The Cancer Survivorship Iceberg: What Lies Above and Beneath
Cancer survivorship is often portrayed as a triumphant experience, focusing on recovery and the visible signs of healing. However, beneath that surface, survivors can experience a variety of physical, emotional, and social challenges that can be just as difficult to manage as the treatment itself. The Cancer Survivorship Iceberg is a powerful metaphor for these hidden struggles, reminding us that there’s more to the story than what meets the eye.
Our survivor team at OncoveryCare put together our own Survivorship Iceberg and included examples of some of the things people saw on the surface, but what was also going on for us at different times that people couldn’t see!
What was above and below the surface in your iceberg? Send us your thoughts from your own experience - we are always learning from the different perspectives of our own community.
What People See: Above the Water
1. Hair Growing Back
After chemotherapy, hair regrowth is often seen as the first visible sign that a person is on their way to recovery. It’s a symbol of a return to "normal." For many survivors, regaining their hair brings relief and a sense of restored identity, but this very public-facing physical change only scratches the surface of what they might be enduring emotionally and physically. A lot of times, hair grows in differently, sometimes not resembling the same hair from “before”. Sometimes, survivors can continue to have hair-thinning, especially if taking certain medications like hormonal therapy, and this can be very triggering.
2. Back to “Normal”
Many people assume that once treatment ends, a survivor returns to life as it was before cancer. Returning to work, resuming household duties, or going back to social activities are often seen as milestones of "normalcy." However, this overlooks the lingering physical fatigue and emotional trauma that can make this transition incredibly difficult. Survivors may feel pressure to act like everything is fine, even when it isn’t.
3. Strength & Resilience
Cancer survivors are often celebrated for their bravery and strength. While it’s true that surviving cancer can take immense emotional, mental, and physical strength, this focus on strength can unintentionally diminish the legitimacy of their ongoing and underlying struggles. The expectation to always be strong can prevent survivors from seeking the help they need to manage their continued challenges.
4. Gratitude
There’s an implicit expectation that survivors should always be grateful for their recovery. Gratitude is a powerful and healing emotion, but it can also lead to feelings of guilt if a survivor experiences sadness, anger, or frustration about what they’ve been through. Survivors are often hesitant to express these emotions because they feel that they should just be thankful to be alive.
What People Don’t See: Below the Waterline
1. Scars & Trauma
Cancer treatment leaves physical scars from surgeries, radiation, or medical devices like ports. However, the emotional trauma from the battle is often less visible but just as real. Many survivors experience post-traumatic stress from their diagnosis and treatment, which can manifest in unexpected ways and linger for years. These internal scars are a constant reminder of the disease.
2. Change in Sex Drive
For many survivors, cancer treatments can significantly affect how their body looks or feels, and can sometimes affect hormone levels, leading to changes in sexual desire, ability, and function. This can create feelings of frustration, body image issues, or relationship strain. Survivors may find it difficult to talk about these changes, further isolating them from the support they need to address this very personal aspect of recovery.
3. Financial Strain & Debt
Even with health insurance, cancer treatment is expensive. Costs that go unacknowledged include parking, co-pays, medicines, and it goes on. Survivors can face overwhelming medical bills, loss of income due to time off work, and ongoing healthcare costs. The financial burden of survivorship adds stress and anxiety that can last long after treatment ends, complicating an already challenging recovery process.
4. Hot Flashes
For those who undergo chemotherapy, radiation, or hormone therapy, menopausal symptoms like hot flashes are a common and often disruptive side effect. Hot flashes can affect quality of life, causing discomfort and sleepless nights. These symptoms may persist for months or even years after treatment, adding an additional layer of physical struggle.
5. Mental & Physical Fatigue
Fatigue is one of the most common and long-lasting side effects of cancer treatment. It’s not the kind of tiredness that a good night’s sleep can fix—this fatigue can be overwhelming and constant. Survivors may struggle with daily tasks, work, and social activities due to this persistent exhaustion, yet they are often expected to return to their pre-cancer productivity levels.
6. Loss of Identity & Sense of Self
The journey through cancer often changes how a person sees themselves. Treatment can strip survivors of their previous roles, routines, and sense of independence. For many, there is a profound sense of identity loss that accompanies survivorship. They may no longer recognize themselves physically or emotionally and may feel disconnected from the person they were before the diagnosis.
7. Frequent Appointments & Check-ups
Even after treatment ends, cancer survivors face a future filled with regular medical appointments, scans, and blood tests. These check-ups are crucial for monitoring recurrence but can also be a source of ongoing anxiety. Each follow-up visit may bring back memories of the original diagnosis, creating a recurring cycle of worry and stress.
8. Dietary Changes & Food Aversions
Cancer treatment can alter taste buds and digestive systems, leaving survivors with food aversions or restrictions. They may need to adopt special diets to accommodate these changes, and once-enjoyed foods might no longer be palatable. This adds an extra burden to daily life and can make eating, an essential and usually pleasurable activity, a stressful experience.
9. Brain Fog
Known as "chemo brain," cognitive impairment is a common but often underestimated side effect of cancer treatment. Survivors may have difficulty concentrating, remembering details, or processing information. This can significantly impact their ability to function in their personal and professional lives, often leading to frustration and a sense of inadequacy.
10. Anxiety
Cancer survivorship is often accompanied by anxiety—particularly the fear of recurrence. Survivors may find themselves hyper-aware of every ache or change in their body, wondering if it’s a sign that the cancer has returned. This ongoing worry can overshadow even the most joyful moments, making it difficult to fully embrace recovery.
11. Weight Gain or Weight Loss
Weight fluctuations are common during and after cancer treatment. Steroids, chemotherapy, and decreased physical activity can cause weight gain, while nausea, loss of appetite, and digestive issues can lead to weight loss. These changes can affect self-esteem and body image, adding another dimension to the survivor’s emotional and physical recovery.
12. Fear of Recurrence
Perhaps the most pervasive challenge for cancer survivors is the constant fear that the cancer might return. This fear can be all-consuming and doesn’t go away even with good test results. It’s a shadow that follows survivors long after treatment, influencing how they approach their health, their relationships, and their future.
13. Change in Relationships & Friendships
Surviving cancer can change the dynamics of relationships. Some friends or family members may distance themselves, unsure of how to provide support, while others may become closer. Survivors often find that their social circles evolve, sometimes for better and sometimes for worse, as they navigate their new reality.
14. Skin Sensitivity
Cancer treatments like radiation and chemotherapy can leave survivors with long-term skin sensitivities, including dryness, rashes, or easy bruising. This may require special skincare routines or additional precautions to prevent further damage, adding another daily reminder of the lasting impact of treatment.
Final Thoughts:
The Cancer Survivorship Iceberg serves as a reminder that while a survivor may look like they’re thriving on the surface, there are often invisible battles happening beneath. By understanding and acknowledging these hidden challenges, we can provide more compassionate and comprehensive support to those navigating the complexities of life after cancer.
We have resources available to educate on topics like:
- Grief, Depression, Anxiety and Survivorship
- Movement and Exercise
- Alcohol and Survivorship
- Sex and Survivorship
- Neuropathy
- Cancer Related Fatigue
If you are experiencing any of these things, there are a lot of resources available to you for support, help, and assistance.
Sources:
- American Cancer Society. "Physical Side Effects of Cancer Treatment."
- National Cancer Institute. "Survivorship: Support During and After Cancer Treatment."
- Mayo Clinic. "Chemo Brain: Cancer-Related Cognitive Impairment."
- CancerCare. "Financial Assistance for Cancer Survivors."
- Breastcancer.org. "Emotional and Physical Challenges Post-Treatment."
These sources offer additional details about the various aspects of cancer survivorship, providing helpful guidance and insight into the ongoing journey many survivors face.
