Talking About Your Cancer Diagnosis
This article addresses some common concerns people face when first hearing a cancer diagnosis, while going through treatment and into survivorship.
How do I talk to friends & family about my diagnosis?
Speaking with family and friends may seem scary but remember that if you don't share with them what is going on or how you are feeling then those people cannot provide you support. Start out by confiding in a few people who you are very close to- family or friends. Tell them whatever you are comfortable sharing. It does not have to be a long discussion.
If you need help with this, an Oncology Social Worker can help get some ideas about how to get started. Joining a support group is another way to gain ideas from others about how to get feel more at ease with sharing.
How do I talk to my children about my diagnosis?
The first step for any family is to talk with your children. Ask them what they know about what is happening with their parent, what questions they have, and what some of their fears/thoughts may be. Don't be surprised if their thoughts seem self-centered, this is very normal, particularly for younger children. They want to understand how this will affect them. Be honest in answering this – maybe it will be harder to spend time as a family, but assure them you will do your best to support the whole family.
Secondly, be sure to talk to your children's school/teachers about what is happening with your wife. Teachers are VERY savvy to subtle behavior changes or performance changes that may be coming about due to a family member's diagnosis and treatment.
Third, enlist the help of your extended family, friends, community and church supports to take turns with things like babysitting or maybe taking the kids to a special event. It's important to help your children maintain as much normalcy to their lives despite the massive disruption and changes posed by a cancer diagnosis. This is where extra persons can help you get your kids to their band concert or soccer practice.
Locally, talk with the oncology team, in particular, an oncology social worker, who can help you with local resources that may be available. Learn more about talking to your kids about cancer.
Some great resources for kids include:
Camp Kesem is a national program with local summer camps throughout the country. This is a great opportunity for your kids to get away with other kids who have "been there", while still having professional supports.
There are also plenty of books written by and/or for children of all age levels.
How do I talk with my employer about my diagnosis?
You are not legally obligated to inform your employer of your cancer diagnosis.
If you are applying for FMLA coverage (which protects your job for up to 12 weeks), you will need to supply medical verification of your diagnosis and treatment to human resources; however, your direct boss or co-workers are not informed about your medical diagnosis. It is YOUR decision to disclose your cancer diagnosis.
For more great information about working with or after cancer diagnosis and treatment I recommend two great resources
You should also talk with human resources about your options for applying for disability through your employer as well as how to maintain your health insurance coverage through COBRA.
Balancing work, family, children and cancer treatment
Balancing work, family, children and cancer treatment can be very challenging for some.
This would be the time to call on those that have offered to help you when you were first diagnosed. Friends, neighbors, co-workers all want to know what they can contribute. Be thinking about what kind of concrete help you need. For instance: childcare, shopping, meal prep, and housekeeping just to name a few. People want to know what they can do for you and your family. Remember to make time for yourself- even if it is a mere 30 minutes to take a walk or a bath or sit and look at a magazine or book. Adjusting your expectations about what all needs to be done may also be necessary.
Some online "support pages" allow you to set up a website where you can keep others informed about how you are doing (cutting down on phone calls) and keeping a calendar of needs. Post needs such as meals, driving kids to events, a ride to treatment and friends and family can sign up to help. Some sites that offer these pages include: mylifeline.org, caringbridge.org, carepages.com and navigatingcancer.com
Cancer and Careers is a wonderful resource to help balancing work and cancer treatment and learning about your rights and requirements regarding the workplace. A support group may also be a good resource, as you may get ideas and network with others in your situation. Look for a Cancer Support Community or Gilda's Club in your area.
Is it normal to be "depressed" about a cancer diagnosis?
Some degree of depression is common in people who are coping with cancer, and some cancers are more frequently associated with depression, like those in the pancreas and lung. About 25 percent of all people with cancer experience clinical depression, causing distress, impaired functioning, and a decreased ability to follow a treatment schedule. Not surprisingly, depression is seen more often in people with advanced stages of cancer, those with increased disability due to the cancer and those who have poor pain control.
It is not uncommon for people who learn they have cancer to go through a period of shock, disbelief or even denial. For many, understanding what to expect and gaining more knowledge about the cancer makes it easier to move forward. If the initial sense of hopelessness or helplessness persists and is accompanied by feelings of despair, guilt and hopelessness then the possibility of significant depression is real and should be discussed with the oncology team.
Counseling and medications can make a very big difference in how a depressed patient feels and improve other symptoms at the same time. Treatment for depression has proven benefits for persons with cancer. The following is a listing of organizations that have trained psychosocial oncology professionals that provide therapy/counseling for people after a cancer diagnosis:
You can also contact your local cancer treatment facility to inquire about psychosocial support. Mostly every cancer center has a counseling service for oncology patients.
Finishing treatment may bring new feelings of anxiety
Fear of recurrence or fear of your cancer coming back is one of the most common worries that anyone with a cancer diagnosis goes through when treatment ends and a very normal reaction. You are not alone in these fears, but knowing what triggers your fears and how to manage your feelings can help you cope. There are many factors that may influence your fear of the cancer coming back. Often, these fears are shaped by your own personal coping style, life style, and situations affecting your life.
During treatment you are completely immersed in the "cancer world" and ending treatment often brings up anxiety as many people feel protected and that they are doing something to treat their cancer. Moving forward may be hard, but remembering that you did everything you could to treat the cancer can give you strength through this time. Over time this feeling should get less as your start to develop the "new normal." Now you have time to slow down, process this experience and how it has affected you and how your life has changed. Many times during treatment you are in "crisis mode" as well as just trying to manage your day-to-day life while managing side effects of your treatment.
If you find it hard to move forward, it may be helpful to talk about your feelings. Sometimes people find it helpful to talk with someone outside the family such as a mental health professional, attending a support group or talking to a family member or friend who you trust. It is important to know that you are not alone and that there are resources available to help you through this time.
Dealing with a "chronic cancer"
Cancer can become a chronic (ongoing) illness that never goes away completely. Although recurrent cancer may not be cured, it can often be controlled. Some cancers recur and then go into remission and the cycle gets repeated for years, which means the cancer can be managed as a chronic illness.
These repeated recurrences can become discouraging and exhausting. You may feel more cautious, guarded and less hopeful than ever before. You may feel disappointed in your body, feel as though it has let you down. It is normal to feel angry and upset. Some degree of depression and anxiety is common when you are living with this uncertainty. If you find that you are upset for long periods of time or that these feelings are interfering with the day-to-day activities for you then it is time to seek help for depression and anxiety. Anxiety and depression can be treated with medication, psychotherapy, or both.
You may need to talk with someone about your feelings and gain the support of others. Some people find support at their church or synagogue. Some join a support group in person or online.
Support in any form gives you a chance to talk about your feelings and develop skills to be able to cope ongoing.
What if I don't have access to an oncology social worker?
You can access assistance with coping with financial concerns, insurance problems and co-pay assistance from a variety of resources—here is a list of my go to resources:
- The American Cancer Society or 800-ACS-2345 (general cancer information, financial assistance and supportive services)
- Cancer Care (financial assistance, co-pay assistance, support and education)
- Cancer Legal Resource Center (legal assistance, insurance education, workplace issues)
- Cancer and Careers (work place and disability education)
- PanCan Pancreatic Cancer specific support, education and resources
- Cancer Support Community Cancer Support and Education
These resources can be a great jumping off point for getting the support and education you need.