COVID-19 and Cancer: Helpful Resources for Lymphoma Patients

The Weill Cornell Medicine Lymphoma Program team remains committed to supporting and protecting the health and safety of our patient community during this challenging time. With COVID-19 dominating the news and impacting our everyday lives, many people may be left wondering which sources to trust and which recommendations to follow when it comes to understanding the coronavirus and staying safe during this unprecedented time.

We developed this article and compiled a handful of reliable resources designed to help lymphoma patients — at our center and beyond – best navigate this rapidly changing situation.

COVID-19 Basics and General Guidelines

Physicians and staff within the division of Hematology and Oncology at Weill Cornell Medicine and NewYork-Presbyterian Hospital are here to provide guidance and support to our cancer patients and their loved ones. We encourage you to review the information outlined in our COVID-19 and Cancer Guide, where we provide answers to our patient community’s most frequently asked questions. You are also welcome to call our COVID-19 hotline at (646) 697-4000 with questions at any time.

If you have COVID-19 symptoms or suspect that you have been in contact with someone with COVID-19, contact your oncologist for further instruction. If you need in-person medical attention, your doctor will advise you regarding the necessary steps and preparations to protect you and others at the facility before you arrive. Please do not visit your doctor’s office or the emergency department without first being in touch with your healthcare team.

COVID-19 and Lymphoma

In the Lymphoma Research Foundation (LRF) webinar entitled “Coronavirus and What the Lymphoma Community Needs to Know,” our own Dr. John Leonard reviews the current medical understanding and response to COVID-19 (per March 19, 2020). Dr. Leonard explains why we all must work together to “flatten the curve,” and addresses frequently asked questions surrounding immune system suppression and the coronavirus, lymphoma treatment during the pandemic, the use of masks and transmission of the disease between different groups such as children, the elderly and pets.

The LRF also created a COVID-19 fact sheet complete with prevention tips and questions to ask your oncologist. Weill Cornell Lymphoma Program Chief Dr. Peter Martin and an infectious disease specialist contributed to and medically reviewed this information.

Appointments and Video Visits

Please know that we remain dedicated to the health and wellbeing of our lymphoma community and that continuing to provide world-class cancer care for our oncology patients is important to us. As part of our mission to provide care during this unprecedented time, the Hematology & Oncology division has been implementing extensive patient-centered precautions. These include efforts to prevent the spread of COVID-19 within our facilities and the expansion of virtual video-based appointments.

The Weill Cornell Lymphoma Program continues to be able to offer new and current patients the cancer care they need. We also provide expert, multidisciplinary care for patients with lymphoma who need medical attention for COVID-19.

Video visits allow patients to receive high-quality lymphoma care from the comfort and convenience of their own homes, while adhering to safe social distancing parameters recommended to minimize exposure to other individuals. Our video visit capabilities also extend to patients who wish to schedule a virtual second opinion.

To schedule a video visit, please follow the instructions below. Our team will work with you to obtain any necessary medical records prior to your visit. We will inform you if we believe that you are better suited for an in-person visit.

New Patients
Please call (646) 962-2800.

Existing Patients
Please call (646) 962-2064.

Learn more about video visits. Once your video visit is scheduled, use this guide to connect with your doctor.

Video visits use the same insurance coverage as in-person appointments, and your copayment and deductible still apply.

Visitor Policy

While we recognize the value of family and friends’ support throughout lymphoma diagnosis and treatment, keeping patients and their loved ones safe requires temporary limits on the number of people allowed to accompany each patient to an appointment. Please note that our policies continue to evolve during these unprecedented times. Click here for our latest COVID-19 visitation guidelines.

Additional Resources

Patients are welcome to call the WCM/NYP COVID-19 hotline – (646) 697-4000 – with any questions. Please note that this hotline is available as a public service to provide information only, and not to diagnose, treat or render a medical opinion.

Patients may also consult the following resources.

Ways to Help

It can be easy to feel powerless in the midst of a global pandemic, but there are ways that you can help. In fact, the biggest impact that people – sick or healthy – can make in the fight against COVID-19 is simply to stay at home to curb the spread of disease and its potential to overwhelm the healthcare system.

Those willing and able to contribute to Weill Cornell Medicine and NewYork-Presbyterian’s response to COVID-19 can make a donation to support the purchasing of ventilators and personal protective equipment (PPE), and the physical and emotional wellbeing of healthcare workers on the frontlines of the outbreak.

A fundraiser was also created to provide nutritious, high-quality meals to the New York City doctors, nurses and ancillary staff leading the fight against COVID-19 as part of medical intensive care units.

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.