Ten Things You Should Know

When you receive a cancer diagnosis, it is easy to become overwhelmed with the amount of information you receive. As you begin to digest the news and make plans, consider these 10 suggestions for moving forward more confidently. They are lessons learned from cancer survivors, medical professionals and other people whose lives have been affected by cancer.

1. Be a student of your disease. Educate yourself about your diagnosis. It will help you be more confident in the decisions you make in the future. Knowing the resources to use makes a big difference. To ensure you get information from reputable and legitimate sources, start with the resources listed in this guide or visit PatientResource.com. Ask your health care team about recommended advocacy groups, support groups and other reputable resources.

2. Second opinions are encouraged. You will benefit from seeking the input of a doctor or cancer center that has extensive experience treating your specific type of cancer. Pursuing another opinion does not mean you doubt your doctor’s capabilities. Every doctor’s experience is different, and you deserve to learn as much as you can about your diagnosis and treatment options, especially if you have a rare diagnosis. A second (or third or fourth) opinion will either confirm the diagnosis or offer additional information for you to consider.

3. Genomic/molecular testing offers valuable insights into ways your cancer may be treated. The dramatic progress being made in the diagnosis and treatment of many types of cancer is due to this specialized testing. The results reveal specific information about the genes, proteins and other factors involved with your cancer. As a result, doctors are able to select therapies based on the tumor’s DNA. Depending on the gene alteration your cancer has, a drug that is designed to target that abnormality may be available, providing you with a more personalized treatment plan. Ask your doctor whether this testing has been (or can be) done.

4. Open and honest communication is vital. Maintaining a good relationship with your health care team paves the way for a better treatment experience. Remember that you are a key part of your medical team. The team will rely on you to share how you are feeling, keep your appointments and stay on schedule with treatments. Determine the best way to contact your nurse navigator and others with your questions between appointments, such as by phone or through the online portal. Also make sure a caregiver or loved one has signed the appropriate forms to be able to communicate with the medical team.

5. Your treatment plan may change. Cancer can be unpredictable, so do not be surprised if your original plan changes. Your doctor will monitor you closely at regularly scheduled follow-up appointments to ensure your therapy is producing the expected results and for a possible recurrence or other health issue. Diagnostic lab and imaging tests may indicate a change in your diagnosis. Between appointments, be sure to alert your medical team if symptoms occur.

6. Clinical trials should be explored. These research studies could offer a valuable treatment option to consider. In some cases, a clinical trial may be your best first treatment option, especially if your diagnosis has few or no approved therapies. A trial may also be desirable if your current treatment becomes less effective, stops working or has side effects that disrupt your quality of life. Sometimes, when cancer progresses, genomic testing may reveal a new mutation that could make you eligible for clinical trials.

7. Your treatment will include side effect management. Many side effects can be prevented, and most can be managed to help you maintain your desired quality of life. Your health care team will rely on a group of services known as supportive care to address the physical, emotional, practical, spiritual, financial and family-related challenges associated with cancer.

8. Telehealth may be available. Medical appointments by computer and phone do not replace in-person appointments but may be a convenient option if you live far from your doctor’s office, do not feel well enough to go to an appointment or are at risk for infection. Ask your medical team about telehealth and whether it is covered by your insurance.

9. Surround yourself with support. Start by drawing on the support of your family, friends, neighbors and spiritual community. They can offer practical help, such as running errands, carpooling or making meals. Don’t forget to take care of your emotional well-being, too. Find a support group for cancer survivors online or in your area. Many offer peer-to-peer counseling. Opening up to people who have had a similar experience can offer valuable comfort and support. Talking with a licensed counselor may also help you work through these and other difficult emotions.

10. Never lose hope. Advances in cancer treatment happen all the time. Connect with a resource who can help you stay tuned in to the latest developments. Find something that you want to live for, and make it a priority to live each day to the fullest.