Prenatal care and treatment access are big factors.
By Laura Newman
Last week, the media got all excited about the possibility of a cure for HIV perinatal transmission. What was lacking was the recognition that the public remains largely ignorant about HIV in pregnant women. Yet with good wellness care, prevention, HIV testing, and medication,HIV transmission from mother to child can be close to zero. The public needs to know that women who are pregnant and HIV positive can also live good-quality lives, as can their children.
Thanks to Dr. Judy Levison, an obstetrician/gynecologist whose career centers on caring for HIV-pregnant women, I began to learn how scientific advancements in HIV-care make it possible for pregnant women with HIV and HIV-positive men to have children and not transmit the virus to their newborns. In the midst of this learning experience, I found out that a young woman I know, “Angela*,” was HIV positive and wanted to plan a pregnancy. I was shocked; I knew plenty of gay men with HIV, but rarely had I met a woman who had contracted the virus. Planning a pregnancy while being infected with HIV was something that I couldn’t imagine.
“Angela” is married and has lived with HIV for some years, with a low viral load by taking good care of herself and taking recommended antiretroviral therapy, when needed. She sought artificial insemination, one of several options available to HIV-affected couples. It worked. When she was planning her pregnancy, her parents were resistant. They worried that even though she is healthy now, that might change. They couldn’t imagine being saddled with taking care of a young child. Her parents’ resistance reminded me of the old coming-out stories we used to hear and how parents adapted to learning their child is gay. To their credit, both parents soon rose to the occasion. Angela and her spouse have a healthy toddler, and the grandparents love spending time with him.
Angela’s story isn’t everyone’s story. The hubbub at the recent 20th Conference on Retroviruses and Opportunistic Infections was not on the “functional cure” of the baby born to a pregnant woman with HIV, but on why, in this day and age, the mother doesn’t seem to have received the recommended prenatal care and antiretroviral therapy herself. Under what circumstances did she deliver? How did mom and baby get lost in the healthcare system? It’s far too easy to be captivated by a potential breakthrough and forget that plenty of people don’t get access to basic science-backed care that prevents HIV transmission in the first place.
As I describe below and as Angela’s experience illustrates, a lot of evidence shows that it is very safe for women with HIV to get pregnant, have healthy babies, and not transmit HIV to their children. Unfortunately, for many pregnant women with HIV, harsh judgments and inaccurate assumptions often carry the day. Let’s just say that HIV-positive moms and their kids have not earned the acceptance allotted to, say, a Magic Johnson, who has had HIV for decades, and with good HIV and wellness care, lives a good-quality life.
These inroads in science-based HIV prevention and care that have helped Johnson so much lag behind in poor and minority communities in the United States and low-resource countries around the world. HIV disproportionally affects African-Americans in the United States, and access to care, Medicaid cuts, and poverty reduce the chance that many people in need will receive good state-of-the-art prevention (regular testing, practicing safe sex, not sharing drug needles) and wellness care. Perinatal transmission could well rise in these communities.
Facing down ignorance
At first, being pregnant was not easy for Angela — not because her pregnancy was hard (it was not) — but because of the uneasiness some of her coworkers expressed about her becoming pregnant as an HIV-positive woman. Even though Angela worked in healthcare, some of her coworkers thought she had no business being pregnant. When she complained to her supervisor, the manager urged Angela to take it upon herself to educate staff about scientifically proven treatments for pregnant women with HIV that help moms stay well and prevent transmission to the baby. Angela asked instead for an in-service training, which was scheduled. Her colleagues’ attitudes turned around after the in-service.
It meant a lot to her to change the culture.
Angela had a normal term delivery, gave birth to a healthy baby, who is now a toddler, with no sign of HIV infection. Angela’s viral load remains undetectable. They are living healthy, high-quality lives like many other families, moms, and children.
The parents and prenatal planning
The ideal in the setting of HIV infection is that both partners are involved in preconception planning. Prevention of transmission of HIV from an HIV-positive father to an HIV-negative mom and fetus is now possible. The door is now open to HIV-positive men and women who want families but have HIV. Any plans they had to become parents have not simply vanished.
HIV research has advanced to the point that we now know that if HIV-positive individuals work with knowledgeable medical providers and have good access to proven practices, parents and children do quite well. Essential practices include:
Before trying to conceive, people should take antiretroviral drugs and have their infection under control, shown by a low viral load or undetectable levels of the virus (“undetectable” levels vary, depending on the lab) in their blood;
Couples are instructed to have unprotected sex only when the woman is ovulating. Current guidelines recommend using an ovulation prediction kit, which you can purchase at most drugstores.
Artificial insemination is another option that HIV-affected couples are using, as Angela did.
HIV testing is recommended routinely for all pregnant women, as well as for all non-pregnant adults and teens.
If a woman learns during her pregnancy for the first time that she is HIV infected, she can work with her healthcare provider to stay healthy, prevent mother-to-child transmission, and prevent passing HIV to her partner.
In general, people infected with HIV who are not pregnant begin taking anti-HIV medications when their CD4 counts fall below 500 cells/mm3 (HIV targets these immune cells and destroys them, compromising a person’s immunity). The medication regimen during pregnancy depends on whether or not you are taking medication to improve your own health or just your baby’s. In many cases, healthy women delay starting antiretroviral medication until the second trimester, which is when all women should be on HIV medication. However, HIV medication and interactions with other drugs and the fetus are complicated and require consultation with a physician. If women are diagnosed later in a pregnancy, they should start HIV drugs then. You can find detailed recommendations here.
During childbirth, women whose viral loads are still undetectable can have normal vaginal deliveries. However, according to the National Institutes of Health and other authorities, scheduled cesarean delivery at 38 weeks of gestation is recommended to reduce perinatal transmission of HIV for women with HIV-RNA levels >1,000 copies/mL or unknown HIV levels near the time of delivery, regardless of whether they were taking recommended antiretroviral drugs during pregnancy. The guidelines state that when there is a low rate of transmission (viral loads lower than 1000 copies/mL), the benefits of a scheduled c-section are unclear. Dr. Levison, an obstetrician/gynecologist at Baylor College of Medicine, Houston, TX, says that in her practice, women rarely need a cesarean section.
The newborn child
In the United States, breastfeeding is discouraged because HIV can be transmitted in breast milk. According to the Centers for Disease Control and Prevention (CDC), the risk for HIV transmission goes up as much as 45%. However, the topic of breastfeeding remains controversial. In healthy women with no HIV history, the broad consensus is that breastfeeding is best, giving babies excellent nutrition and helping the infant bond with mom. And many parts of the world have problems with sanitation and dirty water, making breastfeeding preferable to mixing formula. Outside of the US, according to Levison, in the UK, breastfeeding guidelines are more liberal. Furthermore, in some cultures, women are afraid not to breastfeed for fear that they will be outed as having an HIV infection, according to Levison, so many treating physicians adapt practice to the culture, preferences of the mom. Internationally, for example, in Africa, women often breastfeed and remain on antiretroviral drugs during that time. Formula is also costly. In the US, poor moms are eligible for formula through the federal Women’s Infants and Children’s nutritional support program.
Besides breastfeeding, HIV-positive moms need to know that pre-chewing of food before feeding baby is a transmission risk.
As soon as a woman goes into labor and during childbirth, the infantmust begin a six-week course of the antiretroviral medication zidovudine (AZT). Current guidelines also state that the baby should be tested for HIV at 14 to 21 days, at 1 to 2 months, and again at 4 to 6 months. If the viral load remains undetectable after two tests, the baby is considered to not have gotten HIV.
Resolving resource disparities
The moms, dads, and kids with HIV have enormous potential to live healthy lives for decades on proven antiretroviral drugs.
In fact, a December 2012 CDC Fact Sheet states that the number of women with HIV giving birth in the United States increased approximately 30% from 6,000 to 7,000 in 2000 to 8700 in 2006. During that same time frame, the estimated number of perinatal infections per year in all 50 states and 5 dependent areas continued to decline.
It’s not all good news, though, because of marked disparities in resource allocation and pre- and perinatal care. According to CDC data, 63% of perinatal infections were in blacks/African-Americans; 22% were in Hispanics/Latinos, and 13% were in whites. That leaves a lot of work to be done in enhancing targeted prevention programs.
Another recent milestone is that the US Preventive Services Task Force is finally about to endorse universal HIV testing, long after the CDC backed such a move in 2006. This milestone is important to because it is also linked to health reform. All public and private health plans are required to provide coverage for U.S. Preventive Services Task Force-recommended preventive services without patient copayments.
With this availability, perhaps women might learn about an HIV infection before they become pregnant, giving them time to have their own treatment in place before it is too late to protect the baby. The case report of the baby cured of HIV gives a lot of hope, but even more preferable would be preventing HIV infection in the first place, through safe sex and not exchanging needles. Once people become infected, for whatever reason, their lives should no longer be viewed as if they are at in a holding pattern until death.
The world needs to know that just like every other mom, dads and pregnant women with HIV can parent children, stay healthy, and not transmit the virus to their babies. Paramount in this is universal HIV testing for adults and teens, prevention programs, and ensuring scientifically proven treatment of the mother before, during, and after her pregnancy.
[Trigger warning: frank language about sexual assault]
By Emily Willingham
By now, you’ve probably heard the phrase: legitimate rape. As oxymoronic and moronic as it seems, a Missouri congressman and member of the House Science, Space, and Technology committee used this term to argue that women who experience “legitimate rape” likely can’t become pregnant because their bodies “shut that whole thing down.”
If his words and ideas sound archaic, it’s because they are.Welcome to the 13th century, Congressman Todd Akin. It’s possible that this idea that a woman couldn’t become pregnant because of rape arose around that time, at least as part of the UK legal code. People once thought that a woman couldn’t conceive unless she enjoyed herself during the conception–i.e., had an orgasm–so if a rape resulted in pregnancy, the woman must somehow have been having a good time. Ergo, ’twas not a rape. This Guardian piece expands on that history but doesn’t get into why such a concept lingers into the 21st century. A lot of that lingering has to do with a strong desire on the part of some in US political circles to make a rape-related pregnancy the woman’s fault so that she must suffer the consequences. Those consequences, of course, are to be denied abortion access, to carry a pregnancy to term, and to bring a child of rape into the world.
This idea that pregnancy could determine whether or not a rape occurred was still alive and kicking in 20th century US politics, so Akin’s comments, as remarkably magic-based and unscientific as they are, are still not that shocking to some groups. In 1995, another Republican member of the House, Henry Aldridge, made a very similar observation, saying that women can’t get pregnant from rape because “the juices don’t flow, the body functions don’t work.” A year after Aldridge made those comments, a paper published in a US gynecology journal reported that pregnancies from rape occur “with significant frequency.” That frequency at the time was an estimated 32,101 pregnancies resulting from rape in a single year. In other words, the “body functions” did work, and “that whole thing” did not shut down in 32,000 cases in one year alone.
Consider that current estimates are that 1 out of every 6 women in the United States will be a victim of completed or attempted rape in her lifetime and that by the close of the 20th century, almost 18 million women were walking around having experienced either an attempted or a completed rape. The standard expectation for pregnancy rates, whether from an act of violence (rape) or mutually agreed, unprotected intercourse, is about 5%.
In his comments, Akin used the phrase “legitimate rape.” He joins with his colleague of 17 years ago in ignorance about human reproduction. But he also joins legions of people with a history stretching back hundreds of years, people who blamed women for everything having to do with sex and human reproduction. In the medieval world, if a woman bore a daughter and not a son, that was her fault. If she made a man so hot blooded that he forced himself on her, that was her fault for being so attractive, not his for being a rapist. In Akin’s world, in Aldridge’s world, a woman doesn’t need abortion access or a morning after pill to prevent a pregnancy following rape because the determinant of whether or not the rape was “legitimate” is whether or not she becomes pregnant. And the woman, you see, in the Akin/Aldridge cosmos, can “shut that whole thing down” and keep “bodily functions” from working if the rape was, you know, a real, legit-type rape.
In addition to quick primer on human reproduction, I’m offering here a couple of quick points about rape.
Rape is usually an act of violence or power. It is not just an act of sex. It uses sex as a weapon, as though it were a gun or a billy club. It is an act of violence or power against another person without that person’s consent. Nine out of ten rape victims are female. There is not a category of “not legitimate” rape. Sexual violence inflicted without consent is rape. Period.
The thing is, sperm don’t care how they get inside a vagina. They may arrive by turkey baster, catheter, penile delivery, or other creative mechanisms. Any rancher involved in livestock reproduction can tell you that violating a mammal with an object that delivers sperm is no obstacle to impregnating said mammal, no matter how stressed or unwilling the mammal may be.
Akin and Aldridge aren’t the first politicians to manifest a sad lack of understanding of the female body and of human reproduction. Mitt Romney himself has provoked a few howls thanks to his ignorance about birth control, leading Rachel Maddow to offer up a primer on female anatomy for the fellas out there.
Here’s my own quick primer. About the female: The human female takes some time producing a ready egg for fertilization. That time is often quoted as 28 days, but it varies quite a bit. When the egg is ready, it leaves the ovary and begins a journey down the fallopian tube (also called the oviduct) to the uterus. During its brief sojourn in the fallopian tube, if the egg encounters sperm, fertilization likely will take place. If the egg shows up in the fallopian tube and sperm are already there, hanging out, fertilization is also a strong possibility. In other words, if the egg is around at the same time as the sperm, regardless of how the sperm got there, fertilization can–and often will–happen. The fertilized egg will then continue the journey to the uterus, where implantation into the wall of the uterus happens. Again, if a fertilized egg shows up, the uterine wall doesn’t care how it got fertilized in the first place.
Now to the human male. With ejaculation, a man releases between 40 and 150 million sperm. If ejaculated into the vagina, these sperm immediately begin their short lifetime journey toward the fallopian tube. Some can arrive there in as little as 30 minutes. A woman who has been raped could well already be carrying a fertilized egg by the time authorities begin taking her report. Sperm can live up to three days, at least, possibly as long as five days, hanging out around the fallopian tube. So if an egg isn’t there at the time a rape occurs, if the woman releases one in the days following, she can still become pregnant. Again, the fallopian tubes and ovaries do not care how the sperm got there, legitimately or otherwise.
Although Akin talks about “legitimate rape,” what he and Aldridge and so many other men truly are seeking to do is a twofold burdening of women for having the temerity to experience and report rape. If a woman becomes pregnant because of a rape, you see, then it was not rape. Point one. Point two, because of point one, a woman who reports a rape but becomes pregnant was really engaged in a willing sexual act and therefore must bear–literally–the consequences and, yes, punishment of engaging in that act. She must carry a pregnancy to term. She cannot have access to morning after pills or abortion to prevent or end a rape-related pregnancy because if she’s pregnant, it wasn’t rape, and if she’s pregnant, well, that’s totally her fault for not having her body “stop juices” and “shut that whole thing down.” Got that?
Get this: If you’re a woman who has just been raped, among the many other considerations you deserve, you deserve a morning after pill as part of your rape treatment, if you so desire. Because the hormones in the pills can prevent the impending release of an egg, among other things, create an inhospitable uterine environment for pregnancy, this series of pills can block the implantation of a fertilized egg in the uterine wall** they can save you the added pain, burden, and anguish of a pregnancy resulting from a rape. That, Srs. Akin and Aldridge, is the only established way to “shut that whole thing down,” and it’s a right that every single woman should have. **A commenter has alerted us (thank you!) to information that came out in June regarding FDA claims about implantation prevention with the morning after pill, which may not be accurate. More on that hereand here(NYT). Planned Parenthood cites the IUD as a form of emergency contraception that presumably would prevent implantation.
These views are the opinion of the author and do not necessarily reflect or disagree with those of the DXS editorial team. Related links worth reading (updated 8/21/12)
io9 breaks down more of the data about rapes and pregnancies, including information about why mammals don’t tend to engage in sperm selection
According to Leslie Brunetta, she now has much more hair than she had last July.
We became aware of Leslie Brunetta because of her book, Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating, co-authored with Catherine L. Craig. Thanks to a piece Leslie wrote for the Concord Monitor (and excerpted here), we also learned that she is a breast cancer survivor. Leslie agreed to an interview about her experience, and in her emailed responses, she candidly talks about her diagnosis, treatment, and follow-up for her cancers, plural: She was diagnosed simultaneously with two types of breast cancer.
DXS: In your Concord Monitor piece, you describe the link between an understanding of the way evolution happens and some of the advances in modern medicine. What led you to grasp the link between the two?
LB: I think, because I’m not a scientist (I’m an English major), a lot of things that scientists think are obvious strike me as revelations. I somehow had never realized that the search for what would turn out to be DNA began with trying to explain how, in line with the theory of evolution by natural selection, variation arises and traits are passed from generation to generation. As I was figuring out what each chapter in Spider Silk would be about, I tried to think about the questions non-biologists like me would still have about evolution when they got to that point in the book. By the time we got past dragline silk, I realized that we had so far fleshed out the ways that silk proteins could and have evolved at the genetic level. But that explanation probably wouldn’t answer readers’ questions about how, for example, abdominal spinnerets—which are unique to spiders—might have evolved: the evolution of silk is easier to untangle than the evolution of body parts, which is why we focused on it in the first place.
I decided I wanted to write a chapter on “evo-devo,” evolutionary developmental biology, partly because there was a cool genetic study on the development of spinnerets that showed they’ve evolved from limbs. Fortunately, my co-author, Cay Craig, and editor at Yale, Jean Thomson Black, okayed the idea, because that chapter wasn’t in the original proposal. Writing that chapter, I learned why it took so long—nearly a century—to get from Darwin and Mendel to Watson and Crick and then so long again to get to where we are today. If we non-scientists understand something scientific, it’s often how it works, not how a whole string of people over the course of decades building on each other’s work discovered how it works. I knew evolution was the accumulation of gene changes, but, until I wrote that chapter, it hadn’t occurred to me that people began to look for genes because they wanted to understand evolution.
So that was all in the spider part of my life. Then, a few months into the cancer part of my life, I was offered a test called Oncotype DX, which would look at genetic markers in my tumor cells to develop a risk profile that could help me decide whether I should have chemotherapy plus tamoxifen or just tamoxifen. The results turned out to be moot in my case because I had a number of positive lymph nodes, although it was reassuring to find out that the cancer was considered low risk for recurrence. But still—the idea that a genetic test could let some women avoid chemo without taking on extra risk, that’s huge. No one would want to go through chemo if it wasn’t necessary. So by then I was thinking, “Thank you, Darwin!”
And then, coincidentally, the presidential primary season was heating up, and there were a number of serious candidates (well, serious in the sense that they had enough backing to get into the debates) who proudly declared that they had no time for the theory of evolution. And year after year these stupid anti-evolution bills are introduced in various state legislatures. While I was lying on the couch hanging out in the days after chemo sessions, I started thinking, “So, given that you don’t give any credence to Darwin and his ideas, would you refuse on principle to take the Oncotype test or gene-based therapies like Gleevec or Herceptin if you had cancer or if someone in your family had cancer? Somehow I don’t think so.” That argument is not going to convince hard-core denialists (nothing will), but maybe the cognitive dissonance in connection with something as concrete as cancer will make some people who waver want to find out more.
DXS: You mention having been diagnosed with two different forms of cancer, one in each breast. Can you say what each kind was and, if possible, how they differed?
LB: Yes, I unfortunately turned out to be an “interesting” case. This is one arena where, if you possibly can, you want to avoid being interesting. At first it seemed that I had a tiny lesion that was an invasive ductal carcinoma (IDC) and that I would “just” need a lumpectomy and radiation. Luckily for me, the doctor reading my mammogram is known as an eagle eye, and she saw a few things that—given the positive finding from the biopsy—concerned her. She recommended an MRI. In fact, even though I switched to another hospital for my surgery, she sent emails there saying I should have an MRI. That turned up “concerning” spots in both breasts, which led to more biopsies, which revealed multiple tiny cancerous lesions. The only reasonable option was then a double mastectomy.
The lesions in the right breast were IDCs. About 70% of breast cancers are diagnosed as IDCs. Those cancers start with the cells lining the milk ducts. The ones in the left breast were invasive lobular carcinomas (ILCs), which start in the lobules at the end of the milk ducts. Only about 10% of breast cancers are ILCs.
Oncologists hate lobular cancer. Unlike ductal cancers, which form as clumps of cells, lobular cancers form as single-file ribbons of cells. The tissue around ductal cancer cells reacts to those cells, which is why someone may feel a lump—she’s (or he’s) not feeling the cancer itself but the inflammation of the tissue around it. And because the cells clump, they show up more readily on mammograms. Not so lobular cancers. They mostly don’t give rise to lumps and they’re hard to spot on mammograms. They snake their way through tissue for quite a while without bothering anything.
In my case, this explains why last spring felt like an unremitting downhill slide. Every time someone looked deeper, they found something worse. It turned out that on my left side, the lobular side, I had multiple positive lymph nodes, which was why I needed not just chemo but also radiation (which usually isn’t given after a mastectomy). That was the side that didn’t even show up much on the mammogram. On the right side, the ductal side, which provoked the initial suspicions, my nodes were clear. I want to write about this soon, because I want to find out more about it. I’ve only recently gotten to the place emotionally where I think I can deal with reading the research papers as opposed to more general information. By the way, the resource that most helped us better understand what my doctors were talking about was Dr. Susan Love’s Breast Book. It was invaluable as we made our way through this process, although it turned out that I had very few decisions to make because there was usually only one good option.
DXS: As part of your treatment, you had a double mastectomy. One of our goals with this interview is to tell women what some of these experiences with treatment are like. If you’re comfortable doing so, could you tell us a little bit about what a double mastectomy entails and what you do after one in practical terms?
LB: A mastectomy is a strange operation. In a way, it’s more of an emotional and psychological experience than a physical experience. My surgeon, who was fantastic, is a man, and when we discussed the need for the mastectomies he said that I would be surprised at how little pain would be involved and how quick the healing would be. Even though I trusted him a lot by then, my reaction was pretty much, “Like you would know, right?” But he did know. When you think about it, it’s fairly non-invasive surgery. Unless the cancer has spread to the surrounding area, which doesn’t happen very often now due to early detection, no muscle or bone is removed. (Until relatively recently, surgeons removed the major muscle in the chest wall, and sometimes even bone, because they believed it would cut the risk of recurrence. That meant that many women lost function in their arm and also experienced back problems.) None of your organs are touched. They don’t go into your abdominal cavity. Also, until recently, they removed a whole clump of underarm lymph nodes when they did lumpectomies or mastectomies. Now they usually remove just a “sentinel node,” because they know that it will give them a fairly reliable indicator of whether the cancer has spread to the other nodes. That also makes the surgery less traumatic than it used to be.
I opted not to have reconstruction. Reconstruction is a good choice for many women, but I didn’t see many benefits for me and I didn’t like the idea of a more complicated surgery. My surgery was only about two hours. I don’t remember any pain at all afterwards, and my husband says I never complained of any. I was in the hospital for just one night. By the next day, I was on ibuprofen only. The bandages came off two days after the surgery.
That’s shocking, to see your breasts gone and replaced by thin red lines, no matter how well you’ve prepared yourself. It made the cancer seem much more real in some way than it had seemed before. In comparison, the physical recovery from the surgery was fairly minor because I had no infections or complications. There were drains in place for about 10 days to collect serum, which would otherwise collect under the skin, and my husband dealt with emptying them twice a day and measuring the amount. I had to sleep on my back, propped up, because of where the drains were placed, high up on my sides, and I never really got used to that. It was a real relief to have the drains removed.
My surgeon told me to start doing stretching exercises with my arms right away, and that’s really important. I got my full range of motion back within a couple of months. But even though I had my surgery last March, I’ve noticed lately that if I don’t stretch fully, like in yoga, things tighten up. That may be because of the radiation, though, because it’s only on my left side. Things are never quite the same as they were before the surgery, though. Because I did have to have the axillary nodes out on my left side, my lymph system is disrupted. I haven’t had any real problems with lymphedema yet, and I may never, but in the early months I noticed that my hands would swell if I’d been walking around a lot, and I’d have to elevate them to get them to drain back. That rarely happens now. But I’ve been told I need to wear a compression sleeve if I fly because the change in air pressure can cause lymph to collect. Also, I’m supposed to protect my hands and arms from cuts as much as possible. It seems to me that small nicks on my fingers take longer to heal than they used to. So even though most of the time it seems like it’s all over, I guess in those purely mechanical ways it’s never over. It’s not just that you no longer have breasts, it’s also that nerves and lymph channels and bits of tissue are also missing or moved around.
The bigger question is how one deals with now lacking breasts. I’ve decided not to wear prostheses. I can get away with it because I was small breasted, I dress in relatively loose clothes anyway, and I’ve gained confidence over time that no one notices or cares and I care less now if they do notice. But getting that self-confidence took quite a while. Obviously, it has an effect on my sex life, but we have a strong bond and it’s just become a piece of that bond. The biggest thing is that it’s always a bit of a shock when I catch sight of myself naked in a mirror because it’s a reminder that I’ve had cancer and there’s no getting around the fact that that sucks.
DXS: My mother-in-law completed radiation and chemo for breast cancer last year, and if I remember correctly, she had to go frequently for a period of weeks for radiation. Was that you experience? Can you describe for our readers what the time investment was like and what the process was like?
LB: I went for radiation 5 days a week for about 7 weeks. Three days a week, I’d usually be in and out of the hospital within 45 minutes. One day a week, I met with the radiology oncologist and a nurse to debrief, which was also a form of emotional therapy for me. And one day a week, they laid on a chair massage, and the nurse/massage therapist who gave the massage was great to talk to, so that was more therapy. Radiation was easy compared to chemo. Some people experience skin burning and fatigue, but I was lucky that I didn’t experience either. Because I’m a freelancer, the time investment wasn’t a burden for me. I’m also lucky living where I live, because I could walk to the hospital. It was a pleasant 3-mile round-trip walk, and I think the walking helped me a lot physically and mentally.
DXS: And now to the chemo. My interest in interviewing you about your experience began with a reference you made on Twitter to “chemo brain,” and of course, after reading your evolution-medical advances piece. Can you tell us a little about what the process of receiving chemotherapy is like? How long does it take? How frequently (I know this varies, but your experience)?
LB: Because of my age (I was considered young, which was always nice to hear) and state of general good health, my oncologist put me on a dose-dense AC-T schedule. This meant going for treatment every two weeks over the course of 16 weeks—8 treatment sessions. At the first 4 sessions, I was given Adriamycin and Cytoxan(AC), and the last 4 sessions I was given Taxol (T). The idea behind giving multiple drugs and giving them frequently is that they all attack cancer cells in different ways and—it goes back to evolution—by attacking them frequently and hard on different fronts, you’re trying to avoid selecting for a population that’s resistant to one or more of the drugs. They can give the drugs every two weeks to a lot of patients now because they’ve got drugs to boost the production of white blood cells, which the cancer drugs suppress. After most chemo sessions, I went back the next day for a shot of one of these drugs, Neulasta.
The chemo clinic was, bizarrely, a very relaxing place. The nurses who work there were fantastic, and the nurse assigned to me, Kathy, was always interesting to talk with. She had a great sense of humor, and she was also interested in the science behind everything we were doing, so if I ever had questions she didn’t have ready answers for, she’d find out for me. A lot of patients were there at the same time, but we each had a private space. You’d sit in a big reclining chair. They had TVs and DVDs, but I usually used it as an opportunity to read. My husband sat through the first session with me, and a close friend who had chemo for breast cancer 15 years ago sat through a few other sessions, but once I got used to it, I was comfortable being there alone. Because of the nurses, it never felt lonely.
I’d arrive and settle in. Kathy would take blood for testing red and white blood counts and, I think, liver function and some other things, and she’d insert a needle and start a saline drip while we waited for the results. I’ve always had large veins, so I opted to have the drugs administered through my arm rather than having a port implanted in my chest. Over the course of three to four hours, she’d change the IV bags. Some of the bags were drugs to protect against nausea, so I’d start to feel kind of fuzzy—I don’t think I retained a whole lot of what I read there! The Adriamycin was bright orange; they call it the Red Devil, because it can chew up your veins—sometimes it felt like it was burning but Kathy could stop that by slowing the drip. Otherwise, it was fairly uneventful. I’d have snacks and usually ate lunch while still hooked up.
I was lucky I never had any reactions to any of the drugs, so actually getting the chemo was a surprisingly pleasant experience just because of the atmosphere. On the one hand, you’re aware of all these people around you struggling with cancer and you know things aren’t going well for some of them, so it’s heartbreaking, and also makes you consider, sometimes fearfully, your own future no matter how well you’re trying to brace yourself up. But at the same time, the people working there are so positive, but not in a Pollyannaish-false way, that they helped me as I tried to stay positive. The social worker stopped in with each patient every session, and she was fantastic—I could talk out any problems or fears I had with her, and that helped a huge amount.
DXS: Would you be able to run us through a timeline of the physical effects of chemotherapy after an infusion? How long does it take before it hits hardest? My mother-in-law told me that her biggest craving, when she could eat, was for carb-heavy foods like mashed potatoes and for soups, like vegetable soup. What was your experience with that?
LB: My biggest fear when I first learned I would need chemo was nausea. My oncologist told us that they had nausea so well controlled that over the past few years, she had only had one or two patients who had experienced it. As with the surgeon’s prediction about mastectomy pain, this turned out to be true: I never had even a single moment of nausea.
But there were all sorts of other effects. For the first few days after a session, the most salient effects were actually from the mix of drugs I took to stave off nausea. I generally felt pretty fuzzy, but not necessarily sleepy—part of the mix was steroids, so you’re a little hyped. There’s no way I’d feel safe driving on those days, for example. I’d sleep well the first three nights because I took Ativan, which has an anti-nausea effect. But except for those days, my sleep was really disrupted. Partly that’s because, I’m guessing, the chemo hits certain cells in your brain and partly it’s because you get thrown into chemical menopause, so there were a lot of night hot flashes. Even though I’d already started into menopause, this chemo menopause was a lot more intense and included all the symptoms regularly associated with menopause.
By the end of the first session, I was feeling pretty joyful because it was much less bad than I had thought it would be. By the second week in the two-week cycle, I felt relatively normal. But even though it never got awful, the effects started to accumulate. My hair started to fall out the morning I was going to an award ceremony for Spider Silk. It was ok at the ceremony, but we shaved it off that night. I decided not to wear a wig. First, it was the summer, and it would have been hot. Second, I usually have close to a buzz cut, and I can’t imagine anyone would make a wig that would look anything like my hair. My kids’ attitude was that everyone would know something was wrong anyway, so I should just be bald, and that helped a lot. But it’s hard to see in people’s eyes multiple times a day their realization that you’re in a pretty bad place. Also, it’s not just your head hair that goes. So do your eyebrows, your eyelashes, your pubic hair, and most of the tiny hairs all over your skin. And as your skin cells are affected by the chemo (the chemo hits all fast-reproducing cells), your skin itself gets more sensitive and then is not protected by those tiny hairs. I remember a lot of itching. And strange things like my head sticking to my yoga mat and my reading glasses sticking to the side of my head instead of sliding over my ears.
I never lost my appetite, but I did have food cravings during the AC cycles. I wanted sushi and seaweed salad, of all things. And steak. My sense of taste went dull, so I also wanted things that tasted strong and had crunch. I stopped drinking coffee and alcohol, partly because of the sleep issues but partly because it didn’t taste very good anyway. I drank loads of water on the advice of the oncologist, the nurses, and my acupuncturist, and I think that helped a lot.
During the second cycle, I developed a fever. That was scary. I was warned that if I ever developed a fever, I should call the oncologist immediately, no matter the time of day or day of week. The problem is that your immune response is knocked down by the chemo, so what would normally be a small bacterial infection has the potential to rage out of control. I was lucky. We figured out that the source of infection was a hemorrhoid—the Adriamycin was beginning to chew into my digestive tract, a well-known side effect. (Having to pay constant attention to yet another usually private part of the body just seemed totally unfair by this point.) Oral antibiotics took care of it, which was great because I avoided having to go into the hospital and all the risks entailed with getting heavy-duty IV antibiotic treatment. And we were also able to keep on schedule with the chemo regimen, which is what you hope for.
After that, I became even more careful about avoiding infection, so I avoided public places even more than I had been. I’m very close to a couple of toddlers, and I couldn’t see them for weeks because they were in one of those toddler constant-viral stages, and I really missed them.
The Taxol seems to be much less harsh than the AC regimen, so a lot of these side effects started to ease off a bit by the second 8 weeks, which was certainly a relief.
I was lucky that I didn’t really have mouth sores or some of the other side effects. Some of this is, I think, just because besides the cancer I don’t have any other health issues. Some of it is because my husband took over everything and I don’t have a regular job, so I had the luxury of concentrating on doing what my body needed. I tried to walk every day, and I slept when I needed to, ate when and what I needed to, and went to yoga class when my immune system was ok. I also went to acupuncture every week. I know the science is iffy on that, but I think it helped me with the side effects, even if it was the placebo effect at work (I’m a big fan of the placebo effect). We also both had extraordinary emotional support from many friends and knew we could call lots of people if we needed anything. That’s huge when you’re in this kind of situation.
Currently, I’m still dealing with some minor joint pains, mostly in my wrists and feet. I wasn’t expecting this problem, but my oncologist says it’s not uncommon: they think it’s because your immune system has to re-find its proper level of function, and it can go into overdrive and set up inflammation in the joints. That’s gradually easing off, though.
Most people don’t have it as easy as I did in terms of the medical, financial, and emotional resources I had to draw on. I’m very mindful of that and very grateful.
DXS: You say that you had “few terrible side effects” and a “very cushy home situation.” I’m sure any woman would like to at least be able to experience the latter while dealing with a full-body chemical attack. What were some factors that made it “cushy” that women might be able to talk to their families or caregivers about replicating for them?
LB: As I’ve said, some of it is just circumstance. For example, my kids were old enough to be pretty self-sufficient and old enough to understand what was going on, which meant both that they needed very little from me in terms of care and also that they were less scared than they might have been if they were younger. My husband happens to be both very competent (more competent than I am) around the house and very giving. I live in Cambridge, MA, where I could actually make choices about where I wanted to be treated at each phase and know I’d get excellent, humane care and where none of the facilities I went to was more than about 20 minutes away.
Some things that women might have some control over and that their families might help nudge them toward:
Find doctors you trust. Ask a lot of questions and make sure you understand the answers. But don’t get hung up on survival or recurrence statistics. There’s no way to know for sure what your individual outcome will be. Go for the treatment that you and your doctors believe will give you the best chance, and then assume as much as possible that your outcome will be good.
Make sure you talk regularly with a social worker or other therapist who specializes in dealing with breast cancer patients. If you have fears or worries that you don’t want to talk to your partner or family about, here’s where you’ll get lots of help.
Find compatible friends who have also had cancer to talk to. I had friends who showed me their mastectomy scars, who showed me their reconstructions, who told me about their experiences with chemo and radiation, who told me about what life after treatment was like (is still like decades later…). And none of them told me, “You should…” They all just told me what was hard for them and what worked for them and let me figure out what worked for me. Brilliant.
Try to get some exercise even if you don’t feel like it. It was often when I felt least like moving around that a short walk made me feel remarkably better. But I would forget that, so my husband would remind me. Ask someone to walk with you if you’re feeling weak. Getting your circulation going seems to help the body process the chemo drugs and the waste products they create. For the same reason, drink lots of water.
Watch funny movies together. Laughter makes a huge difference.
Pamper yourself as much as possible. Let people take care of you and help as much as they’re willing. But don’t be afraid to say no to anything that you don’t want or that’s too much.
Family members and caregivers should also take care of themselves by making some time for themselves and talking to social workers or therapists if they feel the need. It’s a big, awful string of events for everyone involved, not just the patient.
DXS: In the midst of all of this, you seem to have written a fascinating book about spiders and their webs. Were you able to work while undergoing your treatments? Were there times that were better than others for attending to work? Could work be a sort of occupational therapy, when it was possible for you to do it, to keep you engaged?
LB: The book had been published about 6 months before my diagnosis. The whole cancer thing really interfered not with the writing, but with my efforts to publicize it. I had started to build toward a series of readings and had to abandon that effort. I had also started a proposal for a new book and had to put that aside. I had one radio interview in the middle of chemo, which was kind of daunting but I knew I couldn’t pass up the opportunity, and when I listen to it now, I can hear my voice sounds kind of shaky. It went well, but I was exhausted afterwards. Also invigorated, though—it made me feel like I hadn’t disappeared into the cancer. I had two streams of writing going on, both of which were therapeutic. I sent email updates about the cancer treatment to a group of friends—that was definitely psychological therapy. I also tried to keep the Spider Silk blog up to date by summarizing related research papers and other spider silk news—that was intellectual therapy. I just worked on them when I felt I wanted to. The second week of every cycle my head was usually reasonably clear.
I don’t really know whether I have chemo brain. I notice a lot of names-and-other-proper-nouns drop. But whether that’s from the chemo per se, or from the hormone changes associated with the chemically induced menopause, or just from emotional overload and intellectual distraction, I don’t know. I find that I’m thinking more clearly week by week.
DXS: What is the plan for your continued follow-up? How long will it last, what is the frequency of visits, sorts of tests, etc.?
LB: I’m on tamoxifen and I’ll be on that for probably two years and then either stay on that or go onto an aromatase inhibitor [Ed. note: these drugs block production of estrogen and are used for estrogen-sensitive cancers.] for another three years. I’ll see one of the cancer doctors every three months for at least a year, I think. They’ll ask me questions and do a physical exam and take blood samples to test for tumor markers. At some point the visits go to every six months.
For self-care, I’m exercising more, trying to lose some weight, and eating even better than I was before.
DXS: Last…if you’re comfortable detailing it…what led to your diagnosis in the first place?
LB: My breast cancer was uncovered by my annual mammogram. I’ve worried about cancer, as I suppose most people do. But I never really worried about breast cancer. My mother has 10 sisters and neither she nor any of them ever had breast cancer. I have about 20 older female cousins—I was 50 when I was diagnosed last year–and as far as I know none of them have had breast cancer. I took birth control pills for less than a year decades ago. Never smoked. Light drinker. Not overweight. Light exerciser. I breastfed both kids, although not for a full year. Never took replacement hormones. Never worked in a dangerous environment. Never had suspicious mammograms before. So on paper, I was at very low risk as far as I can figure out. After I finished intensive treatment, I was tested for BRCA1 and BRCA2 (because mutations there are associated with cancer in both breasts) and no mutations were found. Unless or until some new genetic markers are found and one of them applies to me, I think we’ll never know why I got breast cancer, other than the fact that I’ve lived long enough to get cancer. There was no lump. Even between the suspicious mammogram and ultrasound and the biopsy, none of the doctors examining me could feel a lump or anything irregular. It was a year ago this week that I got the news that the first biopsy was positive. In some ways, because I feel really good now, it’s hard to believe that this year ever happened. But in other ways, the shock of it is still with me and with the whole family. Things are good for now, though, and although I feel very unlucky that this happened in the first place, I feel extremely lucky with the medical care I received and the support I got from family and friends and especially my husband.
Leslie Brunetta’s articles and essays have appeared in the New York Times,Technology Review, and the Sewanee Review as well as on NPR and elsewhere. She is co-author, with Catherine L. Craig, of Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating (Yale University Press).
Today, Carolyn S. Miles, president and CEO at Save the Children writes at the Huffington Post (ducks) about the latest findings regarding our ability to stop a preterm birth from happening. As anyone who’s given birth knows, it’s not easy to stop that process once it starts, and that persistent inability means devastating outcomes for some families. As Miles writes:
[Editor’s note: I was on Twitter, as usual, a couple of days ago, and started seeing tweets with the hashtag #SSCAbc. They contained information that I, an avid consumer of science and medical information, don’t normally see addressed in breast cancer stories, including for young women with breast cancer and how to talk to children about having breast cancer. I’ve aggregated some of those tweets below, but you can read more at the hashtag here, which represents the Seattle Cancer Care Alliance, whose representatives were conducting the Twitter session.]
One thing that cervical cancer awareness overlooks is that HPV causes not only that cancer but also can play a role in penile, vaginal, urethral, anal, and head and neck cancers. In fact, a recent study found that about 1 in 10 men and almost 4 in 100 women are orally infected with HPV, the most common sexually transmitted virus in the United States, and HPV-related head and neck cancer rates are higher among men. Further, HPV-related oral cancers have been on the rise for about two decades now, and HPV is now responsible for about 50% of oral cancers today.
Research also shows that about 50% of college age women acquire an HPV infection within four years of becoming sexually active. In addition, an infected mother can pass HPV to her baby during childbirth, and the virus can populate the child’s larynx, causing recurrent growths that block the respiratory tract and require surgical removal.
The remainder of this post appeared initially on the Parents of Kids with Infectious Diseasesite, which provides information for preventing infectious disease in addition to supporting parents whose children have them. As insidious as HPV is, the vast majority of HPV infections can be prevented now with a vaccine.
Have you or a loved one ever had an abnormal Pap test result? If precancerous cells were identified, the cause was almost undoubtedly infection with human papillomavirus (HPV).Almost all cases of cervical cancerarise because of infection with this virus. Yet a vaccine can prevent infection with the strains that most commonly cause cervical cancer.
A vaccine against cancer. It’s true.
For the vaccine to work, though, a woman must have it before HPV infects her. You may find it difficult to look at your daughter, especially a pre-teen daughter, and think of that scenario. But the fact is that even if your daughter avoids all sexual contact until, say, her wedding night, she can still contract HPV from her partner. As we noted above, it happens to bethe most common sexually transmitted infection.
About 20 million Americans have an HPV infection, and 6 million people become newly infected every year. Half of the people who are ever sexually active pick up an HPV infection in a lifetime. That means your daughter, even if she waits until her wedding night, has a 1 in 2 chance of contracting the virus. Unless it’s a strain that causes genital warts, HPV usually produces no symptoms, and the infected person doesn’t even know they’ve been infected.
Until the cancer shows up.
And it can show up in more places than the cervix. This virus, you see, favors a certain kind of tissue, one that happens to be present in several parts of you. This tissue, a type of epithelium, is a thin layer of the skin and mucous membranes. It’s available for viral invasion in the cervix, vagina, vulva, anus, and the mouth and pharynx. In fact, HPV is poised to replace tobacco as the major cause of oral cancers in the United States.
The virus can even sometimes pass from mother to child, causingrecurrent respiratory papillomatosis, the recurrent growths in the throat that must be removed periodically and can sometimes become cancerous. It strikes about 2000 children each year in the United States.
How does a virus cause cancer? To understand that, you must first understand cancer. You may know that cells reproduce by dividing, and that cancer occurs when cells divide out of control. Behind most cancers is a malfunction in the molecules that tell cells to stop dividing. These molecules operate in a chain reaction of signaling, like a series of well-timed stoplights along a boulevard. If one starts sending an inappropriate “go” signal or fails to send a “stop” signal, the cell divides, making more cells just like it that also lack the right signals. If your body’s immune system doesn’t halt this inappropriate growth, we call it cancer.
The blueprint for building these “stop” molecules is in your genes, in your DNA sequences. As a virus, HPV also requires a blueprint to make more viruses. Viruses use the division machinery of the host cell—in you—to achieve reproduction by stealthily inserting their own DNA blueprint into the host DNA.
Sometimes, when it’s finished with the host, a virus leaves a little bit of its DNA behind. If that leftover DNA is in the middle of the blueprint for a “stop” molecule, the cell won’t even notice. It will use the contaminated instructions to build a molecule, one that no longer functions in stopping cell division. The result can be cancer.
Of the 150 HPV types or strains, about 40 of which pass through sexual contact, two in particular are associated with cancer,types 16 and 18. They are the ones that may persist for years and eventually change the cellular blueprint. The vaccines developed against those two strains are, therefore, anti-cancer vaccines.
Without a successful viral infection, viral DNA can’t disrupt your DNA. That’s what the HPV vaccine achieves against the two strains responsible forabout 70% of cervical cancers. Recent high-profile people have made claims about negative effects of this vaccine, claims that have beenthoroughly debunked. The Centers for Disease Control and Prevention as always offersaccurate informationabout the side effects associated with available HPV vaccines.
This achievement against cancer, including prevention of almost 100% of precancerous cervical changes related to types 16 and 18, is important.
Worldwide, a half million women receive a cervical cancer diagnosis each year, and 250,000 women die from it. These women are somebody’s daughter, wife, sister, friend. Women from all kinds of backgrounds, with all kinds of sexual histories.
Women whose precancerous cervical changes are identified in time often still must undergo uncomfortable and sometimes painful procedures to get rid of the precancerous cells. These invasive procedures includecone biopsiesthat require shots to numb the cervix and removal of a chunk of tissue from it. Cone biopsies carry a risk of causing infertility or miscarriage or preterm delivery. A vaccine for your daughter could prevent it all.
HPV doesn’t care if your daughter has had sex before. It’s equally oblivious to whether the epithelium it infects is in the cervix or in the mouth or pharynx or in an adult or a child. What it does respond to is antibodies that a body makes in response to the vaccine stimulus.
Even if your daughter’s first and only sex partner passes along one of the cancer-associated strains, if she’s been vaccinated, her antibodies will take that virus out cold. It’s a straightforward prevention against a lifetime of worry—and a premature death.
For more info: Facts about theHPV vaccinefrom the National Cancer Institute.
Healthcare reform discussions frequently center on the changes anticipated for the general population. But people with disabilities — about 56 million in the United States — are generally left out of the healthcare reform picture.
That absence is not unusual. According to Lisa Iezzoni, MD, Professor of Medicine and Director of the Institute for Health Policy at Harvard Medical School, discrimination against people with disabilities stretches back thousands of years in human history. They “have been discriminated against, stigmatized, institutionalized, and hidden behind closed doors,” she says. The disability rights movement, which began in the 1970s with deinstitutionalization, made progress through the passing of the Americans with Disabilities Act in 1990. Now, says Iezzoni, new health reform measures will offer people with disabilities important additional protections.
Healthcare reform has a variety of names, including the Affordable Care Act (ACA), the Patient Protection and Affordable Care Act (PPACA), and Obamacare. All of the terms refer to the same federal statute that President Obama signed into law on March 23, 2010.
Slideshow: 10 Ways Healthcare Reform Might Help People with Disabilities
Click first slide to view.
The diversity of disability
Disability can occur in any body system or several systems at once. Sometimes, a disability is clear, but other disabilities can be “invisible.” The two most common types of disability center on mental health or musculoskeletal disturbances, according to the Social Security Administration. But disability covers a huge spectrum from developmental and congenital conditions to sensory, cognitive, and emotional differences. With the aging baby boomer population and the link between disability and age, the number of disabled persons is expected to grow considerably in the coming years. Many of them will be women, who tend to experience higher rates of disability than men.
Data on the healthcare experiences of people with disabilities are limited, says Iezzoni. Much of it comes from national surveys. What researchers do know is that people in the disabled community experience relatively increased rates of poverty, low education, unemployment, domestic violence (including against disabled men), and physical and attitudinal barriers to a good quality of life.
Barriers to care
Barriers to care might be the most important obstacles, literally and figuratively, that a person with disabilities encounters. These barriers are among the issues that the new healthcare reform can address. In comparison with the nondisabled in the United States, people with disabilities receive fewer screening and preventive services. For example, women with disabilities have much lower rates of Pap testing and breast cancer screening and are less likely to be asked about reproductive health and contraception. “Part of this is attitudinal,” said Iezzoni, noting that doctors often behave as if sex and reproduction are just not part of the lives of people with disabilities.
Physical barriers also hinder access to care, and even medical equipment itself is often not adaptable for people with disabilities. For example, medical examination tables are very high, and women with disabilities may have difficulties getting onto one or maintaining the typical position for a pelvic exam. The same might also be true for mammography equipment.
“Women with disabilities are far less likely to get standard of care procedures for breast cancer and their outcomes are worse,” Iezzoni explains, referring to her own research. Among the disparities that health reform is intended to address are higher rates of mastectomy (complete breast removal), rather than lumpectomy (limited to removal of the tumor) for women with disabilities, lower rates of radiation therapy needed to produce disease-free survival, and higher death rates from breast cancer. Providing people with disabilities a chance to be more independent is also a pivotal issue for healthcare reform.
Trying to build in measures to improve access for people with disabilities is uncharted terrain, however, according to Iezzoni. That in itself might serve as an intangible reflection of what people with disabilities can encounter every day in a world without appropriate accommodations. It is also, though, terrain that the new healthcare reform might smooth out for the population with disabilities (see slideshow), lowering barriers and improving access … and quality of life.