Finding Stability

Managing Chronic Cancer: How to Live With Cancer That Doesn’t Go Away

Life can be messy and complicated, but living with cancer multiplies both the messiness and the complications. Getting organized will help you manage chronic cancer.

Chronic cancer refers to cancer that doesn’t go away or have a cure, but can be managed over the course of one’s life, according to the American Cancer Society. Certain types of cancer including cancers of the blood, like LGL Leukemia and other leukemias and lymphomas, and certain forms of ovarian and bladder cancers, are considered chronic and are treated as lifelong conditions. Chronic cancer also includes metastatic cancer (cancer that has spread to other parts of the body). Living with cancer that doesn’t have an end point can be challenging in many ways. Learning how to manage the disease over time is essential to maintaining your health as well as living an enjoyable life.

Managing Treatment

Adapting to Changes

One issue with chronic cancer is that your treatment may change over time. Treatments can stop working or cause undesirable reactions, or new treatments may become available for your type of cancer. Along with every new kind of treatment, there is an adjustment period. Remembering the ultimate the treatment objective, which is to help you maintain the best quality of life for as long as possible, can ease your transition.

Planning

Your current course of treatment may have specific steps for you to follow to maintain energy, consume the right foods and stick to a strict medication regimen, and you’ll need to organize your day around those steps. Working with your care team or family members on a daily plan or schedule can be very helpful for you. Be sure to update your daily plan accordingly if your treatment changes.

Records

Buy a notebook for tracking conversations with your doctors, your symptoms, changes in your treatment plan and associated instructions. Adhesive tabs can be attached as permanent bookmarks for quick reference. You can also utilize calendar apps, like the options Lifehacker lists, for this. As well, maintain a filing system for papers such as medical records and insurance documents. Storing these items electronically can be helpful, too.

Most hospitals and cancer centers have secure electronic portals like MyChart (offered at UVA), giving patients easy online access to medical information, including medication lists, appointments, test results and more. MyView, also offered at many medical centers including UVA, is an electronic repository for images such as CT scans, MRIs, PET scans and other imaging-related media.

Managing Resources

Energy

Your energy levels may fluctuate over time and in response to new treatments, but a pattern will emerge indicating the times you feel best each day. If you can identify and map this pattern, then you know when to schedule activities. Tracking these patterns helps your doctor understand how your body is responding to treatment. If the pattern starts changing, that’s something to share with your team.

Money

Money is another resource that needs to be carefully managed by people with chronic cancer. The cost of co-pays for treatment may be prohibitive and the lost hours at work may cut into your savings. Additionally, you may need to hire a housekeeper to clean and prepare meals, particularly when you experience symptoms or side effects like fatigue or nausea.

There are some things you can do to address these issues. Talk to your doctor about the cost of co-pays and any issues you may have regarding insurance coverage. Pharmaceutical companies usually offer discount cards or programs for new or very expensive medications, so be sure to check online for a printable discount card or ask your doctor or pharmacist for details. As well, don’t be shy about asking for help with cooking and cleaning. Your family and friends want to support you, but sometimes they need direction.

Job Security

If you’re concerned about keeping your job, Cancer and Careers advises you be upfront with your boss about your cancer diagnosis in order to protect your Americans with Disabilities Act (ADA) and Family Medical Leave Act (FMLA) rights. If you reach a point when you can no longer work, you can file for disability through Social Security. This should be done as early as possible because the application process takes a while and may require appeals before you get this coverage.

Managing Emotions

Relationships

Cancer complicates relationships. Your symptoms and side effects might make it hard to maintain intimacy, which can be addressed if you are open with your partner and your doctor about what you’re feeling. The fluctuating energy, constant appointments and faltering funds can put a damper on your social life, too. Explain your situation to your friends, and ask them to keep inviting you to do things, even if you say no a lot.

Support

Cancer is emotionally draining. Grief, sadness, anxiety and fear are common, as is guilt. You may feel guilty about the financial impacts of your disease, or your lack of energy to play with your kids and be there for your spouse. Talk to your oncologist about these feelings to ensure you are being treated properly for depression or anxiety. Look for online resources to help you cope and find local support groups, too. Getting to know others who face similar issues can be the best way to learn to manage your emotions and adjust to life with cancer.

UVA Cancer Center has advanced treatments and clinical trials for many chronic forms of cancer. If you’d like a second opinion, please call (434) 924-9333.

Learn More
Judy Schwartz Haley
Judy Schwartz Haley