The National Institute for Health and Care Excellence launched its first guidelines on how to treat the menopause. But don’t expect this to be the final word on the subject. There is an ongoing debate about the pros and cons of hormone replacement therapy (HRT), and not all of it is based on sound evidence. So now might be a good time to take a look at what the science tells us.
Is HRT safe?
HRT can’t be described as safe or unsafe. Its effects vary depending on the types of hormone used, the form in which it is given (pills, or patches and gels), and the timing of first use (around menopause, or later). The safety of HRT can also depend on other things, such as body mass index. Factor in a woman’s family and personal medical history, and her individual experience of menopausal symptoms, and it is clear that one size cannot fit all. Whether or not the benefits of this treatment outweigh the risks will continue to be a personal decision.
Most doctors and scientists agree that HRT, and specifically the oestrogen in HRT, is good for menopausal symptoms. None of the alternatives – diet, exercise, SSRIs (antidepressants) or other prescription drugs, herbal remedies such as red clover and black cohosh, nor “bioidentical” or “natural” hormones – have been shown to be as effective as HRT at controlling symptoms such as hot flushes. Many women find that HRT transforms their lives.
But HRT has benefits beyond treating the symptoms of the menopause. For example, it’s good for bone health. It’s been shown to reduce risk of fractures in postmenopausal women. This is important, as osteoporosis and bone fractures become more common as women age, and can be very debilitating.
A lot of what we know about the effects of HRT comes from large studies set up in the early 1990s, a time when HRT was widely prescribed in the US and the UK, not only to relieve menopause symptoms and to prevent osteoporosis, but also to prevent heart disease (as suggested by some, but not all, studies at the time). However, evidence for a beneficial effect of HRT on heart disease risk has not been confirmed.
The Women’s Health Initiative (WHI) trials in the US were designed to study cardiovascular risk and the UK Million Women Study (MWS) investigated the risk of breast cancer in women using different types of HRT. Over the last 15 years, these studies, and others, have found little or no evidence that HRT reduces the risk of heart disease. In fact, they have found evidence for an increased risk of blood clots and stroke. They also found an increased risk of breast and ovarian cancer in women using HRT. Most of the effects of HRT – positive and negative – are seen while women are taking HRT, and disappear once they stop.
Prescribing guidelines have for some years agreed that HRT should not be used to prevent long-term disease, but should be used in the short-term to relieve menopausal symptoms. The NICE guidelines reiterate this advice.
A nuanced picture
The publication of the WHI results on heart disease and the MWS results on breast cancer in 2002 and 2003 led to a marked and rapid fall in HRT prescribing throughout the world. And shortly afterwards, breast cancer rates also fell. It is estimated that tens of thousands of cases of breast cancer have been avoided worldwide in the past decade because of the fall in use of HRT.
Breast cancer is a good example of the complexity of HRT risk. The risk is greater for oestrogen-progestagen (combined) HRT than for oestrogen-only HRT (we don’t know why). Also, the risk appears to be greater when HRT is started around the time of menopause rather than later. The risk also depends on body mass index – the increased risk of breast cancer from HRT is greater for thinner than for fatter women. This is thought to be because fat tissue is an important source of oestrogen hormones produced by the body after the menopause, and these are known to affect breast cancer risk. Fatter women produce more oestrogen, and have a higher background risk of breast cancer than thinner women; adding the extra hormones of HRT seems to make more difference in thinner women, who have lower levels of naturally-made oestrogens. The Million Women Study found that HRT-associated risks for breast cancer ranged from over twofold increased risk to no added risk, depending on type of HRT, timing of use and body mass index.
Other conditions such as heart disease, stroke, fractures and ovarian cancer also have differing patterns of association with different forms of HRT, so the picture is much more complex than it at first appeared. On the other hand, understanding the effects of these other factors on risk can explain some apparent differences in the results from different HRT studies. Overall, a clearer picture – albeit not a simple one- is emerging from the large amount of evidence we now have on HRT’s effects.
Some feel the pendulum has swung too far against HRT, and that women have been denied effective treatment for menopausal symptoms because of “exaggerated” fears over risks.
Speaking to women for studies we’ve conducted, there is anecdotal evidence that this has happened. Some doctors, for example, have been reluctant to continue prescribing HRT beyond the five years described as “short term” in prescribing guidelines, even when a woman continues to have severe menopausal symptoms and – knowing the potential risks – wishes to keep taking HRT. Many other women, however, have probably avoided inappropriate treatment with HRT, and an increased risk of breast cancer and other conditions, as a result of the new evidence accumulated over the past 15 years.
There’s a lot we still don’t know about HRT. For example, what effect does it have on other important conditions such as dementia? The search goes on for forms of hormone treatment which have more of the benefits and fewer of the risks compared with the current therapies. And we need to carry on looking at alternatives to HRT, such as the bisphosphonates (bone strengthening drugs) and examining how the risks and benefits of these treatments compare with those of HRT.
Media outlets often struggle to get beyond “HRT good” or “HRT bad” headlines, but a polarised and oversimplified debate conceals the considerable advances we have made in our knowledge about HRT. It would be good if scientific differences of opinion were seen as part of the advancement of knowledge, rather than a reason to distrust science.
I discussed my views on this study in my last post. In order for completeness, and to avoid accusations of bias on my behalf, I publish the article below, to keep you informed about this important issue. You will need to understand the difference between relative risk(RR) and absolute risk(AR) to appreciate the statistics in this study. RR is when you say that doing something will double your risk of getting cancer, for example. Absolute risk is if you were told , for example, the risk of something was 1 in a million, which increased to 2 in a million(doubled) on doing something, you would not be so concerned. So AR is a better judge of behavior than RR.
Here’s what you need to know about menopausal hormone therapy and cancer risk
Scientific Director of the 45 and Up Study, Sax Institute; Professor of Epidemiology and Public Health, Australian National University
Emily Banks receives funding from the National Health and Medical Research Council, the Federal Department of Health and the Heart Foundation of Australia. She is currently Chair of the Advisory Committee on the Safety of Medicines; the views expressed in this article are her own.
The use of hormone replacement therapy (HRT) doubles the risk of breast cancer in menopausal Australian women, our new research shows.
The study, published in the International Journal of Cancer, is consistent with international research and demonstrates that more judicious use of hormonal therapy could reduce rates of breast cancer.
But that doesn’t mean HRT has no place in alleviating moderate to severe symptoms of menopause such as hot flushes and vaginal dryness.
Hormones and breast cancer
Hormone levels have long been known to influence the development of breast cancer. The reduction in hormone levels that occurs during menopause is protective; while the risk of breast cancer increases with age, it increases less steeply after menopause.
Breast cancer is also more common in women with higher oestrogen levels and can be reduced with oestrogen-blocking medications such as tamoxifen.
Our joint Cancer Council NSW-Australian National University study compared the use of menopausal hormone therapy in 1,236 women with recently diagnosed invasive breast cancer and 862 women without cancer.
The findings are consistent with international evidence showing the risk of breast cancer increases the longer menopausal hormone therapy is used. The risks are greater with use of combined oestrogen-progestagen than with oestrogen-only therapy.
Current users of oestrogen-only therapy (who have been on HRT for around five years) have a 20% increase in the relative risk of developing breast cancer. Use for around ten years leads to a 30% increase in risk.
Corresponding figures for oestrogen-progestagen therapy are 60% (for five years of use) and 120% (for ten years).
The risks of breast cancer are increased, but to a lesser extent, with use for less than five years.
Breast cancer is relatively common. Among 1,000 women in their 50s, around ten would be expected to develop breast cancer over a five-year period. This would increase to 16 if those 1,000 women were taking oestogen-progestagen menopausal hormone therapy.
Among women with breast cancer, menopausal hormone therapy increases the risk of the cancer coming back.
The good news is that the elevated risks of menopausal therapy generally wear off within a few years of ceasing use.
Risks and benefits of HRT
Hormone therapy is an effective treatment for menopausal hot flushes, night sweats, vaginal dryness and thinning of the vaginal tissues. These symptoms can have major effects on quality of life for women.
It’s less clear if menopausal hormone therapy alleviates other menopausal symptoms that aren’t as clearly related to hormone levels, such as irritability, low mood and mood swings.
Menopausal hormone therapy has also been shown to reduce the risk of hip fractures and, potentially, bowel cancer.
But in terms of the balance of potentially life-threatening disease with use of menopausal therapy, the number of cases of breast cancer, stroke, ovarian cancer, blood clots and endometrial cancer caused by therapy exceeds the number of hip fractures and bowel cancers prevented.
So, the risks of these serious diseases outweigh the benefits. And the risks of combined oestrogen-progestagen therapy are greater than those of oestrogen-only.
Menopausal hormone therapy should only be used for the short-term treatment of menopausal symptoms (such as hot flushes, night sweats, vaginal dryness)
Women considering using menopausal hormone therapy should be informed of its risks and benefits
Menopausal hormone therapy shouldn’t be used to prevent disease, or (in Europe and Australia) as first-line treatment for osteoporosis
HRT should be used for as short a period of time as possible and the need for continuing use should be reviewed every six to 12 months.
Preventing breast cancer
The publication of studies in 2002 and 2003 showing the risks of serious disease with HRT outweighed the benefits prompted immediate and rapid declines in use.
Menopausal hormone therapy use in Australia fell by 55% from 2001 to 2005. This was accompanied by a 9% fall in breast cancer diagnoses in women aged 50 and over, or around 800 fewer women diagnosed with invasive breast cancer annually. Similar reductions in use and subsequent breast cancer rates occurred in the United States.
The research published in the early 2000s attracted intense scrutiny. It was released at a time when menopausal therapy was widely used and promoted for its benefits, including the notion that it was “good” for women and would keep them healthier and somehow younger. Strong commercial interests were also at play.
Around 12% of women aged 40 to 65 years, or 500,000 women in Australia, are currently using menopausal hormone therapy. The majority have used it for more than five years.
Menopausal hormone therapy is estimated to cause at least 450 breast cancers each year in Australia – around 3.5% of all breast cancers.
More judicious and shorter-term use of menopausal hormone therapy could therefore further reduce the number of women suffering hormone therapy-related breast cancer, ovarian cancer and stroke.
What does this mean for you?
Menopausal hormone therapy should not be universal or automatic for women going through menopause. Nor should it be used to prevent diseases relating to ageing. This is a major change from what I was taught when I went to medical school in the early 1990s.
Although the news about the risks of hormone therapy isn’t great, it’s good that we’re aware of these risks and we no longer face the situation where many millions of women are using it, with little reliable evidence on its effects.
We now know that menopausal hormone therapy is a medication like any other, with risks and benefits and specific indications for use, including the treatment of moderate to severe menopausal symptoms, in informed women.
It’s not for doctors, researchers or other commentators to decide how to balance relief of menopausal symptoms against the risks of HRT for individual women considering use. That difficult task falls to women themselves, supported by the sum-total of the worldwide evidence and professionals and practice informed by that evidence.
When friends and family ask me about whether or not they should use menopausal hormone therapy, I advise that the current evidence is that they should avoid it if they can.
If they have menopausal symptoms that are sufficiently severe to warrant therapy, hormone therapy remains an important option. But it should be used for as short a time as possible, with regular (preferably six-monthly) reviews to check whether it’s still needed.
There are reports in the media about the risk of Breast Cancer from HRT. It is also said that long-term use of HRT is not recommended. This study was reported in the International Journal of Cancer, and was partly funded by the Cancer Council of NSW. All these reports have to be examined thoroughly and understood. The conclusion we can come to fully supports what I have been saying (and others like me) for some time – Standard, synthetic HRT may increase the breast cancer risk. The women in this study were on the usual, synthetic HRT containing Progestagens, not the natural Progesterone I use. Many of them were on the oral (pill form), which we know increases the risk of breast cancer. Those of you who have been following this blog understand that hormones should always be given transdermally, either by creams or troches. The other difference is that these women were on the “one size fits all” HRT. It is essential that the dose is tailored to the individual person. Finally, if used correctly, using Bioidentical hormones, the research shows that there is significant long-term benefits. ( see my web-site under Menopause Recommendations)
Finally, I have been using BHRT for the last 25 years in over 4000 women. Doing a search of my database reveals about 5% (1 in 20) of my patients have developed breast cancer while on the BHRT. The national average is about 10-12 % (1 in 8) of all women will develop breast cancer. These figures will be reassuring to those of my patients on BHRT.
Here is one of many studies confirming the above. More available on my web-site under Safety Of BHRT.
1Department of Gynecology and Obstetrics, Université Libre de Bruxelles, Bruxelles, Belgium. firstname.lastname@example.org
Hormone replacement therapy (HRT) in young postmenopausal women is a safe and effective tool to counteract climacteric symptoms and to prevent long-term degenerative diseases, such as osteoporotic fractures, cardiovascular disease, diabetes mellitus and possibly cognitive impairment. The different types of HRT offer to many extent comparable efficacies on symptoms control; however, the expert selection of specific compounds, doses or routes of administration can provide significant clinical advantages. This paper reviews the role of the non-oral route of administration of sex steroids in the clinical management of postmenopausal women. Non-orally administered estrogens, minimizing the hepatic induction of clotting factors and others proteins associated with the first-pass effect, are associated with potential advantages on the cardiovascular system. In particular, the risk of developing deep vein thrombosis or pulmonary thromboembolism is negligible in comparison to that associated with oral estrogens. In addition, recent indications suggest potential advantages for blood pressure control with non-oral estrogens. To the same extent, a growing literature suggests that the progestins used in association with estrogens may not be equivalent. Recent evidence indeed shows that natural progesterone displays a favorable action on the vessels and on the brain, while this might not be true for some synthetic progestins.
Compelling indications also exist that differences might also be present for the risk of developingbreast cancer, with recent trials indicating that the association of natural progesterone with estrogens confers less or even no risk of breast cancer as opposed to the use of other synthetic progestins.
In conclusion, while all types of hormone replacement therapies are safe and effective and confer significant benefits in the long-term when initiated in young postmenopausal women, in specific clinical settings the choice of the transdermal route of administration of estrogens and the use of natural progesterone might offer significant benefits and added safety.
Associate Professor; Director, Psychology Clinic at Swinburne University of Technology
Damian Adams is an advocate for the rights of donor-conceived people.
Fiona Kelly held a Social Sciences and Humanities Research Council Grant (Canada) that addressed the legal needs of single women who use assisted reproduction from 2008-2013.
Loretta Houlahan has previously been employed at Melbourne IVF, Monash IVF and City Fertility Centre. She is a current member on the Patient Review Panel, a lawyer at Parke Lawyers and consults at Australian Workplace Strategies. Loretta has also been a member of the Fertility Society of Australia. These views are her own.
Deborah Dempsey and Roger Cook do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond the academic appointment above.
Last month, you submitted your questions about donor conception and IVF and we put them – and some of our own – to The Conversation’s experts in law, embryology, sociology, psychology and donor conception.
Here are your questions answered (scroll down or click on the links below):
Q1. How much are men compensated for donating sperm and women for donating eggs?
A. Deborah Dempsey, sociologist:
In Australia, human eggs and sperm cannot be treated as goods that are bought or sold. It’s permissible to pay egg and sperm donors “reasonable expenses” (such as travel and parking) and medical costs incurred in the process of making their donation. Although the actual sum paid varies, for sperm donors it is generally around A$250 per donation.
For egg donors, it is substantially more as it’s a much more invasive medical procedure. Women are required to self-inject drugs for several days to hyper-stimulate their ovaries and need to be monitored to ensure there are no serious side effects. Eggs must be extracted by a medical practitioner, and this usually requires an anaesthetic and a half-day stay in hospital.
If there is too great a financial gain attached to providing eggs and sperm, one concern is that people will be motivated by money rather than a desire to help infertile men or women, and this could cause harm. Potential donors, for instance, may be more likely to conceal a health condition that could be passed on to intended parents or children because they wanted to receive the fee.
The issue of compensation is currently a hot topic due to a national shortage of both egg and sperm donors in Australia. In April, one group of fertility clinics made headlines for offering A$5,000 payments to cover egg donors’ expenses. Debate centred around whether this flat fee could be considered an “inducement” to participate, just as it did several years ago when a different clinic offered A$7,000 to Canadian students willing to come to Australia for a working holiday and to donate sperm.
I agree with a number of other scholars who argue it’s time we looked seriously at whether the principle of “reasonable expenses” is useful in taking into account the actual risks, costs and inconveniences incurred by egg and sperm donors, and the interests of children born from such donation.
Q2. Where do donors come from?
A. Loretta Houlahan, embryology lecturer:
Clinic-recruited donation is probably the most well-known method of donation.
Because of the critical shortage of donor eggs and sperm in Australia, some clinics are now recruiting from overseas. This is generally permitted if it complies with local laws.
Patients can also ask someone they know to donate to them. This is commonly a friend or family member, however, some people may find their donor through online forums as well. Advertising online is subject to many legal restrictions, so be careful if you go down this route.
Sperm donation can also occur outside the clinic environment. Private insemination with donor sperm is not necessarily illegal, but potential medical and legal issues can arise from these arrangements. Unlike clinic-recruited donors, private donors are not screened for infectious diseases and donors often advertise online without their true identities being confirmed.
There are also no restrictions on the number of children that can be fathered from a single donor in a private donation scenario. One Sydney “freelance sperm donor” claims to have fathered 18 children. In contrast, clinic-recruited donors are only allowed to produce a limited number of families. They can also be removed from use if abnormalities are detected in the offspring.
There are pros and cons to both clinic and private donation, however, patients should seek medical and legal advice if they choose the latter.
Q3. What sort of identifying information is filed about open donors on the information register?
A. Fiona Kelly, legal scholar:
Under Australian guidelines, all donors in Australia are required to be “open donors”. Anonymous donors ceased to be available across the country in 2005, though some states abolished anonymity earlier.
The guidelines require fertility clinics in Australia to collect the following information from sperm and egg donors:
name, any previous name, date of birth and most recent address
details of medical history, family history, and any genetic test results that are relevant to the future health of the person conceived by egg or sperm donation (or any subsequent offspring of that person) or the recipient of the donation
details of physical characteristics.
Clinics are also obliged to tell egg and sperm donors that it is their ethical responsibility to keep the clinic informed about any changes to their health that may be relevant to the persons born or the recipients of their donation, and about changes to their contact details.
Clinics are not required to proactively gather additional health information or change of address details. So it’s possible that the information a donor-conceived person receives when they turn 18 is not up to date.
In some states and territories, such as Victoria and New South Wales, donor information is held in a central register, while other states and territories require the clinics to maintain the data.
Q4. When and how should you tell children they’re donor-conceived?
A. Damian Adams, donor conception researcher:
Discovering you’re donor-conceived later in life can potentially lead to confusion, anger and distrust of the family members who kept the secret from you.
Some researchers argue that telling children earlier in life causes less harm. Associate Professor Ken Daniels, a sociological researcher into donor conception, writes that “a child should never be able to remember a time when he/she did not know”. Others suggest it should at least occur before the identity construct window of adolescence occurs.
As there is currently no evidence that more problems arise by telling early, doing so while young has the least potential to create problems.
There are numerous books on the market that can assist parents in how to tell, as well as numerous online resources. One of the better ones is run by the Victorian Assisted Reproductive Treatment Authority (VARTA) which has been running very successful “Time to Tell” campaigns for many years and has numerous informative pages on their website dealing with this.
Q5. What kind of contact can donors expect when their offspring are adults?
A. Roger Cook, psychology scholar:
When offspring reach adulthood it’s possible for them to initiate contact with their donor, the outcome of which is varied. Some offspring reach strong relationships with their donor parent and some do not. There are, of course, some offspring who do not want to make contact.
Typically, however, if both the donor and the offspring are enthusiastic and prepared for contact, an on-going relationship can emerge but it’s not usually a parenting relationship. Often, the young adult can develop and maintain positive relationships with his or her biological father or mother but retain affection for the parents who raised them.
Q6. What are the options for gay men to start a family?
A. Deborah Dempsey, sociologist:
Australian gay men’s pathways to creating families with children are diverse, although relatively limited compared to men in the United States.
Australian gay men’s history of involvement in known sperm donation for lesbian and single heterosexual friends and acquaintances dates from at least the 1980s. Some men are able to negotiate “donor dad” or parental relationships with children conceived in this way.
Since the early 2000s, it has become popular for Australian gay men to form families through surrogacy, particularly commercial surrogacy arrangements abroad.
For gay men who are US residents, adoption is a well-documented path to parenthood. Though laws in some Australian states do not permit gay men or lesbians to adopt. And relatively few children are available for adoption in Australia.
La Trobe University researcher Jennifer Power and her colleagues investigated family make up in the 2012 Work, Love and Play study. Of the 88 gay and bisexual men who described themselves as “actively involved” in parenting a child:
39% had become parents in a previous heterosexual relationship
23% were parenting children conceived through surrogacy
19% had become parents through known sperm donation to lesbian couples or single women
11% were foster parents or permanent carers.
Q7. What logistical barriers do lesbian couples face when starting a family?
A. Deborah Dempsey, sociologist:
Lesbian couples using clinical donor insemination, known donor insemination or IVF to form families with children must navigate a complex range of logistical, social and emotional issues.
Finding a suitable known donor can be difficult because of the need for compatible expectations about parenthood. Men may want more or less involvement than the lesbian parents feel comfortable with; they may feel awkward or uncertain about the responsibilities attached to giving sperm; or their partners may not approve of the idea.
For some lesbian couples, deciding who will become pregnant and whose eggs will be used will be straightforward and for others, it will be emotionally difficult. It really depends on how the women view the issue of being genetically related to the child, and their feelings about how important it is to become pregnant and give birth.
In some US states, a procedure called “reciprocal IVF” is offered so both women can have a biological relationship to the child. One woman provides the egg, while the other becomes pregnant and gives birth. However this procedure is currently only possible in Australia if the couple has fertility problems.
Q8. Who goes on the birth certificate when using a sperm or egg donor? And what about if the couple is same-sex?
A. Fiona Kelly, legal scholar:
Where a couple or single woman has used assisted reproduction (ART) to conceive, the donor is not named on the birth certificate. Rather, the recipient parent(s), who are the legal parents of the child, are named, provided they were married or in a de facto relationship at the time of conception.
In all states and territories, the woman who gives birth to a child born as a result of ART is the “mother” of that child. When a married woman or a woman in a de facto relationship with a man becomes pregnant as a result of assisted reproduction her partner is presumed to be the father, provided he consented to the procedure.
All Australian jurisdictions also presume the same-sex partner of a birth mother who has used ART to conceive is a legal parent of a child born. In other words, same sex couples and opposite sex couples are treated identically.
The language that is used on birth certificates may vary. For example, in Western Australia, the partners may register as “mother” and “parent”; “mother” and “mother”; or “parent” and “parent”. In the ACT, a person may be registered as “mother”, “father” or “parent”.
Several states make a notation on the child’s birth certificate, indicating that further information is available about the child’s birth. The notation ensures the child can determine that he or she is donor conceived, particularly in the event of the child not having been informed by their parents of the nature of their conception.
Q9. How much does IVF cost?
A. Loretta Houlahan, embryology lecturer:
Back in 1987, the cost of IVF treatment was about A$3,500 to A$4,500 and the pregnancy rate was around 40-50% after three attempts. At the time, Professor Carl Wood, one of the pioneers of Australian fertility treatment, said:
as the test-tube procedure has been developed only recently, it is reasonable to assume that with further improvements the cost may be reduced and the success rate increased.
Arguably, the reverse has occurred with live birth rates reported to be as low as 4% at one IVF clinic. Further, despite a large proportion of IVF now being subsided by Medicare, the going rate for a fresh IVF cycle is around A$10,000, with out-of-pocket expenses commonly over A$4,000 before private health insurance rebates.
Using donor sperm or eggs costs more again, with clinic-recruited donor sperm usually costing around A$1,000 per treatment. Although, actually paying a donor for their eggs or sperm remains illegal.
Q10. What are the success rates for IVF?
A. Loretta Houlahan, embryology lecturer:
Fitness guru Michelle Bridges recently caused a stir when she suggested her ability to conceive naturally at 44 was because of her and her partner’s healthy lifestyle.
While lifestyle factors such a smoking and weight will play a role, the biggest contributing factor to infertility is the woman’s age. So while Michelle Bridges’ 12-week body challenge may reduce your body mass index, drinking protein shakes and running on the treadmill cannot turn back the clock.
The highest success rates are reported in women under 30 who have an around a 26% change of a having a baby with IVF. Women over 40 have around a 6% chance, and as for women 44 or older such as Michelle, the chances of going home with a baby is less than 1%. Michelle was lucky. Most women her age would need donor eggs.
There is also a wide discrepancy between the success rates of IVF providers. The last report showed overall results ranged from 4% and one clinic to 30.9% at another.
There is also evidence to suggest having a younger male partner may improve IVF outcomes in women. This doesn’t necessarily mean women should go out looking for a young male sperm donor, it just shows there are many factors at play, many of which are out of patients’ control.
Q11. Is sex selection legal in Australia? Should it be?
A. Deborah Dempsey, sociologist:
Sex selection using assisted reproductive technology is only legal in Australia to reduce the risk of transmission of a serious genetic conditions, such as duchenne muscular dystrophy.
Sex selection of embryos created through IVF is done using a technique called pre-implantation genetic diagnosis (PGD). This technique enables the removal of one or more cells from an embryo so it can be tested for genetic abnormalities prior to implantation.
Some Australians would like to use PGD for “family balancing” reasons. Australians often consider it ideal to have at least “one of each” in their family, although in many parts of the world there is a cultural preference for sons. Australians are known to travel overseas to obtain sex selection services in countries where clinicians will perform PGD for non-medical reasons.
While I understand that some parents have a very strong desire to have children of both sexes, my personal view is the practice is undesirable and discriminatory. If we take the “family balancing” idea seriously enough to legally facilitate it, we are perpetuating the view that boys and girls are so different from each other that families with children of one sex are “unbalanced” and somehow deficient.
There would also be no impediment to using the procedure to support more extreme forms of gender discrimination, for example, in cases where families favour having sons.
Q12. How long can donor eggs and sperm stay in the freezer?
A. Loretta Houlahan, embryology lecturer:
Donor eggs and sperm are often frozen before they’re given to recipients. This allows donors to be tested for infectious diseases and genetic abnormalities, transported interstate or overseas, if needed, and to be readily available for patients who need them.
Some people express concerns about the survival rates of donor eggs or sperm that were frozen many years ago. But as long as they’re stored correctly, there is no biological limit on the amount of time eggs or sperm can remain in frozen. Just like Elsa in the movie Frozen, the cold never bothered them anyway, and staying frozen doesn’t reduce their thaw survival rates.
The main problem with eggs and sperm that were frozen many years ago is that the older freezing methods were not as good as the new ones. Eggs frozen using the now-outdated “slow frozen” method have poorer survival rates than those that have been vitrified (“snap frozen”).
There is also limited information about the success of egg freezing in general. So while we know eggs can survive the thaw process, we don’t know the how many babies are being born from this process.
Sperm isn’t usually vitrified like eggs are, but advances in sperm freezing technology have also improved success rates over time.
So, to sum it up, donor eggs and sperm can theoretically remain frozen indefinitely – although there are legal restrictions on this.
Q13. How difficult is it to obtain information about overseas donors/surrogates?
A. Damian Adams, donor conception researcher:
Australian clinics are mandated to follow National Health and Medical Research Council’s guidelines which stipulate that all donor-conceived people (since the guidelines came into effect in 2005) are entitled to know identifying information on the donor once they reach 18 years of age. Subsequently, if clinics are sourcing eggs or sperm from overseas, the information available must meet our guidelines.
We are yet to see whether any donor-conceived people have trouble accessing this information as those conceived under these guidelines as they’re yet to turn 18. Those conceived prior to this will be at the mercy of whatever agreement the Australian clinic and the overseas clinic had in the supply of those gametes and associated information. The donor-conceived are then also reliant on a foreign business maintaining and looking after those records.
Anecdotal evidence from older donor-conceived people overseas does not paint a rosy picture of possible outcomes from seeking information, although it is hoped that their practices have also changed for the better as has been the case in Australia.
Q14. How are donor eggs and sperm transported interstate and overseas?
A. Loretta Houlahan, embryology lecturer:
After eggs and sperm are frozen, they need to be kept in liquid nitrogen, which is about minus 196 degrees Celsius. This can make transportation tricky, as liquid nitrogen is really dangerous, and if it was to leak it could easily kill the courier or the any one else around at the time.
Luckily, scientists have come up with a special device called a “dry shipper” which allows frozen embryos, eggs and sperm to be transported safely while keeping everyone safe. Dry shippers absorb the liquid nitrogen in the walls so it doesn’t leak, but it still keeps everything cold.
Very occasionally, this process can fail, but most transportation occurs successfully without any damage to patient material.
Q15. What barriers do donor-conceived people face in obtaining information about their biological mother or father?
A. Damian Adams, donor conception researcher:
This is highly dependent on when the person was born and which state they were born in. Those conceived from 2005 onwards around Australia, and 1998 onwards in Victoria, are entitled to access identifying information. Prior to those dates, donations were primarily anonymous.
For those conceived under anonymous conditions there are, however, voluntary registers in Victoria, Western Australia and New South Wales which offspring can put their details on in the hope that the donor will also place their details on the register. If the donor is not on the register – or if they were conceived in another state – the offspring will be reliant on assistance from the clinic.
Research my colleagues and I published in 2012 on accessing information in Australia showed some people found dealing with the clinics quite difficult (others have found them helpful), and if information was available that there was no national consistency on what information was recorded.
In some instances, records had been destroyed or redacted. We have also seen instances of registers failing to match people who were later matched through DNA testing.
So, some younger offspring may find it easy, while older offspring may find it difficult or even impossible.
Q16. Can donor-conceived people access information about their donor if they were conceived before anonymity was abolished?
A. Fiona Kelly, legal scholar:
The only state in which donor records have been opened retrospectively is Victoria. As of June 2015, all donor-conceived people who were conceived in Victoria may apply for access to their donor’s identifying information, with the donor’s consent.
In other states, there is no right of retrospective access. However, in a number of states, such as NSW and WA, donor-conceived people may place their names on a voluntary registry. If both the donor-conceived person and the donor register, access is permitted by mutual consent.
Q17. Will using donor eggs from a younger woman increase my chances?
A. Loretta Houlahan, embryology lecturer:
Women over 40 are the main recipients of donor eggs. Using donor eggs from a younger woman significantly increases the chances of success.
However, using donor eggs doesn’t eliminate all complications. Women who use donated eggs have a higher risk of developing serious complications, specifically high blood pressure and pre-eclampsia. Although it was thought these dangers may have been linked to the age of the birth mother and not the egg donor, the real reason remains unknown.
There is also a difference between fresh and frozen eggs to consider. Fresh is best because the success rate with thawed eggs remains unclear. However, this option is not always available where donor eggs are involved. Until only recently, egg freezing was considered experimental so we are still learning a lot about this process.
Q18. What motivates men to donate sperm, and women to donate eggs?
A. Roger Cook, psychology scholar:
Both sexes are motivated, at least in part, by a sense of altruism.
In the past, some men were enticed to donate by payments, albeit very low amounts. This became less common through the 1980s and now some clinics provide some reimbursement but no inducement payments. The Human Tissue Act of 1982 prohibits commercial profiting from semen donation. Financial reward is not a current motivation.
The motivation for men to donate sperm changed somewhat after laws were introduced prohibiting anonymous donation. Donors must now be prepared to be identified and allow contact with their donor children. This has reduced the number of men donating, as the necessity of identification is incompatible with their sense of privacy.
Another motivation for some men is a desire to be biological fathers, particularly when they’re unlikely to form a parenting relationship with a woman.
Women are usually more reluctant than men to give away their DNA, except when they have had their own experience of IVF. This is likely related to the significance of pregnancy and child birth experience, which men experience in a different way.
Women who donate their eggs are have been through infertility treatments such as IVF, and therefore have some understanding of the distress that follows such circumstances. Their motivation is to help other women who are not able to produce their own viable eggs.
Q19. Why do I need ICSI (sperm injections) if I use donor sperm?
A. Loretta Houlahan, embryology lecturer:
A common source of confusion for patients is why they need to use intra-cytoplasmic sperm injection (ICSI) when using donor sperm. ICSI is usually preserved for treatment where the male partner has a low sperm count and costs a lot more than a standard IVF treatment.
The main reason ICSI is used is because of the critical shortage of donor sperm. To enable supply to meet demand, the donor sperm sample may be diluted. This way it can be used in more patient treatments. The downside to this is that because diluted samples contain such a low volume of sperm, ICSI is required for the insemination procedure.
ICSI is also required to inseminate frozen-thawed eggs. In order to freeze eggs, the “cumulus cells” that surround them need to be removed. In natural conception, as well as standard IVF, the cumulus cells act like a maze and the sperm are required find their way through these cells to get to the egg.
It also acts like a barrier to limit the number of sperm that reach the end point. Without the cumulus cells in-tact, the risk of more than one sperm fertilising the egg is too high, so ICSI is used to avoid an abnormal fertilisation. With ICSI, the embryologist can ensure only one sperm enters the egg.
A group of US researchers have backed the idea that post menopausal women should have sexual intercourse at least once a week.
Their study confirms previous research that shows older women who are sexually active experience less troublesome vulvovaginal symptoms than abstinent women.
It is thought that regular vaginal sexual activity through menopause keeps vaginal tissue thick and moist and maintains the vagina’s length and width.
While up to a third of postmenopausal women experience vaginal changes like dryness, itching and pain during sex, the latest research shows such symptoms may be more disruptive for those who are also suffering from depression or urinary incontinence.
In their analysis, the researchers show women with comorbid depression report 11-22% greater impact of vaginal symptoms than those who aren’t depressed. Women with urinary incontinence report a 27-37% greater impact of vaginal symptoms on multiple domains of functioning and quality of life.
Age, partner status, frequency of sexual activity, general health, and body mass index also predict greater impact on at least one domain.
Writing in the journal Menopause, the researchers say their study of 745 postmenopausal women shows that depression and urinary incontinence magnifies the effects of vulvovaginal symptoms on women’s activities, feelings and relationships.
“Postmenopausal women experiencing these comorbid problems may be in special need of evaluation and treatment,” they say.
Pre- or postmenopausal patients with epithelial ovarian cancer can safely be treated with adjuvant Estrogen Replacement Therapy (ERT), a recent study  reports.
Ovarian cancer is common and we estimate that the number of patients diagnosed with ovarian cancer in Australia (currently 1,300 per year) will still increase over the years. According to Australian government statistics more than 9,000 women diagnosed with ovarian cancer in the last 30 years are alive and well at present.
A large number of postmenopausal women are on ERT to alleviate symptoms that would affect their quality of life. Uncertainty existed whether these women could remain on ERT.
In addition, a significant number of premenopausal women are diagnosed with ovarian cancer every year and gynaecological oncologists are often asked how the issues of hot flushes, coronary artery disease and osteoporosis should be managed.
Retrospective data on ERT in patients diagnosed with ovarian cancer previously suggested a 25% improved survival for those women who received ERT. However, the difference was not statistically significant. However, retrospective data are always fraught with selection bias and definitive conclusions are impossible to draw from retrospective data.
In an ERT trial, a research team led by Rosalind A. Eeles, MD, of the Institute of Cancer Research in London, investigated if patients with ovarian cancer could safely take ERT to improve severe menopausal symptoms after cancer treatment.
In the study, women with epithelial ovarian cancer of any stage were randomly assigned to receive ERT for 5 years from 1990 to 1995 (75 women) or not receive hormone therapy (control group with 75 women) after ovarian cancer treatment. All patients had been diagnosed within 9 months and 63% were FIGO disease stage III or IV. The median patient age was 59 years and 77% of the patients were postmenopausal. The study assessed 19 years of patient follow-up.
The results are welcoming news for ovarian cancer patients who suffer from menopausal-like symptoms. For women with epithelial ovarian cancer, ERT is associated with improved survival. At data analysis, 81% of all patients had died. The rate of mortality was 71% in the ERT group compared with 91% in the control group (no hormone therapy). Relapse-free survival was also better in the ERT group compared with the control group. In the ERT group the median treatment time was 1.14 years. The majority of deaths in both groups were due to ovarian cancer. Adverse event rates were low and comparable for both groups.
The important message here is that there is no concern about hormone replacement therapy in the context of ovarian cancer. An increasing number of patients with ovarian cancer will survive their disease and as clinicians we need to make sure these women do not simply survive but survive well at a high quality of life.
These results are also extremely similar to results from trials in cervix and uterine cancer. In both trials, patients who were put on ERT by their surgeons did at least equally well (if not better) compared to patients who did not go on ERT.
In my clinical practice, I am cautious about ERT in patents with ovarian cancer that arose in the background of endometriosis (most of clear cell cancers do). It is widely accepted that endometriosis is fuelled by estrogen and I would be inclined to make alternatives to estrogen available for those very few patients. Those alternatives may include Efexor at a dose of 37.5 mg tablets or topical estrogen vaginally that will not be absorbed at large concentrations into the blood stream.
Some of our readers may argue that a relationship between the risk of ovarian cancer development and Hormone Replacement Therapy (HRT) is widely accepted. According to a recent study published in Lancet this year one additional ovarian cancer will develop for every 1000 women who take HRT for 5 years and one extra ovarian cancer death will happen for every 1700 users .
However, the real question is not whether HRT causes ovarian cancer but it is whether the benefits of ERT outweigh the disadvantages in woman diagnosed with ovarian cancer.
In my personal opinion it is debatable whether women diagnosed with ovarian cancer who do not suffer from menopausal symptoms should receive hormone replacement therapy. It seems that this UK study has given us the OK to treat women with ERT as if they did not have ovarian cancer.
As always, please feel free to share this article to people you believe could be interested in it.
 Eeles RA, Morden JP, Gore M, et al. Adjuvant hormone therapy may improve survival in epithelial ovarian cancer: results of the AHT randomized trial. [published online ahead of print September 18, 2015]. J Clin Oncol. doi: 10.1200/JCO.2015.60.9719.
 Menopausal hormone use and ovarian cancer risk: individual participant meta-analysis of 52 epidemiological studies. Collaborative Group on Epidemiological Studies of Ovarian Cancer; Lancet 2015; 9980:1835 – 1842. DOI: http://dx.doi.org/10.1016/S0140-6736(14)61687-1
Are Fats Unhealthy? The Battle Over Dietary Guidelines
OCT. 12, 2015
The Department of Agriculture, which establishes dietary guidelines every five years, will announce its latest guidelines later this year. Credit Yana Paskova for The New York Times
[Aaron E. Carroll]
Aaron E. Carroll
THE NEW HEALTH CARE
People are passionate about food. People can also become pretty passionate about nutrition.
We got a taste of that this month over early efforts to influence the dietary guidelines that the United States Department of Agriculture establishes every five years. We got even more last week, when a congressional hearing on the scope and reliability of the science behind recommendations became heated.
It started when Nina Teicholz wrote an article in a respected medical journal, BMJ, arguing that the Dietary Guidelines Advisory Committee that advises the agriculture department isn’t using good research to make its decisions. Ms. Teicholz, a journalist, is the author of “The Big Fat Surprise: Why Butter, Meat and Cheese Belong in a Healthy Diet.” Her biggest concern is how fats are treated.
The New Health Care
Informed by research, Austin Frakt and Aaron Carroll explore and explain the changing landscape of health care.
Much of what we know about nutrition is based on small, sometimes flawed, short-term studies. Doing more than that is often very difficult and very expensive. But every once in a while, good research does occur that can truly inform our thoughts and decisions on nutrition policy.
The problem is that such research is often ignored. I wrote some months ago about the potential for the Dietary Guidelines Advisory Committee to change that; the report issued recently argues that it did.
Before I go on, a quick primer: The Department of Agriculture guidelines for nutrition, which will be released later this year, are very influential. They are relevant in labeling food, in setting National Institutes of Health research priorities, and in determining what edibles are distributed to needy families.
Before the report is issued, a scientific committee reviews the relevant, and hopefully new, research and recommends changes from the last report. In 2010, the Department of Agriculture formed the Nutrition Evidence Library (N.E.L.) to help conduct systematic reviews of the literature for use in making recommendations.
But the Nutrition Evidence Library was used for only 27 percent of the science-based research questions the committee chose to pursue. For an additional 45 percent of the questions, the committee relied on existing systematic reviews, meta-analyses or reports. For the last 28 percent or so, it used “data analyses and food pattern modeling analyses.” Ms. Teicholz argues that many of the organizations that supplied much of the evidence used by the committee have conflicts of interest, because they are supported in part by industry.
Some of the questions, though, don’t require a full N.E.L. review. They can be answered with simple data queries or surveys. And while conflicts of interest should always be considered, ties to industry aren’t the only confllicts that are important. Everyone is conflicted in some way. It may be unreasonable to demand that all questions be subjected to N.E.L. standards.
Let’s start with saturated fats. The committee concluded that existing reports argue that replacing saturated fats with polyunsaturated fats seems to reduce the risk of cardiovascular events and mortality. It also acknowledges that replacing fats with carbohydrates, which many people seemed to do after fats in general were shunned in previous reports, does not lower risk. The committee therefore concluded that saturated fats should be limited to 10 percent of intake and replaced with polyunsaturated fats such as those from nonhydrogenated vegetable oils.
Ms. Teicholz argues that the committee ignored many important studies that might have altered its recommendation. The biggest is the Women’s Health Initiative Dietary Modification Trial, which randomly assigned almost 49,000 women to different diets. The intervention encouraged participants to reduce their total fat intake to 20 percent, and increase consumption of vegetables and grains. There was a reduction in saturated fats, but it did not result in any significant benefits. Ms. Teicholz says that this proves that a reduction in saturated fats does not improve health.
I don’t think that’s so clear. The study also resulted in a reduction of unsaturated fats and an increase in carbs. That’s specifically what the committee argues shouldn’t happen. It says that bad fats should be replaced with better fats. However, people did reduce their saturated fats to 10 percent of intake, and didn’t see real improvements in outcomes. This has led many to question whether the quantitative recommendation made by the committee is supported by research.
Finding a direct link is hard. Most of the committee’s thinking seems to be that (1) saturated fat intake is related to cholesterol levels and that (2) cholesterol levels are related to heart disease. It therefore makes the leap that saturated fat intake is related to heart disease. As trials like this show, that’s not nearly as clear as many say.
Ms. Teicholz furthers this point by citing two meta-analyses that show that the evidence against saturated fats might be weaker than assumed. (I’d add in this one from the BMJ in July). A third that she notes, however, which I’ve discussed before, supports the committee more than it disputes it. As for the other two, I know some people have argued those studies are flawed, but I would have liked committee members to explain why they think that’s so, if they’re not going to include them. Otherwise, they appear to be cherry-picking.
What troubles me about this summary is complete lack of consideration of genetic differences. Some people can eat whatever they like without…
William Decker 18 hours ago
As a Chef for 40 + years I have lectured widely to ACF (American Culinary Fed.) and other Chef groups for years that ‘saturated fat is not…
Siobhan 18 hours ago
When the low-fat high carb diet was first recommended several decades ago, everyone I knew who followed it faithfully bought 700 calorie…
Ms. Teicholz also takes exception to the committee’s lack of enthusiasm for a low-carbohydrate diet. It is true that the report chose not to update its stance from 2010, basically arguing that there still isn’t enough long-term evidence to support such a diet over a balanced one. She states that two meta-analyses have found that a low-carbohydrate diet is superior to control diabetes, and that two more have found it’s highly effective for weight loss.
Although I am sympathetic to Ms. Teicholz’s arguments that many have ignored the potential for low-carbohydrate diets for too long, I’m not sure that I completely agree with her here. Controlling diabetes, while important, isn’t the subject of the dietary guidelines. And when it comes to weight loss, the committee didn’t completely ignore the low-carbohydrate diet. It is offered, along with many others, as a viable way to achieve weight loss.
Even the studies that Ms. Teicholz cites for weight loss, which I’ve discussed before, say that pretty much all diets, even those she disapproves of, work to some extent. There’s no clear winner, and no clear loser.
Ms. Teicholz does hit on one note on which we agree. As I wrote about here at The Upshot, a growing body of evidence should give people pause before they continue to argue that everyone needs to consume less sodium. While the Institute of Medicine and many studies have brought into question whether consuming less than 2,300 mg/day of sodium is a good idea for most people, the advisory committee report still seems to focus on people with high blood pressure, and recommends they consider limiting sodium consumption to less than 1,500 mg/day.
Although there are some issues one might take with the clarity of the subcommittee’s report, or with some of their interpretations of the evidence, I still believe they are more science-based than in years past. The tone of Ms. Teicholz’s article and of responses by the committee and many, many others show how charged these arguments have become.
Much of this is probably because of past sins. We have, for too long, made decisive proclamations based on research that did not support them. (Remember when butter and fortified margarine was its own food group?) It was inevitable that some of those assurances would need to be retracted or amended. But now, we have gotten to a point where food has become ideological, and where motives are questioned based on results and not methods.
We know much less for sure than we think, and recommendations that forcefully tell people exactly what and precisely how much they should or should not eat can be counterproductive.
I still maintain that it might be more helpful to focus on food and not nutrients, on health and not process measures.
Aaron E. Carroll is a professor of pediatrics at Indiana University School of Medicine. He blogs on health research and policy at The Incidental Economist, and you can follow him on Twitter at @aaronecarroll.
Risk factors for hot flashes among women undergoing the menopausal transition: Baseline results from the Midlife Women’s Health Study
Menopause, 10/09/2015 Gallicchio L, et al.
The aim of this study was to examine the associations of demographic characteristics, health behaviors, and hormone concentrations with the experience of any, current, more severe, and more frequent midlife hot flashes. Although the temporality of such associations is not known because of the cross–sectional nature of the data, these observed relationships can help to identify women at risk for hot flashes.
Baseline data from 732 women aged 45 to 54 years who were enrolled in the Midlife Women’s Health Study were analyzed.
A clinic visit was conducted to collect blood samples for hormone assays and to measure ovarian volume using transvaginal ultrasound.
A self–administered questionnaire ascertained information on demographic factors, health habits, and hot flash history.
Multivariable logistic regression was conducted to examine associations between potential risk factors and hot flash outcomes.
Approximately 45% of participants reported experiencing midlife hot flashes.
In covariate–adjusted models, older age, perimenopause status, current and past cigarette smoking, and depressive symptoms were significantly associated with increased odds of all of the hot flash outcomes.
In addition, history of oral contraceptive use was associated with increased odds of any hot flashes.
In contrast, higher current alcohol intake was significantly associated with decreased odds of any, current, and more severe hot flashes.
Higher estradiol and progesterone concentrations were significantly associated with decreased odds of all hot flash outcomes.
Oestrogen has consistently been shown to benefit joints, and arthritis especially. The various menopause associations all accept this side benefit to using oestrogen. This study below is further evidence of this, and shows that even taking the contraceptive pill, containing oestrogen, helps women’s joints.
Past or present use of an oral contraceptive may protect women from the worst symptoms of arthritis, say German researchers.
In their study of nearly 300 women with early inflammatory arthritis, current or past users of the pill report significantly better outcomes on a wide range of scores.
These include the Rheumatoid Arthritis Impact of Disease Score (RAID), Rheumatoid Arthritis Disease Activity Index (RADAI), the Profile of Mood and Discomfort (PROFAD) and the Hannover Functional Assessment (FFbH).
The researchers from the German Rheumatism Research Centre in Berlin have found that women who have never been on the pill are much more likely than those who have to use glucocorticoids within two years of diagnosis, an association they describe as “remarkable”.
But they say the effects of the pill seem restricted to patient-reported outcomes, rather than in the parameters of active inflammation.
They say their findings “support a relationship between oestrogen use and psychological well-being” in rheumatoid arthritis.
“Protective effects may be induced via central nervous pathways rather than through the suppression of peripheral inflammation,” the authors write in Arthritis Care & Research.
However, they concede that as their study is observational, it is difficult to draw causal conclusion
When Cancer Triggers (or Hides) an Eating Disorder
By Sophia Kercher July 27, 2015 3:41 pm July 27, 2015 3:41 pm
When Emmets was undergoing cancer treatment in New York over the past few years, her weight began to drop. Even though she was often nauseated and paralyzed by chemotherapy-induced neuropathy, she joked that thinness was the “bonus of cancer,” and found herself looking in the mirror and admiring her deep and hollow collarbone.
Ms. Emmets, now 39, filled her closet with extra-small size clothes. At night she pressed her fingers against her protruding bones, saying to herself, “I’m finally skinny.”
We asked our readers to share insights from their experiences with breast cancer. Here are some of their stories.
Did breast cancer change how you felt about your body?
But it was only when her cancer treatment changed that it became clear that the body-image issues she had been grappling with since her early 20s — when she would eat next to nothing and walk for six hours a day to deal with stress — had begun to resurface. When the new treatment didn’t make her sick, her appetite returned, and she began to gain weight. But instead of celebrating this sign of improving health, Ms. Emmets says she missed her size 2 jeans and was appalled by her round belly and full breasts. Her husband watched with concern as her body appeared stronger but she began imposing her own food restrictions and started shrinking again.
“During your cancer treatment, you have no control over your body — you give up your body to your doctor,” said Ms. Emmets, who wrote about her experiences on the website The Manifest-Station. “You are willing to do it because you want to live. Food restriction is the one thing that you can do to have some sense of control when everything is chaotic.”
While it isn’t known how often cancer triggers or reawakens an eating disorder, doctors and nutrition experts who work with cancer patients share anecdotal reports of patients who emerge from a difficult round of cancer treatment and weight loss only to begin struggling with a serious eating disorder that threatens their postcancer health.
After Ms. Emmets wrote about her experiences online, she heard from dozens of women who had experienced body issues during cancer treatment. One anonymous commenter wrote that after successful treatment for advanced cervical cancer, she could think only about her weight. “I have beat cancer, but all I care about is losing that weight and keeping it off,” she wrote.
A reader on another site, who gave her name as Doreen, said cancer treatment had created opportunities to hide her disordered eating.
“You are sharing my secret that I’ve carried around for over 15 years,” Doreen wrote. “I, too, used my cancer treatment as an excuse to practice my eating disorder. No one questioned why I wasn’t eating, why I was throwing up, why I was experiencing rapid weight loss.”
Eating disorders are so powerful, wrote Doreen, that even in the midst of cancer, she was compelled to “deprive my body of any nutrients at a time when it needed them the most.”
While eating disorders related to cancer appear to be uncommon, doctors say more study is needed to determine just how often they occur. A 2011 article in TheInternational Journal of Family Medicine reported on a 15-year-old girl who had begun showing symptoms of anorexia nervosa soon after beginning her treatment for advanced osteosarcoma. The article authors emphasized that they had found only three other case studies on the problem, and urged more attention to the issue. In the case of the 15-year-old, a family-based intervention helped her overcome her eating disorder.
“There needs to be more research in these areas so that people are aware of patients’ histories when it comes to their prior problems with eating, and finding ways to help them,” said Dr. Aminah Jatoi, an oncologist who has incorporated nutrition in her 16 years of work treating cancer patients at the Mayo Clinic in Rochester, Minn.
Dr. Michael Strober, director of the eating disorders program at the David Geffen School of Medicine at the University of California, Los Angeles, said that while it was unlikely that someone would develop anorexia after age 20, the eating disorder that Ms. Emmets had experienced in her 20s was accentuated by her illness. “Anything that affects body image, weight loss or weight gain, can return the illness to its prior level of intensity,” Dr. Strober said.
The nutritional therapist Robyn Goldberg, who spent five years as an inpatient clinical dietitian at Cedars-Sinai Medical Center in Los Angeles before opening a private practice in Beverly Hills, recalled two clients who both struggled with eating disorders and cancer. “I was working on optimizing nutrition when they were sick,” Ms. Goldberg said. “Once they were better, I was working with them on gaining weight, and they didn’t want to gain weight.”
Rachel Wong, an oncology dietitian, works mostly with head and neck cancer patients on getting comfortable with eating solid foods after their treatment, but she has worked with a few young female cancer patients suffering from eating disorders and cancer at MedStar Georgetown University Hospital. “Often I am made aware of the eating disorder by the oncologist,” Ms. Wong said, “Oftentimes individuals with eating disorders may not want to talk about it.”
Ms. Emmets, who sought therapy to deal with her cancer and eating disorder, said her oncologist never asked about her long history with body issues. While she doesn’t blame her doctor, she says doctors should be aware of potential eating disorder issues when patients lose or gain weight.
“It’s a real thing, and I’m not an anomaly,” she said. “I think that it needs not to be such a taboo topic.”