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Women’s Health

Cancer, Fertility, Parenting, Pregnancy, Women's Health

A cancer survivor discusses the importance of considering fertility preservation prior to treatment

pregnancy_testBack in 1998, Joyce Reinecke, JD, was on a cross-country business trip when her increasing fatigue and lightheadedness resulted in her being admitted to the emergency room and the discovery that she had tumors in her stomach, one of which was necrotic and bleeding causing her to be severely anemic. She was diagnosed with leiomyosarcoma, and the tumors, as well as all of the surrounding lymph nodes, were surgically removed. Before she was discharged from the hospital an oncology fellow casually mentioned to Reinecke that since she was scheduled to start chemotherapy she might want to consider options to preserve her fertility.

At the time, Reinecke and her husband hadn’t considered how her treatment would affect their future plans to have a family. The couple eventually decided to complete a round of in vitro fertilization and work with an agency to select a gestational carrier. Their twin daughters were born in February 2000. Reinecke, executive director of the Alliance for Fertility Preservation, shared her patient perspective during a keynote speech at the Family Building After Cancer: Fertility Preservation and Future Options Symposium held at Stanford earlier this month.

To continue the conversation, I reached out to Reinecke about the issue of fertility and cancer survivorship. In the following Q&A, she discusses advancements in the field, why patients need to be proactive in sharing their wishes to have a family with providers, and questions to consider prior to treatment.

What motivated you to focus your career on expanding patient and provider awareness of fertility preservation?

When my girls were around two, I received several inquiries from family acquaintances who had young adults in their lives who were newly diagnosed with cancer. These people had reached out to my parents, to try to understand more about what I had done, where I had gone, etc. in order to preserve my fertility. In speaking to others and hearing about their challenges in finding fertility information and services, I started to really feel that something about the status quo was not right. These patients/family members had learned about possible infertility because they knew of my story, not because their doctors had discussed it with them. This really emphasized to me that my situation – learning about my possible infertility in a very ad hoc way – was not unique, not unusual, but the norm, and perhaps, lucky.

I began doing research around the issue, to see what was out there, what information was available online, etc. I found very little, but I did stumble upon information that Fertile Hope was having a fundraiser. I was in complete shock that a new nonprofit focused on this very issue existed, not to mention that it was based in New York. I went to the fundraiser, signed up to volunteer, met with Lindsay Beck, and signed on as Employee #2. The rest is history.

A past study shows that less than half of U.S. physicians are following the American Society of Clinical Oncology’s guidelines suggesting all patients of childbearing age be informed about fertility preservation. How can patients make sure they get the necessary information about their fertility options prior to treatment?

This question is tricky, because I feel like the onus for initiating this discussion has to be on the provider. Newly diagnosed patients are overwhelmed with all sorts of medical information and decisions to make, not to mention the emotional distress of the diagnosis. Also, patients don’t know what they don’t know. Sometimes providers mistakenly believe a patient isn’t interested in fertility preservation because they don’t ask about it. However, providers have to remember that newly diagnosed young adults probably have very little understanding about how chemotherapy and radiation work – unless they have a cancer that has a direct impact on their reproductive system they probably have no inkling that their fertility is at stake.

That being said, patients need to advocate in their own interest (or enlist a family member to help them do this if they cannot during this difficult time). That means communicating their wishes and values about future parenthood with their providers. That means asking the right questions: Will I be able to have children in a few years? Ever? What can I do about it? It might also mean being able to challenge their doctor’s disapproval or ask that treatment be pushed back [so the patient has time to] bank sperm or eggs. Which is sometimes hard to do.

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Global Health, Health Policy, Public Safety, Women's Health

Lobbying Congress on bill to stop violence against women

Lobbying Congress on bill to stop violence against women

capitol - smallWhen I walked into the U.S. Capitol building this week, it was with the weight of history – my own and my country’s. Years ago, I had walked these hallowed halls as a writer for a Congressional publication and had lived in a house just blocks away. But this time I was there for a very different purpose: I was going to try my hand at lobbying, plying Congress for a cause that had become dear to my heart.

I came to Washington, D.C. with nearly 150 volunteers and staff from the American Jewish World Service, an international development organization that promotes human rights and works to end poverty in the developing world. This year, one of the group’s legislative priorities is passage of the International Violence Against Women Act, now pending in Congress. In February, I had traveled to Uganda as a Global Justice Fellow with AJWS, learning first-hand why this bill is so crucial to the lives of women around the world. I met a gay woman whose life had become hell because of her gender identity; she’d been beaten, raped and robbed and was suffering the emotional trauma of being ostracized by family and community. I also met sex workers, many of them single mothers just trying to make a living, who had been subjected to unprovoked beatings and police brutality. And I met a transgender woman whose home had been burned to the ground and who had been terrorized by her community simply because of who she was. In fact, I would learn that one in three women around the world are beaten, abused or raped at some point in their lifetime – an appalling figure.

The bill would help combat this trend by using the full force of U.S. diplomacy, as well as existing U.S. foreign aid funding, to support legal, social, educational, economic and health initiatives to prevent violence, support victims and change attitudes about women and girls in society. When women become victims of violence, everyone suffers; gender-based violence can reduce a nation’s GDP by as much as 3 percent because women are so key to collective productivity.

“If you want to get a barometer on how a country will fare – its stability – just look at the way it treats its women,” Sen. Ben Cardin (D-Maryland) told our group as we prepared to head out to visit Members of Congress. “Women invest in children and family. Men invest in war.”

With the recent kidnapping of more than 250 Nigerian school girls, the need for the legislation has become all the more pressing. “This is the moment to strike,” Sen. Barbara Boxer (D-Calif.) said during a meeting with 20 members of our group. We met with Boxer in the sumptuous President’s Room in the U.S. Capitol, adorned with gilt, frescoes and historical portraits and the spot where Abraham Lincoln and Martin Luther King once stood. Boxer had just come from a vote on several new judges and was gracious enough to stop by to spend 20 minutes listening to our pitch and discussing strategy.

A strong women’s rights activist, she has been an ardent supporter of the bill from the start. With 300 nonprofit groups now clamoring for its passage, she said she felt it was time to introduce it into the Senate, which she did a week ago. It’s now critical, she said, to enlist additional Republican co-sponsors of the legislation, particularly among members of the Senate Foreign Relations Committee, to give it greater weight and bipartisan appeal. In the House, the bill already has 63 Democratic and 11 Republican co-sponsors, with more being sought.

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Fertility, Women's Health

Mother’s Day and not-by-choice non-mothers

Mother's Day and not-by-choice non-mothers

mother's day partyThe fictional character Bridget Jones drew melancholy in the presence of “smug marrieds” as a single woman. I thought of her term, and other ways experience shapes one’s perspective and perceived status in social interactions, when reading a CommonHealth blog post today by guest contributor and executive producer Karen Shiffman.

Shiffman explains why, through no fault of the happy parents, someone else’s celebration can feel particularly abrasive to the childless-not-by-choice around Mother’s Day. Whether because of infertility, previous illness, divorce or other reasons for not becoming pregnant, or losing a child through miscarriage, death or estrangement, she writes, Mother’s Day isn’t “flowers, manicures, homemade cards” to every woman.

From the piece:

…For me, Mother’s Day is the hardest date on the calendar: I can’t have children and will never be a biological mother. Bad genes, bad luck and a huge cancer scare a while back left me without a womb and a few other body parts.

…As Mother’s Day approached, I didn’t do much better. My family went out for a celebratory brunch; I stayed home. I said it was too painful to be out with all those happy moms and families. I took my mother out to dinner later that week.

She later advises: “So on Mother’s Day, celebrate to the hilt. And the week after, check in on a friend who might have struggled that day.”

Previously: An in-depth look at fertility and cancer survivorshipStudy highlights fertility-related concerns of young cancer survivorsA need to provide infertility counseling to cancer patients and Ask Stanford Med: Director of Female Sexual Medicine Program responds to questions on sexual health
Photo by Quinn Dombrowski

Events, Global Health, Stanford News, Women's Health

2014 Stanford Women’s Health Forum to focus on global health

2014 Stanford Women's Health Forum to focus on global health

I’ll be spending next Wednesday afternoon at the Fifth Annual Stanford Women’s Health Forum, where the best thing about the event is also its most frustrating: There are a lot of good speakers. How does one choose between hearing about the power of training adolescent girls to say no to unwanted sexual advances, and learning from Shuchi Anand, MD, MS, a Stanford nephrologist and epidemiologist who tracks gender-related risk factors for chronic disease in developing regions?

Such difficult choices have been typical of the abundant schedule for each year’s forum, organized by the Stanford WDSM Center, previously known by its longer title, the Stanford Center for Health Research on Women and Sex Differences in Medicine. WSDM selects a theme for the forum and doubles the opportunities for audiences by offering two talks each hour. Last year’s forum focused on breast cancer and featured keynote speaker Susan Love, MD, a breast cancer specialist and leukemia survivor. This year’s theme is global health, and the impressive list of speakers begins with Ruth Levine, PhD, director of the global development and population program at the William and Flora Hewlett Foundation.

In addition to the talks, whose moderators include Jesse Draper, creator and host of “The Valley Girl Show,” the event features  informational presentations on the Stanford Health Library, Stanford Hospital’s Aging Adult Services and Navigation Services programs, lung CT screening, new breast cancer screening technologies, peripheral artery disease diagnostics, and the medical application of the latest in immersive 3-D technologies.

The free event is held at the Arrillaga Alumni Center on the Stanford campus, and those who are interested can register here. For those who can’t make the event, WSDM will post videos of its forum on its YouTube channel.

Previously: Empowerment training prevents rape of Kenyan girls, Videos from Stanford 2013 Women’s Health Forum available online and At Stanford event, cancer advocate Susan Love talks about “a future with no breast cancer”

Cardiovascular Medicine, Health and Fitness, Research, Women's Health

Lack of exercise shown to have largest impact on heart disease risk for women over 30

Lack of exercise shown to have largest impact on heart disease risk for women over 30

woman_running_londonHeart disease, stroke or another form of cardiovascular disease claims the life of someone’s wife, mother, daughter or sister every minute in the United States, according to statistics from the American Heart Association. Now a study shows that an inactive lifestyle outweighs other risk factors, such as obesity and smoking, for developing cardiovascular disease among women age 30 and older.

In the study, Australian researchers tracked the health of more than 30,000 women born in the 1920s, 1940s and 1970s. Findings showed that for women under the age of 30, smoking had the most significant impact on women’s risk of heart disease. But as women got older, and kicked their nicotine habit, the biggest factor shifted to lack of exercise. According to a recent MedPage Today story:

The results highlight the fact that population attributable risks for heart disease appear to change throughout women’s lives, the researchers concluded.

The study findings highlight the importance of emphasizing regular exercise for reducing cardiovascular disease risk, especially in young adulthood and middle age, the researchers said.

“Our data suggest that national programs for the promotion and maintenance of physical activity, across the adult lifespan, but especially in young adulthood, deserve to be a much higher public health priority for women than they are now,” they wrote.

They estimated that “if every woman between the ages of 30 and 90 were able to reach the recommended weekly exercise quota — 150 minutes of at least moderate intensity physical activity — then the lives of more than 2,000 middle-age and older women could be saved each year in Australia alone.”

Previously: Study shows many women have a limited knowledge of stroke warning signs, More evidence that prolonged inactivity may shorten life span, increase risk of chronic disease, Exercise is valuable in preventing sedentary death and Ask Stanford Med: Cardiologist Jennifer Tremmel responds to questions on women’s heart health
Photo by James Roberts

Parenting, Pregnancy, Stanford News, Women's Health

A team of high-risk birth specialists intervene to remove a large lung cyst and save a newborn’s life

A team of high-risk birth specialists intervene to remove a large lung cyst and save a newborn's life

baby-elijah-fetal-maternal-stanford-childrens-200x200When Elizabeth Rodriguez-Garcia was six months pregnant with her first child, she received some frightening news about the development of her baby: The fetus had a large, fluid-filled cyst that was impeding growth of his lung, compressing on his esophagus and pushing on his heart. As the cyst grew larger, the baby developed fluid retention, a condition known as hydrops, and was at high risk of dying in utero.

A Lucile Packard Children’s Hospital Stanford press release explains how a team of high-risk birth specialists collaborated to intervene both before and after delivery to save the newborn’s life:

A week after the cyst was first found, Jane Chueh, MD, director of prenatal diagnosis and therapy at the hospital’s Johnson Pregnancy and Newborn Center and a clinical professor of obstetrics and gynecology at the School of Medicine, inserted a large needle into Elizabeth’s abdomen and into the fetus’ chest using ultrasound guidance, then threaded a small rubber shunt through the needle into the cyst. It was the first use of the procedure at Lucile Packard Children’s Hospital Stanford.

“It immediately started to drain,’’ Chueh said. “It’s like popping a water balloon. Most of the fluid came out in seconds.”

Relieving pressure from the cyst came at a critical time, said Chueh. The dangerous fluid retention that doctors worried was endangering the baby’s life improved dramatically.

After the intervention, mother and baby continued to be frequently monitored and it soon became clear that an emergency surgery would be necessary after delivery to make sure the newborn could breathe properly on his own. At 39 weeks, Rodriguez-Garcia had a scheduled C-section to simplify the transition between delivery and surgery. Nearly three dozen surgeons, obstetricians, anesthesiologists, neonatologists and respiratory therapists worked quickly to ensure mom and baby’s safety:

The operating team, led by surgeon Karl Sylvester, MD, the center’s executive director as well as an associate professor of pediatric surgery, stood by. Within minutes of birth, the baby was quickly moved into Sylvester’s operating room, where he and the surgical team, including assistant professor of pediatric surgery Matias Bruzoni, MD, removed both the cyst and more than two-thirds of the baby’s lung that was adversely affected by the cyst.

“Our ability to provide all these subspecialists in two rooms to care for both the mom and the baby is what led to the successful outcome for this family,” Sylvester said. “It made a huge difference in this young family’s life; without it, he may not have survived at all.”

Today, Rodriguez-Garcia and her husband have a happy, healthy 5-month-old named Elijah. His mother said, “If you see him, you’d never know what he went through and that he doesn’t have most of his left lung. The cyst is completely gone. I feel blessed.”

Previously: From womb to world: Stanford Medicine Magazine explores new work on having a baby, Special care to protect newborns’ fragile brains and A family’s grace in crisis

Complementary Medicine, Mental Health, Parenting, Pregnancy, Research, Women's Health

Ah…OM: Study shows prenatal yoga may relieve anxiety in pregnant women

Ah...OM: Study shows prenatal yoga may relieve anxiety in pregnant women

Desi_smallDuring a pre- and postnatal yoga module of my yoga teacher training, I was enchanted by instructor Desi Bartlett‘s reference to “pregnant goddesses” – our future students – as we learned how yoga could help them prepare for delivery day. (Think deep squats.) Methods to empower goddesses throughout and beyond pregnancy included modifications to traditional poses to stay fit while providing a safe “house” for the fetus, breathing and meditation to steady a busy mind, group activities to build community with other new parents and restorative poses to find calm during a period of change.

Now, a study (subscription required) has investigated how yoga can help relieve pregnancy-specific anxiety in mothers-to-be. Researchers at the University of Manchester and Newcastle University in the U.K. followed 59 women, each pregnant with her first child and receiving normal prenatal treatment during the late second to third trimester, and asked them to self-report their emotional states. A randomized group attended eight weekly prenatal Hatha yoga sessions, and researchers measured those participants’ saliva cortisol levels before and after the first and last classes of the intervention.

From a release:

A single session of yoga was found to reduce self-reported anxiety by one third and stress hormone levels by 14%. Encouragingly, similar findings were made at both the first and final session of the 8 week intervention.

“The results confirm what many who take part in yoga have suspected for a long time,” John Aplin, PhD, one of the senior investigators in Manchester and a yoga teacher, said in the release. “There is also evidence yoga can reduce the need for pain relief during birth and the likelihood for delivery by emergency caesarean section.”

The study was published in the Journal of Depression and Anxiety.

Previously: Toilets of the future, and the art of squattingA reminder that prenatal care is key to a healthy pregnancyPregnant and on the move: The importance of exercise for moms-to-be and Ask Stanford Med: Pain expert responds to questions on integrative medicine
Photo of Desi Bartlett by Natiya Guin

In the News, Mental Health, Women's Health

When hormonal issues interfere with mental health

When hormonal issues interfere with mental health

In a recent Contra Costa Times piece, several women in the neighborhood of menopause share their experiences battling symptoms that have taken a toll on their health and quality of life. Researchers comment on the effectiveness of hormone therapy, when appropriate, to alleviate mood swings, disrupted sleep, anxiety, depression and other afflictions that may accompany this phase of life.

From the article:

By factoring in the hormonal component, health care providers are able to develop treatments that may be better tailored to each woman’s symptoms. The treatments often include old standbys — anti-depressants and hormone therapy — but in combinations or dosages that can be more effective and less likely to bring on adverse risks and side effects.

“Unfortunately, anxiety and depression often go hand in hand with perimenopause,” says [Leah Millheiser, MD,] a clinical associate professor in obstetrics and gynecology at Stanford’s School of Medicine. “There’s definitely no ‘one size fits all.’ “

Millheiser adds, “Hormone therapy, in the well-chosen patient, still plays an important role in improving the quality of life of peri- and post-menopausal women.”

Previously: Fortysomething and sleeplessYoga may help relieve insomnia in menopausal women, study findsAsk Stanford Med: Director of Female Sexual Medicine Program responds to questions on sexual health and Anxiety, poor sleep, and time can affect accuracy of women’s self-reports of menopause symptoms

Cancer, In the News, Stanford News, Women's Health

Using 3-D technology to screen for breast cancer

Using 3-D technology to screen for breast cancer

Yesterday, KGO-TV aired a story discussing the use of 3-D breast-screening at Stanford Hospital. As described here, the technology has the potential to identify breast cancers more accurately, “with fewer false alarms.” More from the piece:

The technology is known as tomosynthesis. It’s a form of x-ray that produces both two dimensional and three dimensional images in a single session. If doctors notice an area that’s suspicious on the normal image, they can turn to the 3D view to essentially examine it from a different angle. Jafi Lipson, M.D. is Assistant Professor of Radiology at Stanford.

“The benefit of tomosynthesis is that you have multiple images at slightly different angles of the x-ray tube that allows you to resolve a lot of artifacts that we normally see when we take two dimensional images of the breast,” Dr. Lipson explains.

Previously: Ask Stanford Med: Radiologist responds to your questions about breast cancer screening, California’s new law on dense breast notification: What it means for women and Five days instead of five weeks: A less-invasive breast cancer therapy

Ethics, Research, Sexual Health, Sports, Stanford News, Women's Health

“Drastic, unnecessary and irreversible medical interventions” imposed upon some female athletes

"Drastic, unnecessary and irreversible medical interventions" imposed upon some female athletes

Four female athletes were required to undergo “partial clitorectomies” and gonadectomies (removal of gonads) as a result of the current gender-policing polices of major sports governing bodies, according to an article published this week in the British Medical Journal.

The article, co-written by Stanford bioethicist Katrina Karkazis, PhD, raises concerns that new policies that use testosterone testing to determine eligibility for elite female athletes accused of having “male-like attributes” have resulted in unnecessary interventions that are both “invasive and irreversible.” The paper was timed to coincide with an editorial that she and Barnard College’s Rebecca Jordan-Young, PhD, wrote for the New York Times, which was previously discussed here.

Karkazis told me that both the journal article and the editorial were written in response to a case study published last year in the Journal of Clinical Endocrinology and Metabolism by physicians who conducted the medical procedures on the four female athletes. The athletes, ages 18-21 and all from developing countries, had tested high for naturally occurring testosterone levels. Their identities remain confidential, but the physicians who performed the surgeries and wrote the report acknowledged that there was no medical need for the procedures, which have been used as treatments for intersex conditions. Karkazis and colleagues argue that not only is there no medical benefit to such procedures, they also make no difference to athletic ability. From the journal article:

Clitoridectomy is not medically indicated, does not relate to real or perceived athletic “advantage,” and is beyond the policies’ mandate. Moreover, this technique is long eschewed because it has poor cosmetic outcomes and damages sexual sensation and function. Clitoral surgery should have no role in interventions undertaken for athletes’ eligibility or health.

Karkazis and her colleagues go on to refute the logic of using testosterone level testing in women as grounds for exclusion from competition as having no scientific grounds, and quote sports officials as saying that female athletes with unusually high naturally occurring testosterone levels have no more competitive advantage that other elite athletes. Karkazis and Jordan-Young wrote in the Times:

Sports officials (the report does not identify their governing-body affiliation) sent the young women to a medical center in France, where they were put through examinations that included blood tests, genital inspections, magnetic resonance imaging, X-rays and psychosexual history… Since the athletes were all born as girls but also had internal testes that produce unusually high levels of testosterone for a woman, doctors proposed removing the women’s gonads and partially removing their clitorises. All four agreed to undergo both procedures; a year later, they were allowed to return to competition.

Quite simply, these young female athletes were required to have drastic, unnecessary and irreversible medical interventions if they wished to continue in their sports.

Previously: Arguing against sex testing in athletes, Is the International Olympic Committee’s policy governing sex verification fair? and Researchers challenge proposed testosterone testing in select female Olympic athletes

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