Helping Patients Make Decisions to Take Charge of Quality of Life
Being an ear to listen or a voice to help navigate patients through their cancer journey can provide the catalyst they need to remain positive as they fight the disease.
In the summer of 2014, I was an oncology nurse navigator for a local community-based health system. One of my jobs was to go through a weekly list of patient names given to me from the breast center. But this was not just a random list of patients. It was a list of patients who had just been notified by our breast radiology team of their breast core biopsy results. A phone call from this team was life-altering. Bottom line: It was a positive result, also known as a breast cancer diagnosis.
That one phone call became a game changer for many of these women, interrupting their “normal” life and, possibly, forever changing its course.
At the time, I had 27 years of oncology experience, but I was never involved with a patient at this vulnerable stage. I was familiar with helping patients after diagnosis, treating them with chemotherapy, or getting them through radiation treatments.
This was a mind opener for me. It helped solidify my passion to be not only an oncology nurse but also a patient advocate—and thus started my career as an oncology nurse navigator.
This is how I met MJ. She was a patient on the list and needed navigation services. This meant an introduction to me and an explanation of my role. I would follow her through the initial process of figuring out the next steps from a medical perspective. I would assist with helping her set up the appointments she would need: surgery, medical oncology, and radiation oncology. I would be attending the breast panel discussions and be a phone call away to go over any questions or concerns she may have after her multidisciplinary team appointments. I always let MJ know, “Just call me. Do not go through this alone, even if you just have to cry it out.” MJ called me. MJ taught me. MJ and I went through this together.
She and I hit it off from the start. MJ is one of those magnetic people. She draws you in to her circle. She has insight and can easily see the big picture. She is a genuine person with a heart of gold. This turn of events made her vulnerable but very intelligent. She completely surrendered to this vulnerability and entrusted me with her life. I was overwhelmed but determined to help this woman no matter what it took. MJ openly shared with me her situation. She was a single mom of 2. Her son, 17, was headed into his senior year at a local private high school and was beginning his college application process. Her daughter, 7, was still in her elementary school years. MJ was not going anywhere. This breast cancer thing had to go away. This is how our journey began.
Her first appointment was with the surgeon. MJ’s case was presented at the multidisciplinary tumor board, where pathology and radiology results are discussed and reviewed. Upon review, the team was leaning toward a lumpectomy with radiation. I remember feeling relieved and thankful. However, there were more tests needed prior to finalizing this plan of care. One of them was a magnetic resonance imaging (MRI) test of the breast. The result of the MRI was not what MJ expected; her disease involved more of the breast than initially thought. She also had a few lymph nodes in her axilla that were of concern. The lymph nodes needed to get core biopsies to confirm whether they were involved.
This was our first bump in the road. MJ’s treatment now required more than a lumpectomy. She needed a right mastectomy and an appointment with medical oncology. I assisted and provided MJ with support to her medical oncologist. The new plan was chemotherapy prior to surgery. Relying on my prior experience, MJ asked if I knew anyone in the larger university hospital that could help her get an appointment with medical oncology for a second opinion. I happened to have the connection she needed and got her in. Like many patients with cancer, MJ soon discovered that her diagnosis wasn’t her only challenge. Her medical bills were adding up. I worked with the Susan G. Komen and Girls Night Out organizations to get her financial support. This covered some of her expenses. Then I connected with an old friend who managed a scholarship fund for the local high school MJ’s son attended. I entered his name, and he won. MJ was free of her last high school tuition payment for her son!
The chemotherapy was rough. MJ and I talked at least every other week. She was struggling and was convinced she did not want to go through this again. We talked endlessly about her future surgery, and perhaps she should get a bilateral mastectomy. This was extremely difficult for her. It was her identity, her self-esteem, her womanhood, and her body image. She couldn’t wrap her mind around having no breasts. I listened and counseled. I remember telling MJ, “This too will pass,” and, “Surgeons can do amazing things these days.” She could be a candidate for delayed reconstruction.
I remember how she changed. She became a warrior and fought to get this cancer in remission. In the fall of 2016, MJ was given a clean bill of health. After all her upsetting scans, chemotherapy, radiation, and a bilateral mastectomy, she was finally cancer free.
MJ had gone to the university hospital to have her records reviewed. I was now employed at this university hospital as the breast nurse navigator. MJ contacted me, met with me, and then surprised me with the news. We cried, we laughed, and MJ told me she was ready for the reconstruction to get new breasts. Back to work I went for MJ and helped get her an appointment with a plastic surgeon.
In May 2017, MJ was discharged with a new look and new breasts. Her quality of life was restored, not as before but better, stronger, as one of the most beautiful people I know.
Maria Malloy is an oncology navigator for the breast service at Abramson Cancer Center. Her area of expertise and passion is working with patients with breast cancer, lymphoma, and sarcoma.