Receiving a cancer diagnosis is a life-altering event surrounded by stigma and fear, often leading to significant anxiety about how sharing this news might affect personal and professional lives. Common concerns may include fears about job security, professional relationships being compromised, burdening loved ones, and more, raising the difficult question: does keeping your diagnosis a secret truly help, or does it potentially add to the stress and challenges already faced?

At the same time, according to the article “Diagnosis Disclosure in Cancer Patients – when the Family says “No!” it's not uncommon for families to oppose the disclosure of a cancer diagnosis, influenced by a mix of love, protective instincts, and fear of the psychological impact such news could have on the patient. Historically, concealing health information was more common, reflecting a different era's approach to medical ethics focused more on protective paternalism than on patient autonomy. Today, while acknowledging the patient's right to know and participate in their care decisions, it's crucial to navigate carefully the family's emotional needs and the cultural context that might influence disclosure preferences.

Why Do Some People Keep Their Cancer Diagnosis a Secret?

Discussing a cancer diagnosis can be an incredibly sensitive matter, both for those diagnosed and their loved ones. The decision to disclose the diagnosis is fraught with concerns about the potential impact on emotional well-being.

At times, we might opt to withhold the information for various reasons, such as:

Loved Ones' Perspective:

• Protective Instincts: There is a strong desire to shield the patient from potentially distressing news that might overwhelm them emotionally.
• Concern for Emotional Health: Families often worry that the news might trigger depression or a severe emotional downturn.
• Preserving Hope: Loved ones might fear that knowing the full severity of the illness could diminish the patient’s will to fight or continue with daily life.
• Perceived Severity: The diagnosis is sometimes viewed as a terminal verdict, prompting a protective silence to spare the patient from despair.
• Assessment of Capacity: There may be a belief that the patient, whether due to age or emotional capacity, might not fully grasp or cope with the gravity of the diagnosis.

Patient Perspective:

• Avoiding Burdens: Many choose to keep their diagnosis private to prevent burdening friends and family with their health issues.
• Dodging Discomfort: To sidestep potentially awkward conversations that a cancer diagnosis can trigger.
• Protecting Employment: Concerns over job security can lead individuals to conceal their health status, fearing professional repercussions.
• Controlling the Narrative: Some believe that by managing how and when the information is shared, they can maintain some control over a situation that feels overwhelmingly uncertain.
• Avoiding Pity: Patients often withhold their diagnosis to avoid being treated differently or pitied, striving to maintain normalcy in their relationships.

These actions are driven by love and the desire to shield a loved one from the distressing realities surrounding their illness, both in terms of diagnosis and prognosis. While the truth can be painful, the consequences of deception may ultimately inflict even greater harm.

Understanding Family Dynamics: The Challenge of Disclosure

When a family faces a cancer diagnosis, the decision about whether to disclose the illness can create significant emotional tension. This section explores the delicate balance families must navigate, weighing the desire to protect against the potential benefits of openness.

Myth or Fact: “If Left Unspoken, He/She Remains Unaware.”

Often, concealing a cancer diagnosis from a loved one can seem like an act of protection, but it may not shield them from the truth. Despite efforts to hide the diagnosis:

• Family Dynamics: Changes in family dynamics and communication can become noticeable, especially when individuals avoid discussing observable physical changes. Alternatively, in certain situations, the patient may become aware of hushed discussions occurring among the family members.
• Patient Intuition: Many patients are highly attuned to their bodies. Without clear information, they might still sense something is wrong based on symptoms like weight loss, pain, fatigue, or other indicators. As such, even without explicit information, they may pick up on cues hinting at a more severe health condition.
• Accidental Disclosures: In medical environments, casual interactions or overheard conversations can inadvertently reveal a diagnosis. For instance, patients often exchange information and provide mutual support, and a careful listener may pick up on the cues that point to a cancer diagnosis. Moreover, details such as the clinic's name, the nature of medical appointments, and overheard discussions in healthcare settings can strongly imply a cancer diagnosis.
• Growing Distrust: Continued secrecy may potentially complicate relationships, leading to distrust as patients notice inconsistencies in explanations about their health or medical appointments.

The Consequences of Keeping Cancer a Secret

Keeping a cancer diagnosis secret can deeply affect the individual, leading to:

• Isolation and Fear: Secrecy can intensify feelings of isolation, fear, and uncertainty. Without open discussions, patients may struggle alone with their symptoms and fears. For instance, a patient might experience unexplained stomach pain, but without being informed about the cancer condition, they are left in the dark regarding the cause of the discomfort. The confusion and lack of information can leave them feeling profoundly alone on their journey, with no one to talk to about their experiences or the challenges they are facing. Moreover, for those who are tech-savvy, there is a tendency to search for information online through websites or social media to address their questions. Consequently, seeking information online may result in receiving inaccurate details that do not align with their specific medical circumstances.
• Misinformation: In search of answers, patients might turn to unreliable sources, from hearsay in their social circles to inaccurate online information, leading to misconceptions and increased anxiety. In certain cases, individuals may gather information from television programmes or newspapers, adding complexity and potentially receiving inaccurate details tailored to their specific condition.
• Emotional Burden: Not knowing the full extent of their health situation prevents patients from fully understanding their condition, which can exacerbate stress and anxiety.
• Family Communication Breakdown: When families avoid discussing the diagnosis or its implications, it can prevent necessary planning for future care or personal affairs, leaving critical decisions unmade and adding emotional strain on all involved. In certain situations, when everything is carefully kept within a secret bubble, patients are caught off guard, unprepared for the imminent and unexpected arrival of death. This can lead to unattended matters, unresolved issues, and unfulfilled wishes. Additionally, conflicts among family members regarding cancer treatment preferences may contribute to the choice of keeping the medical information undisclosed. This responsibility to keep a significant secret may trigger feelings of guilt, contributing to a more intricate grief process for the family. Following the loss, those family members involved may struggle with regret, pondering 'what-if' scenarios.

Navigating the Disclosure of a Cancer Diagnosis: Benefits of Openness

While keeping a cancer diagnosis secret may seem to spare immediate pain, open communication may also have profound benefits:

• Enhanced Support: Open discussions about the diagnosis may be able to foster better emotional and practical support from family and healthcare providers.
• Informed Decision-Making: Patients who are informed will be better able to participate in decisions about their care and personal affairs, potentially reducing uncertainty and anxiety.
• Emotional Relief: Sharing the burden can help manage the emotional weight of the diagnosis, allowing patients and families to face the future with a united front.
• Trust and Transparency: Maintaining transparency may help preserve trust between patients, families, and medical professionals, which is crucial for effective care and support.

Navigating the Challenges of Cancer Diagnosis Disclosure

To summarize, a cancer diagnosis brings about substantial emotional shifts in patients and their families, and concealing this information can inadvertently cause more harm than good.

1. Early Suspicion: Patients may sense secrecy when inquiring about physical changes related to cancer, and symptoms may raise suspicions even before a formal diagnosis. Interactions with other patients and cues during medical visits may inadvertently reveal the diagnosis as well.
2. Increased Isolation: Keeping the cancer diagnosis hidden heightens isolation, fear, and uncertainty for the patient, who might resort to social circles or online sources, risking misinformation. The absence of accurate information leads to patients imagining worst-case scenarios, intensifying anxiety.
3. Family Dynamics and Guilt: Excluding the patient from critical discussions about treatment and end-of-life decisions, along with withholding the diagnosis and progression, family members may feel guilty, and it complicates the grieving process. The absence of patient guidance in decision-making, especially with differing opinions among family members, adds emotional strain.

Do I Need to Tell Everyone I Have Cancer?

Deciding to disclose your cancer diagnosis isn't just a challenge for families; patients themselves often grapple with whom to inform.

However, whether it involves concerns about reactions or the impact on one’s personal and professional life, the decision to share is deeply personal and ultimately yours to make.

How to Tell People You Have Cancer

Sharing your cancer diagnosis with family and friends can be daunting.

Regardless, it's important to communicate in a way that feels right for you. You may choose to share the news in person, over the phone, or even in writing. Start the conversation gently, perhaps by expressing that you've been feeling unwell and have some news. Share as much or as little as you feel comfortable with, and let them know if there are days you'd prefer not to discuss your condition.

Remember, it’s okay to ask for space or a pause if the conversation becomes overwhelming.

When Should You Tell Your Family You Have Cancer?

Timing is crucial when deciding to tell your family and loved ones about your cancer. It's generally advised to inform them soon after your diagnosis and before starting treatment, providing a safe and comfortable setting for the discussion. This approach ensures they are aware of your needs and can offer support throughout your treatment journey.

Announcing You Have Cancer

So, how do you tell your friends, family, and loved ones you have cancer? Here are some tips for discussing your cancer diagnosis:

• Choose Your Method: Whether face-to-face, by phone, or through written communication, select the method that ensures comfort and clarity.
• Ease Into the Topic: Begin with general remarks about your health before sharing your diagnosis.
• Clarify What They Know: Asking what your loved ones already know can prevent unnecessary repetition.
• Express Your Concerns: Share your primary worries to help them understand your perspective.
• Communicate Gradually: Provide information slowly and ensure understanding before continuing.
• Share Your Feelings: Be honest about your emotions, which can foster deeper support from your listeners.
• Handle Silence: Allow for quiet moments; they can be powerful.
• Be Open: Keeping everyone informed from the start can prevent feelings of betrayal or hurt later.
• Delegate Communication: If you find it tiring to talk about your diagnosis repeatedly, ask someone you trust to share the news on your behalf.
• Maintain Normalcy: It's fine to have conversations about day-to-day topics, helping preserve a sense of normalcy.

How to Manage the Reactions of Others

When you share your cancer diagnosis, reactions may vary, and not everyone will know how to respond supportively. It's important to:

• Acknowledge Their Feelings: Recognise that your news may be difficult for others to process.
• Guide the Conversation: Help others express their feelings by sharing your observations of their reactions.
• Encourage Listening: If someone struggles to discuss the topic, ask them simply to listen.
• Diversify Discussions: If cancer becomes a heavy topic, it’s okay to switch the conversation to lighter subjects.
• Take Breaks: Don’t hesitate to pause the discussion if it becomes too challenging.

Embracing Support and Moving Forward

If you or someone you know is navigating a cancer diagnosis, remember that reaching out for support is crucial. Whether it's ovarian cancer or any other type of cancer, specialists are available to guide you through your treatment options and support needs. Engaging openly with healthcare providers and loved ones can significantly ease the journey, providing both practical and emotional relief.

Written by:
Ms Jaclyn Lee, Supportive and Palliative Care Clinician, OncoCare Cancer Centre