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Support Beyond Treatment: Helping Patients Through Survivorship

January 25, 2021 | AONN+ Blog | Role of the Navigator
Featuring:
Lindsey Smith
Lindsey Smith
Oncology Nurse Navigator

A cancer diagnosis is life-changing and requires an “all-hands-on-deck” approach as we give the patient and their family as much support possible. As oncology nurse navigators and patient navigators, we provide resources for managing treatment side effects and the chemotherapy schedule, tell them where to be and when to be there, and often place restrictions on what they can do and how they can live their lives. But what happens when treatment is complete? I know the saying “survivorship begins at diagnosis” has been a hallmark of oncology care for years, but I have often struggled with what that truly means and how to implement this in my patient care.

As an oncology nurse navigator, I navigate my patients through initial diagnosis and treatment to the best of my ability. When a patient receives a cancer diagnosis, they need all the support available to help manage their treatment and care. But when the smoke clears and they need to resume their daily lives again and begin living their “new normal,” how can I still support them?

Nurse navigators guide the patient through the cancer care continuum from diagnosis through survivorship. While reflecting on this, I have found that I am guilty of not focusing as much time as needed in discussing survivorship after treatment ends. At the end of treatment, I would usually present the patient with their survivorship care plan, we would review it together, and I would make recommendations for follow-up. I would ask if they have any questions, and say “call me if you need me.” I truly thought that I was providing the care my patients needed, and for some I probably was. However, after taking more time to grow my own knowledge regarding the struggles of cancer survivors, I found many areas where I could improve.

Earlier this year, I had the opportunity to attend training on survivorship for young women with breast cancer through Living Beyond Breast Cancer (LBBC). It was during this training, and the implementation of what I learned in that series, that I had a dramatic shift in how I guide patients after treatment and into survivorship. This program really helped me focus on 4 main parts of survivorship for young women with breast cancer: long-term effects, managing menopausal symptoms, self-care, and sex and intimacy. Though this is a very specific subset of my patients, it gave me some great information and spurred me on to further my education on these issues. I cannot recommend enough taking the time to do more research and use available resources to increase your knowledge on these subjects. LBBC has a large library of information available on their website, including articles, educational content, and videos. I found these videos to be especially powerful, as they are coming from the voices of survivors.

In the journey to expand my knowledge further, I have found that one of the best resources for learning the impact of cancer survivorship is hearing it directly from the survivors themselves. That is why resources like the Academy of Oncology Nurse & Patient Navigators (AONN+) and its official magazine CONQUER: the patient voice are so important, not only for patients, but for providers as well. These resources contain great articles that focus specifically on survivorship, with important information including blog posts by providers, a review of the Commission on Cancer Standards, and articles written by patients. Becoming familiar with these resources was important not only for myself, but for my patients.

When implementing everything I’ve learned, I found that patients wanted to know that what they are experiencing (the anxiety, long-term effects, sexual dysfunction, etc.) are normal and manageable. Often, they do not know how to approach these conversations with their providers or loved ones, and this can lead them to feel lost or alone. Sometimes these cancer survivors need the opportunity to talk and to share their story and have their experiences validated by others experiencing similar side effects and situations. I found that the discussion and networking aspect of LBBC’s survivorship series was just as important as the giving of knowledge. The sessions were full of tearful stories and words of love and encouragement. Ideally, they are held in person, but in times such as these during the COVID-19 pandemic we have had to adapt the sessions to Zoom. This transition to virtual opened up the platform to cancer patients who may never have been able to attend in person.

In the past, I have referred my patients to support groups as I knew they were helpful, but it was not until I was part of something similar that I truly saw the value and impact that these can have. If you do not already facilitate your own sessions, try to be a part of one. Hearing from survivors and listening to their needs, fears, and questions helps you to know how to better arm yourself with the information and tools your patients need to handle this transition to survivorship as well as long-term effects.

To say that my eyes were opened is an understatement. I realized I was not putting enough focus on the care of the patient once treatment is over, and the transition into survivorship. I have made it a priority to spend more time in survivorship sessions with my patients, to make sure that I am asking meaningful questions, and to reach out for more resources for my patients.

Over the past year, I have grown in how I approach and support these patients. I am more comfortable with recommending complementary therapies such as acupuncture, counseling, and yoga to help with symptom management. I have become more comfortable discussing sensitive topics such as body image, anxiety and depression, and sex and intimacy, all of which I hope is contributing to better care for my patients. I am working hard to make sure I am expanding my knowledge of survivorship just as much as I research the newest treatment or therapies. I will continue to use resources such as AONN+, LBBC, and others, to expand my knowledge so that I am better able to serve my patients in all aspects of their cancer treatment and beyond.

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