The "Cancer That Whispers"
- Kari Neumeyer was 44 years old when she was diagnosed with a low-grade serous ovarian cancer at the the start of the Covid-19 pandemic after her dermatologist found an unusual spot, the size and color of a pencil eraser, and took a biopsy.
- Luckily, after her diagnosis, her surgeon removed the cancer and she began taking a maintenance drug to prevent cancer recurrence, she’s been cancer-free since June 2020. Now she’s hoping her story encourages others to be aware of the secretive symptoms of ovarian cancer.
- Ovarian cancer has been called the “cancer that whispers” because women often don’t experience symptoms until their cancer has already reached its late stages. The symptoms that do appear at first are hard to identify as cancer.
- This subtlety of symptoms makes it essential for women to know the warning signs, and report them to their doctor, say SurvivorNet’s experts.
Neumeyer received her diagnosis via phone call when she was 44 years old on April 1, 2020, after a biopsy of the abnormal spot in her belly button was deemed cancerous. After getting her blood drawn on the day she was diagnosed, her test results revealed she had elevated levels of cancer antigen 125. She then had a CT scan done, which showed three tumors, one which had spread up her umbilicus and into her belly button.
Read MoreNow, 48, Neumeyer often takes to social media to raise ovarian cancer awareness. She also previously wrote an editorial piece for the Huffpost Personal, titled, “My Belly Button Saved My Life.”View this post on Instagram
The Los Angeles native wrote via Huffpost that she never noticed any “unusual” changes to her health in the years leading up to her diagnosis, explaining, “I continued getting Pap smears at the recommended intervals and began getting yearly mammograms at age 41.”
She explained, “It was a dermatologist, not a gynecologist, who diagnosed me. I had a small growth, the size and color of a pencil eraser, in my navel. When the dermatologist removed it, he thought it was something harmless. The biopsy said otherwise.”
View this post on Instagram
“The blood test found elevated levels of cancer antigen 125, a tumor marker that is not an entirely reliable indicator of ovarian cancer. Too many false positives. Also false negatives. My CT scan a week later showed that each ovary had been overtaken by tumors the size of small citrus fruit, and I had a third tumor the size of a larger citrus fruit in the center of my abdomen,” she added.
“The cancer had spread up through my umbilicus and out my navel, which was, as far as I knew at the time, the only symptom I had.”
RELATED: “You Are Your Own Best Advocate” – Recognizing the Subtle Symptoms of Ovarian Cancer
However, looking back further, she did “in hindsight … have excruciating back pain six months” prior to her diagnosis.
“I thought I’d strained my back lifting my 85-pound elderly dog. I learned to lift with my legs and it mostly went away,” Neumeyer wrote. “I can’t imagine a scenario where my efforts to alleviate lower back pain would have led me to ask about ovarian cancer.”
Helping Patients Understand Treatment Options For Ovarian Cancer
- Advances in Ovarian Cancer Treatment
- Chemo or Surgery: Deciding The Order For Ovarian Cancer Treatment
- A Targeted Ovarian Cancer Treatment– The Role of Avastin (Bevacizumab)
- An Extraordinary New Treatment Option for Ovarian Cancer: PARP Inhibitors
- Clinical Trials Give Ovarian Cancer Patients Access to New Treatments
- Coping with Hair Loss During Ovarian Cancer Treatment
- Genetic Testing Can Help Guide Ovarian Cancer Treatment Decisions
- ‘An Important Step Forward’: New Drug Combo Shows Promise For The Treatment of Some Ovarian Cancer
Looking back some more, she continued, “More than a year after my diagnosis, after several months being cancer-free, I recalled intermittent sharp chest pains in recent years. My internet research at the time convinced me it was heartburn, most likely from overindulging in processed carbohydrates and chocolate.
RELATED: 3 Common Myths About Ovarian Cancer Screening
“Waiting it out at home was preferable to sitting in an emergency room for hours, and I never thought to mention it to anyone. It only occurred to me that this could have been a sign of ovarian cancer after 13 months of racking my brain trying to think of symptoms I missed. Had my belly button saved my life?”
View this post on Instagram
Neumeyer pointed out that if her cancer wasn’t discovered it might not have been found “until after it disrupted other essential organs like my liver, kidneys or lungs.”
After her gynecologic oncologist told her “ovarian cancer isn’t curable, but it is treatable,” she began three chemotherapy infusions and learned she had
“a rare subtype called low-grade serous ovarian cancer, which often does not respond to chemotherapy.”
She ultimately had her ovaries, fallopian tubes, uterus, omentum, cervix, and 10 inches of her colon surgically removed in June 2020.
Neumeyer explained further, “She [her doctor] removed all the cancer she could see, and my blood work following surgery showed lowered levels of CA-125 as well as another tumor marker called human epididymis protein 4 (HE4). Follow-up CT scans have shown no evidence of residual disease. A common thing for people to ask at this point is, ‘So you’re good now?’ Yes and no.
“Ovarian cancer is considered a chronic illness. I am likely to have a recurrence eventually. Even with the removal of all those organs, the cancer can come back elsewhere. But I don’t feel any closer to dying than I was a year ago. If it comes back, by the time it comes back, I hope ovarian cancer research will have led to treatment for all future expressions of my cancer.”
Ovarian Cancer Overview
Ovarian cancer has been called the “cancer that whispers,” because women often don’t experience symptoms until their cancer has already reached its late stages.
The symptoms that do appear at first are hard to identify as cancer. This subtlety of symptoms makes it essential for women to know the warning signs, and report them to their doctor, say SurvivorNet’s experts.
The term ovarian cancer refers to a number of different tumors that grow in the ovary. The ovaries produce the sex hormone, estrogen, as well as eggs. Every woman has two ovaries, one on either side of her uterus. The fallopian tube picks up the egg from the ovary and carries it to the uterus for fertilization.
Many ovarian cancers actually begin in the fallopian tubes. A few cancerous cells first grow on the fallopian tubes and then, as the fallopian tubes brush over the ovary, these cells stick to the ovaries and eventually grow to form a tumor.
Helping Patients Understand Treatment Options For Ovarian Cancer
- Advances in Ovarian Cancer Treatment
- Chemo or Surgery: Deciding The Order For Ovarian Cancer Treatment
- A Targeted Ovarian Cancer Treatment– The Role of Avastin (Bevacizumab)
- An Extraordinary New Treatment Option for Ovarian Cancer: PARP Inhibitors
- Clinical Trials Give Ovarian Cancer Patients Access to New Treatments
- Coping with Hair Loss During Ovarian Cancer Treatment
- Genetic Testing Can Help Guide Ovarian Cancer Treatment Decisions
- ‘An Important Step Forward’: New Drug Combo Shows Promise For The Treatment of Some Ovarian Cancer
There isn’t just one ovarian cancer; there are many different types that occur at different stages of life. In fact, researchers have identified over 30 types, but these three are the most common:
- Epithelial. About 90% of ovarian cancers are epithelial, which means the cancer cells are located on the outer layer of the ovary. Most epithelial tumors are not cancerous, but when they are cancerous, they can spread before they’re detected.
- Stromal. This rare type of tumor forms in the connective tissue that holds the ovary together and produces estrogen and progesterone.
- Germ cell. These tumors, which develop in the cells that produce the eggs, are more likely to affect a single ovary, rather than both ovaries. When a teen or young woman is diagnosed with ovarian cancer, it’s usually the germ cell type. The good news is that most women with these types of ovarian cancers can be cured.
The Importance of a Specialist for Ovarian Cancer
According to the medical oncologists SurvivorNet consulted, the symptoms of ovarian cancer can include:
- A feeling of bloating or fullness
- Pain in the pelvis or abdomen
- Nausea
- Vomiting
- Changes in bowel habits
- Bleeding from the vagina (especially after menopause)
- Unusual discharge from the vagina
- Pain or pressure in the pelvis
- Belly or back pain
- Feeling full too quickly, or having difficulty eating
- A change in urinary or bowel habits, such as a more frequent or urgent need to urinate and/or constipation
- Extreme fatigue
- Pain during sex
“We don’t have a good screening method, but if you have symptoms, it’s very important that you go to your physician because there might be an opportunity that we can detect it when it’s still early stage,” Dr. Jose Alejandro Rauh-Hain, a gynecologic oncologist at MD Anderson Cancer Center, previously told SurvivorNet.
“It’s very important that patients are not afraid to ask questions to their physicians. Because the sooner we can diagnose the cancer, the better that prognosis.”
RELAYED: Ovarian Cancer: What Are The Symptoms And Warning Signs?
The ovaries produce the sex hormone, estrogen, as well as eggs. Every woman has two ovaries, one on either side of her uterus. The fallopian tube picks up the egg from the ovary and carries it to the uterus for fertilization.
Many ovarian cancers begin in the fallopian tubes. A few cancerous cells first grow on the fallopian tubes and then, as the fallopian tubes brush over the ovary, these cells stick to the ovaries and eventually grow to form a tumor.
Genetic Testing Can Offer Valuable Information About Ovarian Cancer Risk
Dr. Beth Karlan, Gynecologic Oncologist at UCLA Medical Center explained to SurvivorNet in an earlier interview, “There’s different kinds of ovarian cancer that affect women in different decades of life.
“The most common type of ovarian cancer, however, typically occurs around the time of the menopause, in the fifth decade.”
No routine screening tests are recommended for women who are at average or low risk for ovarian cancer because symptoms are hard to distinguish from everyday ailments such as an upset stomach.
However, women at higher risk of ovarian which include women with a family history of breast or ovarian cancer should consider screening.
Screening is available for women with:
- A family history of ovarian cancer
- An inherited genetic condition like Lynch syndrome
- A mutation in a gene called BRCA1 or BRCA2
- A mutation in other genes associated with hereditary ovarian cancer
- Recurring symptoms of ovarian cancer
WATCH: The Symptoms of Ovarian Cancer Are Very Vague But There Are Warning Signs To Look Out For
How Is Ovarian Cancer Graded and Staged?
Ovarian cancer can be divided into three grades of aggressiveness. The grade is not determined by the size or stage of the tumor, but rather by the behavior of the cells in the tumor.
- Grade 1 cells are the least aggressive cancer because they look most like normal ovarian tissue and are well-differentiated. Grade one ovarian cancer is less likely to spread.
- Grade 2 cells are mildly aggressive.
- Grade 3 cells are the most aggressive form of ovarian cancer and are poorly differentiated. They have a large nucleus or cell center. They divide very quickly and no longer look like normal, healthy cells. This type of cancer is most likely to spread.
Ovarian cancer can also be classified into four different stages, regardless of grade:
- Stage 1: The cancer is found only in one or both ovaries.
- Stage 2: The cancer has spread to other areas of the pelvis.
- Stage 3: The cancer has spread to the abdomen and other body parts in the abdominal region.
- Stage 4: The cancer spreads to regions beyond the abdomen.
WATCH: Ovarian Cancer Warning Signs Can Be Subtle
What Are the Risk Factors for Ovarian Cancer?
A few factors might increase the risk of ovarian cancer. Having these factors doesn’t mean you will get this cancer, only that your risk is slightly higher.
Your risk for ovarian cancer may be increased if you:
- Have gone through menopause. Ovarian cancer is rare in women younger than 40.
- Have a gene mutation. The BRCA1 and BRCA2 genes help cells repair their DNA damage. Having a change, or mutation, in one of these genes increases your risk of getting ovarian cancer. These gene mutations are commonly passed down in families. If one of your close relatives carries a BRCA gene mutation, there’s a 50-50 chance you could be carrying it, too.
- Are overweight or obese. Being very overweight might not only affect your risk of getting ovarian cancer but also your survival if you are diagnosed with this cancer.
- Had your first pregnancy after age 35, or never carried a pregnancy to full-term. Of course, this doesn’t mean that women should have children just to protect themselves.
- Have family members with cancer. Your risk might be higher if you have close family members (such as your mother, sister, aunt, or grandmother) who have had ovarian, breast, or colorectal cancer. Genes that increase the risk for these cancers run in families.
- Used hormone replacement therapy. Women who take estrogen and progesterone after menopause are at slightly higher risk than women who don’t use these hormones.
A few things might lower your risk for ovarian cancer, including:
- Having children. Giving birth, particularly to two or more children if that is your choice to do, can significantly reduce your risk for ovarian cancer.
- Using birth control pills for five or more years. However, hormonal birth control also comes with its risks, which women should consider when choosing to take them.
- Breastfeeding. Breastfeeding for as little as one to three months can reduce the risk of the deadliest type of invasive ovarian cancer.
- Having surgery. Surgery to get your tubes tied, remove both ovaries or remove the uterus (hysterectomy), might lower your risk for ovarian cancer. However, surgery comes with its risks.
How Is Ovarian Cancer Treated?
If doctors can safely remove your ovarian cancer, this is almost always, at least in consideration, as the first treatment step. SurvivorNet has extensive resources on this procedure, called “debulking.”
The Different Kinds of Ovarian Cancer
Ovarian cancer is officially staged and graded through surgery to determine its extent.
“The current treatment that we’re going to give you, the standard treatment, is in existence because thousands of women have participated in studies, Dr. Dana Chase, a gynecologic oncologist at Arizona Oncology, tells SurvivorNet.
With ovarian cancer, the standard of care (whether after surgery or before) is a “very, very effective” chemotherapy. When ovarian cancer patients are diagnosed, according to Dr. Chase, they are usually given chemotherapy, which puts about 80% of patients into remission, at least for some time.
After initial treatment which often involves surgery and chemotherapy, your doctor may recommend a form of maintenance therapy.
WATCH: PARP Inhibitor drug for ovarian cancer treatment.
“We use some maintenance therapies with chemo and then continue them after chemo, such as Avastin while others we use after chemo, such as Olaparib,” Dr. Chase explains.
A growing number of women diagnosed with epithelial ovarian cancer are eligible for treatment with a class of drugs called PARP inhibitors. PARP inhibitors are options for women as maintenance therapy after the first chemotherapy or platinum-sensitive recurrence or as a treatment for recurrence.
How To Manage A Recurrence Of Ovarian Cancer
Contributing: SurvivorNet Staff
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