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Continue LogoutWhen journalist Jessica Toonkel started experiencing a constant itch, doctors told her it was a result of perimenopause. But after a trip to the ED, she learned she had stage 2 Hodgkin's lymphoma. Writing for the Wall Street Journal, Toonkel details her experience and why some conditions get misdiagnosed as menopause.
Toonkel writes that she had battled a constant itch for two years. "The itch crept up my back, across my stomach, and along my arms and legs," she writes. "It flared during my morning runs and followed me to the office. It was particularly acute at night."
Initially, Toonkel writes that she tried everything she could to stop the itch, including two different biologic drugs that required her to see an allergist every few weeks.
She also went on a "wellness kick," cutting out gluten and dairy and forcing herself to drink celery juice every morning. She tried supplements, including one labeled "hormonal detox," as well as a progesterone cream, but nothing worked.
Eventually, Toonkel had to quit her weekly after-work tennis game and stopped attending fitness classes because sweating made the itch worse. She also started missing Friday family movie night because she couldn't stay awake long after weeks without sleep.
When she went to her doctor, Toonkel writes that she was told her itch was a result of perimenopause — the time before a woman's menstrual cycle ends. Dropping estrogen levels can cause thin and dry skin, the doctor told her, and he suggested she put lotion on before bed.
Another doctor Toonkel visited ruled out allergies, also saying her symptoms must be a result of perimenopause, and put Toonkel on a birth control pill. But the itch didn't go away, leading Toonkel to see an "intuitive wellness practitioner" who said she was trained in nutrition, botanical medicine, and homeopathy and promised Toonkel she'd get to the root cause of her itching, which she didn't.
"Women — myself included — too often worry about coming off as hypochondriacs about pain or symptoms, so we just bear it without pressing for answers when our gut tells us the doctors are wrong."
Eventually, Toonkel started experiencing a new symptom — a strange pain while drinking a glass of wine or a cocktail. She visited a gastroenterologist who told her the pain was likely caused by acid reflux resulting from hormonal shifts. Toonkel writes she took Tums whenever she went out for drinks after work but ultimately quit drinking entirely.
Then, last spring, another symptom emerged. Toonkel started having a stabbing pain in her chest during her morning runs and she struggled to breathe deeply. After a couple weeks of pain she believed was the result of a Pilates injury, Toonkel went to see the nurse practitioner at her doctor's office who sent Toonkel to the ED for a CT scan of her chest just to make sure the pain wasn't serious.
"You don't look like you are in distress," the nurse practitioner told Toonkel. "But let's make sure."
Ultimately, the CT scan revealed a 10-centimeter mass in Toonkel's right lung and fluid building up inside her lungs. Hours later, she was sent by ambulance to NYU Langone Hospital where doctors drained a liter of fluid from her lungs.
Over the next few days, Toonkel attended back-to-back appointments for procedures and tests, including a breathing test, a PET scan, and a lung biopsy. The pulmonologist Toonkel saw recommended she make an appointment with NYU's oncologist specializing in lung cancer.
Eventually, Toonkel received a diagnosis of Stage 2 Hodgkin's lymphoma, a curable form of blood cancer, to which she said she was "thrilled."
Toonkel completed six months of chemotherapy in September 2025 and is now in remission. Her symptoms went away after two infusions.
After she was diagnosed with lymphoma, Toonkel asked ChatGPT about the disease and found the first two symptoms listed were severe itching and pain when drinking alcohol — something that John Leonard, director of the Center for Blood Cancers at NYU Grossman School of Medicine, later confirmed, though he noted the most common symptom is enlarged lymph nodes.
According to Kelsey Martin, clinical director for the division of classical hematology at the Yale Cancer Center, blood cancers like Hodgkin's lymphoma can sometimes get overlooked because symptoms like night sweats are also a symptom of menopause or perimenopause.
More patients are discussing menopause and perimenopause, which Martin said she believes is positive. "However, I do think women's symptoms can easily get dismissed if doctors don't do their due diligence," she said. "It's important that there is this recognition of the implications of hormones but we are reaching for these simple labels to explain these complicated things."
Blood cancers aren't the only thing that can be missed or misdiagnosed by doctors. According to Anna Barbieri, an obstetrician gynecologist and certified menopause practitioner, brain fog, another menopause symptom, can also be a sign of early dementia, though rare. Barbieri added that one of her patients who had frequent urination and had been treated for urinary tract infections later found that she had ovarian cancer, which can cause similar symptoms.
However, Barbieri warned that doesn't mean every time a woman is peeing more frequently that she should think she has ovarian cancer. It's instead about having "a more thoughtful medical approach that questions the most common or easiest diagnosis when symptoms are persistent."
"I think the takeaway is if you don't get a satisfactory answer and it is something that has lasted for a long time, keep pushing," Leonard said.
"Women — myself included — too often worry about coming off as hypochondriacs about pain or symptoms, so we just bear it without pressing for answers when our gut tells us the doctors are wrong," Toonkel writes. "I had so many blood tests and procedures but I never pushed for a CT scan. If I had, we could have caught this sooner."
According to Caroline Fierro, a gynecologist specializing in functional and hormonal health, "If you aren't feeling well, you need to continue to look for a doctor that will listen to you."
(Toonkel, Wall Street Journal, 2/13)
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