Receiving a diagnosis of ovarian cancer from your doctor is just the beginning of a very personal and unique journey for you and your loved ones. This path can be scary at times, and will likely present a variety of emotional and physical challenges. One thing you should know is that you do not need to walk this path alone.
After being diagnosed with ovarian cancer, you probably will feel uncertain and have many questions about this disease. How will it affect my body and my life? What's the best plan of action to manage the disease? What treatment side effects will I experience? We have many resources to empower you with credible information that will answer your commonly asked questions. The more you know, the easier it will be to work well with your healthcare team, manage your cancer and make the best decisions for you.
Depression, Anxiety and Distress
"I just don't seem to enjoy things like I used to. I used to love a good movie - now they all seem to bore me and I just feel like sleeping."
"I can't seem to stop thinking about the cancer and what might happen. Even when I'm with other people and I'm having a good time, worries about the cancer pop into my head."
If these thoughts sound familiar to you, you are not alone. Having ovarian cancer is a stressful experience, and the ways you have previously coped with problems may not work as well when you are confronting a serious disease and difficult treatment. Many women with ovarian cancer report psychological distress; studies have found higher levels of anxiety and depression among women with ovarian cancer than among women who do not have cancer.
What Should You Do?
A good place to start is to talk about your worries and distress with a good friend or family member, or perhaps, you might consider joining a cancer support group. While you probably have many friends who want to help you, keep in mind that not everybody is a skilled listener. Some people may try to tell you that you shouldn't focus on your problems and that you need to have a positive attitude and be hopeful. While hope and a positive attitude are good things, it is important to address the underlying issues that are contributing to your negative mood, to help you gain more control over your feelings. All of your feelings about your cancer experience are real and valid, including negative feelings. Try to find a confidante who can really listen to you talk about how you are feeling, rather than telling you how you should be feeling!
In addition to talking about your distress, a number of other self-help techniques may help you deal with distress. Here are some for you to try:
- Relaxation exercises: There are several relaxation techniques that, with practice, can help relieve your anxiety and improve your mood. Relaxation exercises generally involve deep breathing while imagining pleasant scenes or memories (guided imagery) or systematically tensing and relaxing muscles (progressive muscle relaxation). There are a number of books and tapes that can help you learn and practice relaxation exercises.
- Exercise: Moderate exercise like brisk walking can also be helpful in managing stress and improving mood, but be sure to talk to your doctor to make sure that exercise is appropriate for you.
- Get out and do something fun! Scheduling activities you enjoy, even when you're feeling down, can help improve your mood by distracting you from the stress you're experiencing. The activities don't have to be complicated or tiring, just simple things that you usually enjoy but haven't done as much since you got sick. For example, you could meet a friend for a cup of coffee, call a friend you haven't seen in a while, or go to the store and buy yourself some flowers. Picking activities that would force you to do something intentional and active will be more likely to improve your mood than passive activities such as watching TV. Put your activities on a calendar or schedule so that you make sure you do them.
When More Help Is Needed
Sometimes women with ovarian cancer experience distress that is serious enough to warrant treatment. This is particularly true for women who have had episodes of depression or anxiety in the past, or whose physical symptoms are severe. If you find you are experiencing symptoms like sadness and depression, feeling worthless, a lack of enjoyment of activities that you usually find pleasurable, excessive crying, or feeling sad and depressed most days for two weeks or more, you should discuss this with your doctor or a mental health professional. If you find yourself thinking about hurting yourself or that you would be better off dead, you should talk to your doctor or call a local mental health crisis center right away. You should also seek help if you find that your worries or any symptoms you are having are interfering with your usual activities or your relationships with the people close to you. For example, if you are feeling so anxious about leaving the house that you can't work or participate in social activities you usually enjoy, you may have an anxiety disorder that needs further treatment.
Many cancer patients have found psychotherapy to be helpful; sometimes talking with an objective professional can be just the thing to help you gain the perspective and strength you need to cope with your particular situation. Your doctor may be able to recommend someone; you can also consult one of the websites listed below. There are proven treatments to help people deal with depression and anxiety; both medication and psychological or behavioral treatments have been found to be effective in relieving distress in cancer patients. If your doctor prescribes medication, be sure to take the medication as directed by your doctor. These medications often take six weeks or more to start to work. If you find, after giving the medication time to work, that it is not helping you or it is causing undesirable side effects, talk to your doctor. There are many different kinds of medication to help people with symptoms of psychological distress. Sometimes it takes a little while to find the one that works best for you.
When people hear the term "spirituality" they often think about religion. Spirituality has been defined as a person's sense of peace, purpose, and connection to other people and how a person views the meaning of life. A person's religious practice may be a way of expressing her spirituality although it is important to acknowledge that a woman may be very spiritual but not religious. Either way, a woman's spiritual perspective may help her cope with a life-changing event such as a diagnosis of ovarian cancer. Cancer affects every part of a woman's life - life at home, at work, with friends and with family. Some women may want their doctors to discuss spiritual concerns with them, while others may not. If your spiritual or religious beliefs influence the manner in which you make medical decisions, you should let your healthcare team know. You should expect that your doctor will respect your religious or spiritual views, regardless of whether you consider yourself to be spiritual/religious or not.
While researchers do not know for sure if spiritual and religious well-being are associated with a better quality of life, some experts believe that it may help a woman's positive mental attitude. This, in turn, may help her better cope with the disease and treatment process.
If religion or spiritual practices such as meditation are a normal part of your life, then you may find that you will seek this support on a regular basis during the diagnosis and treatment process. Likewise, if you want to speak to someone about spiritual or religious concerns but do not have access to these individuals, let your hospital social worker know or speak with a member of your health care team to ask how you can contact a hospital chaplain, clergy, rabbi or support group that addresses spiritual concerns during illness.
In times of crisis, many women may turn to their church or temple for spiritual and social support to help cope with the day-to-day concerns of living with ovarian cancer. The NCI states that "Spirituality is generally recognized as encompassing experiential aspects, whether related to engaging in these practices or to a general sense of peace and connectedness." Women may find strength in their religion or spiritual outlook; it may help them connect emotionally to other people in turn helping them cope with their disease and begin the healing process.
The following list includes self-help books that may assist in teaching skills to manage stress. If you are experiencing clinical levels of distress, you may need to see a mental health professional. The websites listed below provide information about qualified mental health professionals in your area.
The Relaxation & Stress Reduction Workbook (New Harbinger Self-Help Workbook) (Paperback)
by Martha Davis, Elizabeth Robbins Eshelman, Matthew McKay Patrick Fanning, 2008, Sixth Edition.
Mindbody Cancer Wellness: A Self-Help Stress Management Manual
(Paperback) 2003, by Morry D., Ph.D. Edwards
Mind-Body Unity: A New Vision for Mind-Body Science and Medicine
(Hardcover) 2003 by Henry Dreher
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness
(audio) 2008 by Kabat-Zinn JonBy Jon Kabat-Zinn.
Thoughts & Feelings: Taking Control of Your Moods and Your Life (Workbook Workbook) (Paperback)
2007 by Matthew McKay, Martha Davis, Patrick Fanning
Learned Optimism: How to Change Your Mind and Your Life 2006
by Martin E. P. Seligman.
Mind over Mood: Change How You Feel by Changing the Way You Think
1995, by Dennis Greenberger & Christine Padesky.
The website for the American Psychosocial Oncology Society (APOS) offers a link to a new referral help line for individuals facing cancer and for caregivers. The referral program provides local counseling and support services throughout the United States, including psychiatrists, psychologists, nurses, and social workers trained to manage cancer-related distress. Click on Referral Help Line in the upper left corner of the screen when you access the home page website for APOS.
The website for The American Association for Marriage and Family Therapists provides access to a searchable database for locating licensed marriage and family therapists. Under the heading "Public," click on "Locate a Family Therapist Near You."
This website for the National Register of Health Service Providers in Psychology provides a searchable database for locating doctoral level psychologists throughout the United States and Canada. After accessing the website, click on the link under "Find a Psychologist." Begin searching by clicking on "Public."
Founded in 1982, The Wellness Community is an international non-profit organization dedicated to providing free support, education and hope to people with cancer and their loved ones. Through participation in professionally-led support groups, educational workshops, nutrition and exercise programs, and stress-reduction classes, people affected by cancer learn vital skills that enable them to regain control, reduce isolation and restore hope regardless of the stage of their disease. The Wellness Community provides support, education and hope for people with cancer at over 100 locations worldwide including 24 U.S. based and 2 international centers with 73 satellite and offsite programs and online at The Virtual Wellness Community.
Financial concerns can be a major source of stress for women diagnosed with ovarian cancer. Specifically, financial issues can be related to employment, health insurance and travel and hotel expenses if you choose to travel for some of your treatment. There may be some steps you can take to minimize some of the financial stress.
If you are currently employed, you may wonder how your diagnosis and treatment will affect your job and what impact this may have on co-workers. Fortunately, a diagnosis of cancer is considered a "disability" under the 1990 Americans with Disabilities Act (ADA). This law covers employees of the legislative branch of the U.S. Government, state and local government entities, employment agencies, labor unions and employers with more than 15 employees.
It is a good idea for you to check with the personnel or human resources department at your workplace to find out more about specific employment policies that may apply to you. You should be aware that certain situations exist in which the employer may not be required to provide accommodations. In addition, small employers are not subject to federal law (in these situations, check with your state's agencies, congressional representatives or senator to find out more about what policies are in place to protect you). For more information on the ADA, check with your local American Cancer Society office or on the web at www.cancer.org or the National Coalition for Cancer Survivorship at www.canceradvocacy.org for more information on the ADA.
Another federal law is the Family and Medical Leave Act of 1993 (FMLA). This law, along with certain state laws, stipulates that employees may take up to 12 weeks of medical leave during a 12-month period. The leave can be taken all at once or can be taken in different time allotments, depending on what the employer and employee agree upon. The FMLA does not require that employees receive salaries during medical leave; the law does provide that employees retain their job positions and all benefits.
A lot of attention has been given to concerns about health insurance coverage for individuals diagnosed with cancer. Specific areas of concern include restrictions on where you can receive your cancer treatment, maximum dollar amount of insurance coverage provided, and fear of losing coverage. The key to managing these concerns is to understand your insurance plan. There are some things you can do to help de-mystify confusion about health insurance.
If you have insurance coverage through a group health insurance plan offered by your employer (or your spouse's employer):
- Ask your plan's administrator or benefits representative for materials (e.g. booklet or website) that describes your insurance plan,
- Obtain a copy of the actual plan from the insurer,
- Read these documents very carefully, paying particular attention to exclusion policies,
- Find out whether special requirements exist, i.e. pre-certification, claim submissions, extra costs for going out-of-network for doctors or hospitals, inpatient vs. outpatient coverage for certain treatments,
- Find out whether clinical trials are covered (understand your plan's definition of "experimental" or "investigational" treatment), and
- Be aware that federal and state laws exist to protect you from losing your insurance coverage.
If you have insurance through a government-sponsored program such as Medicare or Medicaid, you can log on to www.cms.hhs.gov or call (410) 786-3000 for more information.
If you do not have insurance coverage call the American Cancer Society office for available resources: 1-800-227-2345 (1-800-ACS-2345).
Since understanding and working with insurance plans can be extremely time-consuming and detail-oriented, ask a family member to help you manage this process; it is often helpful to have another person review the paperwork.
The National Coalition for Cancer Survivorship provides a downloadable PDF of a book entitled What Cancer Survivors Need to Know About Health Insurance on its website: www.canceradvocacy.org/resources/.
Social Security Disability Insurance
Some women may be unable to work due to progression of their ovarian cancer or because of continuous cancer treatment. These women may be eligible for Social Security Disability Insurance (SSDI). The SSDI pays monthly disability benefits to individuals who meet strict eligibility criteria. Specifically, Social Security must determine a woman's inability to work as she did before due to her ovarian cancer as well as her inability to work for at least 12 months. Monthly benefits are based upon the individual's income history. To learn more about Social Security Disability Insurance and whether you qualify, contact Social Security at 1-800-772-1213 or visit the website at www.ssa.gov and click "Disability and SSI."
Travel and Lodging
If you need to travel beyond your local area to receive treatment or get a second opinion, costs associated with travel (gasoline, airfare) and lodging (hotel and food) can add up quickly. If geography is a limiting factor and there are no gynecologic oncologists in your area, you may have to travel to have your surgery performed by a gynecologic oncologist. Your gynecologic oncologist may be able to coordinate your chemotherapy with a medical oncologist in your hometown.
Many top cancer centers are accustomed to out-of-town patients and have personnel on staff who assist with travel and lodging information and arrangements. These cancer centers often have special arrangements for discounted airfare, car rental, and hotel rooms. Some centers even have onsite housing available.
Other resources include:
If you are considering a clinical trial but the location of the trial is far from where you live, ask the sponsor of the trial or check with your insurance plan to see if either will cover part/all of your travel costs.