Andy Sealy was diagnosed with breast cancer on January 24, 2017, and stage IV metastatic post double-mastectomy in March. Learning to navigate care and treatment, she never could have anticipated what living with breast cancer would be like during a global pandemic. Now, on top of forced adaptations and increased isolation, she and other oncology patients, are left wondering if the emergency authorization of the COVID-19 vaccine is their ticket to resume some level of normalcy, too.
Since the onset of this pandemic, health care leaders have urged immunocompromised patients, including those with cancer, to remain vigilant in their measures to avoid potential exposure to the virus. As vaccination distribution begins globally, oncology patients are unsure when and if they should opt to be vaccinated. Immunization against COVID-19 is ideal, but health care leaders emphasize that there is not enough data to guarantee the vaccine's safety across the oncological population.
This is because oncology patients were not included in COVID-19 vaccine clinical trials. For this reason, the outcome of vaccination for this group is unknown. However, the hope is that as more individuals worldwide receive this new mRNA vaccine, scientists will have a better idea of how patients with weakened immune systems react.
"At first, I said 'No way I'm taking this,' but then I thought about it, and I was like 'Why not?' Now, if it's between getting the vaccine or staying in the house, I would 100 percent get it," shared Sealy, who is part of the Black, Indigenous and People of Color (BIPOC) community, a population the Centers for Disease Control and Prevention (CDC) states has much higher COVID-19 death rates than White, non-Hispanic individuals.
"After 3.5 years of getting used to being on a schedule with scans, blood work, and other appointments, COVID-19 isolation makes you feel like you've lost control," she noted.
While she understands oncology patients could not be a part of clinical trials so that they could be expedited for the benefit of millions of people, having had to essentially stay home since March has taken its toll on her mental health. Isolation left her largely alone, self-medicating, and spiraling into a state of deep depression-to the point where she became suicidal and ultimately sought mental health treatment.
Coming out of treatment and back into her adapted COVID-19 lifestyle, Sealy noted that she always asks herself, "Am I living safely or am I safely living?" To her, living in isolation isn't living, and if receiving the COVID-19 vaccine could alter this state, she remains very interested. In addition to weighing the risks and benefits of possible vaccination, Sealy expressed that she has also experienced tremendous guilt, having not volunteered to participate in the COVID-19 vaccine trial on behalf of breast cancer patients.
"My cancer is terminal, so I think if I volunteered I could help researchers understand how someone with my type of breast cancer would react to the vaccine," Sealy said. "I've asked my physician about when I might be able to get it, because I really want to be able to go back out and start doing things again."
"My world is full of vaccine talk right now," said Lisa Kennedy Sheldon, PhD, ANP-BC, AOCNP, FAAN, the Clinical and Scientific Affairs Liaison at the Oncology Nursing Society (ONS). "Patients want to know if they can get the vaccine and are asking their health care providers if they think the vaccine is safe. Many have questions about the vaccine being a new type of vaccine, an mRNA vaccine."
Debra Kelly, RN, BSN, OCN, ONN-CG, Oncology Nurse Navigator at the Sarah Cannon Cancer Institute within HCA Houston Healthcare, also noted that her oncology patients are asking vaccination questions. They are wondering if the COVID-19 vaccines are safe and, of the two options currently available, which is the "best?"
While Kelly noted the importance of oncology patients receiving the flu and shingles vaccines, she said COVID-19 vaccination does pose questions about whether these patients will mount an adequate immune response due to cancer-related immune suppression.
Expanding on these questions, Sheldon explained that, while there is evidence people who have cancers experience more serious side effects and a more serious disease course from COVID-19, the ONS needs more data before making oncological vaccination recommendations. For example, when Pfizer's data came out and was looked at by FDA officials, there were exclusion criteria-one of which was receiving chemotherapy. Therefore, oncologists and oncology navigators can be certain that there were no patients receiving chemotherapy participating in the Pfizer vaccine trial.
Eamonn Nolan, Senior Manager of Oncology Communications at Pfizer, affirmed this, explaining that the ongoing COVID-19 vaccine study protocol "excluded immunocompromised individuals with known or suspected immunodeficiency," as determined by history and/or laboratory/physical examination. However, individuals who have a history of cancer, including breast, colon, prostate and other cancers, and who are in remission, were eligible to participate and were part of the trial population.
"A future clinical trial focused specifically on the immunocompromised population is planned for next year," Nolan said. "We recognize that this is an important topic for cancer patients. If someone is living with cancer, they should talk to their doctor about vaccination."
Sheldon added that, as an organization, the ONS will follow the recommendations of the FDA, CDC, and Infectious Diseases Society of America about how to care for people with cancer and make recommendations about vaccines for COVID-19. The organization plans to work with other organizational partners to find the best evidence before making recommendations for all vaccinations, including the COVID-19 vaccine.
"We're waiting for all of the information, just like everyone else is," said Sheldon. "We want to make sure the vaccine is safe and effective. We want to know how it actually works across special populations, such as people with cancer and people with cancer receiving treatment."
Until then, she stresses that the only answer to whether or not oncology patients should receive the COVID-19 vaccine is that the ONS does not have the information yet to make this determination. Sheldon believes that, as the vaccination clinical trial progresses over the next 2 years, scientists and medical professionals will have more information needed to better understand the vaccine's safety and efficacy.
With or without receiving vaccination in the immediate future, health professionals continue to stress that precautions like mask-wearing, handwashing, and social distancing are as important as ever-especially for immunocompromised oncology patients. By implementing these safety measures, oncology patients can best mitigate risks and maintain optimal health outcomes as the world waits for the pandemic to end.
Lindsey Nolen is a contributing writer.
Patient Perspective
If any oncology patients are interested in speaking with Andy Sealy about her journey, they can contact her on Facebook or Instagram at @justaskwithandysealy, or by email at mailto:[email protected].