I hope within the next year or so we can figure out how to diagnose this earlier than stage 3 - Elly Mayday
Dubbed “the silent killer,” ovarian cancer gets its nasty nickname for being able to go undetected in women who experience few, if any, unusual symptoms. Who hasn’t felt bloated and fatigued while also coping with an achy back and a bladder that’s about to burst? That’s practically the norm for any woman who's PMSing or pregnant.
While awareness around other illnesses continues to grow, ovarian cancer still flies in stealth mode with its surprise attacks. Suddenly faced with a scary diagnosis, inflicted women are not only forced to fight for their lives but also seek out information about a condition of which they know very little. Although no two patient’s situations are the same, soaking in some hard-earned wisdom from survivors can make it a bit easier to mentally prepare for what’s ahead. Here’s what six fearless woman feel is important to share with others battling ovarian cancer.
It’s not always an “older woman” thing
Maggie, now 35, was just 20 years old and home from college for the summer when she was diagnosed with ovarian cancer. “Initially, I was misdiagnosed,” Maggie says. “They told me I was pregnant. Imagine my surprise, since I was a virgin.”
After additional testing, her doctors discovered she had stage 3C ovarian cancer; she immediately had surgery to remove an eggplant-sized tumor of the ovary, left fallopian tube, and lymph nodes in her abdomen.
Maggie was then put through medically-induced menopause—and doctors warned her it would be next to impossible to get pregnant in the future. She defied the odds, though: “My husband and I are the proud parents of two,” she shares. “But now that I’m a mom, I don’t know how my mom stayed so strong when I was diagnosed.”
Ultrasounds might not uncover it
Speaking of having babies: After fighting through a third trimester with severe back pain—because it turned out there was an 8-pound tumor pressing against her back—Kristy (then 32, now 41) finally gave birth to her third child.
But the post-partum pain in her stomach was unbearable, and she knew something was wrong. “The pain during my recovery was a 12 out of 10,” Kristy says. “My stomach was different than the after my other births, too. It was harder. But the doctors and nurses assured me I was fine and sent me home.”
A week later and still in pain, Kristy went to see her doctor; that's when they finally discovered the massive ovarian cancer tumor. “You have to be your own advocate,” she says. “I had ultrasounds when I was pregnant, nothing wrong was ever detected, and I gave birth to a healthy baby boy. But I knew something wasn’t right. If you have that feeling, don’t let a nurse or doctor tell you differently. Push them for answers.”
If you’re on the wrong side of the statistics, you can’t miss a beat
A sales executive in Chicago, now-61-year-old Naomi had both the BRCA gene and an older sister with breast cancer. So in 2013, she went in for an oophorectomy (removal of the ovaries) to decrease her chances of getting breast cancer.
But she had missed her most recent CA-125 blood test (which can detect potential cancer activity). “I woke up from the surgery to find out I had stage 3 ovarian cancer,” Naomi says. “The doctor didn’t wait, though. He got out as much as possible while I was under, and I believe he saved my life. The CA-125 was more reliable than I gave it credit for, though. It was a matter of less than two years that I went from having a healthy test to having stage 3 ovarian cancer.”
Naomi relapsed last year and says she wishes she had gone in for the oophorectomy years sooner than she did—but that her amazing doctor, support from family and friends, and a positive outlook all helped her. “If you’re statistically-inclined to get cancer, don’t wait to do whatever it is you might have to do,” she says. “Know that you’re okay—and you can do it.”
Setting goals can help get you strong
Picture a scar from your breastbone to your vagina. That’s what Terri, a 55-year-old middle school teacher, acquired when she was diagnosed in late 2017 with stage 4 ovarian cancer.
“They opened me up and took out everything,” Terri says. “All my female organs, the peritoneum (stomach lining), and part of my colon because the cancer had spread so far. The doctor filled a small bucket of tissue from my body.”
Unfortunately for Terri, a five-day hospital stay turned into six weeks when complications arose, which also delayed the start of her chemotherapy treatment. But she was determined to be back to work when school started in August. “I have to sit a lot now, which is not my style, but I had this goal that was about getting back to normalcy, and I think it helped,” she says. Terri’s latest goal? To get back into yoga and exercising.
You'll learn who your real friends are
When Ann, 63, was diagnosed with ovarian cancer at age 49, a survivor told her that cancer was like a gift in that you’d learn who your real friends are. “I thought it was a weird thing to say, but she was 100 percent correct,” Ann says. “Looking back on my treatment, I have often thought about how it was harder on my family and friends than it was on me. Chemotherapy is awful, and I had to endure it, but they had to watch. It was their support that enabled me to get through it.”
“I’ve made a lot of friends while sitting in chemo,” agrees Linda, 66, who’s been fighting ovarian cancer for five years now. “I’ve lost some of those friends, but you have to remember life is still worth living. I got to walk my daughter down the aisle and see my grand-babies. Always hold on to hope.”
Source: Christie Griffin, What No One Tells You About Being Diagnosed With Ovarian Cancer, Prevention, November 8, 2018.
The USPSTF recommends against screening for ovarian cancer in asymptomatic women. This recommendation applies to asymptomatic women who are not known to have a high-risk hereditary cancer syndrome.
The search continues for new biomarkers, better outcomes and, yes, cures for this deadly disease. HomeHutch News Squelching ovarian cancer: the not-so-silent killer. Despite its long-standing nickname, ovarian cancer isn’t really a silent killer. There are symptoms; it’s just that they whisper or are commonly mistaken for something else, like aging or irritable bowel syndrome.
After years of unexplained pain, Amanda Kabbabe discovered she had a melon-size tumor.
Cancer is never an easy foe, but some types are more stubborn than others. Ovarian cancer is one of the hardest to treat.
But there are signs of progress.
A preliminary clinical trial finds that the personalized therapy improves survival rates and has no severe side-effects.
“I hope within the next year or so we can figure out how to diagnose this earlier than stage 3.”
Ovarian cancer begins with lesions in the fallopian tubes, which if treated early could prevent the cancer from spreading, researchers say.
In fact, there's no reliable screening test, period.
My mom’s first symptoms were back pain and heartburn. Her doctor told her to take some antacids and that was that. It wasn’t until a bit later that she started having to go to the restroom more frequently. Then abdominal pain woke her in the middle of the night, three nights in a row. While her first symptoms didn’t seem to signal anything serious, it was the sleep-disrupting abdominal pain that ultimately made her take notice and visit the doctor.
A new study of women with ovarian cancer shows that ignorance about the condition is common among patients in all 44 countries surveyed. And that ignorance has a cost. The disease is more treatable, even potentially curable, in its early stages.
The women's answers also suggested their doctors were ignorant. Many of them reported that diagnosis took a long time and that they weren't referred to proper specialists.
Researchers have found an innovative way to use sound and light, or photoacoustic, imaging to diagnose ovarian tumors. The method may lead to a promising new diagnostic imaging technique to improve current standard of care for patients with ovarian cancer.
Hearing that you or a loved one has a diagnosis of ovarian cancer is terrifying. Once the initial shock wears off, you’ll likely have a lot of questions and do some research on your own to answer them. One thing you’ll probably discover: There are actually three overarching types of ovarian cancer. While every person’s experience with cancer will vary, understanding the similarities and differences between these three types might be helpful.
Heart attack and ovarian cancer no longer need to be such aggressive killers of women. You know yourself better than anyone else. When your body produces warning symptoms, listen to it!
A quest to detect ovarian cancer for other women led Sarna, 32, to found a company, nVision Medical of San Bruno, Calif., to raise $17 million in venture capital, and to gain approval from the Food and Drug Administration to develop a specialized device for detecting ovarian cancer. (The device is not yet for sale.) She says she wants to give them a better option than existing diagnostics, which she scoffs are no better than flipping a coin.
Cancer researchers have developed a new treatment strategy that holds promise for significantly extending the lives of women diagnosed with advanced ovarian cancer, one of the toughest to treat and most lethal malignancies.
The approach doesn’t involve a hot new drug or technology. Instead, it’s based on being smarter about using the longtime mainstay treatments for ovarian cancer: surgery and chemotherapy.
A 2013 analysis led by Harvard University of 8,525 ovarian cancer cases and 9,859 controls concluded that genital talc powder use is associated with a small-to-moderate increase in risk of various sub-types of ovarian cancer. It found that “genital powder use was associated with a similar increased risk of borderline and invasive ovarian cancer overall”. They also noted that, as there are few ovarian cancer risks women can avoid, “avoidance of genital powders may be a possible strategy to reduce ovarian cancer incidence”. This would seem a wise precautionary policy.
The 45-year-old patient, Jane Todd Crawford, had been misdiagnosed as being pregnant with twins. McDowell, who ran a surgical practice in Danville, Kentucky, offered a different diagnosis – a large ovarian tumor. He decided to risk the previously untried surgery and set Christmas Day for the operation.
Ovarian cancer is the only gynecologic cancer without an early detection screen and it is the #1 deadliest woman’s cancer.
Wilder may have kept quiet about his own struggle with Alzheimer’s, but when it came to helping people fight the illness he saw his late wife suffer, he had no problem raising his voice.
Identifying the different mutations could help women decide if and when to undergo preventative surgery.
Most of the decline, the authors write, is attributable to the use of oral contraceptives, which offer long-term protection against ovarian cancer, and to the reduced use of menopausal hormone therapy after it was found to increase rates of cancer and cardiovascular disease.
Treatment of ovarian cancer has improved, too, but not significantly enough to explain these reductions. Most advances in treatment have been limited to germ cell tumors, which account for less than 10 percent of ovarian cancers.
There are five major forms of treatment for ovarian cancer. However, the type of ovarian cancer you have and how advanced it is play a role in which form (or forms) of treatment your doctor may recommend.
For starters, it’s not always an “older woman” thing.
If you (or a loved one) has just been diagnosed with ovarian cancer, you’re probably feeling incredibly overwhelmed right now. While there is no list of universally applicable tips for dealing with an ovarian cancer diagnosis, we asked medical experts and an ovarian cancer survivor to share what they recommend based on their experiences.
Above all else, listen to your body. If you're experiencing constant abdominal pressure and urinating more than usual, see your doctor. And if your doctor brushes you off, get a second opinion. "My No.1 message is that ovarian cancer can strike young women," says Streicher. "Don't panic if you're having bloating and urinary symptoms, but don't ignore it either."
For some women, an ovarian cancer diagnosis comes after a lengthy, frustrating, stressful process, given that many don’t have observable symptoms until the cancer is in a more advanced stage. And if someone does have early symptoms of ovarian cancer, they’re often vague or nonspecific, such as changes in appetite, abdominal bloating, and abdominal/pelvic pain.
From genetic testing to inheritance patterns, there’s a lot that may surprise you.
T.E.A.L.®’s mission is to provide awareness and education about the signs and symptoms of ovarian cancer through community outreach, public awareness campaigns, and T.E.A.L.® workshops and events.
Not on My Watch is a movement to empower women with ovarian cancer who have had a recurrence and responded to chemotherapy to no longer “watch and wait” for their disease to return. Instead, women are encouraged to take an informed and active role in extending the time in response and delay recurrence by talking with their healthcare providers about maintenance therapy.
Ovations for the Cure, Inc. is dedicated to the relentless pursuit of a cure for ovarian cancer in three critical ways. First, we provide critical funding of new and ongoing ovarian cancer research and treatment initiatives. Second, the organization actively increases the awareness of the subtle signs and symptoms of this silent disease. Third, we give hope, education and comfort to those currently battling ovarian cancer through our patient programs.
Target Ovarian Cancer is the UK’s leading ovarian cancer charity. We work to improve early diagnosis, fund life-saving research and provide much-needed support to women with ovarian cancer.
The Teal Diaries is Jacqueline’s first blog, offering readers a deeply personal exploration of her ongoing cancer journey. Her battle with the disease began in late 2011 when she was diagnosed with both uterine and ovarian cancer.
The Honorable Tina Brozman Foundation for Ovarian Cancer Research (Tina’s Wish) is an ovarian cancer non-profit organization dedicated to funding groundbreaking scientific research for the prevention and early detection of ovarian cancer. Know Early. Know Hope.® This is our mission.
The International Newsletter For Those Fighting Ovarian Cancer!
We are an international registry of families with two or more relatives with ovarian cancer. In addition to ovarian cancer research, the Registry offers an 1-800-OVARIAN Hotline, Newsletter, and ovarian cancer informational pamphlets.
Force's mission is to improve the lives of individuals and families affected by hereditary breast and ovarian cancer
The Lynne Cohen Foundation for Ovarian Cancer Research is an organization created in memory of a woman who dedicated her life to the well-being of others. Our mission is to continue her spirit of giving by supporting groundbreaking research to improve the survival rates for women with ovarian cancer.
Since its inception in 1995, the National Ovarian Cancer Coalition (NOCC) has been committed to raising awareness of ovarian cancer in communities across the country and to providing education, support and hope for women with ovarian cancer and their families.
Welcome to Ovacome. We are a UK-wide support network providing information and support for everyone affected by ovarian cancer.
OCC is dedicated to overcoming ovarian cancer. We provide leadership by supporting women living with the disease and their families, raising awareness, and funding research to develop early detection techniques, improved treatment and ultimately a cure.
Ovarian Cancer Research Alliance (OCRA) is the world's largest organization dedicated to fighting ovarian cancer through research, advocacy and support.
The mission of the Marsha Rivkin Center is to save lives and reduce suffering through improved treatment, early detection, and prevention of ovarian cancer.
SHARE Cancer Support is one of the leading ovarian and breast cancer organizations online, offering support for women with breast cancer, metastatic breast cancer and ovarian cancer.
The World Ovarian Cancer Coalition (WOCC) is a not-for-profit organization, established in 2016, working across the globe to reduce the impact ovarian cancer has on the lives of women and their loved ones.
CDC enhances the growing knowledge about ovarian cancer by initiating research projects with partners, colleagues, and national organizations to help identify factors related to early detection of the disease, treatment, and survivorship.
Ovarian cancer usually happens in women over age 50, but it can also affect younger women. Its cause is unknown. Ovarian cancer is hard to detect early.
Information about ovarian cancer treatment, including surgery, chemotherapy, radiation therapy, immunotherapy, and vaccine therapy