Living with Cancer: A Step-by-Step Guide for Coping Medically and Emotionally with a Serious Diagnosis
Authors: Dr. Vicki A. Jackson, Dr. David P. Ryan, Michelle D. Seaton
Publication Year: 2017
Page Count: 368
Scope and Purpose
Living with Cancer is a comprehensive guide designed to empower patients diagnosed with cancer, as well as their caregivers, to understand and navigate the complex medical and emotional challenges posed by a serious cancer diagnosis. Authored by experts in oncology and palliative care, the book integrates the latest clinical knowledge with practical advice on symptom management, treatment decision-making, emotional coping, and end-of-life planning. It emphasizes a patient-centered, integrated approach combining oncology and palliative care to improve quality of life, symptom control, and emotional well-being throughout the cancer journey.
The book is structured into three main parts: Part I addresses understanding the diagnosis and initiating treatment; Part II focuses on managing symptoms and side effects; and Part III discusses coping with progressing cancer and end-of-life issues. Patient stories and clinical examples illustrate key concepts and practical applications.
Intended Audience
This book is intended primarily for patients newly diagnosed with cancer and their families or caregivers seeking clear, compassionate guidance on medical and emotional aspects of cancer care. It is also a valuable resource for healthcare providers who wish to support patients through integrated oncology and palliative care approaches. The language balances medical detail with accessibility, making complex topics understandable without oversimplification.
PART I: Making Sense of Your Diagnosis
Preface and Introduction
A cancer diagnosis often causes disorientation and emotional upheaval. Patients may struggle to understand medical terminology, interpret pathology reports, and communicate symptoms effectively. The authors introduce the integrated oncology-palliative care model developed at Massachusetts General Hospital, which combines cancer treatment with symptom management and emotional support from diagnosis onward.
This integrated approach has been shown to improve outcomes such as longer survival and reduced depression. The book aims to empower patients to actively engage with their healthcare teams, ask informed questions, and advocate for symptom control and quality of life.
Setting the Goals of Treatment
The initial oncologist appointment is critical but often emotionally charged and rushed. Patients are encouraged to prepare by bringing notes or a companion to help retain information. Key questions include confirmation of cancer diagnosis by pathology, staging, and treatment options.
Understanding the pathology report is essential. It includes cancer cell type (e.g., adenocarcinoma, squamous cell carcinoma, melanoma, sarcoma, leukemia/lymphoma), tumor size and grade (aggressiveness), surgical margins, immunohistochemistry markers, and molecular/genetic testing that may guide targeted therapies.
Cancer staging follows the TNM system for solid tumors, with stages 1 through 4 indicating increasing spread and decreasing curability. Patients should clarify whether the goal of treatment is cure, life prolongation, or symptom control and quality of life improvement. This understanding helps align treatment decisions with personal values.
Patients are advised to seek second opinions if diagnosis is uncertain, track symptoms carefully, and communicate openly about side effects. Emotional reactions vary widely; repeated explanations and support may be necessary.
Understanding the Biology of Cancer
Cancer cells differ from normal cells by uncontrolled growth, evasion of immune destruction, and ability to invade and metastasize. The TNM staging system details tumor size (T), lymph node involvement (N), and distant metastases (M), which guide prognosis and treatment.
Survival statistics are averages and should be interpreted cautiously; individual outcomes vary. Adjuvant therapy (chemotherapy or radiation after surgery) aims to reduce recurrence risk, though benefits are probabilistic rather than guaranteed.
Lines of treatment progress from first-line (initial standard therapy) to second- and third-line options as cancer evolves or resists therapy. National guidelines such as those from the NCCN inform best practices.
What Is a Liquid Tumor? (Hematologic Malignancies)
Hematologic cancers (leukemia, lymphoma, myeloma, myelodysplastic syndrome) differ fundamentally from solid tumors in diagnosis, staging, and treatment. Diagnosis often relies on blood tests and bone marrow biopsy rather than imaging.
Leukemias vary from chronic, manageable forms (CML, CLL) to acute, aggressive types (AML, ALL) requiring urgent treatment. Lymphomas range from indolent, incurable but manageable types to aggressive, potentially curable forms. Myeloma is rarely curable but increasingly treatable.
Bone marrow biopsy is a routine procedure providing critical diagnostic and staging information. Imaging, especially PET scans, is important for lymphoma staging. Brain involvement is assessed via MRI and spinal fluid analysis due to the blood-brain barrier.
Treatment often aims for cure even in advanced hematologic cancers, sometimes involving bone marrow transplant with associated risks such as graft-versus-host disease.
How to Prepare for Treatment
Radiation Therapy: Radiation damages cancer cell DNA and is used as primary, adjuvant, neoadjuvant, or palliative treatment. External beam radiation is most common, with treatment planning involving precise targeting. Side effects include fatigue, skin changes, and potential long-term risks. Proton beam therapy offers more precise targeting but is not standard for most adult tumors.
Chemotherapy: Chemotherapy includes traditional cytotoxic agents, hormonal therapies, immunotherapies, and targeted therapies. Administration routes vary (IV, oral, subcutaneous). Side effects differ by drug class and include nausea, hair loss, low blood counts, and organ toxicities. Combination regimens are common.
Chemotherapy is given in cycles with monitoring for toxicity and side effects. Portacaths may be used for easier venous access. Supportive medications manage side effects such as nausea and allergic reactions. Fertility preservation and family dynamics are important considerations.
Preparing for Treatment and Managing Appointments
Patients should designate one or two trusted individuals to attend appointments and serve as health care proxies. Open communication about treatment wishes ensures consistent understanding among family and care teams.
Routine infusion appointments are generally straightforward, while detailed treatment discussions occur during separate visits. Frequent blood tests and imaging scans guide treatment decisions.
Tests and Scans in Treatment
Blood Tests: Complete blood counts monitor white cells (especially neutrophils critical for infection defense), red cells (anemia), and platelets (bleeding risk). Growth factors may be used to boost counts. Blood chemistries assess electrolytes, kidney and liver function, which influence treatment safety.
Tumor Markers: Proteins secreted by cancer cells measured in blood help monitor tumor burden and treatment response but must be interpreted alongside imaging.
Imaging: CT scans are primary for monitoring tumor size and spread. PET scans detect metabolically active cancer cells, useful in lymphoma and lung cancer staging. MRI offers superior imaging of brain and liver metastases. Scan results guide treatment adjustments.
Genetic Testing: Germ-line testing identifies inherited cancer risk mutations; somatic tumor DNA testing guides targeted therapies.
How Am I Supposed to Cope with This?
The emotional impact of cancer diagnosis disrupts life plans and daily routines. Patients are encouraged to develop flexible coping strategies and a “plan B” focusing on achievable priorities.
Common feelings include powerlessness and searching for blame, which are normal but misplaced as cancer is largely due to random biological processes. The book advises avoiding the “tyranny of optimism,” recognizing that excessive pressure to stay positive can be counterproductive.
Coping strategies include distraction (engaging in enjoyable activities), optimism (planning pleasurable future events), gratitude, joy, meditation/prayer, humor, and “flow” (deep engagement in activities). Flexibility and self-kindness are emphasized.
Social coping involves managing relationships by distinguishing close supportive circles from more distant contacts, communicating needs clearly, and asking for help with specific tasks. Tools such as group emails or websites can facilitate communication and support coordination.
Physical changes from cancer and treatment (hair loss, neuropathy, surgical alterations, steroid effects) challenge self-image and sexuality. Open communication with partners and medical teams about sexual health and intimacy is encouraged, with available treatments for dysfunction.
PART II: Managing Symptoms and Side Effects
Controlling Nausea
Nausea in cancer patients arises from diverse causes including chemotherapy toxicity, gastrointestinal obstruction, infections, neurologic issues, sensory triggers, and anxiety. The mnemonic VOMITING helps assess causes.
Chemotherapy-induced nausea is managed with antiemetics from five classes: steroids, benzodiazepines, dopamine antagonists, 5HT3 antagonists, and NK-1 antagonists. Regimens depend on the emetogenic potential of chemotherapy drugs.
Side effects of antiemetics include constipation, requiring proactive laxative use. Steroids can cause insomnia and elevated blood sugar. Benzodiazepines help with anticipatory nausea. Patients should take antiemetics as prescribed and report persistent symptoms promptly.
Other causes such as opioid-induced nausea, gastroparesis, constipation, and upper airway irritation are addressed with targeted treatments.
Managing Constipation, Diarrhea, and Bowel Obstruction
Cancer and its treatments disrupt bowel motility, leading to constipation or diarrhea. Opioids and antiemetics commonly cause constipation, which requires prescription laxatives rather than fiber supplements. Dehydration and certain medications exacerbate constipation.
Diarrhea may result from chemotherapy, infections, surgery, or tumor infiltration. Management includes hydration and antidiarrheal medications such as loperamide and octreotide (for hormone-related diarrhea).
Bowel obstruction from tumor growth may require surgery, stenting, or venting gastrostomy tubes.
Minimizing Pain
Pain is common but often undertreated due to patient reluctance or misconceptions. Assessment includes intensity, quality, location, timing, and impact on function.
Management uses a stepwise approach: nonopioid analgesics (NSAIDs, acetaminophen), adjuvants (gabapentin, antidepressants), and opioids (short- and long-acting). Methadone is effective for neuropathic pain but requires careful monitoring.
Timing of medication is critical to prevent pain escalation and sedation. Opioid side effects include constipation, nausea, and sedation; constipation requires prophylactic laxatives. Addiction is rare when opioids are used appropriately.
Advanced pain management may involve nerve blocks, intrathecal pumps, radiation therapy, or patient-controlled analgesia.
Managing Shortness of Breath
Dyspnea is distressing but often not due to low oxygen levels. Causes include deconditioning, lung inflammation, infections, blood clots, anemia, fluid accumulation (pleural effusion, ascites), cancer spread, and anxiety.
Diagnosis involves vital signs, oxygen saturation, imaging, and echocardiography. Treatments target underlying causes and may include drainage, steroids, antibiotics, anticoagulation, transfusions, and physical therapy.
Supplemental oxygen is used if saturation is low; low-dose opioids can relieve breathlessness sensation. Anxiety management includes cognitive behavioral therapy and medications.
Weight Loss and Nutrition
Weight loss during cancer treatment is common and multifactorial, caused by decreased appetite, nausea, taste changes, early satiety, depression, mucositis, pancreatic insufficiency, and anorexia-cachexia syndrome.
Management includes small frequent meals, calorie-dense foods, appetite stimulants (megestrol acetate, dronabinol, olanzapine, mirtazapine), and treatment of underlying causes. Steroids may stimulate appetite but have significant side effects.
Artificial nutrition (enteral or parenteral) is used selectively, with consideration of risks and benefits. Nutritional supplements are common but require disclosure to medical teams due to potential interactions.
Infection and Fever
Cancer and chemotherapy suppress immunity, increasing infection risk. Fever ≥100.5°F or other infection signs require prompt medical attention. Febrile neutropenia is a medical emergency.
Blood tests monitor neutrophil counts; growth factors may be used to boost immunity. Infection management balances treatment goals and quality of life, especially in advanced cancer.
Bleeding and Clotting Issues
Cancer disrupts hemostasis, increasing risks of thrombosis and bleeding. Blood thinners are commonly used but increase bleeding risk. Low platelets from chemotherapy or cancer cause bleeding tendencies.
Management includes transfusions, medications, surgery, radiation, and embolization. Patients should report bleeding promptly. Careful monitoring is essential to balance clotting and bleeding risks.
Fatigue
Fatigue is the most common cancer symptom, distinct from normal tiredness and often unrelieved by rest. Causes include treatment effects, anemia, infection, hormonal imbalances, pain, medications, poor nutrition, sleep disturbances, anxiety, and deconditioning.
Management includes energy conservation, exercise, sleep hygiene, symptom control, and medications such as stimulants or short-term steroids. Psychological support is important.
Depression and Anxiety
Clinical depression affects 15-25% of cancer patients and worsens outcomes if untreated. Symptoms overlap with cancer effects, complicating diagnosis. Talk therapy and medications (SSRIs, SNRIs, mirtazapine, others) are effective.
Anxiety is common and may impair function; management includes medications, relaxation techniques, and psychosocial support. Stigma about psychiatric medications is addressed.
PART III: Dealing with Progressing Cancer
They Tell Me the Cancer Is Progressing
Cancer progression despite treatment marks a shift to symptom control and quality of life focus. Patients may need time to accept incurability. Second- and third-line therapies often have limited efficacy.
Symptom management includes advanced pain control (opioid rotation, PCA pumps, radiation), addressing eating difficulties (surgery, stents, gastrostomy tubes), and managing bone marrow failure with transfusions.
Fatigue worsens; patients are advised to conserve energy. Interest in alternative or overseas therapies is common but often lacks evidence and may cause harm.
Clinical trials offer access to experimental treatments but require informed consent and may involve more intensive monitoring.
Open communication with family and medical teams is encouraged to reduce isolation and anxiety.
Managing Anxiety and Negative Thinking
Anxiety should be treated to prevent disruption of daily life. Coping strategies include talk therapy, medications, and the “box” technique to compartmentalize worries. Excessive positive thinking can increase anxiety by denying uncontrollable aspects.
Medications such as SSRIs and short-term lorazepam are used. Alternative agents like olanzapine may avoid confusion when combined with pain medications.
How Does Cancer Affect My Brain?
Cognitive impairments (“chemo brain”) arise from chemotherapy, fatigue, anxiety, medications, radiation, metastases, and depression. Delirium is an acute confusion state requiring urgent evaluation.
Brain metastases cause neurologic symptoms and are treated with surgery, stereotactic radiosurgery, whole-brain radiation, and steroids. Rehabilitation therapies may aid recovery.
When Chemotherapy Is No Longer Effective
Performance status guides treatment decisions; chemotherapy is generally not recommended for patients with poor functional status (PS 3-4) due to low benefit and high risk. Hematologic malignancies may be exceptions.
Patients should discuss goals and preferences with oncologists to align treatment with quality of life.
Marginally Effective Drugs and Experimental Therapies
After standard therapies fail, new drugs often have low response rates and persistent side effects. Off-label use is rarely effective and may not be covered by insurance.
Unproven overseas clinics offering alternative therapies lack evidence and may cause harm or financial strain. Physicians emphasize living well rather than pursuing unproven cures.
Understanding the Dying Process
Most cancer deaths occur via gradual decline over months, with subacute or acute declines in some cases. Hospice and palliative care focus on symptom management and quality of life.
Patients may experience fatigue, decreased appetite, increased symptoms, and require family support. Communication of goals and contingency planning are essential.
Acute events (e.g., bleeding, embolism) may require emergency care; comfort-focused care is prioritized when prognosis is poor.
End-of-Life Care Settings
Home hospice provides nursing, medication, social work, and chaplaincy support, with family caregivers providing most care. Residential and inpatient hospice offer 24-hour nursing for symptom control and caregiver respite.
ICU deaths are often traumatic and may not align with patient goals. Advance care planning, including health care proxies and POLST forms, guides treatment preferences.
Symptom Management in Final Days
Common symptoms include pain, breathlessness, noisy breathing, confusion, and anxiety. Medications include opioids, haloperidol, lorazepam, and anticholinergics. Hospice teams provide comfort care kits and active symptom management.
Family education on medication use and signs of dying supports quality of death.
Family Dynamics and Presence at Death
Family stress can exacerbate conflicts; medical teams may recommend care settings accordingly. Patients may “hold on” until loved ones arrive. Open communication and expressions of love, forgiveness, and gratitude facilitate closure.
Signs of Death and Bereavement
Signs include unresponsiveness, absence of breathing, fixed pupils, and pale skin. Hospice nurses verify death and coordinate postmortem care.
Bereavement is variable and unpredictable; hospice offers support services. Families often maintain ongoing relationships with the deceased and seek follow-up conversations.
Notable Strengths and Usefulness in This Database
Living with Cancer stands out for its integrated approach combining oncology and palliative care from diagnosis through end of life. It provides detailed, practical guidance on understanding medical information, treatment options, symptom management, and emotional coping. The inclusion of patient stories and clinical examples enhances relevance and accessibility.
The book thoroughly addresses common and complex symptoms, treatment side effects, psychosocial challenges, and end-of-life planning, making it a valuable resource for patients seeking to actively participate in their care and improve quality of life. Its emphasis on communication, shared decision-making, and realistic hope aligns with best practices in cancer care.
For a cancer-options reference database, this book offers comprehensive, evidence-informed summaries of diagnostic processes, treatment modalities, symptom control strategies, and psychosocial support, supporting informed patient choices and multidisciplinary care coordination.
Limitations and Cautions
The book reflects knowledge and standards as of 2017; some emerging therapies and guidelines may have evolved since publication. While it covers a broad range of cancers and treatments, individual patient circumstances vary widely, and clinical decisions should always be personalized in consultation with healthcare providers.
Some topics, such as experimental therapies and physician aid in dying, are presented with balanced caution but may require updates based on evolving legal and clinical landscapes.
Author Credentials and Background
Dr. Vicki A. Jackson is a palliative care specialist; Dr. David P. Ryan is a medical oncologist; Michelle D. Seaton is a medical writer. Their combined expertise underpins the book’s authoritative yet compassionate tone, integrating clinical rigor with patient-centered care principles.