When Active Treatment Ends
by Pat Battaglia
When a recent Brown Bag discussion turned to the topic of life after cancer, attendee Gail H. eloquently described her experience: “I feel like I’m on a bridge between two worlds.” After being diagnosed with breast cancer for the second time in late 2019 (the first time was twenty years prior), she had undergone surgery, chemotherapy, and completed radiation therapy in November of 2020. This signaled the end of Gail’s active treatment, the goal of which is to ensure, to the fullest extent possible, that it doesn’t return.
For most people diagnosed with cancer, the active treatment phase is a time of frequent medical consultations and treatments. Healing from surgery and managing the side effects of treatment also require time and attention. The schedule is often demanding and time-consuming. However, after the initial shock of receiving a diagnosis and making treatment decisions, maintaining this busy schedule can result in feelings of having taken some control over the disease process; of doing all one can to ensure their survival. And, when evidence-based therapies are employed, these feelings stand on solid ground.
When the goal has been met – when curative treatment has come to an end and no trace of cancer can be detected – it is a time of celebration for many patients and their loved ones. And there truly is much to celebrate. Yet, for many, it is also a time of mixed emotions, some of which can be surprising and even difficult. When the calendar of daily or weekly appointments becomes one of quarterly or semi-annual follow-up visits, a new phase of survivorship has begun, often relatively abruptly. Some Brown Bag participants have wondered aloud, “Now what?”
“But you should be happy!”
A single cancer diagnosis disrupts many lives. When the afterglow of completing cancer treatment begins to fade, it’s only natural for well-meaning and caring family members and friends to want life to return to normal. Naturally, they want their loved ones to be happy. But for those who have been diagnosed, feeling a sense of relief and returning to a pre-diagnosis level of functioning can be elusive targets. It is possible to feel happy and conflicted at the same time.
After undergoing surgery and chemotherapy, Gail completed several weeks of radiation therapy in November of 2020. A few weeks afterward, she began taking an aromatase inhibitor, an estrogen-blocking medication, as her cancer was found to be fueled by that hormone. This is a proven and effective strategy to prevent recurrence in these cases. But whether or not a person is a candidate for hormonal therapy, those who have completed active treatment for breast or gynecologic cancer are usually left with reminders of their experiences. Surgery invariably results in scars. For some, it can also result in lymphedema, range-of-motion issues, and pain. Hair regrowth after chemotherapy and the return of cognitive functioning if “chemo-brain” has occurred are slow processes. Skin and tissue healing after radiation also take time. Body image and sexual functioning can be impacted by different forms of treatment. And post-traumatic stress disorder is becoming an increasingly recognized phenomenon in many who have moved beyond active treatment for cancer.(1)
Patty B is uniquely positioned to speak on the topic of survivorship. As the Cancer Survivorship Program Manager at the University of Rochester’s Wilmot Cancer Institute, she works with oncology providers who provide post-treatment follow-up care to their patients. Being a nine-year survivor of breast cancer adds to her expertise, as well as her compassion. She notes, “I remember learning, even before I worked in the oncology world, what the term ‘new normal’ means. But that can be hard to grasp because every day is not the same; every person is not the same. So what is ‘normal?’ Someone once said to me. ‘Normal is a setting on my dryer.’”
Says Gail, “I would tell someone who has just finished treatment that the next stage is still part of your treatment. You might need to talk to other survivors, to slow down and let your body heal. Going through cancer treatments is a kind of trauma to both body and soul, and one doesn’t just bounce back. As my partner reminds me, ‘It hasn’t even been a year since you finished treatment!’ Be good to yourself.”
Fear of Recurrence
It is common for those beyond active treatment to fear the return of their cancer. The desire to take positive action to detect cancer as early as possible seems sensible on its surface. However, as counter-intuitive as it may seem at first, blood tests, scans, and x-rays have little, if any role to play in this scenario. More is not necessarily better in this instance. In fact, measuring the levels of circulating tumor markers in the blood(2) or using advanced imaging techniques such as MRI, CT scans, and PET scans(3), have been shown to provide no benefit to survivors of early stage disease. “[A]side from annual mammography, the routine use of advanced imaging to evaluate for recurrence and/or metastatic disease does not result in increased survival or improved quality of life. There is little evidence to justify routine imaging with CT, MRI, radiography, or nuclear medicine studies for the detection of metastasis in asymptomatic women.”(3)
A trusted oncology provider who is familiar with the particular aspects of your diagnosis is in the best position to advise you about which symptoms to watch for, which ones to report to your medical team, and when it might be advisable to do so. Walking the fine line between healthy body-awareness and stress-inducing hyper-vigilance is an art in which none of us is perfect. It can help to know you aren’t alone in this.
Patty’s self-developed imagery has helped reframe her fears. “I compare it to a famous quarterback who has a shoulder injury at 21. Is it going to come back at age 29? You’ve had this injury that took you out of the game, and you’ve done the rehab and all the things you’re supposed to do. Then it gets fatigued and your coach calls you out of the game – is that not in the back of your mind? These are those moments to take a deep breath and remember the sun’s out, it’s a blue sky, I feel the wind on my face. Sometimes it’s taking a step back before moving forward.”
Gail employs an approach that bears some similarity to Patty’s while being uniquely her own. “Emotionally I feel like I’m still on a bridge between two worlds. I don’t have cancer and I’m not sure I can be cancer free in the other world. Every little ache makes me wonder now. What is helpful is exercise – yoga, walking, riding my bike, and swimming. Drinking lots of fluids. Seeing friends. Giving myself permission to slow down and to get rid of expectations that I must now go full steam ahead. I’ve been reading a lot and writing with my writing group in the mornings. Slowing down and taking a deep breath. Talking about it, writing about it.”
“What is not helpful is pushing myself, going faster, and feeling like I’m running out of time. Scheduling too much. Saying yes to anything. My partner reminds me that spontaneity is where we are at now. That feels right and good.”
Crossing the Bridge One Step at a Time
Each individual cancer diagnosis is unique and the disease affects each life it touches differently. Just as there is no one-size-fits-all approach to treatment, each person’s approach to long-term survivorship is individual. It is a matter of discussion between patients and their medical providers to develop a plan for the weeks, months, and years that follow the end of active treatment.
Patty hearkens back to her training as a nurse in offering guideposts for caregivers and survivors as they develop survivorship plans. “There are three questions in education: what does someone know? What do they want to know? And what do they need to know? Of course, that could be looked at on so many levels. You meet the person where they’re at and then break it down to those questions.”
Some may want to know every possibility, while others would rather focus exclusively on the information they need to take the next step. Neither way is inherently better than the other; they are simply different approaches to the same goal.
Frank and honest communication is helpful on many levels and in many life situations, especially for those who find themselves on this metaphorical bridge between two worlds. “I’d like more talk with health providers on this subject so it would feel more normal,” says Gail. “There has been some talk about sex post-treatment and sleep issues but that’s all. I do like that they are scheduling appointments every few months so someone sees me. That makes me feel like I’m not out there alone without anyone watching.”
A detour through cancer treatment is not a life path anyone would choose. Yet silver linings do appear on the darkest clouds, and this has been true for Gail. “Time is the gift I’ve received and learning how to use it differently is the healing post-treatment. It takes time to figure this out, to consider your new lease on life. I don’t think one jumps into life in the old way after trauma. And maybe that is the good news. It’s an opportunity, as the saying goes.”