A Journey Shared: Navigating Cancer as a Caretaker, Nurse, and Patient

An oncology nurse's experience with her mother's cancer and her own BRCA2 diagnosis shapes her approach to patient care.

“She had a tumor the size of a cantaloupe,” the surgeon said. I felt like the world had caved in on me and I was suffocating in its core. I was 22 years old when my mother developed a mysterious “bulge” in her lower abdomen—stage 4 ovarian cancer, as it turned out. As a bonus, we learned that both she and I carried the BRCA2 gene mutation, which meant that I was at an increased risk of developing breast and ovarian cancer as well.

The ensuing journey from caregiver to nurse to patient has profoundly shaped my nursing practice by providing unique insights and deepening my empathy. Patients and their loved ones often feel truly understood when they discover I walked a similar path. These personal experiences have become the foundation for building mutual trust and understanding in the therapeutic nurse-patient relationship, ultimately molding me into a better nurse.

During the last few months of my mother’s life, I moved in with her and became her primary caretaker. She died 2 weeks past her 50th birthday; 5 years after her initial diagnosis. She had declined quickly and was on hospice for only a few days. One of the hardest things about watching someone die is how helpless you feel. Knowing what to expect provides a small sense of control and a great deal of comfort. Following her death, I was broken and lost, but quickly resolved to embark on the next part of my journey—I was going to become an oncology nurse.

Recently, one of my patients decided to go on hospice. We sat in the exam room and she and her sister began by asking me general questions. As we discussed the goals of hospice, she paused and said, “Do you think I’m giving up? I don’t want you to judge me.” “I am not judging you one bit,” I said, “My mother was on hospice and I understand where you are coming from.” Something changed at that moment and the conversation became more intimate. They asked me details about my personal experience and I was glad to share as much as they wanted to hear. Being ill or caring for an ill loved one can be a lonely experience. It goes a long way when you say, “I was in a similar situation. I know this is scary. I am here if you need anything.”

The role of empathy in nursing has been discussed ad nauseam, and justifiably so. Empathy—the ability to understand another person’s feelings by imagining what it would be like to be in their shoes—is fundamental to the therapeutic relationship and contributes to better health outcomes.¹ But what if you truly were in your patient’s shoes or those of their loved ones? How would this affect your nursing practice and how much is it appropriate to disclose during patient interactions? The answer is subjective and situational. You certainly need to “read the room” prior to self-disclosure. Sometimes it is inappropriate to share your personal experience because the patient may feel you are shifting focus away from them. Self-disclosure can also be viewed as unprofessional, as it tears the invisible wall between you and the patient. On the other hand, removing that wall can be advantageous; it creates a sense of closeness between you and your patient and a climate of trust.²

As I progressed through my nursing career, I utilized this approach to support my patients while I continued to grapple with my BRCA2 diagnosis. For years, I had been closely monitored with biannual transvaginal ultrasounds, mammograms, breast MRIs, tumor markers, and specialist visits—following all the cancer surveillance guidelines. Yet I felt like I was playing Russian roulette and with each passing year; my odds were getting worse. Eventually, I came to terms with the decision to undergo prophylactic surgery. This choice depends on numerous clinical and individual factors that are not in the scope of this article to discuss. Personally, I feel lucky that I was able to make that choice, something that my mother and many of our patients never had.

In 2023, I had a prophylactic bilateral mastectomy with breast reconstruction. I also underwent a bilateral salpingectomy and unilateral oophorectomy. Overall, I had 3 surgeries that year, which was quite a bit for someone who had never had surgery before. Throughout the process, I was surprised that there were so many details I was not told by my providers. Most of what I learned on how to prepare for a mastectomy, I had to discover on my own or through various (quite wonderful) support groups. All along, I kept thinking that I could only imagine how our patients must feel. Not only am I an oncology nurse, but I work at a breast cancer clinic, and this was difficult, even for me.

I gained several insights through the challenges I faced during my journey as a patient. I was truly humbled by how physically and mentally incapacitated I was, especially after the mastectomy. Prior to my surgery, I did not fully understand how critical it was to have a caregiver present when a medical provider interfaces with a patient post-anesthesia. When I was in recovery, I tried to listen, but I struggled to process information. Even upon returning home, I had the memory of a goldfish for several days. Physically, the breast tissue expanders proved to be the most agonizing part. I hardly slept for weeks since the slightest movement caused me to wake up in pain. Perhaps the deepest scars were emotional and psychological. I did not feel like a “complete” woman. I was ashamed of my man-made chest. I had no sensation and frequently cried during intimacy. I made a choice for my long-term health and I do not regret the concessions, but it was a hard-fought journey and it continues to be.

When I returned to work at the breast clinic, I had an enhanced understanding of the patients’ perspectives and needs. Often, I was able to build a rapport with them through humor, as we joked about absurd aspects of our surgeries. On many other occasions, our shared experience provided my patients comfort and they did not feel alone.

I had a recent interaction with a patient for whom I believe this resonated deeply. During the patient intake, I asked her the standard question about suicidal ideation. She said, “I don’t have thoughts of hurting myself, but I have been feeling really sad since my surgery. Is that normal?” She began to cry and went on to share that since her mastectomy and reconstruction 2 months prior, she frequently cried, especially when she looked in the mirror. She had believed that something was wrong with her. It was heartbreaking how alone she felt. I disclosed to her that I had undergone a similar surgery a year ago, and I still experienced sadness and tears. I saw the revelation wash over her face that she was not alone, to have another woman with a similar experience validate her feelings.

The American Nurse Association affirms that nurturing trust in a nurse-patient relationship benefits both parties. Patients who feel understood are more likely to disclose sensitive information that can assist in their treatment, leading to better health outcomes. Meanwhile, nurses feel empowered knowing they are providing the compassionate care their patients need and deserve.³

My takeaway is that people are generally more at ease when they feel that you can truly relate to their experience. Certainly, as nurses, we cannot possibly endure all the ailments and strife our patients go through, but if it just so happens that we did have that experience, should we share it? For me, the answer often is yes. By understanding where they are coming from, I have been able to take better care of my patients, anticipate their needs, and provide support. Through self-disclosure, I have formed more intimate connections that make my patients and their loved ones feel less alone.

I encourage my colleagues to assess their patients and the situation for the appropriate use of self-disclosure. If you believe your patient will benefit in the context, share your experience. When you open that door, you are exhibiting trust and vulnerability that will often be reciprocated.

References

1. Moudatsou M, Stavropoulou A, Philalithis A, Koukouli S. The Role of Empathy in Health and Social Care Professionals. Healthcare (Basel). 2020;8(1):26. Published 2020 Jan 30. doi:10.3390/healthcare8010026
2. Lussier MT, Richard C. Communication tips. Self-disclosure during medical encounters. Can Fam Physician. 2007;53(3):421-422.
3. Nurturing Trust in the Nurse-Patient Relationship. American Nurse Association Resources Hub. September 13, 2024. Accessed June 25, 2024. https://www.nursingworld.org/content-hub/resources/becoming-a-nurse/nurse-patient-relationship-trust/
4. Strang S, Henoch I, Danielson E, Browall M, Melin-Johansson C. Communication about existential issues with patients close to death--nurses' reflections on content, process and meaning. Psychooncology. 2014;23(5):562-568. doi:10.1002/pon.3456