From the moment a patient learns she has cancer through the decision-making process to determine the definitive treatment and execution of that acute treatment plan, the nurse navigator has been at this patient’s side. But what happens during surgery, chemotherapy, and radiation treatments? The patient is now going to be seen less frequently, and definitely have less contact with you (her navigator). Yet you notice that the patient continues to call you frequently with questions and concerns, especially associated with fear of recurrence and challenging the oncology team as to why no scans or other tests are being performed to “make sure the cancer hasn’t returned.” If this sounds like your navigation life, read on…
There are several very good reasons why this happens: (1) the patient has considered you her lifeline from the point of her cancer diagnosis to supporting and educating her through her treatment; (2) the patient doesn’t feel like she is a survivor of her cancer yet; and (3) the patient lacked preparation as to what would happen and how she would continue to be navigated after her acute treatment is completed.
Therefore, one of the first things that needs to happen for the patient to even be able to psychologically move forward after her acute treatment, is to have the navigator establish expectations and a time line at the point of the initial contact. By setting expectations up front, there is a better chance that the patient will be “ready” for transition when the time comes. Based on the patient’s type of cancer, disease stage, accepted treatment plan, and risk of recurrence should directly factor into how long a patient will be followed by her oncology specialists (ie, surgical oncologist, medical oncologist, and radiation oncologist) as well as to whom the patient will transition once the oncology specialists have completed their acute treatment and monitoring phase. And, of course, what is your role as the navigator once treatment is done?
It is important to have this transitional process and long-term follow-up schedule clearly written out for the patient so as to reduce confusion. It also is a good teaching moment for you as the navigator. This is a time to create the treatment summary, reiterating to the patient what treatment has been done (ie, type of surgery, number of nodes removed, types of chemotherapy drugs administered, amount of radiation received). This then nicely leads into the creation of a survivorship care plan. Reengaging the patient’s primary care physician (PCP) into her care is important. The PCP needs to be made aware of the treatment received and what monitoring is required regarding looking for local or distant recurrence as well as the potential development of other types of primary cancers. So recording WHO is to order the next mammogram, WHEN the patient will be due for a clinical breast examination and by whom, HOW is the patient to do self-monitoring, and WHY staging work-ups are no longer done for long-term monitoring are of utmost importance.
Educating the patient that it is natural to feel initially fearful when treatment is completed, however, the solution is to not insist that she continue to be seen by her oncologist(s). We need her to embrace survivorship as a critical milestone she has reached, and make way for newly diagnosed cancer patients who need to be occupying the examination room she routinely visited during her acute treatment. Some cancer survivors are transitioned to be followed by physician extenders for a period of time (such as a nurse practitioner). Some survivors are migrated back to their PCP and other providers (ie, gynecologist, dermatologist, cardiologist, etc) when acute treatment is completed. What remains an issue across the country is the ability to accurately monitor that a cancer survivor is adhering to the long-term monitoring plan intended for her to follow. There may therefore come a point in time when survivorship navigators begin to appear within the oncology world to ensure that cancer survivors are staying on track as well as practicing healthy lifestyle habits to maintain their health and reduce their risk of cancer in the future. We will also likely see genetics experts spending more time in survivorship models of care, recognizing that during treatment the patient may have had no significant family history of cancers, but years later other family members also are diagnosed.
Whenever possible, help patients with this transition by giving them the opportunity to speak with other cancer survivor volunteers who have successfully made the transition and have moved forward with their lives as survivors, being followed now by the community medical providers. Also offer a special patient education program or support group session for those patients recently completing acute treatment, as a way to help them understand where they are across the continuum of care.
What happens if the above steps aren’t taken on your part? Your phone will continue to ring, getting calls again and again from the worried well—cancer survivors who are not moving forward toward the transitional process that is imperative to foster quality of life. The person who suffers the most will be the newly diagnosed cancer patient for whom you have less time, having spent so much time on those who have completed their treatment.