Doctors Ignored My Symptoms for Three Years Before I Was Diagnosed with Stage 4 Lymphoma
Jessica DeCristofaro shares her painful journey and urges women to be advocates for their own health.
At the beginning of 2014, I was your average American girl in her 20's with a steady job, living up my life without a worry in the world. I had been blessed with great health and always made working out and eating well a priority. Other than the occasional sniffles here and there, I'd barely been to a doctor's office my entire life. That all changed when I developed a mysterious cough that simply wouldn't go away.
I first saw a doctor when my cough really started to act up. I'd never experienced anything like it before, and being in sales, constantly hacking up a storm was less than ideal. My primary care physician was the first to turn me away, saying it was just allergies. I was given some over the counter allergy meds and sent home.
Months passed, and my cough got progressively worse. I saw one or two more doctors and was told that there was nothing wrong with me, given more allergy medication, and turned away. It got to a point where coughing became second nature to me. Several doctors had told me that I had nothing to worry about, so I learned to ignore my symptom and move on with my life.
Over two years later, though, I started to develop other symptoms as well. I started waking up every night because of night sweats. I lost 20 pounds, without making any changes to my lifestyle. I had routine, severe abdominal pain. It became clear to me that something in my body wasn't right.
On the lookout for answers, I continued to go back to my primary care physician, who directed me toward various different specialists who had their own theories about what could be wrong. One said I had ovarian cysts. A quick ultrasound shut that one down. Others said it was because I worked out too much—that exercising was messing with my metabolism or that I had just pulled a muscle. To be clear, I was very into Pilates at the time and went to classes 6-7 days a week. While I definitely was more active than some people around me, by no means was I overdoing it to the point of becoming physically sick. Still, I took the muscle relaxants, and pain meds doctors prescribed to me and tried to move on. When my pain still didn't away, I went to another doc, who said it was acid reflux and prescribed me with different medication for that. But no matter whose advice I'd listen to, my pain never stopped.
During a three-year span, I saw at least 10 doctors and specialists: general practitioners, ob-gyns, gastroenterologists, and ENT's included. I was only administered one blood test and one ultrasound that entire time. I asked for more tests, but everyone deemed them unnecessary. I was perpetually told that I was too young and too healthy to have something really wrong with me. I'll never forget when I went back to my primary care doctor after spending two years on allergy medication, nearly in tears, still with a persistent cough, begging for help and he just looked at me and said: "I don't know what to tell you. You're fine."
Eventually, my health started impacting my life as a whole. My friends thought I was either a hypochondriac or was desperate to marry a doctor since I was going in for check-ups pretty much on a weekly basis. Even I started to feel like I was crazy. When so many highly educated and certified people tell you there's nothing wrong with you, it's natural to start distrusting yourself. I started thinking, 'Is it all in my head?' 'Am I blowing my symptoms out of proportion?' It wasn't until I found myself in the ER, fighting for my life that I realized that what my body was telling me was true.
The Breaking Point
The day before I was scheduled to fly out to Vegas for a sales meeting, I woke up feeling like I could barely walk. I was drenched in sweat, my stomach was in excruciating pain, and I was so lethargic that I couldn't even function. Again, I went to an urgent care facility where they did some blood work and took a urine sample. This time, they determined I had kidney stones that would likely pass on their own. I couldn't help but feel like everyone at this clinic wanted me in and out, regardless of how I was feeling. Finally, at a loss, and desperate for answers, I forwarded my test results to my mother, who's a nurse. Within minutes, she called me and told me to get to the closest emergency room ASAP and that she was getting on a plane from New York.
She told me that my white blood cell count was through the roof, meaning my body was under attack and doing everything in its power to fight back. No one at the clinic caught that. Frustrated, I drove myself to the closest hospital, slapped my test results on the reception desk and just asked them to fix me—whether that meant giving me pain meds, antibiotics, whatever. I just wanted to feel better and all I could think about in my delirium was that I had to be on a flight the next day.
When the ER doc on staff looked at my tests, he told me I wasn't going anywhere. I was immediately admitted and sent for testing. Through the X-rays, CAT scans, blood work, and ultrasounds, I kept going in and out. Then, in the middle of the night, I told my nurses that I couldn't breathe. Again, I was told that I was probably anxious and stressed because of everything going on, and my concerns were brushed off.
Forty-five minutes later, I went into respiratory failure. I don't remember anything after that, except for waking up to my mom next to me. She told me that they had to drain a quarter liter of fluid from my lungs and performed some biopsies to send for more testing. At that moment, I truly thought that was my rock bottom. Now, everyone had to take me seriously. But I spent the next 10 days in the ICU getting more and more sick by the day. All I was getting at that point was pain medication and breathing assistance. I was told I had some kind of infection, and that I was going to be fine. Even when oncologists were brought in for a consult, they told me I didn't have cancer and that it had to be something else. While she wouldn't say, I felt my mom knew what was really wrong, but was too afraid to say it.
Finally Getting Answers
Near the end of my stay at this particular hospital, as kind of a Hail Mary, I was sent in for a PET scan. The results confirmed my mother's worst fear: On February 11th, 2016, I was told I had Stage 4 Hodgkin Lymphoma, cancer that develops in the lymphatic system. It had spread to every organ of my body.
A sense of relief and extreme fear flooded over me when I was diagnosed. Finally, after all these years, I knew what was wrong with me. I now knew for a fact that my body had been raising red flags, warning me, for years, that something truly wasn't right. But at the same time, I had cancer, it was everywhere, and I had no idea how I was going to beat it.
The facility I was at didn't have the resources needed to treat me, and I wasn't stable enough to move to another hospital. At this point, I had two options: either risk it and hope I survived the trip to a better hospital or stay there and die. Naturally, I chose the first. By the time I was admitted to the Sylvester Comprehensive Cancer Center, I was utterly broken, both mentally and physically. Most of all, I knew that I could die and had to, once again, put my life in the hands of more doctors that had failed me on more than one occasion. Thankfully, this time, I wasn't disappointed.
From the second I met with my oncologists, I knew I was in good hands. I was admitted on a Friday evening and was put on chemotherapy that night. For those who might not know, that's not standard procedure. Patients usually have to wait for days before starting treatment. But I was so sick that starting treatment ASAP was pivotal. Since my cancer had spread so aggressively, I was forced to go on what doctors called salvage chemotherapy, which is basically a curated treatment that's used when all other options have failed or a situation is particularly dire, like mine. In March, after administering two rounds of that chemo in the ICU, my body began going into partial remission—less than a month after being diagnosed. In April, the cancer came back, this time in my chest. Over the next eight months, I underwent a total of six rounds of chemo and 20 sessions of radiation therapy before finally being declared cancer free—and I have been ever since.
Life After Cancer
Most people would consider me lucky. The fact that I was diagnosed so late in the game and made it out alive is nothing short of a miracle. But I didn't come out of journey unscathed. On top of the physical and emotional turmoil I went through, as a result of such aggressive treatment and the radiation that was absorbed by my ovaries, I won't be able to have children. I didn't have time to even consider freezing my eggs before rushing into treatment, and the chemo and radiation basically ravaged my body.
I can't help but feel that if someone had really listened to me, and not brushed me off, as a young, seemingly healthy woman, they would have been able to put all my symptoms together and catch the cancer way earlier. When my oncologist at Sylvester saw my test results, he was livid—practically yelling—that it took three years to diagnose something that could have so easily been spotted and treated. But while my story is jarring and seems, even to me, like it could be out of a movie, it's not an anomaly.
After connecting with cancer patients through treatment and social media, I learned that so many younger people (women, in particular) are brushed off for months and years by doctors who don't take their symptoms seriously. Looking back, if I could do it all over again, I would have gone to the ER sooner, at a different hospital. When you go to the ER, they have to run certain tests that an urgent care clinic won't. Then maybe, just maybe, I could have started treatment earlier.
Looking ahead, I feel optimistic about my health, but my journey has completely changed the person I am. To share my story and raise awareness for advocating for your own health, I started a blog, wrote a book and even created Chemo Kits for young adults undergoing chemo to help them feel supported and to let them know they're not alone.
At the end of the day, I want people to know that if you think something is wrong with your body, you're probably right. And as unfortunate as it is, we live in a world where you have to be an advocate for your own health. Don't get me wrong, I'm not saying every doctor in the world isn't to be trusted. I wouldn't be where I am today if it weren't for my incredible oncologists at Sylvester. But you know what's best for your health. Don't let anyone else convince you otherwise.
You can find more stories like this about women who have struggled to get concerns taken seriously by doctors on Health.com's Misdiagnosed channel.
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This article originally appeared on Shape.com