How 10 Ovarian Cancer Survivors Got Diagnosed
No one wants to think that they might have cancer some day. And it’s not healthy to obsess about any one-off symptom you have (we’ve all felt bloated after a holiday meal or cocktail-filled brunch) and assume that it’s going to turn into cancer. This is likely not the case in most situations. However, ovarian cancer can be different in that it has a reputation for being difficult to catch or to screen for, especially in its earlier stages.
Despite some common misconceptions, your pap smear at the gynecologist does not test for ovarian or uterine cancers, and only tests for signs of the development of cervical cancer, explains Irina Tunnage, a gynecologic oncologist at MedStar Health. There is no formal test for ovarian cancer, so it’s important to pay attention to your own body in case you notice changes, which could include abdominal pain, unintended weight loss, feeling full early in a meal, changes to bowel or urinary habits, or increasing abdominal girth, and bring those forward to your healthcare provider if they’re consistent. It can be challenging, because you could have IBS and have bloating or bowel changes, or a UTI and have changes in urinary habits for a period of time. “Ovarian cancer symptoms are incredibly nonspecific, and the majority of women who experience these symptoms do not have ovarian cancer — meaning, other systems of the body are more likely to be responsible for these symptoms,” Tunnage says.
It’s better to be proactive about small symptoms you might experience that could be associated with ovarian cancer, rather than explaining them away in hopes that you’ll be fine and then miss a major diagnosis that could have been caught earlier. Shieva Ghofrany, an OB-GYN and ovarian cancer survivor herself, recommends being “proactive not paranoid” when it comes to ovarian cancer, and “not assuming every little ache or pain must be something dangerous.” Patients should have a “low threshold” to think of potential signs of ovarian cancer and a “high index of suspicion,” according to Dr. Ghofrany. So if you have bloating, pain, or pressure in the pelvic area lasting beyond two weeks, you should definitely see your gynecologist, she advises.
That said, it’s also on medical professionals to take patients’ pain and questions seriously in order to detect possible ovarian cancer at an earlier stage. “Most importantly, we have to listen to women with these symptoms, remembering that women know their bodies best and if they are saying something is abnormal, it is our job to listen,” Tunnage says. Below, we spoke to ovarian cancer survivors to find out more about the early signs they spotted and how they led to a diagnosis.
Changes in endometriosis pain
“In my particular case I had had a history of endometriosis and my pain was very similar in that it was very cyclic with each. But then it changed after a few months and persisted outside of my period, which was very much a hallmark that I needed to evaluate it. Because I was a gynecologist, I knew that it was ‘likely just endometriosis,’ but another thing I reiterate to my patients is that anytime we have a complaint, we should calmly approach it as, ‘it’s likely nothing dangerous but let’s check it out.’ In my case, that meant getting a pelvic ultrasound which showed that I did have a collection of endometriosis in my ovary (called an endometrioma) which led me to an MRI that noted features of the endometrioma that looked atypical. Had I just continued to say to myself ‘this is just endometriosis,’ then I may have delayed getting evaluated and presented at stage 3 or 4 (rather than stage 2) where the treatment is far more aggressive because of the likelihood of recurrence and the survival rate is lower.” —Dr. Shieva Ghofrany, diagnosed at age 46
Dull lower back pain
“I experienced mild bloating, dull lower back pain, and fatigue. I didn’t do anything in response to these symptoms because they were so mild (and this was in early-to-mid-January so I assumed that I just wore myself out over the holidays). I went to my regularly-scheduled annual gynecology check up in mid-to-late January and my gynecologist noticed what she thought were fibroid tumors and sent me for an ultrasound. I was diagnosed with ovarian cancer, stage 2A, on January 31, 2017.” —Sachia Powell, co-founder of the Powell-Drescher Ovarian Cancer Research Foundation, diagnosed at age 50
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Heavy periods
“I had bloating and pain, but the unusually heavy periods is what really made me go to the doctor. I thought I had fibroids. I also had some weight gain and anemia, but I thought all of these symptoms were normal for women. I had no family history when I was diagnosed with stage 3B ovarian cancer.”
—Shianne Lee, diagnosed at age 44
Painful intercourse
“I had bloating so extreme that I would waddle when I walked. I poked fun at myself and my family thought it was funny too. The rest of my body was a healthy BMI, but I just appeared pregnant and would get asked about it a lot. I tried to lose weight, but I couldn’t get my stomach to shrink. There was also pressure on my bladder when it was even a little bit full. I had to go to the restroom in the middle of the nights and it was so hard to walk. In the mornings the pressure was so painful that I would rather lay in bed than walk to the bathroom. I assumed this was a normal thing from aging, being a woman, or giving birth.
There were some symptoms I explained away, like back pain (I figured it was from my diastasis recti from my twin pregnancy), and pain during intercourse (I always assumed it was because my partner wasn’t up for a lot of foreplay). But then it got to the point where I had sharp shooting pain on my right side, and it hurt so much that I almost called 911. I figured I could tough it out because I had to get the kids to school, but I was barely able to walk, let alone drive. This is the symptom that prompted me to call the gynecologist. When I told them my symptoms, they had an appointment for me the next day.
This gynecologist did a regular well-woman check for me and said my uterus was the size of a six-month pregnancy. And he suspected cancer, so he ordered an ultrasound. Within a week, I had further information that pointed towards cancer, then my CA 125 results (a metric that can indicate ovarian cancer) returned high. The PET scan confirmed it. They called with results while I was watching my three kids in swim lessons. I was referred to a gynecological oncologist who didn’t have any interest in seeing my scans. Because I wasn’t in pain at that moment, in addition to my ‘young age,’ he said it was probably just a cyst and he would remove that ovary. I woke up from surgery to a surprise — a complete hysterectomy — and 36 hours later, a diagnosis of low-grade ovarian cancer, stage 3B.”
—Bonnie, diagnosed at age 38
Menopause Symptoms
“I thought that I was going into early menopause. I had bloating, felt as if my middle was expanding and had heavier monthly bleeding. I saw my primary care physician for my annual physical, she did a typical physical exam, and didn’t notice anything concerning. She also said that she could do some bloodwork and send me for a vaginal ultrasound. I chose that route and they discovered that my CA125 was elevated and that my ovaries were the size of grapefruits. She sent me to see my ob-gyn for a hysterectomy. Fortunately a childhood friend was an ob-gyn (in another city) and looked at my radiology report. She said I needed to find a gynecologic oncologist because she suspected cancer. Soon after, I was diagnosed with Stage 2C Ovarian Cancer. My doctor’s aggressive approach in surgery and chemotherapy saved my life and I am ‘dancing with N.E.D.’ (No Evidence of Disease) 14 years later.”
—Deborah Binder, diagnosed at age 50
Extreme Fatigue
“I never noticed any major bloating, pain, or pressure from out of the ordinary with my cycles around the time I was diagnosed. The biggest symptom that went unnoticed, to me, was the extreme fatigue. I worked an early morning radio show and figured I was tired from the early hours and going to college. I was sleeping until the afternoon, skipping classes to sleep, which was not normal. But what made me go to the doctors was a bump that suddenly appeared one morning on the right side of my stomach. Doctors thought it was a benign uterine fibroid. Over the next month before surgery to remove what we thought was a fibroid, my tumor grew so much I couldn’t see my feet. And finally, on the day of surgery on Dec. 13, 2013, I woke up from surgery being told I had ovarian cancer and that my tumor was the size of a volleyball. I was 21 years old and was stage 1C, because my tumor ruptured during surgery.
—Kezhal Dashti, co-founder of Dashti Media and board member of The Be The Difference Foundation, diagnosed at age 21
Bloating and irregular periods
“I had bloating and a persistent period-like pain for possibly up to a year before I was diagnosed. My periods stopped and then restarted. I noticed all of this from January to June 2014. I went to the general practitioner and had a number of tests done, all showing nothing of particular interest, but the doctor said I could be perimenopausal. This continued and I returned to the doctor in September, where I had more blood tests, including CA125 and an ultrasound. The ultrasound showed slight thickening of the uterus. The doctor wasn’t going to do anything else, but as I was symptomatic, I pushed for a CT scan. I received the CT Scan Christmas 2014. Again, this showed thickening of the uterus. I then referred myself to a gynecologist. I needed a laparoscopy which was conducted in March 2015. The initial results showed my uterus had fibroids that were potentially causing the pain.
Two weeks later, the path results came back. They had found a two-centimeter tumor in the fallopian tube. I had stage 1 high-grade serous ovarian cancer. I then had a staging and was relieved it hadn’t spread. My oncologist was very forward-thinking proactively did a tumor BRCA test and found that to be positive. Because of the type of tumor, there was a fifty-fifty chance of it returning, so I opted for Chemo which started in May and completed in September of 2015. I am glad to say I am still in remission.
—Rosie Carolan, diagnosed at age 51
Changes in bleeding
“For years I’ve been experiencing heavy periods with painful cramps, bloating, and abdominal pain. I had a number of ultrasound tests, annual gynecological visits, and knew I had fibroids. But multiple gynecologists kept telling me that I was ‘healthy’ and was advised to take a higher dose of over the counter pain medication. My symptoms, that couldn’t be ignored any longer, started on January 1, 2021. I developed a very heavy and prolonged vaginal bleeding of different shades and had persistent pain on one side of the abdomen. I had persistent fatigue, but again, I wrote it off to being on the tennis court 50 hours a week (I am a tennis pro and coach). I also kept feeling a heartburn sensation, even though there wasn’t anything in my diet that would cause it. Since fatigue and heartburn did not seem to me to be related to my other gynecological issues, I would have never guessed that they can indeed be symptoms of ovarian cancer.
As my pain persisted, I ended up in ER and was told again ‘You don’t have cancer. These are most likely chocolate cysts.’ When I couldn’t wait any longer, I got on the schedule for laparoscopic surgery. But, again, there was zero sense of urgency from my gynecologist, and no discussion to rule out ovarian cancer.
I got diagnosed with synchronous uterine and ovarian cancers in June of 2021 at age 50. Both were originally diagnosed at stage 1 during laparoscopic surgery. After my debulking surgery (a second surgery that lasted six hours), my ovarian cancer diagnosis changed to stage 3A. I achieved a brief remission after having gone through chemotherapy, and am currently undergoing immunotherapy and targeted therapy for ovarian cancer recurrence. —Anna Hedden, diagnosed at age 50
Severe lower abdominal pain
“I first was diagnosed with stage 1C in July 2014 and had my first recurrence in August 2020. In 2014, my symptoms were abnormal pain in my lower abdomen, a bit of bloating, and a heavy period that lasted nearly two months. I had never experienced ‘normal’ periods and I was used to going up to 6 months between cycles and then experiencing very heavy bleeding and intense cramps. Because of this, I wrote off all my symptoms as ‘normal for me.’ I didn’t have health insurance so I saved up to see a gynecologist. She urged me to get an ultrasound, which I absolutely could not afford. She put me on birth control to mitigate my period and it worked, but when I got to the sugar pills and my period started, it was the most excruciating pain I had ever experienced. I called her office and she told me to go to the emergency room. At the ER, they performed an ultrasound, found a mass, called my gynecologist, and by that same evening I had a referral to see a gynecological oncologist the very next morning. It happened very fast.
In 2020, I had little to no symptoms. I went to my doctor for a yeast infection. He noted that my tumor markers hadn’t been checked in a few years. That test came back a week later over 10 times higher than normal. I was seeing a new oncologist, and two weeks after my appointment, I was in surgery. The cancer returned on my right ovary this time, as well as on my uterus and my diaphragm. I had a full hysterectomy, right oophorectomy and part of my diaphragm was resected.” —Jennifer Akin, diagnosed at age 30
UTI symptoms
“I had no symptoms that caused me any concern for a long time. I just thought I was getting older, maybe hitting menopause, and getting more belly fat. I also started getting minor bladder pain and cramping whenever I would pee. I thought it was maybe a bladder infection or UTI, and because I was scheduled to go on a trip, I thought I should go to the family doctor to make sure I didn’t have a bladder infection on the trip. They sampled my urine and felt my belly, and wanted me to go for a CT scan. The next day my family doctor called and said there was a mass on my ovary and it looked like it was spreading. I was diagnosed at stage 3C and had a tumor the size of my fist on my ovary that had spread to my lymph nodes.
A year ago I was on my way to dying with traditional treatment. After having surgery and chemo, I was very sick in the hospital. Right before I got really sick, my doctor recommended this immunotherapy trial at MD Anderson Cancer Center as a last-ditch effort. I was at first too sick to be in the trial, but then they got me well enough to get these immunotherapy infusions, and it was like a miracle. After three infusions, I all of a sudden started feeling better. When I continued the treatment, the team at MD Anderson did a scan, and there was 27 percent reduction in my tumors.” —Karoline Strauss, diagnosed at age 57
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