When Oncology Becomes Primary

Article

The idea of trading in a primary care physician for an oncologist still brings a knot to my stomach. I'm well aware that the biannual blood tests and annual X-rays have one purpose: scanning for the return of the monster.

When I walked out of my last radiation session five years ago, the therapist who shepherded me through the previous 29 pushed play on the boom box and the song, "Hit the Road Jack," filled the air. With smiles, hugs and tears, we said goodbye and the refrain, “don’t cha come back no more,” couldn’t have been more on point.

There was no similar ceremony at the oncologist’s office after the termination of chemotherapy, as the message was clearly delivered, “We are your doctors now, and we will continue to follow your care.”

The idea of trading in a primary care physician for an oncologist still brings a knot to my stomach. I’m well aware that the biannual blood tests and annual X-rays have one purpose: scanning for the return of the monster. As a result, I always feel strange sitting in the waiting room of my oncologist’s office.

Five years out, I can still recall the feeling of being in active treatment, waiting for my name to be called so I could take my chair and get hooked up for the next five hours. I cannot help but scan the room these days and feel deep empathy for those who I know are only starting their journey. At times, I feel a twinge of survivor’s guilt as I sit with my regrown hair, full blood count and absence of chemo-induced fatigue. During these times, I remember what it felt like to be starting this challenge and how I felt when survivors showed up, aglow with a radiance that comes from having survived the perfect storm of physical and emotional traumas. To ease this guilt, I imagine that I’m being seen as an inspiration — living proof, with a huge emphasis on the living part — that treatment can work, the beast can be tamed. However, part of me is aware that others may be thinking, as I did on occasion, “How dare you look so healthy!”

The sobering moment arrives when I see that person who I know may never get to have a final appointment, who may never know the relief of a clear CT scan or blood work. To say that one is humbled by this awareness falls short of the affective response deep within one’s heart. As a professional healer, I want to reach out and hold that person’s deepest fears while they regain, if even for a moment, the ability to breathe freely again. I want to tell them that I know the demons they face and assure them that, despite how it appears, all is well.

Instead of opening up my therapist tool kit, however, I choose to sit as a silent patient who’s simply waiting his turn to be called to see the doctor. Often, I recite a silent prayer or healing mantra to the others who wait with me, as there are moments when no words can be just as powerful as any cliché: “Hang in there,” or “It will get better.”

When I walk out of the doctor’s office, I pass a renal clinic, a gastroenterology department and outpatient surgical practice. I see old and young, fit and feeble, walking or being wheeled, to their next destination and am struck by a sense of kinship. Sure, we’re all connected at that moment by the label “patient,” but it’s a deeper connection one senses; a communal sharing of the fragility, humility and resiliency of the human spirit. While I still hate having an oncologist as my PCP, tempered by this experience of community, it’s a hate I hope to have well into the future.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
Yuliya P.L Linhares, MD, an expert on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL