The 6 Month Cancer Survivorship Visit May Not Be Enough
Very early on in my career as a medical oncologist, I was finishing up a routine follow-up visit with a patient who had completed her active breast cancer treatment. She had been through it all — bilateral mastectomy with reconstruction, aggressive chemotherapy, radiation and had just started a 10-year plan of anti-hormone therapy with tamoxifen. At the end of the visit, I casually told her that I would see her back in 6 months. My hand was on the door, ready to walk out and onto the next patient, when I saw her eyes darken and start to fight back tears. I wasn’t sure what was wrong. We just had a good visit talking about how well she was doing on the medication, management of hot flashes after cancer treatment, and plans for her first vacation after finishing treatment. I took my hand off the door, walked back into the room and sat back down. I looked at her and then I realized it. After months of bi-weekly visits, the rapid switch to a 6-month follow-up was akin to free falling without a parachute.
Cancer survivorship is a complicated process and often times, is more intricate and delicate than active cancer treatment. During chemotherapy, there is a rigorous schedule of appointments and infusions. In between, one is focused on doing everything that needs to be done to manage the side effects of treatment- mouth sores, nausea, hair loss, body aches, headaches, and much more. After that intense period is over, we celebrate the “end of treatment.” Patients ring gongs and bells with their family members and treatment team cheering beside them. We then send patients off with a celebratory hug and a “you did it!” mantra. There is an expectation to get back to ‘regular life’. However, every single patient will tell you that they feel anything but “done” at that moment.
One of the things that I hear very often from my patients is that all the help and support they receive during chemotherapy disappears after they ring that gong. Although chemotherapy may be over, the residual effects persist. Some patients will be on a long-term maintenance medication that comes with its own side effects. Patients may continue to struggle with symptoms of residual fatigue, neuropathy, joint pain, depression, anxiety, hot flashes, insomnia, and “chemo brain” among others. Many will experience a deep fear of cancer recurrence that is like a magnetic pull they are unable to break from. To prepare for chemotherapy, patients get handouts, education sessions, and support from ancillary staff including social workers and nurses. Their families and friends show up for them in a multitude of ways including meal trains, cozy blankets and fuzzy socks for the often-freezing infusion center, and financial support. After months of treatment, patients have learned how to live with cancer. Now, cancer thrivers are expected to all of a sudden know how to live beyond cancer without all the support and tools to do so.
After that encounter nearly a decade ago, I realized that there is a clear disconnect between what patients undergoing cancer treatment need and what they actually receive as they enter into that — often murky — next step known as survivorship. I had been thinking of the transition to a six-month follow-up as a big milestone. What I failed to realize then was that those follow-up visits to the cancer center serve such an important purpose. The visits create a protected space for patients to discuss the challenges that come after treatment. Very often, their family and friends tell survivors, “you’re fine” and “you’re done with all that now” and thus, those residual symptoms and concerns tend to get brushed under the rug. This is never done in a malicious way but it happens because the need to get back to a life where cancer is not at the immediate forefront is so strong. We all so desperately want our loved one to come out on the other side of cancer that sometimes it’s easier to drape a veil over the challenges rather than address them head-on. Those visits with the oncologists thus become therapeutic. Those visits address what is often not being talked about outside of the exam room, including the ever-present fear of recurrence. As these visits are instrumental in helping patients navigate survivorship to the best of their abilities, a six month follow-up can often be too long of a gap for patients.
Life after cancer is not linear. It is often messy and fraught with physical and mental challenges. Recognizing this is critical to helping our patients, our family members, and our friends in figuring out exactly how to live beyond cancer. Since that visit many years ago, I now ask my patients about what will be most helpful to them in terms of follow-up and I urge everyone to do the same. For some, a six month follow-up visit is necessary so they can start to rebuild their life and separate themselves from frequent visits but others will need a much shorter follow-up, such as two months or three months. While we can never get rid of all the hurdles that persist and also arise after active cancer treatment, allowing space and time to talk about them is necessary so that patients not just survive but actually thrive.
