-23%)^35–37 but suggests that VET is still underprescribed because VET effectively treats GSM and has not been shown to increase the risk of relapse or death.³⁸ The safety of VET in women using AI is less certain, because the available data is limited and inconclusive.³⁸ Consequently, women with AI-induced GSM may prefer to use vaginal dehydroepiandrosterone (DHEA), which has not been shown to increase serum estradiol levels in AI users and is therefore likely to be safe.³⁹ Less than 1% of the study cohort had received vaginal DHEA, suggesting that it is currently underutilized.

Thirteen percent of women received MHT, higher than the 0% to 4% reported in the literature.^12,34,35 Eighty-four percent of study participants wanted more information about MHT, and 50% of those who had not been offered MHT stated that they would be willing to take it to improve their quality of life and/or mitigate future health risks. This was despite 75% of women being advised never to use MHT and/or refused MHT, revealing a disconnect between clinician and patient views and attitudes. This aligns with the findings of a Belgian study, which revealed that most physicians (95%) were unwilling to prescribe MHT after breast cancer, but most women (58%) would or might take MHT, leading the authors to conclude that MHT should at least be a “consideration” and women can decide for themselves providing they have been supported to give informed consent.^40,41

Previous studies have reported that 22% to 58% of women would be willing to take MHT after breast cancer, mainly for symptom relief and prevention of osteoporosis.^33,41,42 Greater willingness in this study (63% of women were using or would be willing to use MHT) is consistent with the high symptom burden and/or recent heightened awareness about menopause and the short and long-term health benefits associated with MHT.⁴³ Many women may decide not to have MHT after discussing the risks and benefits in the context of their personal history, but clinicians have a duty to provide women with information about all the available menopause treatment options and to support women to make an informed choice.²⁹ Clinicians may be more willing to prescribe MHT for breast cancer patients today following recent publication of guidelines that promote shared decision making^17,29,30 and a move toward more patient-centered breast cancer aftercare.^41,44

Finally, 10% of women were prescribed testosterone, mainly by GP menopause specialists. To our knowledge, this is the first study to measure the prevalence of testosterone use in a community cohort of women with a history of breast cancer and therefore provides novel insight into current clinical practice. Testosterone can effectively treat many menopausal symptoms and has anti-inflammatory, cardioprotective, neuroprotective, and breast protective effects.^45–49 It can be especially useful in women wishing to avoid systemic estrogen therapy and may alleviate bone and joint pain and severe GSM in women using AI.⁴⁷

Patient experience of menopause care was poor. Guidelines recommend that all women should be counseled about the possibility of early menopause and menopausal symptoms associated with breast cancer treatment,¹⁵ but only one in five women recalled being given written information and most women accessed information via the internet (84%) or social media (54%). During or after active treatment, most women felt unable or only briefly able to discuss menopause-related side effects with their breast specialist or primary care team, and few women (14% of those who had not consulted a menopause specialist) felt involved in their menopause-related treatment decisions.

Despite UK guidelines recommending that women with persistent, troublesome menopausal symptoms should be offered referral to a healthcare professional with expertise in menopause,⁵⁰ only 17% of women were referred to an NHS menopause specialist. A further 16% of women had consulted a private menopause specialist. Women felt significantly more able to discuss their menopause-related concerns with a menopause specialist, were given significantly more time, and were more frequently involved in SDM (72% felt involved).

It is not surprising that women experience higher quality menopause care if they consult a menopause specialist. UK guidelines recommend that all breast cancer patients should be managed by a multidisciplinary team (MDT) but do not stipulate that a menopause specialist should be included.⁵¹ Consequently, women experiencing menopausal symptoms after breast cancer are usually managed by their GP and/or breast specialist nurse. However, menopause care after breast cancer is complex. GP and breast specialists may lack time and sufficient expertise to discuss the pros and cons of different menopause treatment options within the context of the patients' cancer and clinical circumstances. Including a menopause specialist in the MDT facilitates more coordinated care and allows breast specialists to focus on breast cancer treatment while ensuring that patients receive evidence-based, high-quality menopause care.⁵²

To our knowledge, this is the first study to explore women's involvement in SDM in menopause-related treatment decisions after breast cancer. SDM is especially important when discussing hormonal treatment options after breast cancer because there is limited evidence to guide treatment decisions, and MHT is likely to be associated with a degree of risk that will vary from patient to patient. Respect for patients' views and preferences, as well as involving patients in treatment decisions, is likely to improve patients' menopause experience and satisfaction with breast cancer aftercare.

Strengths and limitations

This is the largest survey of UK-based menopause care after breast cancer, and the first to focus on patient experience, a key determinant of high-quality care. Overall, compared with national data, survey respondents were younger and therefore more likely to be premenopausal at diagnosis (64% of the cohort were under 50 years old at diagnosis vs. 14% of women diagnosed with breast cancer each year in the UK).⁵³ Younger women are less likely to be satisfied with their breast cancer care.⁵⁴ Recruiting younger, highly symptomatic women facilitated a more in-depth understanding of the issues and challenges faced by breast cancer survivors seeking support and treatment for menopausal symptoms. Regarding hormone receptor status, 73% of the study cohort were diagnosed with ER-positive breast cancer (received AET). Overall, 79% to 84% of breast cancer cases are ER positive.⁵⁵ The lower rate in our study is consistent with the age demographic of the study cohort, because rates of ER-positive disease are lower in younger women.⁵⁵ Capturing the views of a large number of women with ER-positive disease enhances the generalizability of our results because hormone receptor status is likely to influence women's attitudes about MHT after breast cancer.

Several factors limit the generalizability of our findings. First, our survey was only available in English. Ninety-seven percent of participants were White versus 90% of all breast cancer patients in England,² and half (50.8%) were university educated. Women from more deprived backgrounds and minority ethnic groups have worse breast cancer outcomes and are less likely to rate their breast cancer care favorably.^54,56 Further research is needed to understand the views and needs of minority groups, to inform more equitable models of breast cancer after care. Second, highly symptomatic women are more likely to participate in an online survey, and a high symptom burden is likely to influence women's health concerns and attitudes toward MHT. Of 1,367 eligible women who started the survey, 172 women (12.5%) did not complete it and were excluded. It is possible that the excluded women were less symptomatic and/or more satisfied with their menopause care. Third, 23% of study participants had a history of carcinoma in situ versus 15% of all breast cancer cases in the UK.⁵³ Women diagnosed with preinvasive disease that has been fully excised may be more likely to view MHT favorably, especially if they have severe menopausal symptoms. However, the views of women with carcinoma in situ are also relevant because current guidelines recommend that MHT should only be prescribed in exceptional circumstances for women with a history of breast cancer, including carcinoma in situ.¹⁵ Of note, 44% of the study cohort received chemotherapy versus 34% of all breast cancer cases in England in 2013-2015.⁵⁷ This suggests that the views of women with more advanced and/or aggressive disease are also represented, as chemotherapy is usually offered to women with node-positive and/or high-grade disease.

CONCLUSIONS

Among 1,195 breast cancer survivors who responded to our online survey, the menopause symptom burden was high, and most had struggled to access high-quality menopause care. Failing to treat menopausal symptoms leaves women suffering and increases the risk of endocrine treatment nonpersistence, which is associated with worse breast cancer outcomes. As breast cancer treatment regimens become increasingly individualized, so too must the treatment and support offered to patients with treatment-induced side effects and menopausal symptoms.

Further research is needed to gain a deeper understanding of women's experience of menopause and menopause care after breast cancer, including women from more deprived and ethnic minority groups. Listening to patients is key to ensuring that the menopause-related health needs of breast cancer survivors are met and to develop patient-centered models of care. Regarding MHT after breast cancer, available data are reassuring but limited.⁵⁸ Well-designed prospective studies are needed to monitor breast cancer outcomes (recurrence, second breast cancer incidence, breast cancer mortality), and non–breast cancer outcomes (QOL, non–breast cancer morbidity and mortality), in women who use MHT after breast cancer. Until such data are available, women should be supported to make informed treatment decisions based on the available evidence and their personal circumstances.^29,30 Including menopause specialists in breast MDTs is likely to increase patient agency in decisions pertaining to their menopause-related health, improve patients' quality of life, and improve patients' satisfaction with breast cancer after-care.

Supplementary Material

gme-32-396-s001.docx ^{(1.6MB, docx)}