What It’s Like to Be Diagnosed with Lymphoma at 22

Part 1: My Story

By Katie DeMasi

Soon after the excitement, and some dread, of graduating college with a nursing degree subsided, I quickly realized that the real world was coming at me full force. Sure, I could name a thousand different medications and their uses and show you how to properly chug a beer, but I had no idea how to budget a grocery list or how much I should be putting away in a retirement account. College taught me things that would help me in my career as a nurse, but it failed to prepare me for everyday life as a real, adult human being. And it certainly did not prepare me for a cancer diagnosis.

It all started with some strep-like symptoms in the beginning of the summer, but when the strep test came back negative and the symptoms cleared, I never really gave it a second thought. Until I noticed a lump at the base of my neck that wouldn’t seem to go away.

After a couple of weeks of doctor appointments, a round of antibiotics, and some scans, I woke up from an anesthesia-induced sleep to the surgeon telling my mom that he was pretty positive the biopsy taken from the lump in my neck showed Hodgkin Lymphoma.

The next day, in a little bit of denial (OK, a lot), I went looking for an apartment in New York City, as I was supposed to start my job that following Monday. I acted as if nothing had happened, like that huge band-aid on my neck wasn’t there. Because I felt fine, because an oncologist had not given me a confirmed diagnosis, because this couldn’t be happening to me. I was only twenty-two.

The day after, we met with the oncologist at our local hospital. She confirmed what the surgeon had told us two days before: It was Hodgkins. My mom’s first question was in regard to fertility. Mine was about work. After discussion, the doctor advised me that because I was in a good position where I hadn’t started my job yet, it would be best to hold off on working. Hospitals are full of sick people, after all, and I wouldn’t be able to get healthy if I was putting myself at risk.

Life changed pretty quickly after that.

I had to inform my job that I had to postpone my start date until I finished chemo, which could be anywhere from three to six months, depending on the stage of the cancer. I had to tell the girl I was going to live with what was going on and that she would need to find another roommate. We had to schedule appointments for scans, a bone marrow biopsy, lung and heart function tests, meetings with the fertility doctor, and a day to get my port placed. We also scheduled a second opinion at Weill Cornell Medicine and NewYork-Presbyterian Hospital, where I met Dr. Lisa Roth and decided that it was the place where I wanted to receive treatment.

Even with the stress of all of this needing to happen before I could even start chemo, my biggest concern was telling my friends.

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One week after my diagnosis, my friends got together and surprised me with tickets to a Mets game.

I don’t like people to worry, and I didn’t want to burden them when I didn’t have a definite answer as to what was happening. On the outside, I was completely healthy. I acted normally, going to a graduation party the weekend before my biopsy and having a sleepover with one of my best friends the night before that life-changing day. No one was suspecting this kind of news. We weren’t supposed to know someone going through this. We were too young. Our lives were just getting started. But after telling my friends, the pit in my stomach from keeping the secret subsided, and their support helped me get through the craziness of the whole experience.

That first month was insane, to say the least. I had some sort of appointment pretty much every day. I don’t think I fully processed everything that was going on until Labor Day Weekend, when I was unable to go anywhere or do anything fun. I was on a tight schedule with my hormone medications, and it just wasn’t possible to bring along my medication (that needed to be refrigerated), needles, alcohol swabs, and gauze pads. So while swimming alone in my pool, bloated beyond belief because of the hormones, and feeling a little emotional (also probably because of the hormones), I began to cry.

I hadn’t even started chemotherapy yet, and this sucky diagnosis was taking over my life. I was angry with my body, with myself, with whoever is up there calling the shots. I was miserable in those first couple of weeks. Bound to appointments and medications. I thought that my life was over.

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I had a lot of visitors during chemo! There was probably only one week where it was just me and my mom there.

But after everything related to my reproductive needs was done, things started to look up. I started to be positive and strong and happy again.

When my friends starting moving into the city and starting their jobs, I did feel a tinge of jealousy at first. I was so happy for them, but a part of me felt like I was being left behind. However, I put everything into perspective. As they moved into their apartments, I re-decorated my room at home. As they crossed off weeks at work, I crossed off weeks of chemo. We were accomplishing things in different ways. I stopped focusing my energy on the things I was missing out on, and instead focused on the things I was doing. I was kicking cancer’s booty, day by day.

Check out the next installment of this two-part series, in which Katie reflects on what she wishes she learned about cancer before she was diagnosed. 

 

Expert Pathologic Review Demonstrates Notable Significance in Lymphoma Care

A new study published by the Journal of Clinical Oncology proposes that pathologic review has direct implications on lymphoma diagnosis and management.

Over a four-year span, the Lymphopath Network, a national hematopathology expert network in France that reviews lymphoma cases prior to therapeutic decision, reviewed over 30,000 samples from patients with newly diagnosed or suspected lymphoma. Researchers found that a change in diagnosis from original referral to expert review occurred in almost 20 percent of patients, and the change was significant enough to potentially impact care in over 17 percent of patients.

Diagnostic discrepancies were greater in patient samples sent with a provisional diagnosis than in those sent with a formal diagnosis, meaning that when referring pathologists were confident about the diagnosis, they were typically correct. Although most discrepancies were due to misclassifications of lymphoma subtypes, some patients were referred with benign conditions that were deemed lymphomas after pathologic review.

The study implies that frequently, in order for patients to receive optimal care, their diagnoses are best determined in collaboration with expert pathologists – especially in the current age of personalized medicine.

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Dr. Peter Martin

“As doctors who take care of people with cancer, so much of what we do is dependent on having a precise diagnosis,” said Peter Martin, Chief of the Lymphoma Program at Weill Cornell Medicine and NewYork-Presbyterian. “My bias is to meet people early on so that I can help direct the diagnostic evaluation, minimize unnecessary testing, and work with our experts in radiology, surgery, and pathology to arrive at the correct diagnosis as rapidly as possible. Importantly, the findings from the Lymphopath Network study highlight that even when a diagnosis has already been made, a second opinion regarding pathology can be important, particularly when there is any diagnostic uncertainty.”

As part of our mission to deliver precise, individualized care to as many patients as possible, expert hematologists and oncologists at the Weill Cornell Medicine and NewYork-Presbyterian Lymphoma Program collaborate with our team of world-class hematopathologists to provide collective assessment of all individual cases, working our hardest to secure an accurate diagnosis before proceeding with the appropriate therapy.