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End-Stage Ovarian Cancer: Expectations and Emotional Care

Posted on February 22, 2022
Medically reviewed by
Howard Goodman, M.D.
Article written by
Anastasia Climan

Ovarian cancer is classified into stages based on the level of disease progression, just like other types of cancer. Stage 4 is the most advanced and is also referred to as advanced stage or late stage. In stage 4 cancer, cancerous cells have spread to areas further away from the ovaries — such as the fluid surrounding the lungs or to the spleen, liver, bones, lungs, or the upper body lymph nodes. As ovarian cancer approaches the end stage, treatment options are unlikely to provide any benefit. At this time, your treatment goals may shift from fighting cancer to symptom management and maintaining comfort.

During this time, you might face decisions about end-of-life care, including advance directives and setting up your will. If you can talk with your loved ones about the future, it’s helpful to have those conversations and avoid putting them off. One member of MyOvarianCancerTeam stated: “With my recurrence, I sat down with my adult children and told them what I wanted. We discussed memorial plans, caretaking, and my will. We talked about how they will help each other when that time comes … I don’t think sickness and dying should be taboo subjects.”

There’s no right way to feel during end-stage cancer. Some people view it as a peaceful time to reflect, while others experience disbelief, anger, fear, or depression. It’s normal to go through a range of ups and downs as you process the reality of end-stage cancer. Hearing from others who relate to your circumstance can help you understand what’s happening and remind you that you’re not alone.

Making Treatment Decisions

Most people with stage 4 ovarian cancer have already tried various treatments and may or may not choose to join a clinical trial. One member of MyOvarianCancerTeam wrote, “I have stage 4. I have gone through chemo, oral meds, and trial meds. All have stopped working for me. But I am starting a new trial medicine. We have to keep believing that God has a purpose for each of us even if we don’t know what it is or understand.”

Only you and your doctor can decide when to pursue further treatment or when to take a break or stop. Anticipating the physical and emotional challenges ahead can help you seek the best resources for your current situation and develop a care plan for your future.

Physical Changes

Several changes may occur among people with advanced cancer. The most common symptoms include:

  • Constipation
  • Cough
  • Delirium
  • Fatigue
  • Feeling cold
  • Fever
  • Hallucinations
  • Irregular heartbeat
  • Low blood pressure
  • Shortness of breath
  • Trouble swallowing
  • Weight loss

Your health care team can help manage these issues with pain medications, hydration, reducing the doses or frequency of other treatments, adjusting your position, laxatives, and over-the-counter cough medications. Deciding in advance whether you’d prefer to be admitted to the intensive care unit or remain at home will help guide the care you receive.

Potential Complications

People with advanced ovarian cancer are vulnerable to several complications that may include:

  • Failure of the heart, lungs, kidneys, or liver
  • Hemorrhage (heavy bleeding in a short time)
  • Infections
  • Loss of consciousness

Talk to your doctor and loved ones about your wishes regarding aggressive interventions if your condition worsens suddenly. For instance, you may opt out of certain life-extending measures (like being put on a ventilator or given antibiotics or nutritional support) if these treatments are not expected to improve your quality of life.

Palliative Care and Hospice

Palliative care can help people with any stage of ovarian cancer to maintain an optimal quality of life. A palliative care team includes various support people, such as social workers, nutritionists, nurses, and chaplains. You may receive complementary therapies, like acupuncture or massages, aimed at pain relief, psychosocial support, and well-being. Sometimes, supportive care is given while you’re an inpatient in the hospital or at a long-term care facility, and other times, you can get this type of care at an outpatient facility or in your own home. If your oncologist hasn’t already mentioned it, ask for a palliative care referral. Your insurance carrier can let you know whether your plan covers the cost of services.

Although palliative care can support those still undergoing traditional medical treatment, hospice is intended for people who are no longer pursuing curative treatment for their cancer. You may discontinue ovarian cancer treatment if medical intervention is no longer effective or if your body can’t withstand the intensity of treatment. Hospice is a higher level of supportive care that usually includes 24-hour, on-call support, and training and respite care for family members or caregivers. Your specific services are tailored based on your physical, emotional, and spiritual needs.

Members of MyOvarianCancerTeam provide suggestions on how to find the right hospice provider. One member said, “You will need to get a doctor involved to get insurance to cover it. You might want to ask for recommendations on Facebook or Nextdoor apps. Think about what services you need most, and ask the provider what services they provide.”

Although industry guidelines advocate for the use of palliative care and hospice, people with ovarian cancer are often subject to aggressive treatments through the end of life. Hospice can help cut down on unnecessary testing and medication to maximize your quality time with loved ones. Medicare should cover the cost of hospice if you meet certain requirements. As soon as you think you may need them, ask your oncologist about hospice services to avoid excessive medical interventions. Be sure to take advantage of the full benefits available to you and your loved ones.

Finding Emotional Support

End-stage ovarian cancer is an emotional diagnosis for everyone involved. Some members of MyOvarianCancerTeam find it most challenging when they have downtime. “As long as I can keep my mind occupied, I do OK,” one member wrote. “But as soon as I have downtime, my thoughts are harder to control. I pray a lot. It helps.”

Achieving a balance between addressing your emotions and keeping your mind occupied with other hobbies, passions, or distractions can be tricky. For example, you may feel better after you’ve had a chance to vent or cry, or you might prefer to take a few hours of time off from thinking about your cancer diagnosis.

For Caretakers

Caregivers are often deeply affected by the distress of cancer and require extensive support as their loved one’s health declines. Fortunately, hospice care isn’t just beneficial for the person with ovarian cancer. Caregivers and family members can also be given support to cope with their loved one’s terminal illness. In addition to resources provided by hospice, caregivers should consider joining a supportive community, either online or in person.

Caregivers should take time to think about the future and plan for changes ahead. Rather than avoiding them, having painful conversations will help ensure that a caregiver fully understands their loved one’s wishes. For example, caregivers may need to make new living arrangements or prepare children for the death of a loved one. The social worker at the hospital can help caregivers find the resources required to address various aspects of end-stage cancer.

Talk With Others Who Understand

MyOvarianCancerTeam is the social network for people with ovarian cancer. On MyOvarianCancerTeam, more than 3,500 members come together to ask questions, give advice, and share their stories with others who understand life with ovarian cancer.

Are you a caregiver or living with the end stages of ovarian cancer? What coping strategies do you turn to during this challenging time? Share your experience in the comments below, or start a conversation by posting on MyOvarianCancerTeam.

All updates must be accompanied by text or a picture.
Howard Goodman, M.D. is certified by the American Board of Obstetrics and Gynecology and specializes in the surgical management of women with gynecologic cancer. Review provided by VeriMed Healthcare Network.. Learn more about him here.
Anastasia Climan is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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