Randiga Harnes: Cancer Survivorship Starts at Diagnosis – It Is Quite Simple, Really

Randiga Harnes, Primary Healthcare Intern at Mariwa Health Centre, posted on LinkedIn:

“From this writer’s initial and naive perspective, the term “cancer survivorship” meant the relief one has finished treatment successfully, and eventually one is cancer-free. Even after working with patients through their therapies and into remission, the gap that separates the period during and after cancer hid the reality that survivorship is presenting a rising challenge in the oncology world.

In Africa, where treatment success rates have nowhere to go but up, a new outlook at survivorship presents an opportunity to reorganise the care packages we currently have to best address the evolving cancer treatment landscape.

Survivorship Starts at Diagnosis, Not After

The moment of diagnosis with cancer is significantly a lifechanging moment for patients. Life changes in an instant as one is faced with not only medical decisions and complicated conversations around, but also fear, emotional strain and even financial hurdles. Many patients find themselves in a situation where they must learn, unlearn and relearn what they have known about health and treatment. These are the nonclinical effects of cancer, and they do not wait until the cancer is gone to manifest. They start to influence the patient’s life right away- and can last a lifetime.

The Merriam-Webster dictionary defines a survivor as “one who survives.” And to survive means” to continue to exist or live after” an event. Clearly then, diagnosis is an event, and a life changing one. The exact definition of cancer survivorship remains elusive, despite the use of the terms “cancer survivor” and “cancer survivorship” over the last several decades.

Cancer survivorship can be viewed as a time frame, so it could be developed on the basis of type and stage of the disease (i.e., after 2, 5, or 10 years); (2) as an outcome like no evidence of disease, complete remission, or cured; (3) as a stage or phase and, in this case, we must consider if primary treatment are ended or there are any recurrence; or finally (4) as a process where people live through different stages of illness. This fragmented view of cancer survivorship has such consequences as practitioners rejecting the term entirely as it may suggest a bias to only those who have undergone treatment and are alive.

An increasing number of advocates and healthcare workers are arguing the definition of cancer survivorship to be viewed just as “having cancer.” That the limitation of time to define who is and who is not a survivor should be done away with, simply. Because it’s not just about being “done” with cancer. It’s about living with, through, and beyond cancer. Whether someone is in remission, undergoing long-term maintenance therapy, or living with metastatic disease, they are a survivor—and their journey deserves support.

This broader view has big implications. It tells us we must care for the whole person—not just fight the disease. That means acknowledging a person’s emotional, social, and practical needs from day one.

While the following list may not exhaustively describe the challenges faced by cancer patients, it may give an insight into what it means to be a cancer survivor.

The Physical Burden

These challenges are obvious to the eye, and while some, like nausea and chronic pain may have some sort of solution with medication, others may not. Even if there is treatment, this may not be enough to restore health fully. A lot of the burden physically are also attributed to the direct effect of the treatment. It is assumed by many that side effects of treatment go away once treatment cedes that is not the case for most survivors.

· Fatigue That Doesn’t Go Away

Cancer-related fatigue is more than just being tired. It’s a deep, draining exhaustion that isn’t relieved by rest. Up to 80% of survivors experience it. Unlike everyday fatigue, it can linger long after treatment ends, affecting work, relationships, and day-to-day life.

· Chronic Pain

Whether caused by surgery, radiation, or chemotherapy, pain can persist. Some survivors experience nerve pain (neuropathy), while others deal with joint stiffness, muscle soreness, or headaches. Pain often goes unrecognized or untreated—especially if the person looks “healthy” on the outside.

· Hormonal and Endocrine Changes

Treatments like radiation or chemotherapy can affect hormone-producing glands. Survivors may experience early menopause, infertility, thyroid issues, or weight gain. For many, these changes are permanent and life-altering.

· Heart and Lung Complications

Certain cancer treatments—especially those involving chest radiation or chemotherapy drugs like anthracyclines—can damage the heart or lungs. Survivors may not feel these effects right away, but they’re at higher risk for conditions like heart disease later in life.

The Hidden Side: Emotional and Mental Health Challenges

Even after treatment, many cancer survivors struggle with the unseen emotional pain. This can cause a reduction of quality of life. One of the best outcomes of viewing survivorship through the new lens advocated for in this article is that it allows teams to help design care that adequately helps deal with the emotional toll of having cancer and dealing with treatment.

· Anxiety and Fear of Recurrence

A common worry among survivors is: What if the cancer comes back? This fear can lead to ongoing anxiety, frequent health checks, and hypervigilance. For some, it interferes with sleep, concentration, and peace of mind.

· Depression and PTSD

The trauma of cancer can leave lasting scars. Survivors are at higher risk for depression and post-traumatic stress symptoms, especially if their treatment was long or involved painful side effects. And because they may feel pressured to “stay positive,” they might not talk about how they really feel.

· “Chemo Brain”

Many survivors experience cognitive changes known as “chemo brain.” This includes memory lapses, trouble concentrating, or slower thinking. It’s frustrating and often misunderstood—even by doctors. While it usually improves over time, for some, it persists and affects work and personal life. I found this post by Dr Olubukola Ayodele insightful. Check it out.

Social and Economic Challenges

It should go without saying that the announcement of cancer diagnosis often means the potential for bankruptcy, especially in resource limited settings. Countries like Kenya and South Africa will see families sink into debt and poverty following diagnosis of a family member.

· Employment and Income Disruption– Many survivors return to work only to find they’re not able to perform as they did before. Some experience discrimination or job loss. Others can’t return at all. For young adults, cancer can derail education or delay career plans.

· Health Insurance Struggles- Even with insurance, cancer care can be financially devastating. Copays, lost wages, and long-term medical needs can lead to debt. Some survivors also face difficulty getting new coverage or life insurance due to their history.

· Inequities and Barriers to Care– Not all survivors have equal access to follow-up care. People from minority backgrounds, lower-income communities, or rural areas often face more obstacles—less access to specialists, fewer survivorship resources, and lower health literacy.

Cancer may end, but its impact doesn’t. Survivors live with reminders—physical, emotional, and financial—long after their last scan. By redefining survivorship as a lifelong journey starting at diagnosis, we can create systems that truly support people every step of the way.

Let’s move past the idea that survivorship begins when treatment ends. Let’s support survivors from day one.

Because cancer may change lives—but it doesn’t define them.”

More posts featuring Randiga Harnes.