Ovarian Cancer: Helping Caregivers Communicate and Cope
by Sandra Ray, Staff Writer

Teresa Combs, mother of three, lives in Granbury, TX and is an ovarian cancer survivor. She was 23 years old when first diagnosed with the disease. When questioned about her experience, she said, “I wish my caregivers had been more educated. I also wish I had been more educated about ovarian cancer. There are so many things we know now that weren’t available when I had cancer.”

Combs is not alone. Ovarian cancer has been a mystery to many, although since it is the eighth most likely form of cancer to strike women, it shouldn’t be. It also has the unfortunate “claim to fame” of being fifth on the list of most likely to cause female cancer-related deaths.

Ovarian cancer may be difficult for many people to discuss. Experts say one reason is that caregivers have a natural protective tendency, feeling that the more the cancer is discussed the more stress it causes.

Opening the Lines of Communication:

There’s no doubt that a cancer diagnosis is difficult and stressful. It is important to keep the lines of communication open so that the caregiver is aware of what the patient is thinking and feeling. At the same time, caregivers need to encourage the patient to discuss feelings when they arise, while respecting the need for personal space.

Recognizing that negative emotions will arise can help both the patient and the caregiver. For example, the patient may need reassurance that it is OK to feel sad or frustrated. Expression of those emotions is, in fact, healthy and encourages the patient to continue releasing feelings that can adversely affect her health if they are otherwise “bottled up.”

Other ways to keep communication flowing smoothly include

  • Encouraging your loved one to keep a journal

  • Setting aside time each day or week for sharing about issues that may have arisen

  • Learning basic relaxation techniques to keep tension and stress low

  • Seeking out support groups and additional resources for both patients and caregivers so each have opportunities for “venting” to individuals who understand the situation

  • Studying facts and figures about ovarian cancer and staying abreast of the latest scientific studies

Most experts agree that keeping communication open and honest will help reduce stress and avoid confusion during the various stages of the disease’s diagnosis, treatment and recovery.

Talking to Physicians and Other Treatment “Team” Members:

Going back to Combs’ hindsight of education, caregivers should proactively take steps to be involved in patient care and the treatment spectrum. Treatment for ovarian cancer can range from surgical procedures to chemotherapy to radiation and variations in between. In Combs’ case, “I had surgery only. I took methotrexate for about three months, but there wasn’t much ‘actual’ caregiving. I drove myself to appointments to have my blood tests monitored and followed up with my doctor.”

Learning about the risks of ovarian cancer, how it is diagnosed, staged and treated can make a difference in how a woman copes with her diagnosis. When a woman realizes that she is not alone in the doctor’s office to ask questions, her confidence can improve and she realizes that someone else is “in her corner.”

Between appointments there are many ideas and thoughts that may come to mind. Here are some ways to remember those for the next trip to the doctor’s office:

  • Keep a journal of questions and recent activities to share with the doctor

  • Keep a list of symptoms noticed between appointments

  • Research the latest material on ovarian cancer and ask the doctor about advances in science

Dr. Don Dizon, FACP, Assistance Professor, OB/GYN & Medicine at Brown Medical School is well-known for his work in clinical trials in ovarian cancer, yet he has interesting insights into the role of caregivers during the various phases of the disease. He offers this advice, “be willing to talk to the patient about their fears. Symptoms can change day-to-day, and the caregiver can help make sense of what is happening to the patient.” In addition, he notes that patients may need an advocate to help navigate the “maze” of medical jargon. One of the best ways that caregivers can do this is through educating themselves and then the patient about ovarian cancer.

Self-Care:

As the caregiver, you may find there are times when you will need to take a break from the everyday stresses. While you are not the one undergoing treatment, caregiving can take a serious toll. Some studies indicate that caregivers face stresses like:

  • Inability to control the situation their loved one faces

  • Feeling overwhelmed

  • Role confusion or sudden role changes (moving from spouse to caregiver or adult child to caregiver of a parent)

  • Not managing expectations – trying to do too much too quickly

If caregivers do not manage their own personal feelings and emotions with relation to their already pressure-packed situation, they can set themselves and their loved ones up for even more demanding situations. Burn-out in caregivers is common, unfortunately. It manifests itself in many ways, including:

  • Illness for the caregiver

  • Apathy about their role as caregiver

  • Depression

  • Social withdrawa

  • Irritability or increased anxiety

There are simple activities that can go a long way in improving caregiver attitudes and relieving stressful situations. Some of these include:

  • Setting realistic limits

  • Taking a walk

  • Keeping a journal of feelings and emotions

  • Joining a caregiver support group

  • Talking to friends

  • Going on a mini-shopping spree

  • Eating lunch out with a friend

  • Learning a new hobby or restarting ones you may have put aside.

By paying attention to your needs during these challenging times, you can improve your ability to care for your loved one. In addition, redefining “success” in your given situation can also help to overcome some of the anxiety of the situation. Redefining success means recognizing that reaching smaller goals during the treatment and recovery process can be just as rewarding as overcoming large barriers.

If Death is Unavoidable:

For women facing stage III or IV ovarian cancer, treatment may only delay a woman’s death. Survival statistics for advanced ovarian cancer are low, especially the longer the disease is undetected and the further it has spread throughout the body. If the cancer recurs in other areas of the body, it may also be a sign that the disease has reached terminal stages.

Some women at this point may decline treatment, preferring instead to enjoy the time that they have left with their friends and family. Chemotherapy can be difficult to endure, and if the patient feels that treatment will only prolong the disease and not offer a cure, she may feel that there is little reason to begin. Whatever her decision, caregivers need to stay informed and be supportive. Communication can be especially difficult during these months as each person struggles to “fit a lifetime” into a few short months or weeks.

Learning about palliative care or hospice care options may be especially beneficial. Palliative care or comfort care is often used when patients are no longer seeking a cure and, instead, are looking for ways to enjoy the remaining months or weeks of their life. Caregivers may find it difficult to move from curative treatment to comfort treatment. The National Comprehensive Cancer Network and the American Cancer Society partnered together to develop Advanced Cancer and Palliative Care Treatment Guidelines for Patients. This guide can be downloaded at http://www.cancer.org/downloads/CRI/F9643.00.pdf. It offers insight into end of life decisions and suggestions that may make conversations surrounding palliative care easier for the patient and the caregiver.

Honest communication is important to the patient and the caregiver when facing a diagnosis of ovarian cancer. Caregivers play a critical role in helping the patient cope with emotions and feelings at home, as well as sorting out the medical information they will need to understand during their treatment. Combs offered this one last piece of advice when it comes to understanding ovarian cancer treatment: “It’s a matter of mind over body. Your caregivers can help you sort out what is right for you, but education is important for everyone.”         

        

 

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