In what could be a major breakthrough, researchers developed a test—similar to the Pap Test—that was able to find ovarian and uterine cancer cells in cervical fluid. Though it is years from the market it has the potential to save thousands of lives.
Yesterday morning, I saw one of the Centers for Disease Control’s (CDC) gynecological cancer awareness ads, then I got an email from a colleague organization reminding me that January is Cervical Health Awareness Month (what? you hadn’t marked your calendar?), and then my Google News Alerts informed me of ground-breaking new research that might make early detection of ovarian, endometrial, and uterine cancer possible. So it seemed pretty clear what I was going to write about.
The ad I saw featured five women of different ages sitting on stools explaining the early symptoms of gynecological cancers that each had experienced; one said she felt bloated all the time, another was spotting despite have already gone through menopause, and a third complained of pain in her abdomen all the time. The voice-over in this 60-second spot explains that these are all warning signs of cervical, ovarian, uterine, vaginal, and vulvar cancers which are all gynecological cancers. There are other ads in the series including one that suggests women “Be Brave” and get checked for cancer.
The CDC is conducting this campaign with good reason: In 2009 (the last year for which we have numbers), 84,155 women were diagnosed with a gynecologic cancer and 27,813 died from one. Though these cancers are slow to develop, the signs and symptoms—which also include back pain, vaginal discharge, pressure in the abdomen, changes in bathroom habits, itching or burning of the vulva, and changes in skin on the vulva—are often mistaken for normal menstrual issues, constipation, or other simple problems. The campaign is designed to encourage “women to pay attention to their bodies and know what is normal for them, so they can recognize the warning signs of gynecologic cancers and seek medical care.”
At this point most women are aware of the importance of Pap Smears which are used to detect cervical cancer (and if not, perhaps Cervical Health Awareness Month will help). Pap Smears use cervical fluid to screen for cervical cancer as well as pre-cancerous changes to the cells on the cervix which can then be treated and prevent cancer from ever developing. While it was once recommended that women start getting these tests as soon as they became sexually active and then get one every year after that, recent guidelines suggest that especially when paired with tests for HPV (which is the cause of most cases of cervical cancer) they can be effective even when given much less frequently.
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Pap Tests (originally called Pap Smears) were developed by Georgios Papanicolaou in 1943 and have since become a routine screening for women. The Pap Test has reduced the rate of cervical cancer in this country by an impressive 75 percent.
Unfortunately, there are no similar tests for other forms of gynecological cancer including ovarian cancer and uterine cancer (also called endometrial cancer). Over 69,000 women were diagnosed with these two forms of cancer in 2012. If caught in early stages, 90 percent of women diagnosed with uterine cancer will live for five years or more after diagnosis. Nonetheless, 8,000 women in the United States die from this disease each year. Ovarian cancer is even more deadly as it is often caught too late and only 46 percent of women with the disease are expected to live five or more years after diagnosis. Ovarian cancer kills 15,000 women in this country each year. Previous attempts at early screening for ovarian—using a blood test or sonograms—have been unsuccessful.
Today, however, there is new hope for a test similar to the Pap Test that could detect the cells of other cancers in the reproductive tract. By combining genome mapping efforts with research into gynecological cancers, researchers have made a potentially major breakthrough.
One team of scientists at Johns Hopkins University was already using data from the Human Genome Project to try to detect cancer cells circulating in the blood and other body fluids. They posited that ovarian and uterine tumors would shed cells that would then collect in cervical fluid. They brought in another team, also at Hopkins, that had been examining tumor cells from gynecological cancers, and then looked at the research yet another colleague was doing on the specific DNA mutations in ovarian and uterine tumors.
They then used this information to conduct DNA analysis on cervical fluid collected during Pap Tests on 46 women diagnosed with either ovarian or endometrial cancer. They found that 100 percent of endometrial cancers and 40 percent of ovarian cancers shed detectable cells into the cervical fluid. Moreover, many of these cancers were at stage one when they could be most easily cured. They also tested the cervical fluid of 14 women who did not have cancer and found that the test did not give any false positives.
The researchers, who named this new method the Pap-Gene Test in honor of Dr. Papanicolaou, referred to this as a “proof of concept” study and acknowledge that it will be years before this test becomes routine. Still, they believe that after much more testing it could be easily piggy-backed onto the existing pap-test which is already given to millions of women each year.
Cervical cancer was once a major killer of women in this country but with widespread early detection through the Pap Test we’ve brought the incidence and death rate way down; in 2009 fewer than 4,000 died from this disease in the United States. Imagine how many lives could be saved with a similar test for ovarian and uterine cancer.
A new study finds that the HPV vaccine prevents genital warts and precancerous changes to the cervix in young women ages 14 to 17. Not only does this provide further evidence of the vaccine's efficacy; it suggests that early vaccination is important.
A study published in this month’s Pediatrics adds to the growing body of evidence showing the HPV vaccine is working to prevent cervical cancer and other health issues that can be caused by the human papillomavirus (HPV).
The study followed high school girls in Canada and found that those who had received the vaccine were much less likely to be diagnosed with genital warts or cervical dysplasia than their unvaccinated peers. These results show that the protective effects of the vaccine kick in quickly and confirm the importance of having young people vaccinated at an early age.
HPV is a highly contagious sexually transmitted disease (STD) that is spread from infected skin to uninfected skin. About 79 million Americans are infected with HPV, and about 14 million people become newly infected each year. The majority of HPV cases are cleared by the body without ever causing symptoms or health problems.
Condoms can prevent HPV transmission, but only if the infected skin is in an area covered by the condom. If it’s on an area outside of the condom, such as a man’s scrotum, condoms cannot help reduce transmission.
A vaccine has been available to prevent HPV transmission since 2006. Gardasil, that vaccine, protected against four stains of the virus—the two that account for 70 percent of cervical cancers and the two that account for 90 percent of genital warts.
A newly approved version of Gardasil now protects against nine strains of the virus and has the potential to prevent 90 percent of cases of all cervical, vulvar, vaginal, and anal cancer, as Rewire has reported. A second vaccine, called Cervarix, was approved in 2009 but only protects against the two strains that cause most cervical cancer.
The vaccine is given as a series of three shots and is approved for young people—both men and women—between the ages of 9 and 26. The Centers for Disease Control and Prevention (CDC) recommends that HPV vaccines become part of the routine vaccinations for girls who are 11 or 12 years old because in order to ensure that it works, it has to be given before they become sexually active.
Though not recommended as part of the routine vaccinations for boys, health-care providers suggest that they receive the vaccine at the same age.
There have been studies that suggest that the introduction of these vaccines has had a dramatic impact. A 2013 study conducted by the CDC, for example, found that the proportion of girls infected with the four strains covered by the original Gardasil vaccine dropped among all girls (vaccinated or not) from about 12 percent before the vaccine was available to 5 percent, a drop of 56 percent.
When researchers looked at those girls who had been vaccinated, the decrease was even higher, at 88 percent.
That study looked at infections rates rather than cervical cancer rates because cervical cancer grows very slowly. The median age of cervical cancer diagnosis is 48 and even higher for other HPV-related cancers, which means it may be many years before the first generation of young women who received the vaccine would have been facing cancer diagnoses.
The new study adds to the expectation that rates of cervical cancer will come down. It followed more than 26,000 teen girls in Ontario, Canada and found that those who had received all three doses of Gardasil (the original 4-strain version) were 44 percent less likely to be diagnosed with cervical dysplasia and 43 percent less likely to be diagnosed with genital warts during their high school years than their unvaccinated peers.
Genital warts are small painless bumps that can appear on the penis, vulva, vagina, cervix, or anus, as well as in the mouth or throat. They may go away on their own or they may need to be removed by a health care provider. Cervical dysplasia is one name for abnormal changes to the cells on the surface of the cervix considered pre-cancerous and usually detected through a pap test.
These changes put women at a higher risk of cervical cancer, but there are treatments available that can prevent them from becoming cancer.
Linda Levesque, one of the senior authors of the newly published study, explained that cervical dysplasia is “not yet cancer, but over time, if it’s left untreated and unchecked runs the risk of becoming cancer later in a girl’s life.” She told HealthDay News:
“I don’t think we were surprised the vaccine works. … What I was surprised by was the magnitude of benefits in such a young age group. I expected we would see some reductions. I didn’t think they would be so large and of such significance.”
The findings suggest that the CDC and other health agencies are right to recommend that the vaccine be given to young women before their sexual debut.
Some parents have objected to vaccinating kids for an STD at the age of 11, arguing that it is too young to even discuss sexual behavior. The authors disagree. Lead author Leah Smith told HealthDay News:
“Cervical dysplasia and genital warts can happen as soon as a girl becomes sexually active, more or less. … Some parents have been delaying vaccination for their daughters until they’re older, because they don’t think they are sexually active. These results show this age group is sexually active and they are at risk. The vaccine really needs to be given before the girls are at risk.”
HPV vaccination rates in the United States are lower than those for other vaccines. The CDC estimated that if girls 13 to 17 had received one dose of the vaccine when they received the other recommended vaccinations, nine in ten young women would have gotten at least one dose. Instead, data shows that 57 percent of girls between the ages of 13 and 17 had received even one dose, and 38 percent got all three.
Some of this may be the result of an overall distrust of vaccines in the United States, but much of it likely stems from the misplaced fear that vaccinating young women against an STD will give them license to become promiscuous. There is now a plethora of research that show this is not the case, as Rewire has reported.
The authors of the new study emphasized that parents who believe there’s no harm in delaying or skipping the vaccine are putting their daughters’ health at risk.
Then, it was over. My first colonoscopy and endoscopy were finished. I was 25 and getting my first round of screenings and testing done. A month prior, I discovered I carry a genetic mutation known as Lynch syndrome, or hereditary nonpolyposis colorectal cancer (HNPCC), which substantially increases my risks of early onset cancers of the colon and rectum, stomach, intestine, liver, pancreas, gallbladder ducts, upper urinary tract, brain, skin, and, since I’m a woman, the endometrium, ovaries, and breasts.
Genetic conditions have madetheir way into public dialogue in recent years, but not many people understand the decisions patients, particularly women, have to make once they have their diagnosis. My diagnosis, while manageable, has changed my life forever, and the women I’ve spoken with, who are also carrying a genetic mutation, have had to confront similar life-altering decisions. I’ve learned through this experience that it’s critical for women to have access to information, resources, and—most importantly—other women’s stories to help them better understand what options are out there and what’s best for their situation, which may or may not be what their doctor thinks is right.
“The Family That Prays Together…”
I, like many other people in my situation, realized I had this mutation because someone else in my family got cancer. While I was teaching English in South Korea nearly two years earlier, my mother called me.
“Honey, I don’t want you to worry.” This can’t be good.
“But, I went to the doctor and they believe I have uterine cancer. It’s OK though; they caught it early.” At 59, my mother had a hysterectomy and underwent radiation therapy. But then, less than a year later, they found cancerous polyps in her colon during a colonoscopy.
Since my mother had two types of cancer so close together, her doctor advised her to have genetic testing done for Lynch. Her results came back positive, and she was told to urge her living blood relatives to get tested as well.
But when I came back from Korea, I didn’t have health insurance or a job. My mom said it was no big deal and her doctor agreed. Based on my personal and family history and genetic test results, I was told it would be fine to postpone testing for a few months since I was only 24 at the time. However, this is not always true for all patients and depends on their family’s history of cancer and the genetic condition itself.
“It’s Going To Be Fine”
About five months later after I had a steady job with good health insurance, I met with a genetic counselor, took a family history, and had blood drawn. They told me I had a 50/50 chance of having the mutation—an unlucky coin toss.
My results took about a month and a half to come in. I scheduled another meeting with my genetic counselor to discuss my results and what my condition meant—what my risks of cancer were, procedures I could undergo to reduce my risks, and what it meant for my future family plans.
I had to meet with a gastroenterologist and a gynecologist who specialize in treating Lynch patients. We talked about the different screenings I would have to do, including a colonoscopy every year, regular transvaginal ultrasounds, Pap smears, and biopsies. They both talked to me about how they wanted me to have a hysterectomy once I was done having children.
“It’s going to be fine. Have your kids and then we’ll do the surgery, just have your kids earlier, like by 35 or so,” my gastroenterologist said ever so nonchalantly.
I know her intentions were good, and I know having a hysterectomy is ultimately what I should do—as should many other patients with genetic conditions that affect women’s reproductive systems, such as the BRCA 1 and 2 mutations and Li-Fraumeni—since the procedure significantly reduces the risks of uterine, ovarian, and breast cancers. I want to have kids before 35 anyway, so no big deal right? That is unless I’m not ready to have kids by the time I’m 35. And is the procedure even covered by health insurance?
Well, that depends on the insurance company, and whether a patient’s doctor deems the procedure medically necessary for either the removal of cancer or cancer prevention. For example, Aetna medical policy states, “The medical literature suggests that a prophylactic [preventive] hysterectomy should be performed in conjunction with oophorectomy [removal of the ovaries] in women from families with Lynch syndrome I.” In other words, because Lynch patients are at risk for both uterine and ovarian cancers, a prophylactic hysterectomy in conjunction with oophorectomy is covered.
Beyond the insurance issue, though, a hysterectomy is not so easy on women. For some women, it’s hot flashes and a slight drop in libido. But for many others, like Georgia Hurst, it can be an even bigger deal.
Hurst discovered she had Lynch syndrome after her brother died of colon cancer and her other brother was diagnosed with the same. Since Lynch patients are at a higher risk for ovarian cancer and, according to the American Cancer Society, “currently there are no reliable screening tests [for ovarian cancer],” at the age of 40, Hurst underwent a prophylactic hysterectomy and oophorectomy in order to prevent cancer to her reproductive organs.
“I suffered tremendously two years after my surgery,” she said. “I started having debilitating nausea, vomiting, and migraines. I sought out various doctors for help, but they told me it was all in my head.”
Hurst was on a small dose of estrogen to counter the effects of her surgically induced menopause. She was eventually prescribed additional hormones, but those did not alleviate her emotional symptoms.
“No one close to me understood what I was going through,” she said. “My friends were having babies while I was having my reproductive organs ripped out.”
In another case, Pamela Esposito-Amery, the CEO and co-founder of the Tell Every Amazing Lady About Ovarian Cancer (TEAL) Louisa M. McGregor Ovarian Cancer Foundation, discovered she needed to be tested for Lynch syndrome when her sister Louisa was diagnosed with ovarian cancer at age 41.
“I really had no idea what [getting genetic testing done] even meant,” she said. “I knew I had to give blood and they would run a bunch of tests on [my genes], but I didn’t really think it was a big deal at all.”
But when her results came back, Esposito-Amery recalled, “I just felt like a bomb went off. I [had been] so concerned with my sister and what treatment she was getting that I didn’t even think of my own gene mutation.”
When Esposito-Amery started discussing a hysterectomy with her doctor, she and her husband had already decided not to have children. It wasn’t the idea of not being able to have children or the emotional element of a hysterectomy that scared Esposito-Amery most, though that was part of it.
“I haven’t had the surgery yet and it kind of feels like, ‘OK, last call, [a pregnancy] isn’t going to happen,’” she said. “But early menopause also puts you at risk for other things, so you try and fix one thing and it can actually affect other things.”
Those other things are an increased risk of osteoporosis, heart disease, and cognitive issues. Having your ovaries removed does not mean these issues will occur, but because of the lack of estrogen in the body, “menopausal symptoms you develop will occur earlier and are more likely to reduce your quality of life than if they occurred during natural menopause,” according to the Mayo Clinic.
“Patients Are Not One-Size-Fits-All”
Over the past 22 years, Linda Zercoe has had five different types of cancer and more than 20 surgeries. Over the course of this time, she was diagnosed with Li-Fraumeni syndrome, another hereditary genetic condition that increases a person’s risk for several types of cancer.
Before Zercoe was diagnosed with her genetic condition, she had a recurrence of an abnormal mass in her uterus that she had been told would not return. It was then that she opted for a hysterectomy at age 43.
“After the surgery I was fine,” she said. “I was pretty used to the scar from my other surgery, but I thought to myself, maybe they should have put a zipper in!”
But Zercoe said that after about a week, things changed.
“I felt trapped and enraged, like an animal,” she said. “I became obsessed with suicide and kept thinking about all the different ways I could kill myself. My mood change was so dramatic and severe. After more than a few days, I realized these feelings must be from the loss of hormones.”
The Mayo Clinic suggests that women who have an elevated risk of breast cancer should not have pre-menopausal hormone replacement therapy as it can make breasts look denser on mammograms, making breast cancer more difficult to detect.
However, Ellen Maltoff, a genetic counselor who has spent nearly 20 years in this field and has worked with more than 8,000 families, said one of the most important things doctors can do for their patients at high risk of developing cancer is listen.
“It is a delicate conversation, and people are being given these very rigid options,” she said. “There should be as much listening as there is talking from the provider’s point of view. It’s about listening to what the patient wants and where they are in life in order to guide the right surveillance and risk reduction for that individual.”
When Maltoff started her genetics career at the Cancer Genetic Counseling Program at the Yale School of Medicine, she was 25 years old, unmarried, and had no children.
“I thought about how I would feel if I heard, ‘We know this is what you thought you were going to do with your life'”—have children, not worry about cancer—”‘but now that’s over. You need to have your ovaries and uterus removed now,’” she said. “It really reframed the way I had those conversations with patients.”
There’s been discussion around this idea of more personalized medicine thanks to President Obama’s announcement at the beginning of this year to include $215 million in his 2016 budget for a Precision Medicine Initiative. The idea is to reframe the one-size-fits-all approach to treatments to take better account of “individual differences in people’s genes, environments, and lifestyles.” On March 30, the National Institutes of Health announced the formation of a team of experts to define the scope of the initiative’s research network, which includes the collection of volunteered biological, environmental, lifestyle, and behavioral information, and tissue samples with qualified researchers from a million or more research participants. The NIH also announced that the team will be delivering a preliminary report in September 2015 “that will inform efforts to accelerate the understanding of individual differences that play a role in health, with the goal of informing better prevention and treatment strategies tailored for each person.”
While I do trust my doctors and believe they have the best medical intentions at heart, there’s still a part of me that feels I’m being pressured into something I don’t fully understand. What is really going to happen to my body if I have a hysterectomy at 40? Will I be able to have hormone replacement therapy if I need it? Should I get pregnant sooner? Should I even have children at all given they have a 50/50 chance of carrying the same mutation? I’m 26, so I have time to think about these things. It does feel like there’s a clock above my head ticking away, just ticking and ticking, but at least I know now that I’m not alone, and there are other women out there hearing the same clock as me.