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Be an Active Participant in Your Care During COVID-19

Patients and survivors: how has the COVID-19 pandemic impacted your care? Are you getting the breast cancer treatments, procedures and follow-ups that you normally would? Do you have the medications that you need?

The COVID-19 pandemic has me thinking about the cancer community as well as other communities with chronic illness in need of timely medical care. With medical resources being focused on the pandemic, even rightfully so, what does this mean for us and for them?

Only a few weeks ago, I began to realize that precautions being put in place for the pandemic may play a role in influencing the outcomes of those in the midst of breast cancer diagnosis, treatment and recovery.

Breast Cancer in Times of Uncertainty

When I was diagnosed with invasive ductal carcinoma in September 2018, I was told that I needed to start chemotherapy immediately because the cancer was so aggressive. In the two weeks that it took to plan my treatment (e.g. multiple consultations, patient education, port installation, ECG, scans), the MRI revealed that my tumor was 2 cm larger than originally captured on the ultrasound. Although MRI is a more sensitive imaging technique and the discrepancy in measurement is common, it fueled my anxieties about every day mattering when it comes to treatment. From then on, every delay felt like a lifetime. Maybe you can relate?

"As a breast cancer patient or survivor, you may relate to the psychological burden that comes along with waiting…waiting for test results, waiting for surgery, waiting… "

Amid the COVID-19 outbreak, these anxieties have resurfaced mainly for others. My hope is that the conversation about how many lives will be impacted by delays in treatment will become a focus.

There has already been reporting on COVID-19 necessitating changes in treatment and care. Last week, a woman with stage-4 neuroendocrine cancer was quarantined on the Grand Princess off the coast of California and set to miss her chemotherapy. Another patient, a 26-year-old with leukemia in need of treatment was trapped in Wuhan, China. As we learn more, stories like these could increase.

It Happened to Me

As hospitals are inundated with COVID-19 cases, less resources could be available to treat people that are in need of care for cancer and other conditions requiring timely intervention. COVID-19 is very much a systems issue, not just an individual one. Strategies put in place to support the safety of the currently healthy could put the sick at risk.

I finally received a phone call from my surgeon’s office that I had been expecting since the American College of Surgeons released their recommendations on March 13 for hospitals to enact plans to consider minimizing elective procedures.

I was scheduled for a revision/reconstruction surgery of my breasts involving the removal of extensive, inflamed and painful necrotic tissue, a complication of 34 rounds of radiation after a double mastectomy and DIEP flap. Admittedly, it is not an urgent surgery. However, for me, it is a surgery that stands in the way of a new life after cancer treatment – one that is hopefully not filled with endless appointments, physical therapy, chronic pain and physical limitations.

As a breast cancer patient or survivor, you may relate to the psychological burden that comes along with waiting…waiting for test results, waiting for surgery, waiting… I will manage physically. Psychologically, it’s more difficult.

Stay Active in Your Care and Safety

A goal is to preserve medical resources to fight COVID19 – equipment, beds, personnel; timing is urgent. But timing may be or feel urgent for cancer patients, too. What can we do to be an active participant in our care in this time of uncertainty?

Don't go through it alone. From virtual hangouts, to trained peer mentors, online support groups, and oncology social workers, YSC is ready to connect you to the resources and support that you need.
Reach Out

We are in a position to play an active role in our care and safety.

  • Communicate. Effective 2-way communication with your care team is at the heart of continuity of care and safety. Stay connected and engage in proactive communication regarding your care and safety. If face-to-face opportunities are lacking or are time-constrained, send messages through the patient portal or email and ask for a phone conversation. Be empowered to initiate. Do not be afraid to be persistent. But be reasonable...remember, the healthcare system is stretched, and clinicians are doing the best they can.
  • Ask all the questions! How might the pandemic impact the timeline and quality of my care? My safety? Should I continue with treatment that makes me immunocompromised? What aspects of my care are urgent? What implications might delays have? What might be some strategies to ensure continuity of care? How can I stay safe at this time? Do not be afraid to share concerns and anxieties about COIVD-19.

Even doctors do not always have the answers in the best of times, let alone today when they are being called upon to deal with a global pandemic. The more proactive you can be in your treatment and care, the better you will be equipped to handle rapid changes as the next weeks unfold.

My thoughts are with clinicians and staff, with grocery store clerks, with food delivery folks – with everyone working hard and risking their health to ensure we keep ours. But my thoughts are also with the currently ill, whose timing of care may be compromised in this uncertain and chaotic time.

Elizabeth Lerner Papautsky, PhDLiza is a mother of a 2- and a 6-year old, a 1-year breast cancer survivor (diagnosed at 38), and a researcher in patient safety. Wearing these multiple hats gives her a unique perspective on her cancer journey. She is passionate about patients and survivors being active participants in their care through being informed and engaged. She hopes that sharing her experiences and opinions helps other feels more empowered in their care and safety. Connect with Liza at