Yahoo Lifestyle ‘I Was Diagnosed With Ovarian Cancer at 54—These Are the First Signs I Wish I’d Paid Attention To'
One week before her 54th birthday, Heidi Paolone received news people don't wish on their worst enemy: She had ovarian cancer.
Paolone isn't alone—and, as you'll learn, community has been vital to her journey. The American Cancer Society (ACS) estimates that about 1 in 87 women will receive the same news in their lifetime, and about 20,000 people will be diagnosed with ovarian cancer in 2024.
Age is one risk factor, and the ACS notes that the disease is rare in people younger than 40. Paolone didn't fit that bill, but she was younger than the median age of diagnosis, which is 63. And sadly, ovarian cancer is one of the leading causes of cancer deaths among women.
All of those numbers probably sound scary, and a touch impersonal. The truth is, there are people—and families—behind those numbers. Paolone was more than a statistic, which is why she's so determined to speak out about her experience.
"This cancer is usually found at a late stage during surgical assessment for a different issue," Paolone tells Parade. "It is devastating to find cancer at later stages when it could have been found earlier and benefited from early intervention. I want to be clear that this is not the fault of medical doctors. There simply has to be more screening tools and patient education."
Below, Paolone shares the unexpected ovarian cancer symptoms she had, what her treatment plan looked like, and what her life is like today.
Related: 'I Almost Died of a Heart Attack at 48—This Is the First Symptom I Wish I'd Paid Attention To'
The Ovarian Cancer Symptoms One Woman Wishes She Had Paid Attention To
Paolone noticed persistent nausea and heartburn nine months before learning she had ovarian cancer. "I had never experienced [that] and nothing relieved either symptom," Paolone explains. "These are not classic ovarian cancer signs, but my intuition was telling me something was off. These were red flags looking back."
Hindsight is 20/20, and flagging ovarian cancer symptoms can be challenging (and not always the best route for diagnosis). "One of the difficulties in diagnosing ovarian cancer is that symptoms are often not noticeable until the cancer has spread," says Dr. Joshua G. Cohen, MD, a gynecologic oncologist at City of Hope Orange County in California, who is part of Paolone's care team.
According to Cohen, some common symptoms include:
Abdominal pain or discomfort
Bloating
Feeling full quickly when eating
Decreased appetite
Constipation or diarrhea
Frequent urge to urinate
Unusual extreme fatigue
Pain during sexual activity
Dr. Cohen explains that doctors use a pelvic exam followed by imaging tests, such as CT scans or MRIs, to diagnose this cancer.
In addition to not having the above symptoms, Paolone didn't have risk factors for ovarian cancer. "I did suffer from endometriosis and infertility in my 20s," Paolone says. "Neither of these conditions has proven to be risk factors for ovarian cancer, yet I read about both in other ovarian cancer patients' stories. I did thorough genetic testing after my diagnosis, and I have no genetic link to ovarian cancer."
Additionally, she lived a healthy lifestyle, keeping tabs on new health studies and "reading healthy cookbooks like they were novels." Her ideas of date and girls' days and nights were hiking, paddleboarding and biking.
"However, a healthy lifestyle does not always promise a cancer or disease-free life," Paolone says. "I did all the right things, and yet I was diagnosed."
Related: The Early Ovarian Cancer Sign Most People Miss, According to OB/GYNs
Learning the News
While Paolone didn't think persistent nausea and heartburn were ovarian cancer symptoms, she didn't ignore them either. She worked with her general healthcare provider, who proactively ran tests.
"Nothing came up abnormal. I had my then-gynecologist get involved and he also ran tests," Paolone shares.
Next, she spoke with her gynecologist, who made a recommendation that initially caught her off-guard: an elective hysterectomy. The reason? It would let him get a sample of Paolone's cervical and uterine tissue. "I thought this was excessive, but my message to all women is to be open to different treatments," she says.
Paolone is not mincing words. Two weeks later, during Thanksgiving of 2022, she underwent surgery that included a complete hysterectomy. She stayed in the hospital for nine days and learned she had an "extremely rare type of cancer," Stage 3C endometrial stromal sarcoma (ESS) of the ovary. It's so rare research suggests ESS only comprises 0.2% of uterine tumors and 15% of uterine cancers. Paolone's had progressed to stage three. And yet, she's thankful.
"I credit my surgeon with saving my life," Paolone says. "If I did not proceed with this surgery, my cancer would not have been discovered when it was."
Treating a Rare Cancer With Customized Care
Paolone was shocked by her ovarian cancer diagnosis at 54. However, she didn't want to ask, "Why me?"—instead, she adapted a mentality of, "What now?"
Paolone got in touch with Dr. Cohen with City of Hope Orange County. "Dr. Joshua Cohen already had treatment suggestions the day I met him," Paolone shares.
What Paolone didn't know at the time was that she and her family were inspiring Dr. Cohen too. "At the very first visit, her husband, mother and two of her children were present for the discussion of treatment options," Dr. Cohen tells Parade. "They asked very insightful questions. She had a positive outlook and wanted to get started as soon as possible with her treatment plan. Her courageous spirit was obvious, and that has continued to ring true throughout her care. She is an inspiration to us all."
The rarity of Paolone's cancer made specialized care critical. She had already undergone imaging to evaluate the location of her disease and underwent surgery to remove visible cancer. After that, Dr. Cohen and Paolone's team thought it was best to avoid chemotherapy, which is so often seen as a default next step.
"I presented her case to our multidisciplinary tumor board after the surgery," he says. "This is important as it allows multiple other cancer specialists and me to review her imaging pathology and agree on a treatment plan in real time. Everyone present agreed that hormonal therapy with an aromatase inhibitor was a better option than standard chemotherapy, given the tumor type. She remains on the aromatase inhibitor."
Life Today: Managing Anxiety With Hope
Almost two years out from her diagnosis, Paolone is currently in remission. In five years, they'll regroup. The waiting game can be challenging. "Fear of reoccurrence is always in my mind, but I live each day without worrying about the things I cannot control," she says. "Even the news of a clear scan always dulls the excitement since there is always an underlying fear that it can come back."
Paolone managed by planning post-appointment lunch dates or other fun activities, but her relationship with Dr. Cohen also helps make these necessary follow-ups more calming. "I still ask him lots of questions, but always leave feeling heard and cared for," Paolone explains. "To me, that is the most important part of treatment."
She feels there's strength in numbers as well, saying, "I also believe that being in a community of women dealing with the same issues is insightful—as long as it is a positive environment."
One of the most important things Paolone does now for her mental health is to not pay too much attention to statistics. "The most important thing I learned was to ignore statistics," Paolone says. "There are so many treatment options being discovered every day. You cannot compare your journey to anyone else."
Now, Paolone works to help others tap into the same internal confidence (without being ashamed to ask for external guidance). "There is no right or wrong way to navigate a cancer diagnosis. It is not supposed to look a certain way," she shares. "It is normal to be overwhelmed. It is best to break things down and realize you do have time to make decisions even though all you will feel is a sense of urgency. It is OK to ask for help. You must be patient with yourself and be open to different ideas."
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Sources
Heidi Paolone, woman who was diagnosed with ovarian cancer
Key Statistics for Ovarian Cancer. American Cancer Society
Ovarian Cancer Risk Factors. American Cancer Society
Dr. Joshua G. Cohen, MD, a gynecologic oncologist at City of Hope Orange County in California
Primary low-grade endometrial stromal sarcoma of the omentum. Gynecologic Oncology Reports
