Heavy Menstrual Bleeding in AYA Women With Cancer: New Insights Into Patient and Provider Experiences, Knowledge, and Practices

Adolescents and young adult (AYA) women undergoing chemotherapy are at risk for heavy menstrual bleeding (HMB), which may arise from causes such as thrombocytopenia, coagulopathy, and disruption of the hypothalamic-pituitary-gonadal axis. Patients with HMB may need increased blood and platelet transfusions, potentially leading to complications such as allergic reactions, infection, transfusion-related circulatory overload, or lung injury.

Options available to temporarily suppress menstruation during chemotherapy include combined hormonal contraceptives, gonadotropin-releasing hormone (GnRH) agonists, and intrauterine devices (IUDs). Consensus is lacking, however, on which of these approaches is most efficacious or best tolerated, and no guidelines exist to manage the treatment of this complication in AYA women with cancer. Furthermore, no studies have examined the experiences and perceptions of HMB in AYA women with cancer, and evidence suggests that oncologists — focused on concerns related to physical symptoms and survival — rarely discuss specific concerns such as the potential effects of chemotherapy on menstruation with AYA patients.

Two recently published papers address this gap in the scientific literature by reporting on (1) the perceptions and experiences among AYA patients with a history of cancer related to menstruation and menstrual suppression, and (2) the attitudes and practices of pediatric oncology providers regarding menstrual suppression.

First author Allison G. Close, MD, MS, spearheaded this research while she was a fellow in the Division of Pediatric Hematology/Oncology at UPMC Children’s Hospital of Pittsburgh. The papers appeared in the Journal of Adolescent and Young Adult Oncology in October 2019 and Pediatric Blood & Cancer in December 2019.

“Studies in young women without cancer have found that HMB has a significant impact on their quality of life,” says Dr. Close. “They have more missed work days, school days, and social engagements than their peers who don’t have HMB. But no one had looked at this issue in young women with cancer, or examined the practices of pediatric oncologists around menstrual suppression.”

Sensitive Topic

For the study of patients’ perceptions and experiences, Dr. Close conducted semi-structured interviews with 20 women aged from 16 to 25 years (mean 19.9 years) who had been treated for cancer at UPMC Children’s within the previous five years. Twelve patients (60%) had a diagnosis of leukemia; other diagnoses included lymphoma, central nervous system tumors, and solid tumors. Seven patients (35%) had a history of relapsed disease.

“Because of the sensitive nature of the topic, we chose to do individual interviews rather than focus groups,” says Dr. Close. “To help elicit candid responses from patients, we obtained waivers of parental consent and conducted interviews in private.” Key interview questions included: “Tell me about any times your oncology team has talked to you about your puberty/periods,” and “Tell me about any experience using medications to get periods to stop during chemotherapy.”

The study of provider attitudes and practices around menstrual suppression was an internet-based, anonymous survey. Dr. Close and her team randomly chose 100 pediatric oncology programs participating in the Children’s Oncology Group (25 in each of four regions: Northeast, Midwest, South, and West). Individual survey links were sent by email to 926 oncology providers (including physicians, advanced practice nurses, and physician assistants) at the selected institutions.

The majority of survey questions were modified from the limited existing research on menstrual suppression in cancer patients. Investigator-developed questions were assessed for content validity by a multidisciplinary panel of experts. Questions included Likert-type scales as well as multiple-choice and rank-order questions. Some questions were asked only of providers who said they had prescribed menstrual suppression.

A total of 218 survey recipients (24%) consented to the survey, of whom 187 (86%) completed it and were included in the analysis. Most respondents were physicians (92%), female (65%), worked in an academic setting (87%), and had been in practice for 10 years or less (59%). Respondents represented all geographic regions and small (less than 50 new diagnoses per year), medium (51 to 200 new diagnoses per year), and large (more than 200 new diagnoses per year) pediatric oncology programs.

Results of Patient Study

Many of the young women in the study had strong emotional responses about menstruation during chemotherapy, says Dr. Close. Their concerns largely fell into three categories.

Fear/Worry

Patients worried about the irregularity of their periods and the amount of blood loss. One woman said: “My periods were really, really heavy. I was worried because I’m like, I hope
I don’t bleed out from just this period.”

Embarrassment

One patient said: “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.”

Stress/Annoyance

Many patients felt that menstruation aggravated an already stressful situation. As one patient put it: “I feel like whenever I get my period, I have more stress.”

Patients who used menstrual suppression during chemotherapy generally felt positively about the experience. As one said: “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.”

Many participants had misconceptions about the potential health effects of menstrual suppression. One woman said: “I don’t really wanna go on the birth control that makes you not have periods … I think that’s unhealthy, to me.” Some patients worried that menstrual suppression could lead to infertility. “I’m always scared that you won’t be able to have children because you stopped your period,” said one.

Women felt that menstrual health was an important topic to discuss with their medical team, but said that these conversations rarely occurred. Many expressed discomfort about discussing menstruation with a male physician. As one patient said: “I don’t like talking about my period to guy doctors.”

Results of Provider Study

Large majorities of respondents to the provider study agreed that it was important to consider prophylactic menstrual suppression in AYA women with newly diagnosed cancer (93%), said that they had recommended such treatment for an AYA woman who was receiving chemotherapy (94%), and agreed that formal guidelines on initiating menstrual suppression would be helpful (95%).

Just 46% of respondents said they felt comfortable personally managing menstrual suppression, while 91% agreed that they would feel comfortable doing so with guidance from another subspecialty such as gynecology or adolescent medicine. About 70% of respondents said they felt knowledgeable about menstrual suppression options.

When asked which methods of menstrual suppression they had prescribed to their patients, 83% of respondents selected GnRH agonists, followed by depot medroxyprogesterone acetate (82%), combined oral contraceptive pills (57%), progestin-only pills (46%), and IUDs (26%).

Asked about the importance of various factors in selecting a method of menstrual suppression, most respondents said that patient preference (78%), concerns about side effects (68%), possible gonadal protection (63%), and greater likelihood of amenorrhea (62%) were extremely or very important. Other factors that respondents considered extremely or very important were chemotherapy agents used (55%), history of heavy menses (54%), patient age (51%), insurance coverage (40%), diagnosis (38%), contraceptive efficacy (36%), route of administration (30%), and hospital policy and procedure (12%).

Eighty-three percent of respondents agreed that patients with acute myeloid leukemia should receive prophylactic menstrual suppression. More than half agreed that patients with sarcoma (all types), acute lymphoid leukemia, Hodgkin and non-Hodgkin lymphoma, germ-cell tumors, and central nervous system (CNS) tumors requiring chemotherapy should receive menstrual suppression. Fewer than 25% of respondents agreed that patients with chronic myelogenous leukemia, thyroid cancer, melanoma, or CNS tumors requiring surgery alone should receive menstrual suppression.

Quality of Life Issue

“The patients in our study had clear preferences about the management of menstruation during chemotherapy — it was definitely a quality of life issue for them,” says Dr. Close. “They felt that this was an important issue and they wanted to talk about it with their oncology care team, but for the most part those conversations were not happening.

Many patients also had misconceptions about the potential effects of menstrual suppression. “Respondents to the provider survey also said that the management of menstruation during chemotherapy was important, and most of them were doing it — but with almost a total absence of data to guide their practice,” says Dr. Close.

Most Surprising Finding

The most surprising finding in the provider survey, says Dr. Close, was that only about a quarter of respondents were prescribing IUDs for menstrual suppression and only five percent selected IUDs as their preferred treatment option. “Most respondents said that they had never recommended an IUD for menstrual suppression, and the primary reason was concerns about infection risk, followed by a lack of experience or published data.”

Erika D. Friehling, MD, assistant professor of pediatrics at the University of Pittsburgh School of Medicine and fellowship program director in the Division of Pediatric Hematology/Oncology at UPMC Children’s, is the senior author of the provider study and a coauthor of the patient study. She says evidence shows that the current generation of IUDs are safe and effective for menstrual suppression and have fewer adverse effects than methods such as combined oral contraceptives, which are associated with multiple adverse effects in patients with cancer.

“Survey respondents’ views of the IUD seem to be heavily influenced by concerns that existed about previous generations of IUDs,” says Dr. Friehling. “The current generation of IUDs are different and much safer than older devices. This knowledge gap points to a need not only to educate pediatric hematologists about the current state of the art in menstrual management, but also to encourage them to engage and collaborate with their colleagues in adolescent medicine, who are at the forefront of this field.”

For Dr. Close, the findings of these two studies reveal a need for more research comparing the effectiveness and safety of different methods of menstrual suppression in AYA women with cancer. “In order to provide the best evidence-based care for our patients, we need better high-quality data — or at least expert guidance — on which patients should be considered for menstrual suppression and what the best and safest options are for treating HMB.”

References

Close AG, Ghuman A, Friehling E, Hamm M, Frederick NN, Miller E, Kazmerski TM. Experiences With Menses and Menstrual Suppression of Young Women With a History of Cancer. J Adolesc Young Adult Oncol. 2019 Oct 8. doi: 10.1089/jayao.2019.0077. Epub ahead of print.

Close AG, Jones KA, Landowski A, Switzer GE, Kazmerski TM, Miller E, Friehling E. Current Practices in Menstrual Management in Adolescents With Cancer: A National Survey of Pediatric Oncology Providers. Pediatr Blood Cancer. 2019 Dec; 66(12): e27961. doi: 10.1002/pbc.27961. Epub 2019 Aug 23.