After enduring two surgeries that amounted to a complete hysterectomy and the removal of both ovaries, Dionne Shepperson was thrown into early menopause at 44. The mom of a 4-year-old, she had considered herself young before her surgery.

“I felt like I woke up at 65,” says Shepperson, who received a uterine leiomyosarcoma diagnosis in May 2018. She found herself dealing with hot flashes, night sweats and disturbed sleep, which she says required a huge adjustment.

“On a psychological level, I’m just trying to figure out who this new woman is. There are days when I don’t feel like a woman. (I lost) that sense of sexiness you feel when you’re combing your hair — that spark,” says Shepperson, who lives in Richmond, Virginia. “I’m still trying to find that again.”

Shepperson’s emotions reflect those of many women with gynecologic cancers. Patients and survivors grapple with feel&shy;ings of isolation, depression, distress and anxiety; sexual dysfunction; infertility; body image issues; and fatigue and pain. The changes to their body, coupled with the fear of recurrence, make it difficult to snap back to how they felt and functioned before their diagnosis. When family, friends and colleagues, who may have been supportive during surgery and treatment, expect a return to normal, survivors can feel especially misunderstood and alone.

Dionne Shepperson with her daughter, Amira Shepperson-Wood, faced fatigue and fear of recurrence.

Gynecologic cancers, which involve the female repro&shy;ductive system, include ovarian, endometrial/uterine, cervical, vulvar, vaginal and fallopian tube cancer. Six percent of all new cancers diagnosed this year will be gyne&shy;cologic, affecting more than 100,000 women, according to the American Cancer Society.

Unlike patients with breast cancer, which affects more than 260,000 women in the United States each year, women with gynecologic cancers struggle to find advocacy and support. Breast cancer awareness and fundraisers have led to early detection and more research for this disease; however, gynecologic cancers are rarely discussed, even by women in active treatment.

The public looks at cancer in stark terms — diagnosis, treatment, cure or death. But for a growing number of people, 

gynecologic cancer has become a chronic illness

, says Sharon Bober, Ph.D., director of the sexual health program at Dana-Farber Cancer Institute in Boston. “People live with the distress, the psychological worry, the adjustment to quality of life, and that is not always an easy, feel-good chapter in the whole book,” she says. “We live in a culture that doesn’t allow for narratives that are more complex.”

Survivors would feel less isolated if their family and friends allowed them to have a balance of emotions, including less upbeat feelings like worry, loss and distress, Bober adds.

Shepperson, now 45, says that when she returned to work after surgery, she still experienced extreme fatigue and fear of recurrence. She began bringing healthier lunches to work, and a fellow teacher chided her for eating an organic salad. Shepperson, a single mom, replied that she had a daughter to consider. “Her comment was ‘We’re all gonna die sometime,’” Shepperson says.

Another day, after Shepperson had a mini meltdown at work prompted by fear of leaving her daughter motherless, her boss pulled her aside and asked why she was still upset. “She (asked), ‘Didn’t they take it out?’” Shepperson recalls. “It was kind of frustrating, having that conversation.” Still, she understands the reasoning behind that assumption: “(Before getting cancer,) I think my understanding also used to be ‘Well, you took it out, so it’s gone.’”

The mental, emotional, social and spiritual effects of a disease such as cancer are known as psychosocial concerns, according to the National Cancer Institute. Mental and emotional health can be affected by not only the disease itself but also the side effects of treatment like surgery, radiation and chemotherapy.

Sexual dysfunction affects 75 to 90 percent of women treated for gynecologic cancer, Bober says. Like Shepperson, some women experience sudden menopause and estrogen depletion from chemotherapy. Pelvic radiation may lead to thinning, drying and inflammation of the vaginal wall. “Women experience pain, loss of desire, loss of arousal and (the) inability to have an orgasm,” Bober says. “These are not uncommon problems, but we don’t really talk about them.”

That includes physicians, who may not be comfortable with the topic, says Timothy Pearman, Ph.D., director of the Supportive Oncology Program at the Robert H. Lurie Comprehensive Cancer Center and a professor at Northwestern University Feinberg School of Medicine in Chicago. “Research shows that women don’t bring it up because they want their medical team laser-focused on curing their cancer,” he says. “They fear that pointing out unpleasant side effects will cause their physician to cut back on their treatment.”

Tina Vetreno’s cervical cancer was caught early, when she was 31 and had been married just four years. She had always wanted to have children. But after three surgeries to remove her cervix and lymph nodes from her pelvic area, Vetreno learned that if she got pregnant, she would need complete bed rest for her entire pregnancy and still face a high risk of miscarriage. She and her husband felt they couldn’t handle the emotional toll that would take.

After seven years of horrific pain with every period, Vetreno needed a full hysterectomy. Not only was that emotionally difficult, but the surgeries and medication robbed her of her sex drive. Her husband felt she was pushing him away, she says. “That has done so much damage to our relationship. We love each other very much. We see a marriage counselor together. We’re strug&shy;gling to get back to where we were before,” says Vetreno, 41, of Sudbury, Massachusetts. “We are trying very hard to work through the process so we don’t resent each other. It’s a challenge.”

Meanwhile, she is trying to work through her feelings. “You question yourself. You are not a whole woman. I felt like I can’t be there for my husband physically,” she says. “The piece that a lot of people don’t understand is how stressful and hard that is for the individual.”

Tina Vetreno lost her fertility because of cervical cancer, but found support from women who had been through a similar situation.

If a woman doesn’t get good care for her vaginal health, that will affect her and her partner’s quality of life, says Heidi Donovan, Ph.D., RN, a professor at the University of Pittsburgh School of Nursing. She recommends that women who have had radiation to the cervix or vagina get a vaginal dilator. Other ways to treat sexual issues from cancer treatment include hormone pills or a patch that can ease vaginal dryness and hot flashes, as well as water-based lubricants and vaginal moisturizers.

Women need to take both a physical and psychosocial approach to treatment, Donovan says: “Either one alone is not enough. Physical problems can lead to anxiety around sex. Other times, the anxiety and fear around mortality and cancer interfere with women’s emotional health.”

When Amy Murrah awoke from laparoscopic surgery for endometriosis, her doctor told her she had borderline ovarian cancer and would probably not need chemo&shy;therapy. The doctor suggested a hysterectomy, but Murrah was 29 and wanted children. The surgeon removed her right ovary, right fallopian tube, lymph nodes and omentum, part of her stomach wall lining.

Murrah later received a diagnosis of stage 3a micropapil&shy;lary serous carcinoma, a type of ovarian cancer. “I was an emotional wreck. There was the fear of never getting married, never having kids, of what my life would hold for me. Would I survive?” says Murrah, who lives in King George, Virginia.

She was far younger than most women who receive a diagnosis of a gynecologic cancer — the median age for an ovarian cancer diagnosis is 63 &mdash; and none of her friends had any experience with cancer. Murrah, who later married and had two miscarriages before under&shy;going a hysterectomy, couldn’t find a support group for young women like her.

Along with her best friend, Murrah attended a cancer march in Washington, D.C., and found it cathartic, she says, but that was a one-time event. She tried joining online chat groups but pulled away because other participants were dying, which made the prospect of her own death too real.

Wendy Ericsson and her niece, Lindsay Sweet, participate in the National Race to End Women’s Cancer.

For Shepperson and Vetreno, online support groups have proved helpful. Talking with women who described similar experiences, such as judgement around cervical cancer and stories of hurtful, ignorant comments, helped Vetreno learn, she says. “I got to talk through the stigma and emotional impact — and the fact that I can’t have my own children &mdash; with a group of women who understood,” Vetreno says. “It was pretty amazing.”

Shepperson joined a Facebook support group. Although she still fears encountering someone with a similar cancer who isn’t doing well, the connec&shy;tion has been a huge blessing overall, she says. “There’s no one who can get what you’re going through physically and emotionally like these ladies. You can talk about anything,” she says. “You can say, ‘Today I’m thinking about what will happen to my daughter. I just feel really afraid.’”

The women also share photos of their scars — their badges of honor. “Nobody in your regular life wants to see it, but for me, it’s a reminder of what I have gotten through,” Shepperson says.

Although no one-size-fits-all approach can manage side effects, exercise can help in many ways. 

It is the most important thing you can do,” says Pearman. “It affects fatigue, pain, anxiety, depression, body image and sexual dysfunction.”

Twenty years ago, knowing how important it would be to her emotional and physical health, Murrah continued teaching group fitness classes. “It gave me a purpose and a reason to get up in the morning,” says Murrah, now 50 — and cancer-free for 20 years. “It was a challenge, and I had to modify my activity level, but it was a joy to see the students return to root me on during every class. That was a tremen&shy;dous part of keeping my emotional health in check.”

After Wendy Ericsson completed surgery and six months of chemotherapy for fallopian tube cancer, which accounts for 1 to 2 percent of all gynecologic cancers, she was so fatigued that walking felt like moving through wet cement. As soon as she could muster the energy, she took advantage of Livestrong’s 12-week YMCA member&shy;ship that provides free or low-cost exercise regimens for cancer survivors, along with professional advice tailored to survivors.

“It was wonderful to be surrounded by others in the same situation, working toward the same goals of feeling stronger and better,” says Ericsson, 59, of Worcester, Pennsylvania. “I went in feeling like a limp noodle and left feeling like I could do things again.”

Encouraged by a friend, she took up restorative yoga, which incorporates meditation and mindful breathing. It has been extraordinarily helpful, she says, producing complete and total relaxation. “I don’t care if you’re diagnosed with stage 1a or stage 4b, recurrence becomes a lifelong worry,” she says.

Ericsson has chosen to channel her energy into advocacy work. She attends survivors’ courses to learn how to live with cancer and surrounds herself with positive, encouraging people. She has also learned to accept help from friends. “Let people help you. It can be uncomfortable, but it’s important for both of you,” she says. “It strengthens your relationships and makes people feel useful.”

Articles

Features

Patients speak up on the rarely discussed side effects of gynecologic cancers.

Under the Spotlight: Patients Speak Up About Gynecologic Cancer Side Effects

escape the fact that we are in the midst of a national epidemic involving opioid pain medications. The most recently revised numbers published by the National Institute on Drug Abuse show a record 47,600 deaths attributed to opioid overdose in 2017, and the President has declared the issue a public health emergency. It seems that every day, there is a new story in the media about a life cut tragically short due to the ravages of opioid addiction. Many people have family or friends whose lives have been touched by this epidemic.

Yet opioids — when used and monitored appropriately — remain an indispensable tool for treating cancer-related pain. The National Comprehensive Cancer Network (NCCN) continues to endorse opioids as a first-line option for adult cancer-related pain. As a gynecologic oncologist, I have patients who rely on opioids to treat their acute post-operative pain, as well as chronic pain because of their cancer. For example, patients with cervical cancer have been shown to have high rates of pain and require a proactive approach to pain management.

Like any other medication, opioids have several side effects that doctors and patients should be aware of; the most common and often most bothersome is constipation. Anyone requiring regular treatment with opioid pain medications should discuss use of medication to prevent and treat constipation with their physician. Severe cases of opioid-induced constipation can be treated with opioid antagonists, such as methylnaltrexone, which is not absorbed by the body so it does not counteract pain relief effects. Other less common side effects include opioid-induced nausea and sedation, which can almost always be treated with changes in dose.

Several commonsense actions should be taken to reduce the risk of opioids. As the NCCN recommends in its cancer pain guidelines, the lowest dose of opioid that successfully controls pain should be used. It is also imperative that opioids be safely and securely stored at home. Opioids that are freely accessible to friends and family present a risk for diversion, which is the transfer of a controlled substance from a lawful to an unlawful channel of distribution or use. Unused and unwanted opioids should be disposed of safely. Many hospitals and pharmacies will take back unused opioid medications, and the Drug Enforcement Administration holds a national drug takeback event every six months, at which patients can return any unused medications. Finally, as the U.S. Surgeon General recently advocated, the overdose-reversing drug naloxone should be prescribed and available to those requiring high-dose opioids.

It is important to note that opioids are not considered first-line treatment for pain in cancer survivors, who account for more than 15.5 million people in the United States. Among gynecologic cancer survivors, 35 percent continue to experience pain one year after completion of treatment. The American Society of Clinical Oncology (ASCO) recently released a practice guideline on the management of chronic pain in survivors of adult cancer. In that document, ASCO argues that their use of opioids should be considered differently from that of patients with active cancer who are undergoing treatment. ASCO recommends use of opioids for chronic pain “in carefully selected patients who do not respond to more conservative pain management and who continue to experience pain-related distress or impairment of physical function.”

Non-opioid medication pain medications should be considered for both active patients with cancer and survivors. These medications include traditional painkillers, such as nonsteroidal anti-inflammatory drugs (e.g., ibuprofen) and acetaminophen, in addition to antidepressants and anticonvulsants that have painkiller properties. Use of these additional medications can contribute to improved pain control and minimize opioid usage.

As oncology providers, caregivers and advocates, we must fight to preserve access to opioids for patients who rely on these essential medications. It is encouraging that many of the new regulations drafted to address the opioid epidemic, such as the landmark Massachusetts opioid legislation signed in 2016, exempt patients with cancer from the most oppressive restrictions on opioid prescriptions. However, as other states and the federal government contemplate additional legislation to help address the opioid epidemic, the oncology community must demand continued safe access to opioids.

AMIN A. RAMZAN, M.D., is a gynecologic oncology fellow at the University of Colorado. He co-authored a series of articles on opioid use in the age of the opioid epidemic in the journal 

For more news on cancer updates, research and education, don’t forget to 

Speaking Out

Many patients suffer from chronic pain, making opioids essential for care.

Opioids Must Be Used Responsibly Amid a National Epidemic

When Luci Berardi received a stage 4 ovarian cancer diagnosis in October 2010, she did not want to know her chances of survival. The physician told her family she’d be lucky to make it through Christmas, but no one passed that on to her. “I knew I had cancer and needed chemotherapy. It was bad enough (that) I knew it was stage 4,” Berardi says. She focused on her treatment and healing and revamped her diet, while still teaching yoga and working part time doing administrative work for a dental practice.

About 85 to 90 percent of ovarian cancers are epithelial cancer. For those with stage 4 disease, “the statistics may say that 17 to 20 percent will survive five years, but it’s not zero,” Berardi says. “People survive.” Survival rates are higher for other ovarian cancers — for all types, the five-year relative survival is 47 percent. If the disease is found early and has not spread outside the ovary, that rate jumps to 92 percent.

Like Berardi, women are living longer with ovarian cancer, and it’s increasingly seen as a chronic disease. Front-line, or initial, treatment hasn’t changed much in the past decade. But in recent years, new treatments have been added to the mix. These include oral therapies instead of IV; combination, immuno- and anti-angiogenic therapies; and PARP inhibitors. Most of these are for recur&shy;rent disease and may be based on genetic testing results. For the estimated 22,530 women a year who receive an ovarian cancer diagnosis in the United States, this is good news. Testing for genetic mutations may look at inherited mutations, which a person is born with, and show a higher likelihood of cancer risk. Genetic testing can also be done on the tumor tissue, showing genetic changes that were acquired later, and results may indicate whether specific treatments are more likely to help.

LUCI BERARDI says she views her disease no different than someone who has high blood pressure or diabetes.

About 75 percent of women with ovarian cancer receive their diagnosis when the disease is stage 3 or 4. “The majority of them can be treated with curative intent,” says Pam Khosla, M.D., section chief of hematology and oncology at Sinai Health System in Chicago. That includes debulking surgery, in which surgeons remove as much as they can of the visible tumors and cancerous tissue. Microscopic cancer cells and cancerous tissue that can’t be surgically removed are then treated with chemotherapy — typically, carboplatin and Taxol (paclitaxel).

Some doctors recommend surgery before the standard six cycles of chemotherapy, whereas others recommend three cycles, surgery and then three more cycles. Surgery may be the first step if the tumor is causing pain or physical issues, such as a bowel obstruction, or the physician is unsure whether cancer is causing the problems.

That was the case for Erica Roberts. In December 2015, she had abdominal cramping so severe, she thought her appendix was bursting. A trip to the emergency room and radiology imaging led the physician to believe she had an ovarian cyst. Only during the operation several weeks later did he realize she had stage 3A high-grade serous carci&shy;noma, and he removed her ovaries and affected organs.

Not all patients are candidates for surgery — maybe the cancer is too extensive or the surgeon doesn’t think enough diseased tissue can be removed. The patient would typically receive chemotherapy every three weeks &mdash; two weeks on, one week off &mdash; or weekly, depending on the oncologist. After three cycles (or nine weeks) of treat&shy;ment, imaging is repeated and cancer antigen (CA) 125 &mdash; a protein found in the blood &mdash; is measured. A CA 125 blood test can indicate a rise in ovarian cancer growth and determine how well the patient is responding to chemo&shy;therapy. If chemotherapy is working, patients who have not yet had surgery may be scheduled.

In June 2018, the Food and Drug Administration (FDA) approved Avastin (bevacizumab), a targeted therapy that belongs to a class of drugs called angiogenesis inhibitors, to use with chemotherapy and then alone for about a year, for women with stage 3 or 4 ovarian epithelial cancer that has been surgically removed. It was shown to increase the average amount of time before a recurrence. “To date, it hasn’t led to improvement of overall survival, but it keeps the cancer in remission four months longer than not using it,” says Ursula Matulonis, M.D., director of gynecologic oncology at the Susan F. Smith Center for Women’s Cancers at Dana-Farber Cancer Institute in Boston.

About 70 percent of women with ovarian cancer will face a recurrence, according to the Ovarian Cancer Research Alliance. However, recurrence also varies by stage of disease. Maintenance therapy can help prevent the cancer from returning after the completion of chemotherapy. Up until a few months ago, Lynparza (olaparib), a PARP inhibitor, was approved only for patients who had a recurrence. But in December 2018, the FDA approved the oral medication as a first-line maintenance treatment for women with BRCA inherited (familial) genetic mutations — BRCA1 and BRCA2 raise a person’s risk of developing certain cancers, such as ovarian, breast and prostate &mdash; and advanced-stage disease. The drug targets an enzyme inside cancer cells to make it less likely that the cancer cell will repair itself, resulting in cell death. “It’s shown impressive results,” Matulonis says, with an increase of three years in progression-free survival compared with placebo.

Regardless of BRCA mutation status, PARP inhibitors were already approved as a maintenance strategy, says Maurie Markman, M.D., president of medicine and science and a medical oncologist with Cancer Treatment Centers of America in Philadelphia. The PARP inhibitor Rubraca (rucaparib) is approved for women with BRCA-positive advanced ovarian cancer who received multiple lines of chemotherapy treatment, and Zejula (niraparib) was approved after subsequent chemo&shy;therapy, no matter the BRCA status.

Although chemotherapy is the standard initial treatment, it doesn’t work for everyone. Diane Davis learned of her stage 2C ovarian cancer diagnosis in January 2017. After having 18 inches of her sigmoid colon removed because of tumor involvement, she began chemotherapy. Three cycles in, she felt just as bad as she had before surgery. Radiology studies showed that the cancer had grown back, spreading into her lymph nodes. “I was dumbfounded,” she says. “No one ever says people don’t make it through chemo.”

Genetic testing revealed that her tumor was microsatellite instability high (MSI-H) — cancer cells that have a greater than normal number of genetic markers and respond well to immunotherapy. Although immunotherapy has not been highly successful with ovarian cancer, Keytruda (pembrolizumab) was approved in 2017 for adult and pediatric patients with unresectable or metastatic solid tumors identified as MSI-H, just at the time she needed it. Davis started the two-year treatment that June, and in August, a CT scan showed that the new tumor was gone and the lymph node tumors shrunk. “We all cried,” Davis says. “My doctor said he’d never seen anything like it.”

DIANE DAVIS with her husband, STEVE, and grandsons, RYAN (in the forefront) and SEAN, whom she moved closer to following her diagnosis.

Genetic testing should be done on all patients at the start of treatment, Matulonis says. This often involves blood tests that look at hereditary mutations. “Right now, there are at least 11 implicated genes for high-risk transmis&shy;sion,” she says. She recommends including as many genes as possible in the testing panel, not just the BRCA mutations. A genetic panel also covers Lynch syndrome, an inherited condition that increases a person’s risk of developing cancers such as colon, endometrial and ovarian and is linked to several gene alterations. Davis is living with Lynch syndrome. In addition to those that are inherited, mutations can also be acquired in the tumor.

Tumor assays can be used that may point to experimental therapies that attack the cancer's vulnerabilities.

Although genetic testing is now highly recommended, not all patients think to ask for it. “A lot of people in my local support group hadn’t heard of it,” Davis says. “It’s important — not only knowing that you might have a genetic mutation that could give you other types of cancer but (also) to know (about) other treatments avail&shy;able. If my doctor hadn’t done testing on my tumor, I couldn’t get immunotherapy, and I’d not be talking to you today.”

Berardi also found genetic testing helpful. When she had a recurrence in 2014, her doctor recommended chemotherapy because she did well on it previously. She heard about genetic testing and sent a tissue sample from the baseball-size tumor the surgeon found during surgery. The genetic profile showed that the standard chemo&shy;therapy would not work well for the tumor. Instead, her doctor gave her etoposide, a chemotherapy less commonly used in ovarian cancer. It put her in remission, with no evidence of disease.

Living with a chronic disease may affect a person physi&shy;cally and mentally. For instance, chemotherapy-related fatigue and nausea are common. Women with ovarian cancer also face sexual health concerns, such as painful sex, libido loss, early menopause and infertility. All these symptoms can lead to mental health issues such as depression and anxiety.

Through palliative care, health care providers can help patients through these concerns and improve their quality of life. “Palliative care doesn’t mean hospice,” Markman says. “‘Palliate’ means ‘to improve, to make better.’” He prefers the term “supportive care.” The goal of palliative care is to prevent or treat the symptoms of the disease as early as possible, according to the National Cancer Institute.

Patients within Sinai Health System meet with a multidisciplinary team, including a pharmacist, supportive oncology coordinator, nurse navigator and behavioral therapist, to schedule care, answer questions and address any issues, Khosla explains. Using this team approach has both improved patient satisfaction and quality of life and reduced hospital visits. Some hospitals reserve the palliative care specialists for those whose lives are heavily affected by treatment, though nurses and oncologists are trained to help with symptoms. “If you’re feeling side effects, chances are they have something to help you get better,” Roberts says of her oncology nurses. “You don’t get a gold medal for going through chemo without taking pain pills.”

Receiving palliative care can improve more than how a person feels, according to a study published in 

, which showed that it can keep patients alive longer. Researchers analyzed studies that compared patients with advanced cancer who received palliative care with those who didn’t. They found that the palliative care group lived 4.5 months longer.

As many as 20 percent of patients with advanced stage disease have no recurrence after front-line therapy. Still, life after treatment doesn’t necessarily bring a sense of relief, especially when it’s time for periodic CA 125 testing.

Roberts finished her front-line treatment in 2016, including surgery and IV and intraperitoneal chemo&shy;therapy. She’s been in remission since. “The closer I get to the three-month checkup, the drumbeat gets louder,” and she thinks about the cancer constantly, she says. In addition to taking medications to handle her anxiety, she sees a counselor and goes to a Gilda’s Club support group. “The physical scars are just about healed. The emotional footprints are left,” she says.

Although difficult, the treatment process can still make women feel tended to. Once chemotherapy finished, Carol Hyman felt a cloud hanging over her — she felt alone and concerned about recurrence. “Even though the chemo is terrible, you’re being taken care of; you’re checked on continuously,” she says. Hyman received a stage 3B diagnosis when she was 65. Physicians found three large tumors and removed about a dozen lymph nodes.

In addition to finding her own support network, Berardi changed her diet. She sees a naturopath to get high-dose vitamin C infusions and supplements to reduce inflammation. She eliminated processed sugar and dairy and decreased her intake of carbohydrates. She takes a small amount of naltrexone and metformin, prescribed by her naturopath, in hopes of preventing recurrence. Patients sometimes use naltrexone at low doses to inhibit cancer growth and balance the immune system. Metformin targets stromal inflam&shy;mation, which may provide resistance to cancer growth. Neither is approved by the FDA for ovarian cancer treatment because of lack of clear proof from controlled clinical trials, but anecdotal evidence suggests that some patients may benefit from these medications. “I’m trying to create an internal environment that is not conducive for the cancer to survive,” Berardi says.

Although she has had two recurrences, she says, the experience was in a way a blessing. “It took some of the anxiety away,” Berardi says. “My mindset now is that it’s a chronic disease, nothing different than high blood pressure or diabetes. You have to monitor it.” She also wrote a book, “Chasing Rainbows: My Triumph Over Ovarian Cancer,” because she was unable to find that sort of resource when she first received her diagnosis.

Hyman also finds support groups comforting. At her first meeting, she realized that every woman there had had at least one recurrence. Even though that talk can be scary, Hyman says, it gave her hope. One woman’s comment left a lasting impact: “I’m not dying from ovarian cancer — I’m living with ovarian cancer.”

Women with this disease are living longer, despite common recurrence.

Ovarian Cancer's New Identity: A Chronic Disease

Diagnosed with an unusually aggressive, high-risk form of the disease, I was given just a 20 percent chance of surviving five years. By the grace of God — and after logging many miles on my running shoes &mdash; I am now six years cancer-free.

I began running in 2013 at age 58, a year after cancer surgery and treatments. I’d had more than my fair share of sick days during the previous year, but by the morning of my first 5K, I felt healthy as a horse. I made myself two promises that day: I was not going to make it easy for my cancer to return, so I would keep my body healthy — running was one way to do that. And I would find a way to use my running shoes to help others with high-risk endometrial cancer.

The latter was important because even though endometrial cancer is the fourth most common cancer for American women, almost nobody speaks about it in public. The mainstream media seldom mention it.

If you have never heard of endometrial cancer, you’re in good company. I had never heard of it, either, until my doctor told me I had it. There is a wall of silence that surrounds this type of cancer.

It has a reputation as a “good cancer.” For women who find their cancer early, it can be. Most are cured by surgery alone. But for many, it’s anything but good. More than 61,000 women will receive an endometrial cancer diagnosis this year, according to the American Cancer Society (ACS). About 10 to 20 percent of those cases will be high risk. Those women will face a tougher fight because of the silence.

Let me explain. Imagine sitting in your oncologist’s exam room facing a huge, inviting poster that reads “Ask your doctor if a clinical trial is right for you.” Now imagine you have searched every clinical trial data&shy;base you could find. Not one listed a clinical trial open to you. And your doctor can’t find one, either.

I don’t have to imagine it. I lived it. Given a dismal prognosis, I wanted to be included in a clinical trial. There were plenty of trials for other women’s cancers — breast, ovarian, cervical &mdash; but there were almost none for women with high-risk endometrial cancer. It seemed nobody was looking for a cure for my cancer.

I wanted to be included in a clinical trial. No trial wanted me.

Research for all gynecologic cancers is underfunded. That’s a situation that needs to change. But as difficult as it is for women with ovarian and cervical cancer to find a clinical trial, it is almost impossible for women with high-risk, recurring or metastatic endometrial cancer to find a study that will include them.

Why are there so few clinical trials for the most common gynecologic cancer? Don’t women with endometrial cancer deserve a chance to live, too?

In 2013, the ACS estimated that 8,190 women would die from endometrial cancer. Six years later, that number has risen to more than 12,000. The women dying are our mothers, grandmothers, daughters, sisters, coworkers and friends.

It’s easy to overlook cancers invisible to the public eye when it’s time to fund research. But research saves lives, and we need more of it to cut the number of women dying from endometrial cancer.

But how will we get it? I am only a single person. I have no money, no influential friends and no political influence. What I do have are my running shoes, my special race shirt honoring those lost to endometrial cancer and a willingness to run the extra mile for them.

So, for the fourth straight year, I will run/ walk a 100-mile ultramarathon this Labor Day weekend — the start of Gynecologic Cancer Awareness Month.

I don’t have the power to reduce the number of women who receive diagnoses or die, but maybe running 100 miles for endometrial cancer awareness will help chisel a crack into that wall of silence.

Colleen Johnson PH.D., is a retired statistics professor and chicken farmer who helped beat endometrial cancer by losing 100 pounds and transforming herself — at age 58 &mdash; from a self-described couch potato to an ultramarathon runner. She is a peer navigator with the Friend for Life Cancer Support Network in Louisville, Kentucky, and advocated to get uterine cancer included in the National Comprehensive Cancer Network Guidelines for Patients, now available at nccn.org/patients.

Voices

An endometrial cancer survivor runs to raise awareness for a disease many don’t want to talk about.

Cracking the Wall of Silence

actor Scott Foley took on one of the biggest roles of his life: secondary caregiver to his mother. She received an ovarian cancer diagnosis, which put many responsibilities on Foley. His mother suffered recurrences for four years before passing away from the disease 30 years ago.

To help other women and their families feel empow&shy;ered, Foley, who is best known for roles in hit TV shows, such as “Felicity” and “Scandal,” has teamed up with Tesaro, an oncology-focused biopharmaceutical company, for the national movement 

he shares the life lessons learned and advice for other caretakers.

®: Can you share a little about your mother’s ovarian cancer diagnosis? 

I am the oldest of three boys. And I was 11 when we first found out that my mom had ovarian cancer. I remember my parents sitting us down and telling us mom was sick and she needed to get some treatment and spend some time in the hospital and she was going to have surgery. My mom had a full hysterectomy and then went through chemotherapy and radiation. Things were not that different right off the bat, but chemotherapy takes its toll. She lost her hair, which is a strange thing for an 11-year-old kid to deal with around his friends.

My dad was trying to hold down a full-time job and raise a family, so a lot of the caregiver responsibilities sort of fell on my shoulders as the oldest son — taking care of my brothers, making sure my mom’s room was quiet and she had everything she needed. It was a lot of responsibility.

And not long after that, maybe a year to a year and a half, they told her they got all the cancer. She went into remission. And it was great. My mom started volunteering at cancer information centers at our local hospital, but pretty quickly the cancer returned stronger. It had metastasized. This was when we knew that something serious was going on, even at that age. I don’t know if we ever knew that she was going to pass away or that that was a possibility, but she would spend longer (amounts of time) at chemotherapy (visits) and the hospitals. Toward the end of her life, my dad found a hospital and a doctor in Philadelphia — we were living in St. Louis at the time &mdash; who was experimenting with higher doses of chemotherapy and radiation and was having some success, so my father moved my mom to this hospital. The last nine months of her life she was there. Struggling. We only saw her one time. We went up for Thanksgiving. My dad was there every weekend and that meant that I was the caregiver looking after my brothers even though we had a nanny. And when she passed, it was a surprise, not to my father, but to us kids. We didn’t realize the severity of the situ&shy;ation. Looking back, it would have been nice to know. I think kids can handle it.

Caregivers are often called the unsung heroes. Serving as a secondary caregiver to your mom, what was that like to take on at a young age? 

It was probably more than I was ready for. It’s a strange thing to talk about because at that age you shouldn’t be focused on a sick parent and having to take care of them while the other parent is making ends meet. I remember, specifically, hundreds of times telling my brothers “No, don’t play here. Leave mom alone. Don’t go in there.” And they’d say, “We need aspirin.” Then I’d say, “I’ll get it.” (I remember) tip-toeing through the room, making sure mom had her water. You know those plastic hospital carafes? My mom liked them. We took a couple of those from the hospital and that’s what my mom would keep her water in on the bedside table, so it was my responsi&shy;bility to always keep that full (of) ice and water. It was a lot when all I wanted to do was play video games and go outside with my friends. Looking back, how lucky was I, as the oldest son, to get to spend that time and be able to take care of her?

I empathize and sympathize with those who are in that position now because it’s a tough place to be. I have been in the public eye for 25 years and have never really spoken about this before, but I’ve come to learn about the progress that medicine has made and the advancements and working with Tesaro and the Not on My Watch campaign is a way I hope that we can get the word out to caregivers and people suffering through recurrent ovarian cancer and let them know that there aren’t just times to sit back and wait. That was one of things that our doctor told us about my mom, “Hey, we did radiation. We did chemotherapy. Now let’s wait and see.” And you don’t have to do that anymore. There are options. There are maintenance therapies that delay the time in between recurrences.

How did you get involved in Not on My Watch? 

Even though I don’t speak about it publicly a lot, my friends and family know I lost my mom when I was really young, and someone reached out to me and told me about this movement and I was put in contact with Tesaro. I’ve become the man I am today partially due to (my mother’s passing) at such a young age and I want to let people know that if they have a story like mine that their story doesn’t have to necessarily end the way mine did.

What is the most important thing that you took away from your experience? 

I now know how delicate life is. I deal with death in a much different way now. And I am much more aware, I think, than a lot of people I know of on how fragile we all are — walking around, going to Starbucks, doing our daily routines, and how quickly they can be taken away. I do my best, I’m not great, like everybody else, to try to stop daily and recognize that. Put my phone down and play with my kids, or turn the TV off and look my wife in the eye and tell her I love her.

What is your biggest piece of advice for other caregivers? 

This is going to sound strange and counterintuitive, but don’t just focus on the person who’s sick. And not just for your benefit, but for their benefit as well. We want to make sure they are comfortable, getting the best treatment, and that’s all important but these diseases (are) like a waterfall. They affect everybody involved — family, friends and the community. And you have to create support throughout all those different levels. I would say to caregivers, turn around and look at who else is suffering. It might be you, and you might have to reach out to someone else.

Listen to the CURE® Talks Cancer Podcast with Scott Foley, "

The Advocate

The “Whiskey Cavalier” actor opens up about caregiving for his mother following her ovarian cancer diagnosis.

Scott Foley: We Are All Fragile

With an extensive history of breast and ovarian cancer in her family — dating to 1860 — and a breast cancer diagnosis of her own, Susan Winn decided to take action. She was connected with Dr. Henry Lynch, at Creighton University in Omaha, Nebraska, who studied the Winn family and seven other families, eventually isolating the BRCA mutation.

Winn learned that her family had the most significant history of breast and ovarian cancer ever documented in the United States. She encouraged her daughters, Kathryn (Winn) Buckley, Bridget (Winn) Stillwell and Maureen (Winn) Boesen, to be tested for the BRCA gene. Bridget and Maureen tested positive.

Instead of keeping their story secret, the three sisters are sharing it in an upcoming book, “Nipples Optional.” 

, they discussed how the BRCA gene changed their lives.

KATHRYN BUCKLEY, BRIDGET STILLWELL and MAUREEN BOESEN want to empower women to advocate for their health.

®: What emotions came with being part of history but also learning of a serious health situation? 

We always joke that it’s not the claim to fame that we had hoped for in life. We take a lighthearted approach to this just because we find ourselves very thankful that we do know about it. Our parents and grandparents didn’t know that this was their fate, and we did. So we find ourselves fortunate to have been a part of this study and to be as knowledgeable as we are.

I’m BRCA-negative, but I will say this: I think we’re lucky, because had we not known we had this gene or been fortunate enough to find out, if we were to get the cancer diagnosis, we would have been shocked. We were lucky enough not to have a diagnosis among the three of us.

And second, I take my health a lot more seriously. I’m an advocate for being healthy and taking care of my body and going to the doctor when I need to because we’ve learned so much from science that we’re able to use that information to become healthier people.

Even though Kathryn is BRCA-negative — and I don’t want to speak for her, but she’s been on this journey with us — it’s not like she’s, “I’m BRCA-negative. Peace out, ladies.” She is there by our side, and she has really experienced this with us. So it has bonded us that much more.

How did you three share this information with the rest of your family? 

Our cousins on our (maternal) side were all a part of the study, so they are very much a part of this. I would say maybe the bigger thing is discussing this with our future selves, because it can significantly change a person as a woman.

I met my spouse before I found out I was BRCA-positive and had my surgery. My spouse has a chronic disease, and because of that, we understood each other on a deeper level. We understood that life is short, and we need to embrace it and do what we can and not really dwell on the negative stuff in life; focus on what we can control; and make the best of the time we have. That sounds morbid, (but) it’s not.

Our mom wrote a book, “Chemo & Lunch.” It was shared with all of the family: her side, my dad’s side and friends. When I met my spouse, I had already had the mastectomy and gotten the BRCA mutation diagnosis. And he lost his own father to prostate cancer pretty young, so he was so amazingly supportive and said, “Anything you need to remove from your body to save your life, you do it.”

How do you plan to have this conversation with your children?

My daughter is the oldest of the cousins. She is 8 years old. And we talk about it a lot. It has always been an open dialogue, not necessarily that she could be predisposed to breast cancer, but why my body is the way it is, what I’ve done, and that Grandma had cancer. As they get older, it’s going to be something that, just like when we were growing up, (they) always knew that this was a part of (their) lives. It’s not going to be a bomb that gets dropped on her or my son when they’re 18.

(My children) understand the level that they can. However, Bridget is very passionate and excited about finding out her kids’ genetic results. She said that (she) would find out now if she could. And I am terrified. Not that Bridget is not terrified, but I don’t want to find out. It’s one thing to be a BRCA carrier, but another when it comes to your children.

I don’t think excited would be the word. I would be more interested to know. As they get older, I think it’ll be a good decision for us to make together when they are ready, and we’ll find out together so I don’t know something about them that they don’t know about themselves.

I have two boys, and one is adopted. We will be getting genetic testing on him to find out what resides within his DNA. I don’t know that I would have even considered it, had I not known how beneficial genetic testing could be. Genetic testing is going to be a part of our lives and will be talked about a lot.

Can you discuss your upcoming book, “Nipples Optional”?

We’ve always been inspired to tell our story like (our mother) did. When we started out, I think the idea was to document our story for our family, friends and children, so that they understand what we experienced. The story that we share chronicles our experiences over the last 20 years, from finding out we were positive to present day. And it goes back and forth between each of our experiences. It chronicles Kathryn finding out she’s negative (to) her experience with infertility for almost a decade. Then Bridget finding out she is BRCA-positive, having two children and then, unfortunately, experiencing infertility and miscarriages. At the same time, I found out that I was BRCA-positive. I got married and had my own children and later in life developed significant anxiety. It discusses (not only) BRCA and our preventive measures that we’ve taken to prevent a cancer diagnosis, but also women’s health issues that we have all endured — really just the crap that we deal with as women in life.

You can reach so many people and tell them it’s going to be OK. I’ve been there, you’ll be there, and you’ll get through it. And this is how we got through it. We called it “Nipples Optional” because when you have a mastectomy, your nipples are optional. It’s become so much more than just hereditary cancer.

What advice do you have for others who want to learn about their family health history? 

I’m almost 40, and I have a lot of friends who are getting to that age where they’re doing mammograms. I’ve had many people come up and say, “My mom, sister or aunt had breast cancer. Do you think I could possibly be BRCA-positive?” My first piece of advice to any woman in that situation is to take a deep dive into your family history: How many aunts? How many people have breast cancer?

Talk to your doctor. If you have strong feelings, then push for genetic testing. It’s widely available. On the topic of talking about your family health history, it can be very scary. And some people say they just don’t want to know. My advice from going through this, surgery and everything, is don’t be afraid to know what is in the line of sight for you. Your risk is giving you the most health power you can have to save your life (and) change your life and your children’s lives.

I would add that, as a woman you need to be an advocate for your own health. You need to stand up for yourself. You need to be vocal about your health.

Three sisters trace their family’s experiences with breast and ovarian cancer across generations.

A Long Family History of BRCA

— the mental, emotional, social and spiritual effects of cancer &mdash; occur at diagnosis, during treatment and throughout life after the disease. It’s these side effects that often go unspoken and linger in the minds of those affected.

But patients and survivors don’t have to suffer in silence. In this special issue of 

®, we address the psychosocial needs of women who have a gynecologic cancer. Four women take us along as they share some of their innermost feelings: One woman describes the fear of leaving a young daughter motherless; another recounts being a newlywed thrown into a cancer world that robbed her of children and her sex drive. Their stories serve as inspiration for others who may be sitting quietly with feelings of anxiety, depression, fear of the future and isolation that prevent them from seeking help. If that describes you, seek out women who have been down the same path and found comfort through advocacy, exercise, medita&shy;tion and support groups. Take these steps to clear your mind — even for just a brief period.

Also inside, a feature story examines treating ovarian cancer like a chronic disease. Many people refer to ovar&shy;ian cancer as a silent killer; however, innovative medications, such as tar&shy;geted therapies, are adding years to the lives of patients with advanced disease. Health care professionals are also turning to palliative, or supportive, care to help women living with the disease mitigate symptoms and improve their quality of life.

And meet three sisters whose extensive family history of breast and ovarian cancer dates to 1860. The study of their family and seven others helped researchers isolate the BRCA mutation, which has since influenced genetic testing, therapies and preventive surgeries for many people and will affect future generations. In an interview with 

®, these women reveal their BRCA status, offer advice for others and explain why asking questions about family health history is crucial.

This issue also covers the unmet sexual health needs of women with gynecologic cancer, reflections on life after two prophylac&shy;tic surgeries and the importance of painkiller use even during a national opioid crisis.

From the Chairman

Mike Hennessy, Sr., Chairman and CEO, discusses psychosocial issues associated with women's cancers &mdash; the mental, emotional, social and spiritual effects of cancer that occur at diagnosis, during treatment and throughout life after the disease.

Take a Mental Break: Psychosocial Issues and Women's Cancers

Yale Cancer Center researchers have defined the genetic characteristics of ovarian tumors, information that could lead to new opportunities for personalized therapy, according to study findings published in Proceedings of the National Academy of Science.

The team examined 64 primary, 41 metastatic and 17 recurrent tumors from 77 patients and then matched them with normal DNA by whole-exome sequencing, which is a technique for sequencing all the protein-coding region of genes in a genome.

The researchers identified several genes, including c-MYC and PIK3CA, that are frequently mutated in primary-metastatic and chemotherapy-resistant ovarian tumors.

In addition, about half of the patients harbored a germinal (inherited) or somatic (an alteration in DNA that occurs after conception) damaging mutation in a repair gene involved in predisposition to ovarian cancer.

The findings also revealed a branching structure, suggesting that the tumors share a common ancestry before evolving on their own, wrote researchers. That characteristic, along with similarities among primary and metastatic tumors, may explain why screening programs for the disease haven’t been successful.

“We have identified striking genetic similarities between primary and metastatic ovarian tumors, as well as ovarian tumors arising simultaneously on both ovaries,” senior author Alessandro Santin, M.D., leader of the Disease Aligned Research Team of the Gynecologic Oncology Program at Yale Cancer Center, said in a press release.

“These genetic results obtained in matched tumor samples from the same patient provide support to the view that spreading to the abdominal cavity takes place very early during the natural history of ovarian cancer.”

Conference Coverage

Researchers define the genetic characteristics of ovarian tumors-- information that could lead to new opportunities for personalized therapy and may explain why screening programs for the disease haven’t been successful.

Identifying Genetic Similarities in Tumors May Shed Light on Spread of Ovarian Cancer

sister Jan received a uterine and ovarian cancer diagnosis in 2008, Jan was not advised to undergo genetic testing. However, after attending an ovarian cancer conference, she felt compelled to request genetic testing and subsequently learned she carried a BRCA1 gene mutation.

Amy Byer Shainman’s gynecologist referred her to a genetic counselor after Jan’s test came back positive. She opted to undergo genetic testing, which showed that she carried the same BRCA1 gene mutation as her sister. Just shy of her 41st birthday, with a husband and two small children to think about — her daughter then 8 and her son, 5 &mdash; Shainman had an oophorectomy and hysterectomy in March 2010, followed by a nipple-and skin-sparing bilateral mastectomy with reconstruction in September. But no one prepared her for what life would be like after these preven&shy;tive surgeries.

®, Shainman shares what it was like in the days after, how she is doing today and how she plans to talk about genetic cancer risk with her children.

… I can’t even imagine what learning my genetic status would have been like in my early 20s; it was so overwhelming to learn that I was BRCA1 positive at age 40.”— AMY BYER SHAINMAN

®: How did you learn about your BRCA mutation? 

In December 2009 my OB-GYN recommended I see a genetic counselor. Two weeks later the counselor called, and I knew that I was positive from the tone in her voice. After that, it was my time of processing and researching. What does this mean? I went to a high-risk oncolo&shy;gist and she laid out a map of options for me and my husband. I was eating a lot of chocolate and drinking a lot of wine. I told my husband to “just deal with me” while I was processing.

You chose to have preventive surgeries to lower your cancer risk. What was it like making this decision? 

I was 40 when I was dealing with all of this. I based my decisions on my research and looking at guidelines and also thinking of my parental responsibility. If I had tested negative, I may have tried to have another child. And that was another thing I had to process; it was a sadness. But I had two healthy kids. Looking back, I absolutely made the right decisions for myself.

Can you discuss the recovery and any side effects you experienced? 

The (oophorectomy and hysterectomy) surgery was easier than my mastectomy. It was like night and day. However, the aftereffects of having my ovaries out were more debilitating. There have been and still are menopause issues. There is not a lot of communication about what to do after surgery. Hopefully that’s changing. Should I be on hormones? Should I not? Quality of life issues weren’t discussed. I learned a lot from support groups, either in person or on Facebook. Your body is jolted, especially if your ovaries are removed years before natural menopause.

Immediately after (the oophorectomy and hysterectomy), I felt good. I was rested, my skin was really clear. A week later, the insomnia began. I was dead tired, and my eyes were wide awake. I was miserable. I started on some sleeping pills. I experienced weight gain, and it got to a point where I went back to my OB-GYN and I began using an estradiol gel. I went on Effexor (venlafaxine), and it helped with hot flashes immensely. It made life tolerable.

When you’re going through all of this, and have just had surgeries, the last thing you want to be doing is having intimate relations with your partner. From a mental and physical standpoint, you’re not there. You are physically and emotionally depleted. That coupled with the libido that you lose, it was a tough time. I tried maca root, but that made me go 180. I was like this crazed sexual person. So I went off of it. I tried black cohosh, but a doctor scared me that it could cause liver damage. I also tried testosterone, but I didn’t like how it made me feel.

Right now, I feel the most normal and back to my former self than I have in the past 10 years. But I am a new version of my former self.

I finally started to lose weight after my dermatologist put me on spironolactone when I developed cysts and hives on my head. It can act like a diuretic, and I started to lose weight, which was a fantastic thing for me.

I still have dryness, and I feel like I have aged more rapidly, but the hormone replacement therapy helps with that. I’m on an estradiol patch — the highest recommended dose. I wake up every day and ask myself, 

Have you discussed or do you plan to discuss genetic testing with your children? 

I am very open with them because they see my advocacy work and how involved I am. My daughter is 17, and I’m going to have to have a deeper conversation with her very soon. [Shainman had a brief discussion with her at age 12 after her daughter asked questions about Angelina Jolie]. I want her to start manually checking her breasts by the time she’s 18. (Both kids) know that I have written a book. My daughter grabbed a copy and hid it somewhere in her room. She said, “Mom, I’m reading it.” By age 22-23, she will probably start having to have (MRI) screenings of her breasts. I will make sure she sees a genetic counselor prior to any genetic testing.

My son is 14 now. When he is an adult, I will probably have a deeper conversa&shy;tion with him before he goes to college about his body and genetics. He needs to be familiar with examining his breasts (because there is male breast cancer risk). PSA recommendations are around age 40.

With kids, you have to think about the emotional component of it. Are they mature enough that they are ready to deal with a conversation? What level of conversation? Regarding actual genetic testing, I can’t even imagine what learning my genetic status would have been like in my early 20s; it was so overwhelming to learn that I was BRCA1 positive at age 40. I already had my husband and two children. It’s this next generation who is going to be undergoing genetic testing earlier. Is it anxiety producing? Is it benefi&shy;cial? When my kids are adults, they will have to weigh many factors for themselves. Will having knowledge of genetic testing results provide real meaning for them and their health? I will keep communication open and be there to guide them in what will ultimately be their decisions to make.

Is there anything else that you would like to add? 

Women tend to be very hard on themselves. There is all of this pressure with beauty. Try not to be so hard on yourself. You have just been through a lot. You are yourself, but your body is a new body. Experience new things. Try to do things that are for yourself. If you’re feeling stressed, take a day. It’s important to take time for yourself and try to feel good when you can.

AMY BYER SHAINMAN, also known as the BRCA Responder, is a patient advocate who provides support and education surrounding BRCA and other hereditary cancer syndromes. Her memoir, “Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew,” is available on Amazon and other online retailers. To learn more about Amy, visit brcaresponder.com. 

Ten years later, a woman with a BRCA1 mutation finally feels more like herself.

Reflections on Life After Two Prophylactic Surgeries

Joanne Wilson was feeling less like herself — she was always tired, sometimes struggling just to get up in the morning, and packing on pounds. But she kept coming up with excuses to explain the problem: Then age 56, Wilson chalked up the weight gain to menopause. As for the fatigue &mdash; the retired legal secretary hadn’t had a break in quite a while. First she saw her mother-in-law through surgery, then she and her husband sold their house, and then she helped her sister-in-law when she had surgery. “I was exhausted,” Wilson says.

But then came a symptom Wilson couldn’t explain. “I realized I couldn’t eat that much — like my stomach had shrunk,” the 57-year-old recalls. “I could only eat about a half a cup of food at a time before I felt like I had just finished Thanksgiving dinner. But yet, I was still putting on weight.” She was constipated, too.

Out of town when the symptoms really started to bother her, Wilson went to an urgent care clinic. She was told she had Helicobacter pylori, a bacterial infection of the intestines, and to follow up with her primary care doctor. The next day, back home in Summerville, South Carolina, she visited her doctor of 27 years.

JOANNE WILSON began feeling full all the time and gaining weight, which can be signs of primary peritoneal cancer.

“From the moment he saw me, he said, he was concerned because there was something odd about my girth,” Wilson says. She was bloated throughout her torso, from the rib cage down. The doctor sent her for a computerized tomography (CT) scan right then. “The next morning, about 9:15, I got the call,” Wilson says. “He said, ‘I think you have cancer.’”

The CT scan revealed tumors on her liver and bladder, an enlarged right ovary and a thickened omentum — an apron of fat that hangs from the stomach and liver and wraps around the intestines. It’s part of the peritoneum, the lining of the abdomen that envelops most of the abdominal organs like plastic wrap. Caking, or thickening, of the omentum is a sign of a gynecologic cancer. Wilson’s longtime doctor referred her to a gynecologic oncologist.

Understand how the rare relative of ovarian cancer is diagnosed and treated.

Women's Cancers | CURE