Experiences with Menses and Menstrual Suppression of Young Women with a History of Cancer

Abstract

Background:

Adolescent and young adult (AYA) women undergoing multiagent chemotherapy are at risk for heavy menstrual bleeding (HMB). There is a paucity of data on the experiences with menses of AYA women with cancer, their risk for HMB, and how they perceive menstrual suppression.

Objective:

This study aimed to (1) describe the attitudes and experiences of AYA women with a history of cancer regarding their menses and menstrual suppression and to (2) investigate facilitators and barriers to improve this aspect of oncologic care.

Design/Methods:

AYA women with a history of cancer completed individual semistructured interviews regarding their experiences, attitudes, and preferences around menstrual health. Two independent reviewers conducted a thematic analysis of transcribed interviews to elicit major themes.

Results:

We interviewed 20 young women with a history of cancer (mean age 19.9 years) who were treated with chemotherapy within the past 5 years. Themes included the following: (1) negative feelings and worry about menstrual bleeding; (2) positive attitudes toward menstrual suppression; (3) misconceptions about menstrual health; and (4) desire for tailored discussions about menstrual suppression.

Conclusions:

AYA women with a cancer history elucidate clear opinions regarding menstruation during chemotherapy, and many hold misconceptions regarding menses and menstrual suppression. Enhanced patient–provider communication and patient educational resources around menstrual health and menstrual suppression are needed to improve comprehensive oncologic care during chemotherapy.

Introduction

Adolescence is a period of rapid physical and developmental changes. As they transition from childhood to adulthood, young women must navigate many important and sensitive concerns related to puberty, sexuality, peer and family relationships, and self-esteem.¹ There is a growing body of literature to support the need to provide better age-specific care to adolescents and young adults (AYAs) diagnosed with cancer.^2,3 Evidence suggests that oncologists rarely discuss developmentally appropriate AYA-specific concerns and often focus on survival and physical symptoms.^4,5

AYA women undergoing chemotherapy are at risk of heavy menstrual bleeding (HMB) due to thrombocytopenia, coagulopathy, or disruption of the hypothalamic-pituitary-gonadal axis.^6,7 Women with HMB in the general population have a lower quality of life than their peers^8–10; however, little is known about this experience for AYA women with cancer. Menstrual suppression with various medications is used to significantly decrease bleeding and in some cases stop menses completely in attempts to prevent severe blood loss and subsequent complications.¹¹ A recent national survey from our group found that the majority (>90%) of pediatric oncology provider respondents report using menstrual suppression in their AYA patients, most commonly GnRH agonists.¹² These providers also felt that it is important to consider menstrual suppression in the majority of AYA cancers; however, there was no standard approach to management. Although the majority of pediatric oncology providers indicated that they were personally charged with managing menstrual suppression, less than half felt comfortable doing so and desired guidelines to help with management.¹²

In this study, we aimed to (1) describe the attitudes and experiences of AYA women with a history of cancer regarding their menses and menstrual suppression and (2) investigate facilitators and barriers to patient–provider communication around this topic. Looking at the perceptions and experiences of AYA patients with history of cancer about menses and menstrual suppression is novel and will help to contribute to continuous improvement in AYA patient care. Elucidating preferences and attitudes of AYA women can help guide future interventions to improve patient-oriented care for this population.

Methods

Study design

We conducted a qualitative study utilizing semistructured interviews with AYA women with a history of cancer around their experiences with menses and menstrual suppression. We used a qualitative approach to explore emotional and personal experiences and gain a more in-depth understanding compared to traditional quantitative research.^13,14 We elected to conduct face-to-face individual interviews rather than focus groups, given the sensitive nature of the material discussed.

Sampling and data collection

We used purposive sampling to recruit AYA women with a history of cancer who were treated at a single large pediatric oncology clinic. We included women with a current or past diagnosis of childhood cancer (including patients with relapse), English-speaking, having received cancer-directed therapy within the past 1–5 years, and who were at least 15 years of age.

Participants were screened from weekly oncology clinic lists. Patients who met inclusion criteria were approached in person during clinic. Before enrollment in the study, patients were given an overview of the study and its objectives. A waiver of parental consent was obtained and waiver of written consent given the minimal risk of the study and sensitive nature of the topic. A semistructured guide was used to facilitate the interviews. Key questions from the interview guide can be found in Table 1.

Table 1.

Key Interview Questions

Tell me about any times your oncology team has talked to you about your puberty/periods?

Tell me about any experience using medications to get your periods to stop during chemotherapy.

Who do you feel should be responsible for managing or discussing menstrual health issues with you?

What are your thoughts about periods when undergoing chemotherapy?

In a perfect world, how would your providers have best talked to you about your periods and menstrual suppression while you underwent chemotherapy?

All interviews were audio-recorded using a digital voice recorder. Interviews lasted 30–60 minutes and were transcribed verbatim by a Health Insurance Portability and Accountability Act (HIPAA) compliant transcription service. The principal investigator (PI) (A.C.) reviewed all transcripts to ensure quality and accuracy. The PI conducted all interviews between January and June 2018 either in person at the oncology clinic or through phone, based on preferences of the participants. The interviewer was not directly involved in the participants' clinical care, participants were told that their choice to participate would not impact their care, and individual responses would not be shared with anyone, including their providers. The study was reviewed and approved by the UPMC Children's Hospital of Pittsburgh Institutional Review Board, IRB no. PRO17100531.

Analyses

Transcripts of the interviews were analyzed through an iterative process. The PI developed the initial set of codes. Two coders (A.C. and A.G.) independently reviewed each transcript to identify codes based on words and phrases. The reviewers assigned codes, compared coding, and discussed discrepancies, and a final codebook was formed by a consensus approach.¹⁵ The final coding scheme was applied to all transcripts. A senior author (T.K.) was available to adjudicate any disagreements in coding. The PI in conjunction with the senior author identified themes through reviewing coded transcripts.¹⁶ From the interviewer's notes and observations during interviewing, thematic saturation was reached by 18 interviews suggesting that this sample size was adequate to capture a range of experiences and attitudes.¹⁵ NVivo was used to facilitate data storage, coding, and organization.

Results

Twenty participants completed semistructured interviews (mean age 19.9 years, range 16–25 years). The patients had a history of a variety of oncologic diagnosis, including patients with relapsed disease. Additional descriptive information about the participants is found in Table 2. We identified four overarching themes during our interviews and several subthemes as summarized in Table 3, and described below with additional details.

Table 2.

Patient Demographics (n = 20)

Current age, mean, SD (range)	19.9, 2.7 (16–25)
Age at diagnosis,^a mean, SD (range)	16.5, 2.3 (14–22)
Age of menarche,^b mean, SD (range)	12.9, 1.1 (11–15)
Diagnosis, n (%)
Leukemia	12 (60)
Lymphoma	3 (15)
Central nervous system tumor	3 (15)
Solid tumor	2 (10)
Relapsed disease	7 (35)
Bone marrow transplant	2 (10)

Missing data, n = 19.

Missing data, n = 15.

SD, standard deviation.

Table 3.

Themes and Representative Quotes

Theme	Representative quotations
Women have strong emotional responses about menses during chemotherapy	“My first concern was how much blood I was losing, because there were days where I would lose a lot. It'd be pouring down my legs sometimes and I would get extremely lightheaded.”
Fear/worry	“[My periods] were really, really heavy, so I was worried, because I'm like, ‘I hope I don't bleed out from just the period.’”
Embarrassment	“I was having issues with my period at first. They needed to monitor how much blood I was losing. I had to save all of my pads and leave them in the bathroom to be collected. That was just awful. Probably one of the most emotionally traumatic things that I had to get over.”
Embarrassment	“I had plenty of people visiting me, and it [pads] was in my bathroom, which my parents tried to steer people clear of and show them a different bathroom, but it just still felt like awfully intrusive.”
Stress/annoyance	“I feel like whenever I get my period, I have more stress, and the pains that come with periods obviously aren't fun. I definitely am a little bit more anxious or stressed more when you have to deal with that sort of thing.”
	“I'd wake up constantly, from, like because I have to go to the bathroom, especially with it being so heavy. I couldn't, like, sleep through a night without having to wake up constantly for it.”
	“I just remember I was so sick. There were just times where I wouldn't wanna even get up. I'd just sleep days away ‘cause it would just hurt to wake up and stuff. I couldn't imagine trying [to have menses]—you'd have to get up to go to the bathroom and everything. I just couldn't do it. I don't think I could have done it.”
Women have positive feelings about the use of menstrual suppression during chemotherapy	“I used [Depo] Provera when my period first started in the first month of chemo…I liked the fact that I didn't have to worry about my period. That was the best part of it.”
	“I didn't have to worry about if I got my period, if I stained my pants while I was in here getting a transfusion. I didn't have to worry about a lot of that…when I had a lot more pressing, urgent problems to worry about.”
	“[Menstrual suppression] It takes away from certain things that are little, petty issues and you can focus on the big problem, which is getting healthy.”
	“I was bleeding a lot, and I feel if I didn't have the birth control, then that would be an ongoing issue. It wasn't an ongoing issue after they regulated it. I mean I'm glad that I didn't have to deal with that on top of everything else, once they fixed the problem.”
	“I think [menstrual suppression] that's a good idea, ‘cause I just feel like, when you're in treatment, you have so much more to worry about, and that's the last thing you wanna worry about.”
Misconceptions about menstrual health are common in adolescent and young adult women with cancer	“I don't really wanna go on the birth control that makes you not have periods ‘cause I don't think—personally, I think that's unhealthy, to me.”
	“I think it's—I don't really wanna go on the birth control that makes you not have periods ‘cause…I think that's unhealthy.”
	“I think that it is good if you do get a period, If you don't get a period, you obviously can't have children.”
	“I have mixed feelings about [menstrual suppression] because I feel like if you stop your period—I don't know facts about it, but I'm always scared that you won't be able to have children because you stopped your period, and that still worries me to this day that I'm gonna have trouble getting pregnant eventually.”
	“My sister has an IUD, and she hasn't had children yet, so that kinda freaks me out ‘cause I feel like that will make it harder for her to get pregnant ‘cause it's up there.”
Women desire tailored discussions around menses and menstrual suppression	“I never really knew too much about birth control, and I felt like whenever my mom did suggest it, I was thrown into it and I never knew much about it. I think if I had learned more about all of my options, I would have been able to take a better choice.”
	“It's important to talk to them about puberty and stuff, so that they don't have questions about it, and they understand it's natural, and they understand the purpose of it, and all that stuff.”
	“I guess even for me, understanding—knowing what's gonna happen with my period is important, but yes, especially with younger girls, I would feel that maybe they wouldn't ask the questions, or ask about it, so maybe it would be good that the doctors bring it up and do say something.”
	“My period, I don't like talking about my period to guy doctors…If something like that isn't brought up, then I won't talk about it, especially with a guy doctor.”
	“I think it's pretty important, especially depending on how old they are. If they're just starting puberty and everything, I think it's extremely important to let them know what's gonna go on, what's happening with your body and stuff and that it's normal.”

Theme 1: negative feelings about menses during chemotherapy

The majority of the participants reflected concerns and shared worries and fears regarding menses during chemotherapy. Although some had general negative feelings mentioning that it was a “pain in the butt,” “annoying,” or an “unwanted guest,” many of the young women interviewed also expressed fears and worries tied to experiencing menses during chemotherapy. The three most commonly expressed responses were fear/worry, embarrassment, and stress/hassle.

Participants reported having fears or worries about their menses during chemotherapy that were often focused around the amount of blood that they were losing, the irregularity of their menses, and the physical symptoms associated with menses. This is exemplified by comments such as: “[My periods] were really, really heavy, so I was worried, because I'm like, ‘I hope I don't bleed out from just the period.’” Another woman stated, “My first concern was how much blood I was losing, because there were days where I would lose a lot. It'd be pouring down my legs sometimes and I would get extremely lightheaded.”

In addition, embarrassment was identified by a minority of women, but this was commented on often by those affected. As one woman noted: “They needed to monitor how much blood I was losing. I had to save all of my pads and leave them in the bathroom to be collected. That was just awful. Probably one of the most emotionally traumatic things that I had to get over.” Most participants also felt that menses added stress or hassle to an already taxing situation. One woman stated, “I feel like whenever I get my period, I have more stress, and the pains that come with periods obviously aren't fun. I definitely am a little bit more anxious or stressed more when you have to deal with that sort of thing.”

Theme 2: positive attitudes about menstrual suppression during chemotherapy

The majority of the participants who were prescribed or used menstrual suppression during chemotherapy had felt positively about their experiences with menstrual suppression. One woman remarked on her experience with menstrual suppression, “I was bleeding a lot, and I feel if I didn't have the birth control, then that would be an ongoing issue…I mean I'm glad that I didn't have to deal with that on top of everything else, once they fixed that problem.” Another participant stated, “I used [Depo] Provera when my period first started in the first month of chemo…I liked the fact that I didn't have to worry about my period.”

For participants who did not use menstrual suppression (either because they were not prescribed menstrual suppression or their menses stopped without the use of menstrual suppression medications during chemotherapy), the majority said that they thought it was a good idea to consider. As one participant stated, “I think that's a good idea ‘cause I just feel like, when you're in treatment, you have so much more to worry about, and that's the last thing you wanna worry about.”

In the minority of participants who did not hold a positive view of menstrual suppression, some expressed concerns with using additional medications. These hesitations were associated with concerns about drug interactions, side effects, concerns about future fertility, and the lack of knowledge/education about menstrual suppression. One stated, “I guess it just stops the periods, but then I'm sure that that would affect something else. I don't know. I feel like personally, maybe—there's so many medicines that we're already taking, that …maybe it's a little bit unnecessary.” However, the most common concern young women had was the association of menstrual suppression and decreased future fertility, which is discussed in more detail below.

Theme 3: misconceptions about menstrual health

Participants had several misconceptions about menses during chemotherapy and what it means to stop menses with medication. These misconceptions were more often seen in AYA women who had not had discussions about menses or menstrual suppression with their medical team and in those who did not have previous experiences with menstrual suppression.

Several participants had confusion as to why their menses had spontaneously stopped during chemotherapy or the effect of suppressing their periods on their long-term reproductive health. Specifically, many participants focused on the “healthiness” of having a period. One woman said, “I don't really wanna go on the birth control that makes you not have periods ‘cause I don't think—personally, I think that's unhealthy, to me.”

Concerns about future fertility and menstrual suppression were common among participants. For example, one participant said, “I feel like if you stop your period—I don't know the facts about it, but I'm always scared that you won't be able to have children because you stopped your period, and that still worries me.” Another young woman when asked about menstrual suppression during chemotherapy said, “I think it's good if you do get a period. If you don't get a period, you obviously can't have children.”

Theme 4: desire for tailored discussions around menstrual health

Young women felt that menses and menstrual suppression were important to discuss during chemotherapy and desired tailored conversations about menstrual suppression and menses with their oncologic providers. When asked to give a numerical value on a scale of 1–10 to the importance on this topic, almost all of the patients rated it a 7 or above, with 10 being the most common response.

Participants desired these conversations to take place at diagnosis, at the beginning and throughout their treatment course, and after completion of chemotherapy. Most participants wanted these conversations to be held in private and without family members or others present. There was a minority of participants who wanted their mother or significant other to be involved.

Most participants preferred to have these conversations with a medical team provider with whom they felt comfortable and who was knowledgeable about sexual and reproductive health. There was not a consensus among participants regarding the discipline of this provider; some patients preferred their oncologists and others preferred nurses or women's health providers. One participant highlighted the importance of these conversations in this way, “If you don't know what to expect [with menses], it's hard to know if something's not right and if the side effects you're having are normal compared to people that don't have cancer or are on treatment or anything.”

Most participants discussed discomfort around speaking to a male physician about menses and menstrual suppression. Discomfort ranged from feelings that a male provider could not understand their concerns to general discomfort talking to a man about menstruation. One young woman remarked, “My period, I don't like talking about my period to guy doctors…If something like that isn't brought up, then I won't talk about it, especially with a guy doctor.”

Participants felt that the age of the patient was an important factor when considering conversations about menses/menstrual suppression. Many expressed that conversations around menses and menstrual suppression were particularly important for younger patients. For example, one participant stated, “I think it's pretty important, especially depending on how old they are. If they're just starting puberty and everything, I think it's extremely important to let them know what's gonna go on, what's happening with your body and stuff and that it's normal.”

Discussion

This is the first study to explore the attitudes and experiences of AYA women with a history of cancer toward menstrual health and menstrual suppression. The young women in this sample endorsed strong feelings and many misconceptions about menses and menstrual suppression during chemotherapy. They expressed an interest to have tailored conversations about menses and menstrual suppression with their medical team.

In general, adolescence and young adulthood is a challenging and dynamic phase of life marked by increasing independence from parents or caregivers, career plans, personal romantic relationships, and clarifying one's reproductive goals.¹⁷ Dealing with everyday stresses, while also coping with a cancer diagnosis, introduces significant emotional distress and detrimental effects on the physical, psychological, and social well-being of AYAs.^18–24 AYAs with cancer also have an elevated risk of depression and anxiety compared to adults, and these concerns are frequently cited as an unmet need in this population.^23–26 In addition, HMB is known to independently cause emotional distress and decreased quality of life in young women in the general population.^9,10,27,28 Further work to explore how menses can affect health-related quality of life in young women with cancer may help to guide provider decision making and counseling regarding menstrual suppression.

The young women interviewed in this study described several misconceptions about menses and menstrual suppression. Misconceptions surrounding menses and sexual and reproductive health are not unique to these patients and are common among the general population.²⁹ Problems with menstrual-related education have been attributed to perceptions of willingness of teachers to discuss menstruation, time limits for sex education in school, and presence of peers leading to embarrassment during educational sessions.³⁰ Poor preparation coupled with negative menarchal experiences may contribute to how women conceptualize menstruation over their lifetime.³¹

There is a need for improved patient education surrounding these topics to better prepare young women and improve quality of life. One study demonstrated that an intervention involving education and dialog about sexual and reproductive health topics in AYAs improved body image, lessened anxiety about intimate relationships, and decreased overall levels of psychological distress.³² Many women in our study stated that talking about these topics was helpful for discerning what can be expected during chemotherapy. Discussions enabled them to feel better informed and facilitated subsequent conversations with providers regarding future sexual and reproductive health decisions.

Consistent with previous qualitative studies of women with pediatric-onset health conditions, this study found that young women with cancer want to engage in conversations about general and disease-specific sexual and reproductive health concerns.^33–37 Findings from this study help to underscore the need for comprehensive sexual and reproductive health care for AYA patients with cancer, which should include menses and menstrual suppression; however, the best process for implementing such education and counseling is unclear. The young women in this study desired to have these conversations with a medical team provider with whom they felt comfortable and who was knowledgeable about sexual and reproductive health. Unfortunately, prior research suggests that oncologists are often uncomfortable discussing sexual and reproductive health with their AYA patients.³⁴

Importantly, there is a paucity of quantitative data around menses and menstrual suppression in AYA women with cancer. As mentioned above, our recent national oncology provider survey indicated that the majority of respondents use menstrual suppression, yet do not feel comfortable managing menstrual suppression and desire standardized guidelines.¹² Future studies are needed to investigate menstrual suppression utilization and the efficacy of different suppressive agents. Results can assist providers with deciding which patients are most likely to benefit from menstrual suppression and individually tailor patient counseling and management. In addition, in future longitudinal studies it will be important to not only collect information while patients are receiving chemotherapy but also the time after chemotherapy, including information about future fertility, as this was a concern for many of the patients. There is currently a large, multicenter, cluster randomized controlled trial underway through the National Cancer Institute to investigate the reproductive health care needs of women aged 15–55 years and to evaluate the success of implementing reproductive health care programming for this population.³⁸ The results of this study may help to further clarify how to best have these conversations in the AYA population.

This single-center qualitative study has several limitations. The qualitative study design does not attempt to represent all young women with a history of cancer, so these results cannot be generalized to all AYA female oncology patients.³⁹ In addition, all participants were treated at a pediatric hospital by pediatric oncologists, so results cannot be generalized to AYA patients treated at adult care centers or by adult oncologists.

In conclusion, AYA women with a cancer history articulate clear preferences regarding management of menstruation during chemotherapy, and many hold misconceptions regarding menses and menstrual suppression. Patients recognize that menstrual suppression is important and desire to have tailored conversations regarding their menstrual health. Future work should investigate how to best partner with women's health providers to collaborate in the care of these patients. In addition to partnering with other providers, there is also a need for oncology provider education, both in the subject matter and how to communicate this information to their patients. Enhanced patient–provider communication, patient educational resources, and further partnerships with women's health specialists are important to help to improve comprehensive oncologic care for young women with cancer.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was funded by a research grant from CureRock awarded to Allison Close.

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